tag:blogger.com,1999:blog-44626563722829443992024-03-05T17:38:03.256-08:00Even with PKD, Life Goes OnThoughts, Reflections, Opinions and more on life, education, politics, television, music, kidney disease, polycystic kidney disease (PKD) and the NBA among many other things from a Filipino medical educator with PKD.cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.comBlogger127125tag:blogger.com,1999:blog-4462656372282944399.post-81846962371307438452019-11-26T18:13:00.002-08:002019-11-30T15:57:18.471-08:00My Hemodiafiltration Experience at The Dialysis Co in Cebu CityI have been on hemodialysis in Cebu for more or less 7 years already and in the course of dialysis, I have been to different dialysis centers and have experienced low and high flux dialysers with the conventional hemodialysis. When the opportunity presented itself that I would be able to try a relatively more advanced form of renal replacement therapy known as hemodiafiltration (HDF) here in Cebu, I grabbed the chance. And here is the account of my experience.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4JDwynMaK5obvIFleU_UyL5caoZU4BtHYVgBy5pYOsnMh4sNH6YbWwhbkgj81o0OeEmqH0YCEGBqtmMbmApLa3IebeAOx56IOXXH8J1NjT64AenApQlIvgyXDkKKGh8KqDU6rGTfwWuc/s1600/hdfmachine.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="408" data-original-width="306" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4JDwynMaK5obvIFleU_UyL5caoZU4BtHYVgBy5pYOsnMh4sNH6YbWwhbkgj81o0OeEmqH0YCEGBqtmMbmApLa3IebeAOx56IOXXH8J1NjT64AenApQlIvgyXDkKKGh8KqDU6rGTfwWuc/s320/hdfmachine.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the HDF machine</td></tr>
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For starters, <a href="https://www.ackdjournal.org/article/S1548-5595(07)00056-0/fulltext">hemodiafiltration</a> (for those curious) is a form of renal replacement therapy which combines diffusion (what happens in hemodialysis) and convection to enhance removal of solutes at a wider range of molecular weight including middle molecular weight ones not effectively removed by usual hemodialysis. This convection removes these solutes through fluid flow and involves the use of replacement fluid to reach target fluid balance. What does this mean? Greater clearance of urea, phosphate (one of the major concerns of dialysis patients) and Beta2- microglobulin. Beta2 microglobulin is implicated in a disabling condition for chronic dialysis patients known as dialysis-related amyloidosis where patients experience among others, joint pains and pathologic fractures as a result of accumulation of beta2 microglobulin deposits. Others would have carpal tunnel syndrome. The heart is also believed to be involved in <a href="https://www.sciencedirect.com/science/article/abs/pii/S1054880719300833">cardiac amyloidosis</a> typically associated to use of low flux dialysers.</div>
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Now back to my experience. </div>
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The Dialysis Co (TDC) is a new free-standing dialysis center in Cebu City located on the Upper Ground Floor of the MDCT Building, Leyte Loop, Cebu Business park just near the Ayala Center mall Cebu which offers hemodiafiltration. This is where I tried hemodiafiltration.</div>
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On the way to the center, I passed by Camotes Road then parked on the 2nd floor of the said building where there are reserved spots for TDC near the ramp. The where there is an elevator going to the upper ground floor where the dialysis center is situated.</div>
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This is what will greet you on the entrance. A very refreshing atmosphere which does not have a hospital vibe. Well, it's more of a spa vibe that can be felt here. See for yourself.</div>
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The waiting area is very spacious and has a TV screen where netflix shows are played.</div>
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Inside the actual treatment area has the same relaxing feel.</div>
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Does not look like a dialysis facility, right?</div>
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So it was time to take my weight to know how much fluid will be taken from me.</div>
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A visual inspection of the facility reveals the presence of several equipments including emergency equipment. One could not help notice the unique chairs which do not appear to be like the usual Lazy Boy type chairs in dialysis centers.</div>
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The special chair which has movable arms is "armed" with what appears to be a Digital TV with ABS CBN TV plus box for each chair and a food tray. One could bring ear phones or even a USB to play your favorite movie in this TV.</div>
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The "dialysis chair" has controls where you can set the inclination of the chair, the height and the length of the lower part of the chair to achieve the best comfortable position for you.</div>
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Notice also the brown button for calling the nurse in the station. You won't need to shout or fling up your arms to get noticed when you need to call a nurse. By the way nurses to my knowledge have 1 year to 7 years experience as a dialysis nurse.</div>
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And now to the hemodiafiltration itself. For my sessions the dialyser is a special one considered to be a "super hi-flux" dialyser capable of relatively better clearance.</div>
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Based on <a href="https://www.bbraun.com/en/products/b0/diacap-acute.html">company dialyser information provided </a>online, it is considered highly biocompatible Polysulfone membrane allowing high clearances.</div>
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My blood flow was set at 300 and Nadroparine, a low molecular weight heparin was used for my case to keep the blood from clotting in teh dialyser and the tubes during the therapy.</div>
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The duration was also 4 hours like the usual dialysis but time just flew by fast since you won't feel the time really as you are either entertained by what's showing on the TV screen or you are preoccupied with what's online as one can access the internet via wifi.</div>
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I had no cramps during and after the session and I did not feel weak afterwards. You may have a different experience but I am just relaying mine. In fact I was able to drive, fetch my wife from work then drive home.</div>
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Here is the "tape" they used on my access puncture site.</div>
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Notice the round thing underneath that applies pressure to the site to prevent bleeding. And by the way, appropriate blankets are provided for the very cool facility and in case it is really cold, there are goose neck lamps and hot water bag available. </div>
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Overall, the experience was very nice and went without incident. I even had a bonus body composition monitor or body water analysis which I am told is offered by this center as additional service.</div>
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I was also told they offer various packages which come with free B.Braun Nexadia Patient Data Therapy Card.</div>
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If you want your questions about them answered, you may contact <span style="background-color: white; color: #1c1e21; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;">(032) 254 8501. If you want to check the facility yourself, they are located at </span><span style="font-family: inherit;"><span style="background-color: white; color: #1c1e21;">Unit 2, U/GF MDCT Building, Leyte Loop Cebu Business Park </span><span style="background-color: white; color: #1c1e21;">Cebu City. </span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #1c1e21;">As for me, I want to do research about HDF and its impact on the patient. I hope to be able to see for myself actual blood test results some length of time after hemodiafiltration. I hope to have that opportunity soon.</span></span><span style="background-color: white; color: #1c1e21; font-family: inherit;"> </span><br />
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<i><span style="font-size: x-small;">NOTE: Photos of the dialysis center taken with permission from the medical director and owners of the facility.</span></i></div>
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cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-18372321620613261612018-07-17T05:25:00.002-07:002018-07-17T05:27:02.684-07:00A Petition for NCDA to Revisit the Definition for Disabled and Consider CKD or Chronic Dialysis Patients as PWDs<br />
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<span style="color: #2a2a2a; font-family: "arial" , "sans-serif";">July 17,
2018<br />
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<span style="background: white;">Sec. Virginia Orogo </span><br />
<span style="background: white;">Secretary, Dept. of Social Welfare and
Development</span><br />
<span style="background: white;">Chairman, National Council for Disability
Affairs<o:p></o:p></span></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">NCDA Building, Isidora St.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Brgy. Holy Spirit, Diliman, QC<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Dear Secretary/Chairman Orogo:<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Chronic dialysis patients or chronic kidney
disease (CKD) patients on dialysis are among those heavily burdened by their
disease which is why any assistance received in the form of Philhealth benefits
or PCSO aid is much appreciated. However availing of PWD benefits among CKD
patients remain to be a problem.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">CKD patients on dialysis are among those
affected by the exclusion of chronic illness among those considered PWDs. It
has already been years since we petitioned that chronic dialysis patients be
considered PWD since Secretary Soliman’s time). In fact, we have obtained an
endorsement from former Senator Cayetano for our inclusion in the PWD benefits.<o:p></o:p></span></div>
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<b><span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif"; font-size: 9.0pt;">Figure 1. Endorsement
letter of former Senator Pia Cayetano<o:p></o:p></span></b></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">CKD’s current exclusion by the National Council
for Disability Affairs stems from the contention that CKD is a disease (like polio)
and not a disability. Currently, CKD patients who are to be issued PWD IDs are
those who already have physical/orthopaedic or psychosocial disabilities.
Apparently, the common belief is that CKD becomes a disability only when a
patient cannot walk or has restrictions related to mental health conditions.
However, this belief is inconsistent with the definition of disability under
Republic Act 7277. Please take note of the terms “physiological or anatomical
function”.<o:p></o:p></span></div>
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<b><span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif"; font-size: 9.0pt;">Figure 2.
Definition of disability under the Republic Act 7277<o:p></o:p></span></b></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">The kidney is also part of the human anatomy
with many crucial physiological functions like filtering waste from our food
intake and drugs, regulating and filtering minerals from blood, help produce
red blood cells, regulate blood pressure and promote bone health and
maintaining overall fluid balance. With CKD, these functions are impaired or
start to fail or are already failing. With these, CKD fulfills the disability
definition. Not to mention CKD often comes with other problems like diabetes mellitus.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Therefore, what makes CKD itself a disability
is because kidney function ( if not with impairments only) has already failed
accompanied by other impairments in body function affecting daily living like
impairment in blood pressure control (hypertension), impairment in red blood
cell production (anemia) and impairments in regulation of electrolytes (ex.
Increased potassium in the blood), among many other impairments. CKD is even
more “disabled” than those without limbs as failure to have dialysis eventually
results in death preceded by manifestations of all disabilities as expected
when the kidney fails. <o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">A CKD patient even if he is able to see or walk
or hear or think clearly is already considered disabled by virtue of the
aforementioned impairments. The dialysis machine for us is like an assistive
device just like a wheelchair is for those with mobility issues. Remove a
wheelchair, and a person without limbs remains to be considered a living
disabled person. Remove the dialysis machine and we lose all bodily functions
and die – more than disabled.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">CKD like other chronic illness is a disability
classification of its own. It is considered an invisible or hidden disability
--- a disability that is not immediately obvious but nevertheless is entitled
to the benefits of a PWD. The UNCRPD recognizes it. Social Security of the US
recognizes it. Even our local SSS recognizes it and our own Department of
Health Secretary which works hand in hand with NCDA also acknowledges it as
shown by the attached letter by former DOH Acting Secretary Ubial. <o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";"><o:p><br /></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";"><o:p><b><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-size: 9pt; line-height: 115%;">Figure 3. Letter of former DOH Acting Secretary Ubial agreeing that we
fulfil the criteria of disability</span></b></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";"><o:p><b><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; font-size: 9pt; line-height: 115%;"><br /></span></b></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Unfortunately, NCDA Executive Director Zubiaga does not agree.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">So we humbly request your office to ask the
NCDA leadership especially Dir. Zubiaga to re-examine and reconsider their
position regarding chronic dialysis patients or CKD patients as PWDs by revisiting
the definition of disabled, by weighing in facts and expert statements from
lawmakers, the Department of Health, the international community including the
global community of persons with disabilities and the UN Convention on the
Rights of Persons with Disabilities of which the Philippines is a signatory.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">#CKDisPWD . And we need your help. <o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Please consider chronic dialysis patients as
persons with disabilities as other qualified persons with chronic illness
should be.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">In behalf of chronic dialysis patients in the
Philippines.<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Respectfully,<o:p></o:p></span></div>
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<b><span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">NARCISO
TAPIA, MHPEd, MSPH (Signed)<o:p></o:p></span></b></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">Chronic kidney disease patient on dialysis<o:p></o:p></span></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">narcisotapia@gmail.com<o:p></o:p></span></div>
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<b><span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">REYNALDO
ABACAN Jr. (Signed)<o:p></o:p></span></b></div>
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<span style="background: white; color: #2a2a2a; font-family: "arial" , "sans-serif";">President/Founder, Dialysis Ph<o:p></o:p></span></div>
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-26390082891026860772016-08-24T23:25:00.000-07:002016-08-24T23:25:21.893-07:00Back from multiple hospital admissionsI missed you all in this blog. So many has happened during the blogging break (though I constantly post in Facebook).<br />
<br />
Almost every month I was admitted. The last time? Just this August! Chronic kidney patients are indeed immunocompromised. We get sick easily. Pneumonia, UTI alternating for me. At one point I had sepsis as my diagnosis. So fellow hemodialysis warriors, fever should not be taken lightly. See your doctor right away. In my case, I had fever and chills.<br />
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I underwent cysts aspiration. I am talking about some of my kidney cysts suspected to be infected. The contents of my biggest cysts were aspirated and cultured though there was no growth detected.<br />
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Due to my returning bouts of UTI since years past, my bacteria became resistant already to antibiotics including the "strong" ones. I already tried Tienam, Meropenem, Ampicillin-Sulbactam, Vancomycin, etc. Name it, tried it. For the latest admission, I was put on a new combination antibiotic, Cefepime-Tazobactam and an oral drug Azithromycin. Perhaps my bacteria will be surprised this time. It is really very important to use antibiotics judiciously. And I have an infectious disease specialist to help me with that. Together with my nephrologist, I thank them for taking care of me.<br />
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In between trials, God has never abandoned me. Each time I needed the funds, someone or some group will donate to help me. I was blessed to present in Palawan my TB research. For the first time, I reached Palawan.<br />
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Palawan is so wonderful and despite my condition, I am thankful that God allowed me to enjoy Palawan in my lifetime. The Underground River and the nice beach. Including the crocodile sisig. Yes, crocodile.<br />
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Of course, I am thankful most especially to my wife who has remained patient amidst the health challenges. Family support is very important believe me for conditions like the one I have.<br />
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God is Good!<br />
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See you next blog post!cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-24225213191967649062015-10-01T01:18:00.000-07:002015-10-01T01:18:22.209-07:00An appeal to PCSO in behalf of hemodialysis patients in the Philippines<div style="box-sizing: border-box; color: #363135; font-family: 'Helvetica Neue', Helvetica, Arial, Tahoma, sans-serif; font-size: 18px; line-height: 27.0002px; margin-bottom: 1.25em;">
Recently, many of our fellow hemodialysis patients nationwide have been told that they <strong style="box-sizing: border-box;">won't be able to avail of the PCSO financial assistance for hemodialysis unless the 90 days free dialysis Philhealth benefit will be consumed.</strong></div>
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It is with great sadness that we, hemodialysis patients hear of this new policy in PCSO which some of our fellow patients report to have been started. This may be <strong style="box-sizing: border-box;">due to the lack of information regarding what a hemodialysis patient goes through.</strong></div>
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Yes we have started this year an additional 45 free sessions from Philhealth but that doesn't mean we won't anymore spend a single cent for our illness. Despite the increase in dialysis day benefits, we still struggle financially just to be able to extend our life. Thus <strong style="box-sizing: border-box;">we humbly appeal for PCSO to reconsider</strong> due to the following reasons:</div>
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1. <strong style="box-sizing: border-box;">EXPENSIVE ERYTHROPOIETIN AND TRANSFUSIONS.</strong>Hemodialysis patients will still have to spend for erythropoietin injections to avoid blood transfusions. despite the injections, some even require blood transfusions. Sometimes, some of us use oxygen and pay for it. Transfusions and erythropoietin injections are not exactly cheap.</div>
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2. <strong style="box-sizing: border-box;">OTHER MAINTENANCE MEDS.</strong> Hemodialysis patients have other maintenance medications like those for hypertension, elevated phosphorus, diabetes to name some. These medications are expensive taken once, much more if taken several times in a day for life.</div>
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3. <strong style="box-sizing: border-box;">DIALYZER NOT ALWAYS GOOD FOR 10 SESSIONS.</strong> We have to pay for our dialyzer and just to save money, the dialyzer is used for 10 sessions, which is not really ideal (since ideally, it should be single use). In some instances, the dialyzer just cannot be reused anymore and a new dialyzer is paid for even before the 10th session.</div>
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4. <strong style="box-sizing: border-box;">WE ALSO GET HOSPITALIZED.</strong> It is wrong to assume that hemodialysis patients don't get hospitalized. Hemodialysis patients are immunocompromised and are prone to infections and other diseases. Every time a hemodialysis patient is hospitalized, one day is taken from the Philhealth 90 days free benefit which we cannot anymore use for hemodialysis.</div>
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5. <strong style="box-sizing: border-box;">IDEALLY WE SHOULD TARGET FOR 3X a WEEK DIALYSIS.</strong>Perhaps it is not known to many that the preferred dialysis frequency is 3x a week, not 2x a week. Thus, a 90 days free benefit was welcomed with joy as the chance to save up for a 3x a week dialysis is opened. A 90 days free benefit can almost take care of the 2x a week requirement. But with PCSO benefit delayed, patients are left with no choice but to still cut down the ideal frequency from 3x to once or twice a week to keep up with the financial burden. Depriving hemodialysis patients of financial assistance when the 90 days free session is not consumed, will further decrease our chances of getting dialysis 3x as it should.</div>
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6. <strong style="box-sizing: border-box;">DENIAL OF PWD STATUS.</strong> Recently, some hemodialysis patients have been denied PWD status. Criteria for PWD has been applied inconsistently. Some have been told that since they can still walk, they are not considered PWD. The PWD card and the accompanying discounts on dialysis and medicines could have been a big help to us financially. With some unable to avail of the PWD benefits, all the more PCSO assistance becomes important.</div>
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6. <strong style="box-sizing: border-box;">90 DAYS FREE SESSION IS NOT ACTUALLY FREE.</strong> The 90 days free benefit is almost enough to address the twice a week dialysis requirement.Theoretically. In reality, the 90 days free is NOT actually FREE. The actual price for hemodialysis is more than P2600 (the amount Philhealth used as basis for the standard price.) We still pay hundreds of pesos each session as the hemodialysis price is raised taking into consideration other fees. And besides, as mentioned earlier, hemodialysis should be 3x a week the least.</div>
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Therefore, the previous timing of PCSO assistance (distributed throughout the year and not only when 90 free sessions are consumed) prior to this change in policy was very much appreciated as this helped increase our chances of survival with each session added for dialysis. </div>
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We appeal to your kind hearts. PCSO management please reconsider.</div>
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This petition is found in https://www.change.org/p/larry-r-cedro-ddm-pcso-asst-gen-manager-for-charity-please-reconsider-decision-giving-dialysis-aid-only-after-90-free-sessions-are-consumed?recruiter=62583127&utm_source=share_petition&utm_medium=copylink</div>
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If you support this cause, go to the link and "sign" there. Thank you and God bless.</div>
cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-80618096530633699742014-12-28T14:37:00.002-08:002014-12-31T02:09:08.962-08:00My New Year's Wish for Hemodialysis Patients in the Philippines (especially Cebu)<div class="separator" style="clear: both; text-align: center;">
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Nice to be blogging once again. Been busy with work for the past months and before I realized, a new year is about to start. In between work, I undergo dialysis sessions and boy, there are so many stories there, a lot of them quite sad. And so i am writing my New Year's wish with the hope that somebody out there may be able to do something about these, not for me, but for my fellow hemodialysis patients. Here goes...<br />
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1. I wish more dialysis centers are put up in the rural areas or areas outside Cebu City. A lot of hemodialysis patients come from far away places travelling for hours early in the morning to beat the rush hour and to have their dialysis on the same day then either reach home near midnight or sleep in the floor or waiting areas before going home the next morning.<br />
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2. I wish Philhealth will provide more free sessions. The life of perhaps almost all hemodialysis patients in government dialysis centers depends on outside funding sources -- from "pork barrel", medical assistance funds, local government assistance funds, PCSO, etc. No funding, no dialysis. In Visayan expression, that's what you call, "Paet!"<br />
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3. I wish Hospital dialysis centers pay more attention to staffing needs. Hemodialysis nurses are not there just to insert the needle for hemodialysis and remove it. Patients have to be monitored. Their comfort must be ensured. Their physical complaints and health problems must be heard so they can be addressed accordingly. Patients need human touch, a listening ear and comforting words. With somebody listening to you and chatting with you, hemodialysis becomes something to look forward to, a welcome break, instead of being an experience you can't wait to get over with,<br />
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Also, patients need health teachings. With adequate staffing, potential problems like patients' companions coming in and out of the hemodialysis center will be avoided. Infection control problems will be minimized. For hemodialysis centers operating almost 24/7, "in-house" technicians should be always available as hemodialysis units are expected to break down with a heavy workload.<br />
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4. I wish all hemodialysis centers have "stay-in" doctors or physicians assigned solely for the hemodialysis unit in all dialysis session shifts. This doctor or these doctors will respond to emergency situations in the center. Also, they will provide health teachings or patient education or awareness aside from checking up and making rounds to all hemodialysis patients in the center especially in government dialysis centers where a lot of patients don't have their own nephrologist. You will be surprised a lot of these patients do not know exactly why there are on dialysis. they were just told that they have kidney failure and they have to undergo dialysis but as to why, they have no idea. In the hemodialysis waiting area, a lot of misconceptions and inaccurate health information are shared by patients themselves or their relatives to other hemodialysis patients and/or their relatives.<br />
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5. I wish processing of patient's request for hemodialysis becomes easier which includes registration, availing of labs, availing of hemodialysis supplies and medications is much easier especially in government centers. Remember, dialysis patients cannot tolerate walking at quite long distances. Express lanes catering only to hemodialysis patients within the hemodialysis complex is ideal since hemodialysis is not a one-time thing for patients and there will always be patients undergoing hemodialysis. They don't need to walk in various areas of the hospital for processing causing undue delays.<br />
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There you have it...my most important wish list for this New Year. I just hope somebody who can do something will be able to read this.<br />
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Meanwhile let's greet new year full of hope and positivity<br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-11170772579739231622014-06-25T04:34:00.001-07:002014-07-06T22:40:26.130-07:00A new chapter beginsHow are you my readers? It's been a long while since I last blogged. So many things have happened and I'm really excited to share to you.<br />
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One, I have a new job! Yes, I could not believe it! A hemodialysis patient with a new job to help with my health expenses! God is really good and we should never really give up even if we have some sort of disability.<br />
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From my career in the private sector, I am now in the government sector as a Research Training Specialist at a government hospital in Cebu...a chance to make a real impact to healthcare primarily by helping residents in their researches with the end goal of helping patients.<br />
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And here is my selfie in my new work environment. It's a job perfect for my situation.<br />
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The new job was really an unexpected development and I have the Lord to thank first.<br />
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Dr. Annabelle Fuentes deserves a very big thank you next, for the support and encouragement.<br />
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Thanks to the hospital administration for trusting that I can help them with regards to research.<br />
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Thanks to my wife, of course, who is always there for me.<br />
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Also to my colleagues in CIM who believed in me.<br />
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Work started last week and I am already loving it! It's really nice when you get to share what you learned from postgraduate studies and you see your learners and co-workers appreciate your efforts.<br />
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By the way, it will also be a new chapter for me with my dialysis. Why? Because I will be transferring soon to the government hospital dialysis center. And It kinda makes me sad because I already consider as family the staff of my current hemodialysis center as well as the other patients there. They helped me go through my bouts of high fever, UTI, etc. as well as laughed with me through the stories we share while on dialysis. But I will not be leaving them permanently as I will be still guiding the support group I helped establish there in their future activities.<br />
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I have some fears though with this impending transfer. Questions like, "How will I adjust to the new machine? to their dialyzer? the new environment?" I hope I will not experience fever as a reaction. Those kinds of fears. But hey, I know the Lord will just be on my side as He always does so I'll just think of him whenever I'm afraid.<br />
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P.S. Thanks to Dr. Pherdes and Michelle Chiong-Galbo again for their generosity. And thank you all for continuing to join me in my journey including this new chapter of mine. please do continue to pray for me. Hope you are in good health. Till next post!cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com1tag:blogger.com,1999:blog-4462656372282944399.post-60455115821674974402014-04-11T03:35:00.001-07:002014-07-06T22:41:05.040-07:00Libre Clothing for Hemodialysis: A Review<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4UJaJOPCQ37w1i7L2YNHy5bGHIpwaLJyr2ghR5QjVSqW-TQUZPbmM9VMJVY2GH7bFPotGHAu8YPeNKcM10fSa4K5AmvKbjDxYZ_YMtCmzut3ILp7V4bdA2cbLW4wlRyUYUCMpu5cz9pw/s1600/libreclothing.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Libre hemodialysis clothing" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4UJaJOPCQ37w1i7L2YNHy5bGHIpwaLJyr2ghR5QjVSqW-TQUZPbmM9VMJVY2GH7bFPotGHAu8YPeNKcM10fSa4K5AmvKbjDxYZ_YMtCmzut3ILp7V4bdA2cbLW4wlRyUYUCMpu5cz9pw/s1600/libreclothing.jpg" height="400" title="Libre hemodialysis clothing" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Libre dialysis clothing</td></tr>
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I finally get to try Libre, a hemodialysis clothing in the United States after it arrive early this month. To recall,<a href="http://pinoylifewithpkd.blogspot.com/2011/12/libre-clothing-for-dialysis-patients.html"> I wrote about Libre when I was not still a hemodialysis patient</a>.<br />
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The design is that of a sweater or sweatshirt, perfect for the cold environment inside a hemodialysis facility. The clothing material is not too thick and not too thin. Enough to provide warmth yet still ok for BP measurements.<br />
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The best feature is the strategically-placed zipper which allows unimpeded vascular access for hemodialysis to go on smoothly. You can clearly see how the clothing works in the above pic.<br />
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Once the hemodialysis is over, you can wear the clothing outside with people having no clue that what you are wearing is a dialysis clothing.<br />
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Thank you Libre Clothing!cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-6501137541115148682014-04-03T16:51:00.002-07:002014-04-03T16:51:27.997-07:00Updates of our Hemodialysis Support GroupGood to be back blogging here. Been busy with activities of our hemodialysis support group.<br />
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Last February we had a fundraiser then a lecture on Calcium and Phosphorus by nephrologist Dr. John Li.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAwxnNBV8NPe17xhyphenhyphen7SU9hY57HTYgiWVYtdSafo8-FljjJHcoRyvy5vg1kNUALhk0CZu8F_0189pZii87n4gICk0t11qwhdzja-swX4um1TtKVmBySesaB3x_9cPAnM0paxd6G2sYrM1o/s1600/calciumphosphoruslec2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAwxnNBV8NPe17xhyphenhyphen7SU9hY57HTYgiWVYtdSafo8-FljjJHcoRyvy5vg1kNUALhk0CZu8F_0189pZii87n4gICk0t11qwhdzja-swX4um1TtKVmBySesaB3x_9cPAnM0paxd6G2sYrM1o/s1600/calciumphosphoruslec2.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Partcipants of the Calcium Phosphorus lecture</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy7MPZzftOg2X3pvWVWbUNaV0mb7EvH4Rh5QYrCvQDzR_OS3p4Sht7jr35fnabmmnF_MAcNRybnXwhFf44CIge_UTGt-PHteTZ_6gXgFLAswzqV5wfxXyriMt8djJBOawrz3nADZ1-ec/s1600/calciumphosphoruslec.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicy7MPZzftOg2X3pvWVWbUNaV0mb7EvH4Rh5QYrCvQDzR_OS3p4Sht7jr35fnabmmnF_MAcNRybnXwhFf44CIge_UTGt-PHteTZ_6gXgFLAswzqV5wfxXyriMt8djJBOawrz3nADZ1-ec/s1600/calciumphosphoruslec.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. John Li lectures about Calcium and Phosphorus</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mini lecture on renal nutrition</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Smiling Kidneys Club summer beach outing</td></tr>
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Recently, our support group had a beach outing with nutrition lectures to celebrate World Kidney Day. Then we have an upcoming recollection next week and a planned mini Olympics this coming June in time for the celebration of the anniversary of our dialysis center as well as the Kidney Month. (If you wish to help us in our activities by being a sponsor or a partner, just sent me a message at the contact page.)<br />
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Though it is tiring to organize events for the support group, you feel happy seeing patients smile and appreciate the activities. It's difficult to explain but being busy with the support group has helped me also look forward to the future.<br />
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During a conversation with some kidney patients at PCSO while requesting for financial assistance, the patients appear to love the idea of being in a support group. I also heard some concerns regarding some baranggay officials not recognizing chronic kidney failure patients as Persons with Disability. This is sad. It is my dream that our support group will soon extend to other dialysis centers also to help address concerns like these.<br />
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Now with regards to my health, my phosphorus has gone up and serum calcium lowered slightly. Phosphorus levels are really hard to control. It requires discipline with the diet and compliance with taking phosphate binders like Renvela. I just wish the cost of these medicines will be eventually lowered or will be subsidized by the government also as in other countries because they are expensive. Perhaps with more patients banding together as a group, we can lobby for the lowering of the price of medicines, if not, secure the usual medicines at a lower price. That is another wish we could accomplish as a support group.<br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-7674393663747560622014-02-16T20:45:00.000-08:002014-02-16T20:45:02.807-08:00Bacter and Me: A tribute to our beloved best friend<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">My dog Bacter and me</td></tr>
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Valentines Day has just passed and it was me and my wife's first without our best friend, Bacter - an epitome of unconditional love and loyalty. Bacter passed away 2 days before Hearts' Day. He was with us for eleven years. This post is my way of memorializing him. Let me tell you our story.<br />
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Bacter came to us inside a shoebox (that was how small he was) given by my boss, a Microbiologist/Bacteriologist, thus the name Bacter. He was a small, bundle of joy, among the last, if not the last, of the puppies of Ginger (a Japanese Spitz) given away to friends and relatives of my boss. The last puppy to be handed out is usually what is considered the "least attractive" as new family members get to select their pick. We got to pick what was left so we had no choice. But perhaps that was meant to be. Fate brought us together and we don't regret ending up with him. Bacter definitely turned up actually to be a very good-looking dog upon growing up. He is believed to be a mix of Japanese Spitz and Golden retriever-Aspin (Asong Pinoy). He had plenty of hair/coat as he grew which became a challenge to house-cleaning when shedding time comes.<br />
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I was not allowed to take care of Bacter in my place so I requested my girlfriend then (who is now my wife) to have him in her home. He was so delicate, so small that we had to put up a sign on my girlfriend's door "Be careful. You might step on our small puppy".<br />
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We bought Bacter dog toys like a safe rope for biting, chew bones and balls. Bacter became fond of chewing things - slippers, part of the stairs, part of the sofa, clothes, etc. Practically he bit anything he could chew on. So yes, the toys were there for him to chew on and release energy.<br />
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<tr><td class="tr-caption" style="text-align: center;">Bacter, less than a year old with his favorite toys</td></tr>
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As a small puppy, Bacter became buddies with my wife's resident pet, a cat named San chai (named after the Meteor Garden character). Together, it seems the cat taught Bacter to hunt mice. (Bacter as an adult dog indeed became proficient in hunting mice and rats. He has his way of paralyzing the mice or rat without spilling blood and without eating them.) Anyway, the two became very good friends that we often find them playing with each other. Bacter would protect San chai from attacks by other cats and he would even protect San chai's offsprings from similar attacks. San Chai was way older than Bacter so it was sad that San Chai had to leave this world first leaving Bacter without a feline buddy.<br />
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As Bacter grew, he would love to sit on top of the working table while somebody's using it. He loves something soft also to lie upon or sit into. Thus my wife's sofa became his favorite spot along with the long laundry hamper where he barely fits.<br />
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He learned commands like "sit", "roll over", "to the chair", "kiss" and many more. When he objects of a command, he makes a Scooby doo-like sound. When we do aerobics, he likes to be carried around while we dance. Visits to the vets are stressful for him. He loves to hear anyone of us sing especially me. I sang him Disney tunes which he seemed to like a lot as he seemed to be lulled into sleep with these songs. He also liked to take a peek on what's outside the window.<br />
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One time, a friend lost her balance and accidentally sat on Bacter's tail. Bacter bit her as a reflex response. wW would never forget Bacter's guilty face afterward as he hid under the dining table as if trying to convey to us that he did not mean to bite our friend. Well, our friend remained friends with Bacter after the incident.<br />
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There was an incident where he perhaps prevented a thief from entering my girlfriend's apartment while she was out since only a bag was stolen inside the house and there were signs that Bacter may have put out a fight. Seeing Bacter okay that time brought a sigh of relief to us.<br />
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In time, he learned where to pee and poo when not able to go outside the house. He only does his thing on top of a newspaper. Whenever one of us arrives, he made it a point to hug and "kiss" us. But alas, I have to leave for Manila for my postgraduate studies leaving Bacter for two years solely to the care of my girlfriend.<br />
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While in Manila, I could fondly recall making calls to my girlfriend then "talking" to Bacter via cellphone. Bacter kept my wife company, making her smile always in my absence. During one of those years when I was still in Manila however, we had a scare. Bacter was seriously injured with heavy bleeding from one of his toes as he sustained a deep cut. Good thing he survived with the help of my wife's care and our prayers. Couldn't believe he'll get to live for 6 years more.<br />
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I went back from Manila and married my girlfriend and I could not forget including Bacter in the video to be played at the start of the wedding reception. He was looking clueless in the video with a ribbon on his neck. He was so cute there.<br />
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The bond between us three became stronger as we all live under one woof, I mean roof. Bacter hated the sound of thunder or firecrackers. And despite my two year absence, it was me whom he sought whenever there's thunder or the sound of firecrackers exploding. Though I try to ignore him to discourage his fear, he would climb on top of my lap or lie on my chest. Sometimes he would insert himself in between me and my wife in bed when thunder strikes. We are reminded of him everytime there are thunderstorms until now.<br />
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Of course, we don't give him chocolates but he knew when we're eating one. A lot of our favorite food he would ask using his "begging face" look that would melt anyone's heart.<br />
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As Bacter aged, he began to play less of catch and fetch. He used to really love it. However he did began to love belly rubs more. He also loved a massage on his head and neck which brought out his trademark contented smile. He would have favorite spots in the house especially the sofa. He would love to climb on top of new blankets and linens. Must be his arthritis that he finds it comfortable to be lying on top of any form of cushion.<br />
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When the 7.2 Magnitude earthquake late in 2013 occurred, I fondly recalled him running outside the house ahead of me in panic at the first sign of tremors. And he would join us under a table during aftershocks making our space much smaller.<br />
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During typhoon Yolanda, despite hearing of the supertyphoon's possibility of passing Cebu City days ahead, we never thought of leaving our canine friend behind if we were to evacuate to another place. At the height of the storm, we were all embracing each other in fear. Luckily, Cebu City did not sustain as much damage as other Cebu towns.<br />
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I don't want to recall the details of Bacter's final moments with us except for the fact that he was able to eat his favorite big pork bone for his last meal, that we were lying beside him on his last hours telling him that we love him and that he seemed to be saying the same as he unusually made sounds minutes before he left us.<br />
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Maybe some may not or would not fully understand why this level of emotion and love for a dog. I would not even attempt to explain it here. All I know is that Bacter touched our lives and was a source of unconditional love, of strength, support and of positivity. He still continues to be that source as we remember him. He also definitely helped me cope with my condition. Me and my wife consider him as one of the best things that ever happened to us.<br />
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<tr><td class="tr-caption" style="text-align: center;">Was not feeling well during this time but Bacter was a source of strength</td></tr>
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Do not worry about us, Bacter. Go ahead play with your new friends now in the Rainbow Bridge. Run free. Flash that wonderful smile of yours. You will not be far away anyway. For you are forever in our hearts.<br />
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<tr><td class="tr-caption" style="text-align: center;">Bacter: 2003-2014</td></tr>
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-38763835278624938082014-02-01T15:27:00.000-08:002014-02-01T15:27:05.504-08:00What's your hemodialysis age?<div class="separator" style="clear: both; text-align: center;">
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On January 29, 2013, I had my first hemodialysis with an IJ access. I have surpassed one year last January 29 and I'm one year old already. Yes one year old because I feel that hemodialysis gave me a second chance at life. Happy 1 year anniversary to me! Cheers! And belated Happy Chinese New Year too!<br />
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So many things have happened during that one year span. There were ups and there were downs. But mostly, it was ups for me.<br />
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Recently, I had a scare. I experienced hypotension. My systolic bp plunged to 80 from 110 during dialysis in less than an hour. I experienced cold sweat and almost passed out. Not a pleasant feeling I tell you. We thought my weight gain was 4 kg based on my previous dry weight. Apparently, my actual dry weight may be higher and therefore the 4 kg weight gain may not be accurate. My hemodialysis was stopped until I was able to recover. Good thing, my BP was back to normal within an hour. You'll never really know what will happen the next minute of your life. So we have to make every moment count.<br />
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That scare won't deter me though to savor a new year for me. I look forward to this new opportunity to make an impact to others despite my condition.<br />
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So how about you, what's your age in terms of your hemodialysis? How "old" are you? I would like to know what's your secret for longevity in hemodialysis? I believe positivity plays a role as well as support of family and friends. Do you agree?cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com1tag:blogger.com,1999:blog-4462656372282944399.post-20308743277931596722014-01-28T16:14:00.002-08:002014-02-01T15:33:37.486-08:00Steps in getting PCSO financial assistance for hemodialysisLast week, I was able to successfully to get the needed financial assistance from PCSO for my dialysis worth Php 10,000, good for 3 dialysis sessions. It took a lot of patience and some sacrifice to get it.<br />
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I went to the PCSO office in Cebu (in the Reclamation Area) at around 5 in the morning. Had my requirements checked by the guard since you are only allowed to list your name as a walk-in when our requirements are complete. For dialysis assistance, the requirements are:<br />
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<li>Picture of the patient</li>
<li>HANDWRITTEN letter from the patient requesting assistance addressed to the PCSO Chairman (currently it's the HON. MARGARITA P. JUICO thru Engr. Federico Damole, OIC Dept. Manager for Visayas-Mindanao)</li>
<li>Medical abstract complete with physician's complete name, signature, PTR number and license number</li>
<li>Official Statement of Account from the dialysis center regarding the costs of the dialysis treatment with the Billing Clerk's complete name and signature</li>
<li>Referral Letter from the facility's social worker or Hospital Social Service, if any (if without social worker, letter indicating facility has no social worker)</li>
</ul>
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NOTE: Have 2 photocopies of each when you go to PCSO. That means you have 1 original and 2 photocopies including photocopies for the patient's picture. A patient can designate someone to do all of this for him or her and go to the PCSO it seems.</div>
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After having my name listed and finding out I am number 4, I was asked to come back at 9 am. When I came back, the line of people. It is a mix of people renewing their request for assistance and other first-timers. Numbers were being called. Mine was called before lunchtime. I was given a form to fill up indicating family income and expenses basically. Once finished, I went back inside and I was scheduled to come back after lunch for the interview. I was interviewed at around 3PM already. Then for claiming the guarantee letter for the facility from PCSO, I was asked to come back two days after.<br />
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When I got the letter, I was so happy. I found out I can renew my request every 2 months. The date to renew is in an index card the PCSO gives you signed by the interviewer. Each time, it appears that the assistance will be Php 10,000. In effect, 3 free dialysis every 2 moths for a total of 12 free dialysis from PCSO a year if you start applying for assistance in January. Each time you renew, you submit the same requirements. </div>
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I handed the sealed letter from PCSO to the dialysis center and that's it! You can insert your PCSO-guaranteed dialysis sessions in between your Philhealth subsidized dialysis sessions. Thank you PCSO. Thank you to those who bought PCSO lotto tickets also. Hehe. </div>
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cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com1tag:blogger.com,1999:blog-4462656372282944399.post-30095505202275541502014-01-10T22:30:00.001-08:002014-01-28T14:51:30.257-08:00Sign my petition on Change.org asking for President's help in increasing free Philhealth sessions<style type="text/css"> h1 a:active { color: #318eac !important; } h1 a:active { color: #318eac !important; } h1 a:visited { color: #1d1d1d !important; } h1 a:visited { color: #1d1d1d !important; } h1 a:visited:hover { color: #318eac !important; } h1 a:visited:hover { color: #318eac !important; } h1 a:hover { color: #318eac !important; } h1 a:hover { color: #318eac !important; } h1 a:hover { color: #318eac !important; } h1 a:hover { color: #318eac !important; } table.button td .button a:visited { color: #f9f9f9 !important; } table.button td .button a:hover { color: white !important; background: #ff3101 !important; } table.button td .button a:active { color: white !important; background: #ff3101 !important; } table.secondary-button td div a:visited { color: #287089 !important; } table.secondary-button td div a:hover { color: #318eac !important; background: #f4f4f4 !important; } table.secondary-button td div a:active { color: #318eac !important; background: #f4f4f4 !important; } p.paragraph a:active { color: #318eac !important; } p.paragraph a:visited { color: #1a4654 !important; } p.paragraph a:visited:hover { color: #318eac !important; } p.paragraph a:hover { color: #318eac !important; } p.small a:active { color: #318eac !important; } p.small a:visited { color: #777777 !important; } p.small a:visited:hover { color: #318eac !important; } p.small a:hover { color: #318eac !important; } </style> <br />
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Shared with you </div>
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Hi — </div>
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I just started a petition on Change.org that is about an issue that is very important to me. The more people that sign my petition, the more likely it is to win. <a href="http://www.change.org/petitions/his-excellency-benigno-simeon-c-aquino-iii-president-of-the-republic-of-the-philippines-that-a-certain-amount-from-the-budget-alloted-before-to-the-pork-barrel-be-given-to-philhealth-to-increase-the-number-of-free-dialysis-sessions-to-at-least-100?share_id=WlHmKVmzcM&utm_source=share_petition&utm_medium=email&utm_campaign=petition_invitation" style="color: #28708a;"><strong>Will you help me by signing?</strong></a> </div>
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Thanks, <br /> Narciso </div>
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<tr> <td align="center" border="0" cellpadding="0" cellspacing="0" style="border-collapse: collapse !important; border: 0;" width="490"><a href="http://www.change.org/petitions/his-excellency-benigno-simeon-c-aquino-iii-president-of-the-republic-of-the-philippines-that-a-certain-amount-from-the-budget-alloted-before-to-the-pork-barrel-be-given-to-philhealth-to-increase-the-number-of-free-dialysis-sessions-to-at-least-100?share_id=WlHmKVmzcM&utm_source=share_petition&utm_medium=email&utm_campaign=petition_invitation"> <img class="block" src="//d22r54gnmuhwmk.cloudfront.net/photos/3/kk/hk/hOKkhKpbqFmVkxC-556x313-cropped.jpg" style="-ms-interpolation-mode: bicubic; border-radius: 2px; border: none; display: block; outline: none; text-decoration: none;" width="490" /></a> </td> </tr>
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<a href="http://www.change.org/petitions/his-excellency-benigno-simeon-c-aquino-iii-president-of-the-republic-of-the-philippines-that-a-certain-amount-from-the-budget-alloted-before-to-the-pork-barrel-be-given-to-philhealth-to-increase-the-number-of-free-dialysis-sessions-to-at-least-100?share_id=WlHmKVmzcM&utm_source=share_petition&utm_medium=email&utm_campaign=petition_invitation" style="color: #1d1d1d !important; text-decoration: none;"> His Excellency Benigno Simeon C. Aquino III, President of the Republic of the Philippines: That a certain amount from the budget alloted before to the pork barrel be given to PhilHealth to increase the number of free dialysis sessions to at least 100 </a> </h1>
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<a alt="Sign my petition" href="http://www.change.org/petitions/his-excellency-benigno-simeon-c-aquino-iii-president-of-the-republic-of-the-philippines-that-a-certain-amount-from-the-budget-alloted-before-to-the-pork-barrel-be-given-to-philhealth-to-increase-the-number-of-free-dialysis-sessions-to-at-least-100?share_id=WlHmKVmzcM&utm_source=share_petition&utm_medium=email&utm_campaign=petition_invitation" style="-moz-border-radius: 2px; -webkit-border-radius: 2px; background-color: #ed2d23; border-radius: 2px; color: #f9f9f9 !important; display: block; font-family: 'Helvetica Neue', Helvetica, sans-serif; font-size: 16px; font-weight: bold !important; line-height: 18px; padding: 5px; text-decoration: none !important;"> Sign my petition </a> </div>
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Dear Mr. President,</div>
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According to a 2012 report, at least one Filipino dies every hour of kidney failure making it the number nine killer of Filipinos. And this number is expected to increase.</div>
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<br />Quoting Neal Cruz in a 2010 Inquirer article, patients in end-stage kidney disease or kidney failure “…is actually a permanent disability worse than losing an arm or a leg because you can survive indefinitely without an arm and a leg but you cannot survive with failed kidneys.” It is to be noted that in other countries like Japan or Australia, their government pays for dialysis treatments as they consider kidney failure a permanent disability.</div>
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Surviving kidney disease patients continue to live because of either kidney transplant (which only few appear to avail of despite the Philhealth Z package) or dialysis (which appears to be chosen by the majority of these patients). For the year 2010, around 14,000 Filipinos are undergoing dialysis. However many other patients have also died because of inadequate or lack of dialysis treatments.</div>
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A patient undergoing hemodialysis in order to live will have to spend roughly six thousand pesos (P6,000.00) or higher per session for hemodialysis, dialyzer and erythropoietin injections. The estimate does not include yet blood transfusions some patients undergo during hemodialysis on top of the medications they are already having. This cost is tripled taking note of the optimum standard frequency of dialysis treatments of three times a week. Thus, patients resort to cost-cutting measures like dialyzer re-use, skipping erythropoietin injections and even skipping hemodialysis sessions compromising not just their health but their life.</div>
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It is clear that because of the lack of financial resources, only very few can actually afford thrice-a-week dialysis without financial help. Dialysis patients are thankful of the 45-free sessions given through Philhealth which is equivalent to a once-a-week dialysis. But given the function of healthy kidneys removing toxins in the body in a 24/7 basis, a once-a-week dialysis is not enough to sustain life.</div>
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With the landmark decision by the Supreme Court declaring the pork barrel as unconstitutional, funds that were allotted before to the lawmakers’ pork barrel will now be available. To recall, some of the beneficiaries of these pork barrel funds are hemodialysis patients who now have to look for alternative sources of assistance.</div>
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With this development, may we humbly request that a certain amount be given to Philhealth to increase the number of free dialysis sessions to 100 (equivalent to twice-a-week dialysis sessions)?</div>
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If Philhealth can subsidize P600,000 to patients who will undergo kidney transplant, why not increase the no. of free sessions to patients undergoing dialysis enough to be able to have at least twice-a-week dialysis sessions? This will benefit more kidney failure patients increasing their chances to have adequate dialysis. In turn, those who are able to have adequate dialysis will continue to be productive despite their condition.</div>
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An increase in free dialysis sessions will certainly be welcomed by hemodialysis patients who badly need any assistance they could get and will be consistent with the government’s target of universal health care. Giving a budget for this directly through PhilHealth will make it less prone to corruption.</div>
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<span style="background-color: transparent; font-size: 15px;">As our President, we the undersigned patients, family members, caregivers and friends of patients are counting on your support to help the increasing number of hemodialysis patients throughout the country to have a chance at life. Please help us.</span></div>
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<a href="http://www.change.org/petitions/his-excellency-benigno-simeon-c-aquino-iii-president-of-the-republic-of-the-philippines-that-a-certain-amount-from-the-budget-alloted-before-to-the-pork-barrel-be-given-to-philhealth-to-increase-the-number-of-free-dialysis-sessions-to-at-least-100?share_id=WlHmKVmzcM&utm_source=share_petition&utm_medium=email&utm_campaign=petition_invitation" style="-moz-border-radius: 2px; -webkit-border-radius: 2px; background-color: #f4f4f4; border-radius: 2px; color: #28708a; display: block; font-family: 'Helvetica Neue', Helvetica, sans-serif; font-size: 15px; font-weight: bold; line-height: 18px; padding: 5px; text-decoration: underline;"> Sign my petition </a> </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQZXyW1Gim1O19ZszmopxLcipjZ0tWKZFZrUEjjjkhMVtUprYadQaV8Lh_AzuQBFfi_QDqtERELyGX-LW8HeJh04RCyvdxtN1LAyUQxzAFbYk_HJ5JXa6Qajdv_GnPgpBl78LFBxpgUD4/s1600/hemodialysis4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="305" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQZXyW1Gim1O19ZszmopxLcipjZ0tWKZFZrUEjjjkhMVtUprYadQaV8Lh_AzuQBFfi_QDqtERELyGX-LW8HeJh04RCyvdxtN1LAyUQxzAFbYk_HJ5JXa6Qajdv_GnPgpBl78LFBxpgUD4/s320/hemodialysis4.jpg" width="320" /></a></div>
<span lang="EN-US"><span style="font-family: inherit;"><w:sdt calendar="t" calendartype="Gregorian" date="2013-12-30T00:00:00Z" dateformat="MMMM d, yyyy" docpart="B26DC38285774F2DA68A4500391BB2AA" lang="EN-US" maptodatetime="t" prefixmappings="xmlns:ns0='http://schemas.microsoft.com/office/2006/coverPageProps' " sdttag="Date" storeitemid="X_55AF091B-3C7A-41E3-B477-F2FDAA23CFDA" title="Date" xpath="/ns0:CoverPageProperties[1]/ns0:PublishDate[1]"><br /></w:sdt></span></span>
<span style="font-family: inherit;">December 30, 2013</span></div>
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<span lang="EN-US"><span style="font-family: inherit;"><w:sdt calendar="t" calendartype="Gregorian" date="2013-12-30T00:00:00Z" dateformat="MMMM d, yyyy" docpart="B26DC38285774F2DA68A4500391BB2AA" lang="EN-US" maptodatetime="t" prefixmappings="xmlns:ns0='http://schemas.microsoft.com/office/2006/coverPageProps' " sdttag="Date" storeitemid="X_55AF091B-3C7A-41E3-B477-F2FDAA23CFDA" title="Date" xpath="/ns0:CoverPageProperties[1]/ns0:PublishDate[1]"><br /></w:sdt></span></span></div>
<div class="Address">
<span lang="EN-US" style="line-height: 115%;"><span style="font-family: inherit;">His
Excellency Benigno Simeon C. Aquino III<o:p></o:p></span></span></div>
<div class="Address">
<span lang="EN-US" style="line-height: 115%;"><span style="font-family: inherit;">President
of the Republic of the Philippines<o:p></o:p></span></span></div>
<div class="Address">
<span lang="EN-US" style="line-height: 115%;"><span style="font-family: inherit;">Malacañang
Palace<o:p></o:p></span></span></div>
<div class="Address">
<span lang="EN-US" style="line-height: 115%;"><span style="font-family: inherit;">J.P.
Laurel St., San Miguel, Manila 1005<o:p></o:p></span></span></div>
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<span style="font-family: inherit;">Dear Mr. President,<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">According to a 2012 report, at least one Filipino dies every
hour of kidney failure making it the number nine killer of Filipinos. And this
number is expected to increase.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Quoting Neal Cruz in a 2010 Inquirer article, patients in
end-stage kidney disease or kidney failure “…is actually a permanent disability
worse than losing an arm or a leg because
you can survive indefinitely without an arm and a leg but you cannot survive
with failed kidneys.”<span style="color: #333333;"> </span>It is to be noted that
in other countries like Japan or Australia, their government pays for dialysis
treatments as they consider kidney failure a permanent disability.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Surviving kidney disease patients continue to live because of
either kidney transplant (which only few appear to avail of despite the
Philhealth Z package) or dialysis (which appears to be chosen by the majority
of these patients). For the year 2010, around 14,000 Filipinos are undergoing
dialysis. However many other patients have also died because of inadequate or
lack of dialysis treatments.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">A patient undergoing hemodialysis in order to live will have
to spend roughly six thousand pesos (P6,000.00) or higher per session for
hemodialysis, dialyzer and erythropoietin injections. The estimate does not
include yet blood transfusions some patients undergo during hemodialysis on top
of the medications they are already having. This cost is tripled taking note of
the optimum standard frequency of dialysis treatments of three times a week. Thus,
patients resort to cost-cutting measures like dialyzer re-use, skipping
erythropoietin injections and even skipping hemodialysis sessions compromising
not just their health but their life.<o:p></o:p></span></div>
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<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">It is clear that because of the lack of financial resources,
only very few can actually afford thrice-a-week dialysis without financial
help. Dialysis patients are thankful of the 45-free sessions given through
Philhealth which is equivalent to a once-a-week dialysis. But given the
function of healthy kidneys removing toxins in the body in a 24/7 basis, a
once-a-week dialysis is not enough to sustain life. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;">With the landmark decision by the Supreme Court declaring the
pork barrel as unconstitutional, funds that were allotted before to the
lawmakers’ pork barrel will now be available. To recall, some of the
beneficiaries of these pork barrel funds are hemodialysis patients who now have
to look for alternative sources of assistance. With this development, may we
humbly request that a certain amount be given to Philhealth to increase the
number of free dialysis sessions to 100 (equivalent to twice-a-week dialysis
sessions)?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><br /></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin: 7.5pt 0in 0.0001pt;">
<span style="font-family: inherit;">If
Philhealth can subsidize P600,000 to patients who will
undergo kidney transplant, why not increase the no. of free sessions to
patients undergoing dialysis enough to be able to have at least twice-a-week
dialysis sessions? This will benefit more kidney failure patients increasing
their chances to have adequate dialysis. In turn, those who are able to have
adequate dialysis will continue to be productive despite their condition.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin: 7.5pt 0in 0.0001pt;">
<span style="font-family: inherit;">An increase in free dialysis sessions will
certainly be welcomed by hemodialysis patients who badly need any assistance
they could get and will be consistent with the government’s target of universal
health care. Giving a budget for this directly through Philhealth will make it
less prone to corruption. <o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin: 7.5pt 0in 0.0001pt;">
<span style="font-family: inherit;">As our President, we the undersigned are counting
on your support to help the increasing number of hemodialysis patients throughout the country to have a chance at life. Please help us.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: inherit;">Sincerely,<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoSignature" style="margin-bottom: .0001pt; margin-bottom: 0in; mso-add-space: auto; tab-stops: 118.9pt;">
<span lang="EN-US" style="line-height: 115%;"><span style="font-family: inherit;">Dr. Narciso Tapia, MHPEd<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-US"><span style="font-family: inherit;">President, Smiling
Kidneys Club (a kidney and hemodialysis patients support group based in Cebu)</span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-US"><span style="font-family: inherit;">Hemodialysis Patient</span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span lang="EN-US"><span style="font-family: inherit;"><br /></span></span>
<span lang="EN-US"><span style="font-family: inherit;"><i>Sign the online petition with the same content as above by clicking </i></span></span><i>http://chn.ge/1lCmn6u then share to others. Thank you.</i><br />
<span lang="EN-US"><span style="font-family: inherit;"><br /></span></span>
<span lang="EN-US"><span style="font-family: inherit;"><br /></span></span></div>
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<span lang="EN-US"><span style="font-family: inherit;">#PhilHealth #DOHphilippines #hemodialysis</span></span></div>
cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com2tag:blogger.com,1999:blog-4462656372282944399.post-58778812923977099422013-12-27T05:54:00.001-08:002013-12-27T06:08:42.446-08:00NativityAs we celebrate Christ's birth, let me look back at the year that was.<br />
<br />
I began the year very sick. I was losing weight fast and I was noticeably thin. With my IJ catheter as my initial access, I had bouts of on-and-off fever after a little over a month. I thought I won't survive the year.<br />
<br />
Fast forward to December, I feel like I am born again even without a kidney transplant yet. I had a few willing kidney donors but eventually they got rejected because of me being CMV IgG negative and them being CMV IgG positive. But hey, my hemoglobin's up so that I don't have erythropoietin injections anymore and my BP has become normal. No return bouts of the fever and chills. And I helped established a new kidney patient support group, the Smiling Kidneys Club.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHvGh_d8mCeO3HEVALsDbOvHwTuqtPTvPR32XO0vJ0a60yzAdAAC941-DvrEaWLytN1eHVaI53RN-h5yQAqKvr7IxR4HwJNmlvFeYWo7ILxMhBEYhFDrTh5C9HnMKwISpSGhqt9AD8Bco/s1600/skcfamily2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHvGh_d8mCeO3HEVALsDbOvHwTuqtPTvPR32XO0vJ0a60yzAdAAC941-DvrEaWLytN1eHVaI53RN-h5yQAqKvr7IxR4HwJNmlvFeYWo7ILxMhBEYhFDrTh5C9HnMKwISpSGhqt9AD8Bco/s400/skcfamily2.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling Kidneys Club family based in Asia Renal Care 1 Cebu</td></tr>
</tbody></table>
The Smiling Kidneys Club was born. It is envisioned to help kidney patients, hemodialysis patients cope with their condition. Members consist not just of patients, but also of families, caregivers, medical professionals taking care of thapatient or supporting the patient.<br />
<br />
Initially, we are are requesting in behalf of other hemodialysis patients, for the free Philhealth sessions to be increased from 45 to 100 (equivalent to about 2x a week session frequency). Hopefully we can soon make a petition letter online for this. During the club's first Christmas Party we voiced this to Congressman Raul del Mar who said that we should work hand in hand to help the patients. Hopefully Philhealth, Pnoy and the Executive department listens and hopefully allots a budget for this especially that the pork barrel is scrapped. The millions meant for the individual pork barrels of senators and congressmen may hopefully be available for this, even as the remaining pork barrel was already aligned to the calamity funds.By helping subsidize more dialysis treatments, kidney patients can continue to be active contributors to society as they are able to perform tasks they are used to do when they were still healthy.<br />
<br />
Lord as this baby of ours (The Smiling Kidneys Club) is born, may your bright star guide us in our mission. May You continue to provide us nourishment, inspiration and strength despite illness to perform our duties. Thank you for the gift of life. Thank you for giving us our loved ones, our supporters, our nurses, our doctors, our friends. Happy Birthday Jesus.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyfrLnJz8upQdtvqtV9DtRJSh0A9O3RuZf6El5tbC95jAZ3U_jHfj6Tzk5P2zGOnD8SG0K0b0LDxrvnYctTKk1PFAyPYhfwemFBt2M2oM18L3i6jnXs446Tfd_xx9vA6hcDJvb21qbnG4/s1600/xmasgreeting.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyfrLnJz8upQdtvqtV9DtRJSh0A9O3RuZf6El5tbC95jAZ3U_jHfj6Tzk5P2zGOnD8SG0K0b0LDxrvnYctTKk1PFAyPYhfwemFBt2M2oM18L3i6jnXs446Tfd_xx9vA6hcDJvb21qbnG4/s400/xmasgreeting.png" width="400" /></a></div>
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Visit us and inspire the patients with your likes at <a href="https://www.facebook.com/pages/Smiling-Kidneys-Club/569366866479794?ref=hl">https://www.facebook.com/pages/Smiling-Kidneys-Club/569366866479794?ref=hl</a><br />
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Support us on our future plans and projects.cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-22329945208232221722013-11-24T07:47:00.002-08:002013-11-24T07:47:56.151-08:00Dream come true: Renal Support Group establishment and Best Cebu Blogs nominationIt's been more than a month since I last updated this blog. In between, our region experienced a strong earthquake and most recently one of the strongest if not, the strongest typhoon making landfall in history leaving scores dead, injured or missing not to mention the houses destroyed. But here we are standing and full of hope as a nation. We pray for our countrymen in the areas most heavily hit and we thank the volunteers, local and international as well as donors who rushed to our countrymen's aid. Thank you so much.<br />
<br />
November was not entirely a bad month though.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ohtoT1-VGUIU8LuylqYmVQmks3hDtBaYQvAzkz82qQibj8sGKwfJ2OhXGEhp69HsH6MwJnNVe31KAv88XgVF3mXV3YsHeFmgJ0DfVz8cCaZfFc83Ok9nwvfxjC1x9B-Ae5TCIKWnkXA/s1600/arc1cebuorientation2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="ARC 1 Renal Support group (Smiling Kidneys Club)" border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ohtoT1-VGUIU8LuylqYmVQmks3hDtBaYQvAzkz82qQibj8sGKwfJ2OhXGEhp69HsH6MwJnNVe31KAv88XgVF3mXV3YsHeFmgJ0DfVz8cCaZfFc83Ok9nwvfxjC1x9B-Ae5TCIKWnkXA/s320/arc1cebuorientation2.jpg" title="Smiling Kidneys Club Cebu Renal support group" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling Kidneys Club renal support group's first meeting</td></tr>
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Last November 17 was the first meetup of a renal support group we are establishing initially within our hemodialysis unit. It is called the Smiling Kidneys Club and like any support group, it aims to be an avenue for members (patients, relatives, caregivers) to support each other or be there for each other in many ways. We are planning to have education seminars on various topics, fundraising activities as well as other events that will benefit the patients most especially. We also have an online component <a href="https://www.facebook.com/groups/arc1cebusupport/">via Facebook group</a> to share experiences and learn from them. I was inspired to initiate the support group after seeing online groups like the PKD Foundation as well as other support groups. It was once a dream now turning into reality. After seeing everyone's faces during the meetup, I could tell my dialysis "classmates" are excited to belong to a support group.<br />
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Another dream coming true is being selected as a finalist in the <a href="http://bestcebublogs.com/about/">Best Cebu Blog Awards (BCBA) 2013</a> out of many entries this year. The selection alone inspires me to continue with my advocacy of educating fellow polycystic kidney disease (PKD) patients as well as kidney patients on hemodialysis by sharing my experiences and knowledge about kidney disease and PKD.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeakSy03KVJa22Bq-eesi8gXD-nbAYCxk3caxmcvNcpNh8nYxQ1jlOZA3o9DtLnki8f6zxFqeyvjv51-yyy8DK5S_ZVTl5QLXV7xYxrg1MyCVvyrjuS1nIJTq8fuQuqs7wBDI_ddC51tU/s1600/VoteNominee19_Narciso-Tapia.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeakSy03KVJa22Bq-eesi8gXD-nbAYCxk3caxmcvNcpNh8nYxQ1jlOZA3o9DtLnki8f6zxFqeyvjv51-yyy8DK5S_ZVTl5QLXV7xYxrg1MyCVvyrjuS1nIJTq8fuQuqs7wBDI_ddC51tU/s320/VoteNominee19_Narciso-Tapia.png" width="320" /></a></div>
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The Best Cebu Blog Awards "aims to recognize the existence and relevance of blogging in Cebu's local blogging scene..." Aside from recognizing the Top Ten Famous Cebu Bloggers, the BCBA awarding body are recognizing Cebu's best bloggers by niche - Technology, Personal, Food, Lifestyle and Entertainment. There will also be special wards like Yahoo's Choice, CBSi's Choice, Special Citation and Visayas Blogger's choice.<br />
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The awarding night will be on December 7, 2013 6 PM at the Avalon Building, Cebu Business Park.<br />
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<i>Thanks to Gold sponsors like <a href="http://www.jollibee.com.ph/">Jollibee</a>, <a href="http://www.greenwich.com.ph/">Greenwich Pizza and Pasta</a>, <a href="http://www.globe.com.ph/">Globe</a>, <a href="http://www.primaryhomes.com/">Primary Homes</a> along with Bronze Sponsors like <a href="http://bluewatermaribago.com.ph/">Maribago Bluewater</a>, <a href="http://philippines.starbucks.com/en-US/">Starbucks Philippines</a>, <a href="https://www.facebook.com/pages/Dr-Xavier-G-Solis-Dental-Care-Clinic/105456096197001">Dr. Xavier G. Solis Dental Clinic</a>, the awarding ceremonies will materialize. Gratitude also goes to <a href="https://www.facebook.com/pages/Island-Grill/153253611430516">Island Grill</a>, <a href="https://www.facebook.com/cebuprojectorrental">Javders</a>, <a href="http://www.cebubloggers.com/">Cebu Bloggers Society</a>, <a href="http://www.tenminutes.ph/">tenminutes.ph</a> and <a href="http://isnapsweddingphotos.pagevamp.com/">i-Snaps Photography</a>.</i><br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-2770166140518152722013-10-08T07:48:00.001-07:002013-10-09T23:05:03.617-07:00Figuring Out what God's Plan isFor the third time I had my CMV IgG antibody tested, I got a negative result. That means for now that I will have to wait awhile for a kidney transplant to happen as most people or most kidney donors are expected to be positive.<br />
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But life does not stop with that, right? Meanwhile I am trying to finish my thesis doing laboratory work (please pray that I finish that soon) and I am also working on establishing an online support group for dialysis patients. I am still having a hard time letting fellow dialysis patients warm up to joining an online support group. They have not yet fully grasp how social media can help. Or perhaps they are still shy.<br />
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Also I had the honor of meeting a celebrity with a very good personality, Abby Asistio, who is an Ambassadress for Alopecia in the Philippines. Very inspiring lady who is passionate of her advocacy.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqq_g2pZHqE115KDQrLgZcdSAaLQKghoNA6HpTPrURobQhc7VAxeNgbjN1epjTIywQDuM1xT22GsWSbMoxBSviMGRpn8Y_JIuGRC9pqz_ul0VvPaQh4bUfFDQPlhJUwKuF_LBVnl7nG-o/s1600/abbywithdocbuboy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="with Abby Asistio" border="0" height="275" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqq_g2pZHqE115KDQrLgZcdSAaLQKghoNA6HpTPrURobQhc7VAxeNgbjN1epjTIywQDuM1xT22GsWSbMoxBSviMGRpn8Y_JIuGRC9pqz_ul0VvPaQh4bUfFDQPlhJUwKuF_LBVnl7nG-o/s320/abbywithdocbuboy.jpg" title="" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">with Abby Asistio</td></tr>
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I also had a reunion with my Ceboom Hazelers FitFil team with our former fitness coach, Biggest Loser Philippine Edition alumna Hazel Chua.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyL7e4kA428L68b4e4R0N1d72X33l6xgZdM7KzFnJ9uKZSmz-92PufkuuZ8tDemvv2eWF3T_s5Like82pV2O9JVyR_C_FSm6MwEslgA5UUZcVJ-_2TE1ikdEqo5acjlIvaEZYPrZDa_Zk/s1600/coachhazeandme.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="with coach Hazel Chua" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyL7e4kA428L68b4e4R0N1d72X33l6xgZdM7KzFnJ9uKZSmz-92PufkuuZ8tDemvv2eWF3T_s5Like82pV2O9JVyR_C_FSm6MwEslgA5UUZcVJ-_2TE1ikdEqo5acjlIvaEZYPrZDa_Zk/s320/coachhazeandme.jpg" title="" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Coach hazel Chua</td></tr>
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God has been very good to me keeping me relatively healthy to allow me to be with the company of great people recently.<br />
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And oh by the way. This blog has been nominated for the Best Cebu Blogs Awards and I thought I could turn this nomination into an instrument to spread my advocacy of positivity despite illness. If you want to help me on that, you could visit <b style="background-color: white; line-height: 18px; text-align: -webkit-center;"><span style="color: #222222; font-family: Helvetica; font-size: 12px;"> </span><a href="http://cebumd.us7.list-manage1.com/track/click?u=5a926628dca6f3321c841a2d4&id=c8f15a6659&e=08ac8caa87" rel="nofollow" target="_blank" wotsearchprocessed="true"><span style="color: #20124d; font-family: inherit;"><i>http://bit.ly/bcbtaps</i></span></a><span style="color: #222222; font-family: Helvetica; font-size: 12px;"> </span></b><span style="background-color: white; color: #222222; line-height: 18px; text-align: -webkit-center;"><span style="font-family: inherit;">and LIKE the entry post there.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsdcGcI_c3ACEUQUdXQHjIKDhG105hvCpfgu9a_wiXg6b0rUbZSkLXDRbjBF3D0zTY6kjlZDn__aap1T4EU2N_egAzkav9p7rpB4vYpxqa4r1xJobLiVsFNjkQz3nlP5vXfj2vFxPwOQ0/s1600/VoteNominee19_Narciso-Tapia.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Best Cebu Blog 2013 nominee" border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsdcGcI_c3ACEUQUdXQHjIKDhG105hvCpfgu9a_wiXg6b0rUbZSkLXDRbjBF3D0zTY6kjlZDn__aap1T4EU2N_egAzkav9p7rpB4vYpxqa4r1xJobLiVsFNjkQz3nlP5vXfj2vFxPwOQ0/s400/VoteNominee19_Narciso-Tapia.png" title="" width="400" /></a></div>
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Now back to my thoughts...<br />
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There are times when I am alone when I ask myself, what really is the Lord's plan for me. Have you also experienced that? What is the meaning of those negative results? I am feeling fine recently even skipping erythropoietin injections since my hemoglobin rose. My hemoglobin levels did not decrease already. I was hypertensive before and now my BP is normal. And I thank God for this. But science says I still need a kidney transplant. Quite confusing, isn't it?<br />
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But I trust the Lord that He will do everything in His time. I should not force the issue. So I go with the flow.cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-91508061410562093522013-09-16T05:56:00.000-07:002013-09-16T05:56:10.212-07:00Fighting our BattlesIt pains me to see in the news the continuing bloodshed in Zamboanga. Just this evening, I read that a 2-year old boy was killed by a stray bullet. My heart goes to the innocent civilians, the hostages, the men, women and children caught in the crossfire and our soldiers. In this case, I prefer that there be NO battles fought. Let peace reign.<br />
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On the other hand, there is these news of the filing of charges of plunder against several Philippine lawmakers related to the pork barrel issue, a continuing battle against corruption that every ordinary citizen should support. The Cebu Coalition Against Corruption supported by Cebu Archbishop Palma has an online petition calling for the abolition of the pork barrel system, the prosecution of the scammers and transformation for the common good. Their stand is contained in a Unity Statement Against Corruption found here <a href="https://www.change.org/petitions/the-government-of-the-republic-of-the-philippines-abolish-the-pork-barrel-system-prosecute-the-scammers-transform-for-the-common-good?share_id=yIVfBZGTrn&utm_campaign=twitter_link_action_box&utm_medium=twitter&utm_source=share_petition">https://www.change.org/petitions/the-government-of-the-republic-of-the-philippines-abolish-the-pork-barrel-system-prosecute-the-scammers-transform-for-the-common-good?share_id=yIVfBZGTrn&utm_campaign=twitter_link_action_box&utm_medium=twitter&utm_source=share_petition</a>. You may want to take a look and perhaps sign to support the said petition.<br />
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I know. This is not a political blog. But I just can't help think of our countrymen even if myself have my own health problems. It is just a battle I too have too fight along with my battle against polycystic kidney disease.<br />
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As for this health battle of mine, I am happy to say that I feel I have improved a lot. I am slowly gaining weight. People who see me say I look better. I feel good, thank God. I am back finishing my thesis. My electrolytes and other blood tests are normal except for some elevation in the phosphorus and creatinine. Really having a positive attitude works. Even if dialysis is financially draining, help continues to come and I thank many for that. I still need your continued support though as I prepare for possible kidney transplant still especially that dialysis has started eating up some of the transplant fund.<br />
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I have a prospective donor whose being tested and he is a very pleasant young person. He met with me and my wife the other week and may God bless him. We are just waiting for the initial test results. Let us see where God wills me to be.<br />
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Seeing a new "classmate" in the dialysis facility with an IJ catheter on her neck reminds me of my first few months of dialysis with the IJ access. That was one heck of an ordeal and I have the many scars on my neck to prove it. Battle scars if I may so.<br />
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But even with those scars and the constant pain felt with the insertion of that big dialysis needle, this is a battle I am not turning my back on. Not when so many, even my current and former students are fighting with me. I am not just going into battle for myself. I am doing this for the other patients in chronic renal failure and for other PKD patients so they will also have the courage to face their own battles.<br />
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I am not going down without a fight. We are not going down without a fight!<br />
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cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-36617435909282894582013-08-25T08:10:00.000-07:002013-08-25T08:10:00.076-07:00Espesyal na liham para sa aking mga Idol -Janet N. at mga politikoAt dahil malapit na ang National Heroes Day at kayo ay itinuturing kong mga bayani, sa gitna ng aking pagpapagamot sa karamdaman sa bato, inilalaan ko ang espasyong ito para sa isang espesyal na sulat para lamang sa inyo mga idolo ko.<br />
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<b>Dear ate Janet N., at mga kagalang-galang na politiko ng ating bansa</b>:<br />
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Bago po ang lahat, nais ko po talagang ipaalam sa inyo na ako po ay inyong number 1 fan. Hangang hanga po ako sa inyo.<br />
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Ate Janet N., ang galing nyo po talaga. Bagamat kayo ay galing sa hirap, sa isang iglap lamang ay nagkaroon na kayo ng napakaraming bahay kasama na isang malaking bahay na may upper house at lower house. Ang inyong mga sasakyan ay koleksyon ng iba't ibang mga tatak ng mamahaling kotse.(Pwede humingi ng kahit isa?) Ako ay tuwang tuwa nang malaman na meron kayong mamahaling property sa Estados Unidos. Lalo pa akong natuwa ng makita sa instagram at blog ang inyong anak na laging suot ang latest at mamahaling brands at kasama pa ang mga sikat na celebrities. Katumbas yata ang isang party ng anak nyo sa halaga ng isang kidney transplant procedure.<br />
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Saksakan po kayo ng bait. Nagpapatira kayo ng pari sa isang property nyo na may upa na P280,000 kada buwan. Idol ko rin po kayo sa katalinuhan dahil kayo ay isa mga talagang nakakaintindi kung paano ang sistema sa pork barrel. Nakakagawa po kayo ng NGO ng galing sa bula at naipapamalas nyo ang galing ninyo sa negosyo dito.<br />
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Sa aking mga idolo sa paggawa ng batas at mga politiko. Saludo rin po ako sa inyo.<br />
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Sa kabila ng mga paratang ng katiwalian at kung ano pang kalokohan at kahit pa nga "convicted" sa anumang pagkakasala, lagi naman kayong nananalo sa eleksyon at tinatalo ang mga matitinong sumerserbisyo sa bayan. Ako ay manghang mangha din sapagkat alam kong karamihan sa inyo ay napakayaman na, lalo pa kayong yumayaman sa pagpasok nyo sa pwestong inyong kinauupuan. Kaming mga nasa dialysis center ay aliw na aliw pag nakikita ang mga magagara niyong kasuotan tuwing SONA sa gitna ng kahirapan naming kumuha ng pambayad para sa susunod na dialysis.<br />
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Kayo po ay huwaran sa pagsunod ng batas. Marami po kayong naturuang mga tao pagdating sa pagtatago sa mga alagad ng batas at sa pagpapaospital pag mahuhuli na. Kayo ay para talaga sa katotohanan - halata naman sa suporta nyo sa FOI bill at sa inyong mga SALN.<br />
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At gaya ni ate Janet, ang galing nyo pong humanap ng paraan para makalikom ng milyones para sa sarili galing sa kaban ng bayan. Business-minded. Kupit milyon pag may time. Paburger naman dyan! Kayo na!<br />
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Lagi kayong busy, laging may proyekto -- magpapagawa ng daan, masisira, gawa uli, sira uli, gawa uli. Utang na loob namin sa inyo ang mga proyekto nyo na galing sa buwis pero sa inyo nakapangalan na may kasama pang smiling na larawan.<br />
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Di lang kayo pampamilya (sa dami ng pamilya na inyong sinusuporta), pang-isports pa. Buo ang suporta nyo kay Pacquiao pag may laban sa labas ng bansa. Mas marami pa ata ang nasa boxing venue kesa nasa session hall ng Kongreso. Tunay na makabayan.<br />
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Number 1 rin kayo sa pag-imbestiga ng mga bagay-bagay para mapamalas ang galing sa pagdebate pero ang galing nyong umiwas pagbaboy na ang pinag-uusapan.<br />
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Hindi sapat ang sulat na ito para malagay lahat ng mga kahanga hanga niyong mga katangian.<br />
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Isa lang masasabi ko sa inyo. Kayo ang bagong bayaning tinitingala namin. Salamat sa inyo idol, ang bawat Pilipino ay punung-puno ng pag-asa.<br />
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Ang inyong masugid na tagahanga,<br />
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Buboy<br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-67811281259528504852013-08-04T01:45:00.001-07:002013-08-04T01:47:30.327-07:00Being thereYesterday, I received a Facebook message from a colleague who just underwent a kidney transplant through Philhealth's Z-package. He said to me that I could already visit him. I was glad to see that message because for one, it meant that my friend is already OK and number two, I always wondered how it is to be a kidney transplant patient a few days post-surgery and here I am with a patient who is already day 4 post-operatively who is apparently doing well.<br />
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I went to the hospital and asked from the public assistance desk as to where the transplant unit is located. I eventually reached the unit and knocked at the door. Opening the door was a nurse assigned specifically to the unit. He gave me a mask and slippers to wear. I stayed in the waiting area which served as the sala, kitchen and dining area also. Adjacent to it is the actual room of my friend who was already seated on that room's sofa looking very good already. You would not know from his appearance that he underwent surgery. I said to myself, "So this is where I will stay when I will be lucky to have a kidney transplant!" We talked with me staying in the waiting area.<br />
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My friend shared to me his journey toward a transplant which was full of ups and downs, denials, depression and sometimes tears. He said it helped that along the way, he learned that he was not alone and that there are others like me who also have kidney disease which have "adjusted". With the transplant, he realized there are still so many good people and also he took God for granted in the past. And now seeing me, he felt it was his duty now to inspire others, fellow kidney patients to be positive. Without him knowing it, he is actually starting to fulfill his advocacy by talking to me. He is being there for me at that point. He was helping me in a way.<br />
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His younger sister is also being there for him. She donated her kidney without my friend asking her to do so. And his siblings were equally supportive of him helping him cope with his condition as well as raise money. According to him, his friends (also including those not expected to help) came out and supported him and he was very grateful.<br />
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It really helps patients like me to have someone to talk to who can relate to your condition. Soon we will be forming a support group within our dialysis facility. I already started to make a <a href="https://www.facebook.com/groups/636907156322533/">Facebook group which is open to all Filipino Kidney patients</a> which can act as an online support group. In there, people can exchange experiences not just regarding their illness but also sharing ways to get aid from PCSO and other agencies.<br />
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Knowing that people are there for you is like medicine for patients like me. There are many ways to show kidney patients that you are there for them. As simple as a Facebook like is already big enough, what more if it's voluntary donating one's kidney to a one needing it to extend his life. Like many others, I am still in need of a kidney especially that relatives from my mother's side cannot donate because PKD runs in the family. I have B+ blood and as of the moment, CMV negative.<br />
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While waiting for a kidney donor, I have been blessed with many supportive friends and relatives. The support has kept me alive and I intend to pass on the support by being there for my fellow kidney patients.<br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-53470421810208802882013-07-05T23:55:00.002-07:002013-07-05T23:55:39.755-07:00Paying It Forward Using TechnologyI was honored to be invited by a telecommunications company to be one of the speakers last night for their #PayITfwd initiative in front of an audience of bloggers and social good advocates.<div>
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During that event I told a story of how technology helped me with my condition and how I am paying it forward to others like me using technology as well specifically social media.</div>
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When I was diagnosed about 10 years ago, I got really depressed. Acceptance of the diagnosis was hard. I had so many fears. I feared my wife who was then my girlfriend would leave me. I fear the symptoms that my mother experienced before will come and also do their damage on me. Frequent cramps, hematuria, high blood pressure, I hate them all. But with the passage of time, I stumbled into a support group of PKD patients as well as a blog by Valen Cover Keefer. I was amazed to see fellow patients who have gone through so much pain and suffering remain to be positive. "PKD Will Not Beat Me", Valen's blog says it all. In short, I was inspired by their positivity. And from then on, I said to myself, life must go on. My blog, this blog "Even with PKD Life Goes On" was a product of that resolve.</div>
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Being lucky to have some medical knowledge, I vowed to help educate others regarding their kidney disease with the help of my blog.</div>
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When I finally reached end stage kidney disease, social media again provided me with a lift. My blogger friends and social media friends cheered me up with their messages of support and likes. My fundraising efforts also got a needed boost with the help of Facebook, Twitter and Instagram. My friends made be a beneficiary in an event connected to social media. I consider myself really lucky to have technology as a friend.</div>
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And now I am paying it forward. Aside from staying positive posting pictures and updates of my condition, I am planning to establish an online community of Philippine Kidney Patients and Philippine Polycystic Kidney Disease patients where members can express their feelings, ask questions, learn from each other's experiences and lend a listening ear or a helping hand.</div>
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I am inviting Filipino kidney disease patients and/or their family members who are their sources of strength and support, join in either of these two communities where you belong:</div>
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<li class="groupsCleanLinkBorder" style="border-right-color: rgb(219, 219, 219); border-right-style: solid; border-width: 0px 1px 0px 0px; display: inline-block; padding-left: 0px; vertical-align: top;"><div class="groupsCleanLink groupsCleanLinkName groupsCleanLinksSelected" style="background-color: white; border-right-style: none; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 1px; color: #999999; display: inline-block; font-weight: bold; margin-right: 0px; padding: 0px 10px 0px 0px;">
<a href="https://www.facebook.com/groups/filipinopkd/">Filipino Polycystic Kidney Disease Support Group</a></div>
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<ul><a href="https://www.facebook.com/groups/636907156322533/"><b>Philippine Kidney Patients Online Community and Support Group</b></a></ul>
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Let's help each other. Let's learn from one another. </div>
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cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-51936952414472201392013-06-25T01:01:00.000-07:002013-06-25T20:14:06.737-07:00Thankful for hemodialysisHello, once again. Guess what? I now have a working AV fistula for my dialysis.<br />
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Last Friday, one end of the tube was attached to my AV fistula and the other to my IJ access. But on Monday, the two ends where now using the AV fistula. Yehey! In time, the left IJ catheter will be removed and my fear of having another catheter-related infection will be gone for good. Yes! And I look forward to the day when bathing will not be as difficult as it is when I have this IJ catheter on.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaZpX8idcw5FU-Hd6ULz_o-D1KP9z8X0QGgw_re_japyW1ylIWiG8YXOhh7UclQdurGUzBvsStcxt3nNWrcLKhwkJ0UKaskuMoAEidzAlvTiD-R5ElnsYUh5J3outqi7Ykbmm0IYjmhks/s1600/DSC_1431.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaZpX8idcw5FU-Hd6ULz_o-D1KP9z8X0QGgw_re_japyW1ylIWiG8YXOhh7UclQdurGUzBvsStcxt3nNWrcLKhwkJ0UKaskuMoAEidzAlvTiD-R5ElnsYUh5J3outqi7Ykbmm0IYjmhks/s400/DSC_1431.jpg" width="225" /></a></div>
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But wait! For two days a week -- Monday and Thursday, I will have two big needles to contend with. Waaaah! Having needles sticking on your skin is quite painful especially that I am not using any anesthetic cream like EMLA. But I guess, that's really life. No pain. No gain. Sort of. Anyway, the pain everytime will be just at the time when the needle pierces the skin so I just have to bear it.<br />
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My AV fistula is on my dominant arm, the right arm. An attempt was made on the left side months ago but the blood vessels were just too small to make a fistula. Having the fistula on the right has its disadvantages. I can't lift heavy objects using my right hand and I can't turn on my right side when I sleep for fear of having my right arm bear my weight. During dialysis, I can't use the fingers of my right hand to text or navigate a touchscreen smartphone for four hours.<br />
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As I spend more days in the dialysis facility, I am now slowly getting new friends. "Classmates", that's what we call our "dialysismates". As dialysis patients, the dialysis nurses become our friends too. God bless them (dialysis nurses). They really now our part of the dialysis patients' lives. They have become part of my life too.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikEnmknp9VWZLWgLCMKExjZvwghQRNHAROke2TqtvqAV_bIHp6pg-_H4PTqDNXi4iC5kgwEfVondXjtAtr6Eh7nGFVvs72BgT27JotWJcCiwqDVSNHhRyqZcgIAco5PtMKeydEo1gu4-8/s1600/asiarenalcarenurses.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikEnmknp9VWZLWgLCMKExjZvwghQRNHAROke2TqtvqAV_bIHp6pg-_H4PTqDNXi4iC5kgwEfVondXjtAtr6Eh7nGFVvs72BgT27JotWJcCiwqDVSNHhRyqZcgIAco5PtMKeydEo1gu4-8/s400/asiarenalcarenurses.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dialysis nurses of Asia Renal Care 1 (photo courtesy of Frances Adrienne Quijada)</td></tr>
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So now here is more or less my routine during dialysis:<br />
<ul>
<li>Have my weigh in</li>
<li>Pray that the dialysis will go smoothly</li>
<li>Interact with dialysis nurses</li>
<li>Meet Mr. and Mrs. Needles</li>
<li>Short nap</li>
<li>Chat with classmates at times</li>
<li>Check my smartphone once in a while using my left hand.</li>
<li>Update the status of my Facebook account or upload an Instagram photo. (Count number of likes).</li>
<li>Watch a movie on the TV screen (cable TV)</li>
<li>Say goodbye to Mr. and Mrs. Needles</li>
<li>Thank God for another shot at life</li>
<li>Go to weighing scale and observe the weight loss</li>
<li>Thank you to dialysis nurses</li>
<li>Go home excited to see my wife and pet dog</li>
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During dialysis, there may be uncomfortable moments. The 4 hours duration just staying on your chair. The needles. The fixed position of your "dialysis arm". If you just concentrate on these, then dialysis will indeed become unpleasant. But dialysis is also an opportunity to savor a new life as your blood is cleansed from toxins. It is also an opportunity to make new friends and to thank God for the blessing of life and love.<br />
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Thank God for hemodialysis.<br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com1tag:blogger.com,1999:blog-4462656372282944399.post-47249729379491278502013-06-07T05:58:00.001-07:002013-10-09T23:08:30.725-07:00Why I should not envy others despite my sufferings<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOx-fProIxevpfW0bmUiWJVeJdNXSxca8U7cVmJR1Tb6oJCdhzsTSgVYP7rUKioGBuS3U2oDZ6AEHTBGqwmxD2bz0oM7UQ9n594RclPWdIQB2BeyarH-r772xJOHlHduUkxY1qAZlADOQ/s1600/1sthd.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="blogger while on Hemodialysis in Cebu" border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOx-fProIxevpfW0bmUiWJVeJdNXSxca8U7cVmJR1Tb6oJCdhzsTSgVYP7rUKioGBuS3U2oDZ6AEHTBGqwmxD2bz0oM7UQ9n594RclPWdIQB2BeyarH-r772xJOHlHduUkxY1qAZlADOQ/s320/1sthd.jpg" title="" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me with my IJ access while hooked to the dialysis machine</td></tr>
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Ever since I started my journey to a kidney transplant and having hemodialysis here in Cebu, there is no month that I have not suffered something -- it could either be an infection manifested by fever and chills and now frequent clotting of my IJ access which prompted multiple declogging of the catheter. I've gone through the pain of the different procedures, having stitches in both sides of my neck and both arms. Then there's my CMV result --- negative, which is uncommon.<br />
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The past few months, it was summer when people enjoy trips to various destinations showing their pictures on Facebook. While they do that, I was hooked to a dialysis machine. I miss going to the beach. I am sad that I cannot bring my wife anymore to new places that are nice to explore. I have skipped events I used to attend as a blogger. It really appears that all I experienced since my kidney failed are just sufferings because other dialysed patients seem to have no problems with their dialysis as they had gone smoothly.<br />
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And at one point I was envious of the good fortune of others. Minalas lang talaga yata ako.<br />
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I never lost faith in God although I started to request from Him a short break from the trials I am experiencing recently. Just a brief timeout because it has really been a difficult journey.<br />
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But I read <a href="http://www.pkdwillnotbeatme.com/positivity/rich-in-life/">this blog post of Valen Keefer</a>, a PKD patient like me, and it made me realize that I have no reason to envy others. I have no reason to complain because all the while as I suffer, I have been provided the opportunity to enjoy something special which is far greater than going to Boracay or Hongkong, or owning the latest gadget.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqrbDESKNs6KDgNrYKQ_d4DWKNzzlb2Qlicw9jBk_S8VVvyYeJFty3CJlAWRNA0Sr55KihWOnxwfYywG0kyriJEBWjI_G85gYyBz895SfV2UKDKq6fkxLphxQMlWW1TuLcmdxtG7Ydwfg/s1600/pkdwillnotbeatme.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqrbDESKNs6KDgNrYKQ_d4DWKNzzlb2Qlicw9jBk_S8VVvyYeJFty3CJlAWRNA0Sr55KihWOnxwfYywG0kyriJEBWjI_G85gYyBz895SfV2UKDKq6fkxLphxQMlWW1TuLcmdxtG7Ydwfg/s1600/pkdwillnotbeatme.png" /></a></div>
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I look around me. I have a wife who has never left my side who cares for me. I have former students asking me how I am. I have people Cebuanos and non-Cebuanos whom I don't know supporting me through the transplant fund. I have batchmates who expressed their all out support sharing their blessings and giving me medicines. I have teachers, former classmates and a family who check up on me and lend their support even if they are oceans away. I have dialysis nurses who genuinely care for me like any other dialysis patient. I have surgeons who never get tired helping me asking nothing in return. I have colleagues who share their expertise selflessly in managing my case. I have facebook friends who are also real friends who are there to lift my spirits when I'm down with their every comment, like, advice and messages. I have blogger friends who are very supportive. Even my dog Bacter and adopted dog Mushu cheer me up with their presence.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5IlVzfHJjNInRgPbpNr07Wf2WMLCxSPjfZmrtQyBGdJ0zJ-gl7c-AeNFKO0fNJapZPrXO5Ar17F0dPZ8baLpwDJfedjfbYumaONu4kdbdm8O_bgkpLnGF-zq01hxNYmE_Kesbshqn6ac/s1600/bactersmile1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5IlVzfHJjNInRgPbpNr07Wf2WMLCxSPjfZmrtQyBGdJ0zJ-gl7c-AeNFKO0fNJapZPrXO5Ar17F0dPZ8baLpwDJfedjfbYumaONu4kdbdm8O_bgkpLnGF-zq01hxNYmE_Kesbshqn6ac/s320/bactersmile1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My number 1 cheerleaders, Bacter and my wife</td></tr>
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Everyday, I am given the opportunity to experience love and I can really feel the LOVE. What more can you ask for?<br />
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Valen is right. Like her, I too am rich in love.<br />
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Thanks Valen for making me realize that.<br />
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<br />cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-48676390470265998212013-05-30T23:21:00.000-07:002013-05-30T23:21:07.406-07:00Another series of recent trialsJust recently I had my IJ catheter access transferred from the right to the left after 5 days rest without a catheter for dialysis. This was brought about by an infection in the IJ after two and a half months manifested by fever and chills after dialysis. I was given ciprofloxacin oral tablets and had IV vancomycin treatment. Good thing symptoms stopped after the catheter was removed.<br />
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So now I have a left temporary access plus an AV fistula on the right arm in preparation for a possible longer period of dialysis? Why? Because my search for a donor suffered another setback.<br />
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It turns out I am so far CMV IgG negative which is quite rare. It means I have not been exposed to the CMV or Cytomegalovirus. Most people including my latest prospective donor is CMV IgG positive. A CMV IgG Donor positive/Recipient negative combination has the highest risk among kidney transplant patients to end up having CMV disease. There are antivirals available for prophylaxis to decrease the risk but it is too expensive for me. I need more funds should I want to proceed with this. I chose to patiently look for another donor which may hopefully be CMV IgG negative. And still with this, I need more funds to raise to safely get me through posttransplant medication expenses.<br />
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If God really wills me to have this kidney transplant, I guess I will eventually find a donor. Should you be interested to donate for me, I am looking for Type B+ (my blood type) or Type O+ (universal donor) kidney donor. Just send me a private message.<br />
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Meanwhile, school is fast approaching. I thank my employers for still retaining me at least for the next six months. It will really be a bigger problem if I am not receiving any salary.<br />
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I am adjusting to the presence of an AV fistula on my right arm. I don't curl or turn side to side anymore when I sleep. I am still not getting used to it.<br />
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The left IJ is not working as well as it should as compared to when I have my IJ access on the right side. Well maybe because the route to the superior vena cava is not straight with the left IJ. I am praying my AV fistula matures fast so I could have better "cleansing" from my dialysis and avoid blood loss due to clotting in the tubes or the dialyzer.<br />
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With regards to my fundraising, I am planning to have other means of raising funds perhaps T-shirts selling or fun runs. But I need help in organizing these things aside from my wife and family.<br />
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Before I end this post, I would like to thank my wife for being patient with me and taking care of me through all these. I am lucky to have her. She really sacrificed a lot for me losing sleep in times when I have fever and chills at night or if I am in pain. She arranges everything when I am in the operating room for procedures. She accompanies me to the ER. She is with me through rough times and I thank God for her.<br />
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I hope she likes the Gabii sa Kabilin experience tonight. It's just a small thing I could give her with all the things she has done for me.cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-86324281221769637992013-05-19T03:23:00.000-07:002013-05-19T03:23:57.626-07:00Asking for Prayers for a Successful Permcath InsertionAs you msy already know, I only have an IJ catheter, a temporary one as vascular access for my hemodialysis as of the moment. This came about when an attempt at a AV fistula access for hemodialysis was unsuccessful. My blood vessels turned out to be really small. It is because of this that inserting an IJ catheter temporary access proved to be a challenge.<br />
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Now after more than 2 months of the IJ access, it is time to change to a Permcath. Unfortunately, I am having fever and chills after every dialysis so apparently a biofilm has already formed on the catheter that I have. I was placed on Vancomycin IV antibiotics after dialysis and this Monday, the catheter will be removed. The plan is to be without a catheter for the meantime until the next dialysis.<br />
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Immediately before the Thursday sked of dialysis, the Permcath will be inserted. I am hoping a successful catheter insertion. I was told that catheter insertion was even more challenging because this is for the 3rd time, the first time with a Permcath. The surgeon plans to do fluoroscopic-guided insertion this time.<br />
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I ask for prayers for a complication-free surgical outcome next week. Please Lord, make it easy on my surgeon to insert the Permcath. And I do hope the fever and chills after dialysis stops. No infection for a long time please.<br />
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The procedure will most likely be done in Chong Hua Hospital. It is expected to be more expensive.<br />
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So I am continuing my plea for donations. The month has been already tough for me since we are already paying for every dialysis session (PHP 2,500) and erythropoietin injection (around PHP 1,000) to save some days for the Z-package of Philhealth for kidney transplants.cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0tag:blogger.com,1999:blog-4462656372282944399.post-65966688882684199122013-05-09T14:54:00.000-07:002013-05-09T14:57:52.845-07:00While waiting for a kidney transplantIt's been a while since I last posted. Tests for my new prospective donor are still ongoing and I am patiently waiting with some concern that my IJ access will not hold up and I might end up having another catheter-related infection (God forbid).<br />
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Meanwhile, I've been busy with preparing the materials for my research which I will endorse to assistants. I also prepared some forms and procedures to make it easy for them to perform the study. I am set to write two physicians for advice on research funds. I am also editing a school manual. Back to usual business shall I say.<br />
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However, two days ago, I felt unusually tired. Looks like things are not really the same as they use to. But I can't seem to get rid of the teacher in me. I really love schoolwork and I want to continue doing it as my contribution to society. Which is why I am appealing again for your generosity to help me fund my transplant expenses. There is a Paypal donate button on the left side of this blog if you want to donate. I do hope the kidney transplant will push through.<br />
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Aside from easy fatigability, I once in a while experence itchiness in my elbows, knees and other parts of my extremity. I make sure I don't scratch them but it's kinda hard to resist.<br />
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I miss my days as a blogger attending events so I attended two (with a face mask) - a general assembly of our bloggers' community. I was glad to see my fellow bloggers' faces again offline. I also attended a seminar for cervical cancer awareness to <a href="http://www.cebumd.com/2013/04/why-we-should-support-she-matters.html">express support for She Matters</a>, a cervical cancer foundation.<br />
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There's a national election, this coming Monday. I think despite my condition, I will go out and vote. This election is too important to miss. I think other Filipinos should go out and vote too...and VOTE WISELY. <a href="http://www.cebumd.com/2013/04/philippine-elections-2013-some-sites-to.html">DO NOT VOTE BASED ON NAME RECALL</a>.cebumdhttp://www.blogger.com/profile/04770663830004684117noreply@blogger.com0