Open Letter to President Aquino in behalf of all Hemodialysis Patients in the Philippines

December 30, 2013

His Excellency Benigno Simeon C. Aquino III

President of the Republic of the Philippines

Malacañang Palace

J.P. Laurel St., San Miguel, Manila 1005

Dear Mr. President,

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.

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.

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.

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.

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.

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)?

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.

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.

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.

Sincerely,

Dr. Narciso Tapia, MHPEd

President, Smiling Kidneys Club (a kidney and hemodialysis patients support group based in Cebu)

Hemodialysis Patient

Sign the online petition with the same content as above by clicking http://chn.ge/1lCmn6u then share to others. Thank you.

#PhilHealth #DOHphilippines #hemodialysis

Nativity

As we celebrate Christ's birth, let me look back at the year that was.

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.

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.

Smiling Kidneys Club family based in Asia Renal Care 1 Cebu

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.

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.

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.

Visit us and inspire the patients with your likes at https://www.facebook.com/pages/Smiling-Kidneys-Club/569366866479794?ref=hl

Support us on our future plans and projects.

Dream come true: Renal Support Group establishment and Best Cebu Blogs nomination

It'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.

November was not entirely a bad month though.

Smiling Kidneys Club renal support group's first meeting

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 via Facebook group 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.

Another dream coming true is being selected as a finalist in the Best Cebu Blog Awards (BCBA) 2013 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.

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.

The awarding night will be on December 7, 2013 6 PM at the Avalon Building, Cebu Business Park.

Thanks to Gold sponsors like Jollibee, Greenwich Pizza and Pasta, Globe, Primary Homes along with Bronze Sponsors like Maribago Bluewater, Starbucks Philippines, Dr. Xavier G. Solis Dental Clinic, the awarding ceremonies will materialize. Gratitude also goes to Island Grill, Javders, Cebu Bloggers Society,  tenminutes.ph and i-Snaps Photography.

Figuring Out what God's Plan is

For 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.

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.

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.

with Abby Asistio

I also had a reunion with my Ceboom Hazelers FitFil team with our former fitness coach, Biggest Loser Philippine Edition alumna Hazel Chua.

With Coach hazel Chua

God has been very good to me keeping me relatively healthy to allow me to be with the company of great people recently.

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  http://bit.ly/bcbtaps and LIKE the entry post there.

Now back to my thoughts...

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?

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.

Fighting our Battles

It 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.

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 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. You may want to take a look and perhaps sign to support the said petition.

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.

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.

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.

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.

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.

I am not going down without a fight. We are not going down without a fight!

Espesyal na liham para sa aking mga Idol -Janet N. at mga politiko

At 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.

Dear ate Janet N., at mga kagalang-galang na politiko ng ating bansa:

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.

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.

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.

Sa aking mga idolo sa paggawa ng batas at mga politiko. Saludo rin po ako sa inyo.

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.

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.

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!

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.

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.

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.

Hindi sapat ang sulat na ito para malagay lahat ng mga kahanga hanga niyong mga katangian.

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.


Ang inyong masugid na tagahanga,

Buboy

Being there

Yesterday, 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.

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.

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.

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.

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 Facebook group which is open to all Filipino Kidney patients 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.

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.

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.

Paying It Forward Using Technology

I 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.

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.

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.

Being lucky to have some medical knowledge, I vowed to help educate others regarding their kidney disease with the help of my blog.

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.

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.

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:

• Filipino Polycystic Kidney Disease Support Group

Philippine Kidney Patients Online Community and Support Group

Let's help each other. Let's learn from one another. 

Thankful for hemodialysis

Hello, once again. Guess what? I now have a working AV fistula for my dialysis.

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.

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.

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.

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.

Dialysis nurses of Asia Renal Care 1 (photo courtesy of Frances Adrienne Quijada)

So now here is more or less my routine during dialysis:

• Have my weigh in
• Pray that the dialysis will go smoothly
• Interact with dialysis nurses
• Meet Mr. and Mrs. Needles
• Short nap
• Chat with classmates at times
• Check my smartphone once in a while using my left hand.
• Update the status of my Facebook account or upload an Instagram photo. (Count number of likes).
• Watch a movie on the TV screen (cable TV)
• Say goodbye to Mr. and Mrs. Needles
• Thank God for another shot at life
• Go to weighing scale and observe the weight loss
• Thank you to dialysis nurses
• Go home excited to see my wife and pet dog

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.

Thank God for hemodialysis.

Why I should not envy others despite my sufferings

Me with my IJ access while hooked to the dialysis machine

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.

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.

And at one point I was envious of the good fortune of others. Minalas lang talaga yata ako.

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.

But I read this blog post of Valen Keefer, 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.

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.

My number 1 cheerleaders, Bacter and my wife

Everyday, I am given the opportunity to experience love and I can really feel the LOVE. What more can you ask for?

Valen is right. Like her, I too am rich in love.

Thanks Valen for making me realize that.

Another series of recent trials

Just 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Asking for Prayers for a Successful Permcath Insertion

As 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.

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.

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.

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.

The procedure will most likely be done in Chong Hua Hospital. It is expected to be more expensive.

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.

While waiting for a kidney transplant

It'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).

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.

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.

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.

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 express support for She Matters, a cervical cancer foundation.

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. DO NOT VOTE BASED ON NAME RECALL.

Challenges of My Situation

For a patient undergoing dialysis and waiting for a kidney transplant, life isn't easy and there are many challenges.

One is the challenge of being able to keep up financially. We know that a transplant is expensive but even before transplant, there are already many expenses such as:

• twice a week injection of erythropoietin (around 1,200 PHP each)
• dialysis (around 1,500 PHP each if Philhealth benefit already consumed)
• dialyzer (changed/paid every 10 sessions especially if Philhealth session is already consumed)
• antibiotics (when there is an infection)
• donor testing and other expenses like tissue typing, CMV, HIV testing, transportation, food, etc.
• my own lab tests
• others (lotion to help relieve itching, TUMS, materials for dialysis like gloves, transportation after dialysis, etc.)

I plan to take freelance writing opportunities since working at home and choosing the work hours is possible so as not to put a strain on my health.

Of course there is the ongoing fundraising effort where everybody is welcome to donate. ( Instructions and form found here https://docs.google.com/forms/d/1KWEr_V0kkRbrxz8mx37l6_sB_8Gyedayu1m25kzhHDo/viewform )

Another challenge is overcoming being "paranoid" of certain things. Being afraid of having fever during dialysis again, I often worry of my dialysis access for example. Sometimes negativity ensues. Good thing I have a brave and patient wife to assure me everything is fine.

Fear of what is to come is another challenge. Bilateral nephrectomy alone is a major operation where both of my kidneys will be taken. Then there's the transplant. I can't help but think about what is to come. That is where words of support and encouragement from friends help. Facebook likes, comments and messages do help.

Avoiding infection is also a challenge. I avoid crowds, wear mask and I make sure I eat well. I had vaccinations before that can also help.

When a setback happens, staying positive is a major challenge. During my febrile episodes and when my wife was rejected as kidney donor, me and my wife relied on faith, prayers and the support of friends and relatives to cope.

So really, it is not easy to be in this situation but it does not mean that I should not smile already. I know that God allowed these things to happen because I can bear it. Life still must go on. I know that there's a rainbow after the rain. (Wait! Teka. Parang kanta yun ah.)

Have a nice day!

Meanwhile, Helping a Fellow Friend in Need

You know what? Even with all the challenges that came my way...the month long fever, the rejection of my wife as kidney donor and many more, I am still thankful to God that I am now relatively better. My appetite is back and I do not already feel weak although I still get tired easily.

With regards to the donor search? Still none but I remain hopeful.

Oh by the way, my parents visited me and I am glad they saw me in this "improved" state. Do not want them to worry to much especially now that they are old. They saw me while being hooked to the dialysis machine and since it was Holy week, we prayed and have some reflections during dialysis.

This week, I received bad news. (Do not worry, it is not regarding my condition.) But a very good friend of mine (Chester Dave Ricafrente) was hospitalized in Quezon Medical Center. His blood counts are low and looking for blood type A+ donors turned out to be difficult for them. At the same time he was nursing a fever. He was put on isolation in a solo room and was put under the care of a hematologist.

Also, his hemoglobin was dropping fast reaching levels below 5 and I just hope his friends and relatives realize that his condition is not a simple one and they have to get blood donors fast.

Having an idea of the possible diagnosis and knowing that they just recently welcomed a new kid, I can just imagine what is going through the mind of my friend right now. Anyway, the least I could do was offer encouragement and share my experiences especially with regards to fundraising. I am no expert but I thought maybe it could help.

So I help set up my friend's Facebook Fundraising page at https://www.facebook.com/DaveRicafrentesMedicalFund

There one could find updates regarding his condition and potential donors can see how they could help.

I do hope my friend receives help also. I am lucky that many people helped me thru prayers and donations and I am very thankful to all of them. I wish the same for my friend. Even if I am sick, it doesn't mean I won't think of my fellowmen already.

Dave, just hang on my friend. Together we will remain steadfast in our faith in God. His will be done.

Looking for a Kidney Donor Anew

This morning, we were scheduled to meet with my transplant surgeon to finally know if my wife will be able to donate a kidney to me after a battery of tests including a nuclear GFR scan. To recall, my wife is a compatible blood and tissue match to me and was thus considered a prospective donor.

The surgeon began by showing the nuclear GFR results to me and my wife. He explained that my wife's GFR did not meet the cutoff. This was due to her right kidney which appeared to have scarring. If she donated her left kidney, the remaining right kidney will not be able to sustain the required functions for long. In other words, it will not be good for her health to donate a kidney.

I thank my wife for her willingness to donate a precious part of herself, her kidney. But now that she won't be allowed to donate a kidney, we are now in search of a new kidney preferably from relatives of my father's side since autoomal polycystic kidney disease (the cause of my kidney woes) runs in my mother's side of the family. My mother, her siblings and her father had it and they all died because of it.

But kidney donors can also come from my friends.

For those interested but have fears, concerns or questions, I could bring him or her to my transplant surgeon who is willing to answer any question and address one's concern or fears.

By the way, I am Blood Type B+. One can contact me thru this blog or leave me a message at my Kidney Transplant Fund page.

I will be very grateful to this person who will turn out to be my kidney donor. I definitely still want to be part of the formation of future physicians as a medical teacher. I still want to educate my readers thru my blogs. I still want to spend time with my loved ones. I still want a second chance at life.

Please help me with this wish.

The Transplant is already near

After several months of submitting requirements, lining up in various offices, my Z-package appears to be becoming a reality now. Tests on me and my wife, the prospective kidney donor are now being done in coordination with the Vicente Sotto Memorial Medical Center (VSMMC).

We submitted sputum and stool samples. Blood was extracted from us for various tests. We had ECG and Chest X-ray. All of these are for free as part of the benefits. I think we will also have other tests done outside VSMMC next week.

We are really near the homestretch. All I have to do is to get stronger and prepare for the bilateral nephrectomy. The nephrectomy is needed to eliminate the kidneys as a source of possible infection during transplant. To recall, I have recurrent UTIs for years. Removing the very large kidneys also will provide a space for the new kidney. The nephrectomy will be performed by a relative of my wife who is a urosurgeon. It will be done in Cebu Velez General Hospital due to financial considerations. (I enjoy a discount there in the labs and room, etc. )

The good news is I no longer have fever postdialysis. I already passed through the stage where it is difficult to eat because of oral thrush. I still have my antibiotics though -- like Levofloxacin and IV Vancomycin. Vancomycin 1 dose costs almost PHP 5000 so I thank the Lord for the donations that keep on coming.

Please do continue to send them as we will have to deal with the high cost of posttransplant medications. Total amount raised so far for the transplant fund is PHP 552,513. For the immediate needs posttransplant, we need to raise 1 Million pesos by April 15.

You can still send your donations to IVY MATA TAPIA, BPI Savings Account Number 1026 9288 02, General Maxilom Avenue branch.

Most important of all, please do continue to pray for me. Prayers can move mountains.

P.S. Special thanks to Cebu Bloggers Society and Rappler MOVE.Ph for their continuing support.

Time to Thank the Lord

My application for Z-package has been submitted and it will not be long when further tests for me the recipient and donor will be performed coordinated by Vicente Sotto Memorial Medical Center. Can't wait for the test schedule and nephrectomy. Thank you to the transplant coordinators in VSMMC.

Meanwhile, for the first time, I have my appetite slowly returning. But there's an unexpected surprise.

My BP is relatively low and I am not even taking antihypertensive medications. Last night during dialysis, I had an episode of hypotension. Good thing the nurses where active and they were able to keep me comfortable.

I no longer have fever during dialysis but can't seem to point out why I have fever the night following a dialysis. I am already on Vancomycin IV and Levofloxacin PO.

Well what's important is I'm becoming better. Oral thrush also is gone and thanks to my friends and supporters who prayed for me, I'm not losing hope.

One thing I learn from this experience is you need to have a strong faith in God. It is not easy that is why, strong faith is needed.

At this point, I would like to thank all who donated. The funds has reached the 500 thousand mark and with your continued support, we will be able to afford the posttransplant medications.

I would like to also thank my wife for being the stabilizer. She sacrificed a lot for me. Not to mention she will be my donor. From work, imagine she has to act not just as a housewife but also as a nurse. She ensures that I receive my IV treatment. She prepares the Soluset, Heplock, etc. Having her do this ensures a great savings as I do not need to be admitted in the hospital.

Lord, please continue to grant my wife the Strength to do what she is doing. I thank you Lord for giving me a very patient wife. I do not know what would I be without her. I am lucky indeed.

I see the same thing inside the hemodialysis unit. Very dedicated spouses, siblings taking care of their patients. Lord bless them too.

A Plea to Make Easier Requirements for Government Hospital or Surgery Discounts

To begin with, I do not have enough money to afford a kidney transplant. So when the Z package of PhilHealth was launched last year, I felt there was hope at last. I decided to apply under the co-pay classification where the patient shells out a maximum of 600 thousand pesos as his contribution to the transplant.

Since my fundraising efforts has not reached 600 thousand, I pleaded that my contribution be lesser than the maximum. Thus I was referred to the social welfare office for evaluation of my financial capability.

What I got was a long list of requirements in two pieces of paper handwritten.

• Residence certificate - my own , my wife's and all immediate relatives who will help shoulder the surgery. (Have already mine and my wife's)
• Certification that I own or do not own "real property" or "land" from the City Assessor's Office. (also my wife's and immediate relatives who will help.)
• Certification that I own or do not own a business. (In my case, I do not own a business and I do not own any property or land.) Same thing with my wife and immediate family who will help.
• latest ITR (have both mine and my wife's already)
• 1x1 picture and whole body picture
• Certification of Employment specifying position, salaries, deductions and the latest payslip
• PhilHealth MDR
• Certification from SSS (not just an ID, but certification..Imagine long lines) that I, my wife and those immediate family who will help me are members or not.
• Certificate from barangay of residence for me, my wife, etc.
• A social case study report from DSWD (I think it is based in Labangon).

And I will be getting all of these while I am undergoing this...

and this because of recurrent fever..

I hope there is an easier way to get all of these. I need a bilateral nephrectomy right away to stop once and for all my recurrent UTI and to accommodate a new transplanted kidney.

I do not have household help to do chores or run errands for me. I do not have a car to bring me anywhere. I have to report to work while waiting to continue receiving salary and I am relatively immunocompromised to face many people in the long lines. Is there a better way or system to get all these requirements if we truly want to help the poor sick people? I am not speaking for myself only here.

Attention senatoriables @UNAsaSenado, @TeamPNoy2013, @piacayetano, aspiring or returning congressmen!Vice president @VPJojoBinay DSWD? @dinkysunflower @tomasosmena

I am one of the masses you promise to serve. All I want is a chance at the Z-package. The only problem is I would prefer to pay less than the maximum 600 thousand because I have to think of the immunosuppressive drugs (na di dapat tipirin). With time, I can raise the funds for the expenses posttransplant. And PhilHealth allows a patient actually to pay less than the 600k maximum based on the memos online. 

My wife is a willing donor. She is already compatible with me in blood type and tissue type. Only a pre-approval is needed for us to proceed with her other tests if she really is healthy enough to donate.

Meanwhile, my bills for the antibiotics are piling, my IJ access is reaching one month when it will be prone to infection, and my will is being tested.

Yes I am a doctor but I am not a practicing one. My sole job is a medical teacher and I entered medical school through a scholarship where I strived to learn about the disease of my mother and predecessors which I now also have. 

Like the others, I am getting the requirements one-by-one but I expect it to take some time with my condition. And I will be risking infection which will be another problem. I understand the requirement. I am just asking, "Can you make it easy on patients because they really need help?" 

By the way, here is my humble Facebook page for raising funds at https://www.facebook.com/DocBuboysKidneyTransplantFund

Social media, my best friend during dialysis

This is how I spend my time in the dialysis facility... Opening facebook, answering messages, interacting with friends. I also log into twitter. Believe it or not, social media helps keep a smile in my face.

Kidney transplant, also for non-millionaires who need it

It was Day 4 of my Hemodialysis session and I met this fellow patient who was also having dialysis in the same facility as I am. We shared our stories, the reason why we came to this point. I asked him how long he has been on dialysis and how was he doing. At one point I asked him if he was considering a transplant. He replied no because a transplant costs 2 million pesos.

Hearing this I just realized that apparently there are still end-stage renal disease patients who are unaware of the Z-package for kidney transplant patients and one example is the patient I just met.

And so I told the guy that there is already a Z-package which will reduce the cost of transplant alone to less than a million (excluding anti-rejection meds) if as a co-paying patient or sponsored if classified as an indigent patient. The guy replied that he will still not avail of the Z-package because he does not believe he can afford the package.

And so it struck me. He may not be alone in his belief. Perhaps many patients like him still believe that they do not really have a chance to undergo a transplant under the PhilHealth Z-package.

I am hoping that my kidney transplant under the Z-package will be successful so that I may inspire others to avail of this very timely package and therefore have a second chance of life even if they are not affluent.

Meanwhile I am preparing for an upcoming bilateral nephrectomy this week, an equally difficult procedure. And after that, another challenge...going through days without a single kidney while waiting for the transplant.

Please say a prayer for me and my surgeons and my team of doctors. Say a prayer also for all the other patients who are on hemodialysis who may want to go through kidney transplant. That they not be discouraged by their financial standing.

Kidney transplants should not be for rich patients only. With the Z-package, there is hope for others who are not millionaires.

The tough journey begins with my first hemodialysis

Entering the operating room, I was greeted with a smile by the anesthesiologist (in another operation which has not yet started) and it was a good start for the day especially that I was quite nervous knowing that my blood vessels are small from the previous attempt to make an AV fistula in my arm.

I was in the OR for a procedure to create an access for hemodialysis in the internal jugular vein. It helped that I saw some familiar faces and that my wife was around. As the operation started, I was in a Trendelenburg position with my body laid flat on the back and my feet higher than the head like a volunteer for a magic show. Perhaps I indeed need some magic working for me as my veins are quite "challenging". True enough, there was some difficulty in inserting the catheter but thankfully it was resolved. If you ask if it is painful, I can say what I felt more was the discomfort of having something somewhat pierced to your neck than the pain. I felt like a cyborg with a line for refueling.

Anyway, below is the pic of me after the procedure.

Immediately after the procedure (with this look), I went to the administration office of my employer to take care of some PhilHealth requirements for transplant. Unfortunately, I wasn't still able to get a certain signed document I was requesting. (I hope they realize the urgency of the situation so please help me pray for that.)

Later in the afternoon, I reported to the hemodialysis center. I always wondered what is inside and how does it feel to be in a dialysis center. I do not know if it was luck or what but the in-house physician happened to be an alumnus of my college before and we have common acquaintances so the conversation with her and the center's senior nurse helped eased my feelings towards going to the dialysis.

Inside I met the other hemodialysis patients. I still consider myself lucky that I can still walk around relatively "healthier" than most inside. I thank God that my kidneys still have some function left and I can still urinate. I have read all about dysequilibrium syndrome and some possible side effects of dialysis and I thank God I did not experience those during and after the dialysis.

I noticed there was a TV in the ceiling for patients to watch. Mine was showing HBO. But being the social media enthusiast that I am, the first thing I asked was, "What's the wifi password?" The staff did not know. However I was still able to access the net somehow without a password so I did some "camwhoring". Hehe. I will just post one photo here. Yup that's me smiling.

My first session was just 2 hours but even 2 hours is quite long for a newbie like me. I just tinkered with my phone playing fruit ninja and answering messages on facebook. And before I know it, the 2 hour session was over. 0.4 kg was taken from my original weight and I am due after a day of no dialysis for my second session this Thursday. This time it will be 3 hours.

Meanwhile I am going to go back to my employer again later for the PhilHealth requirement which I really need and which I hope they will already give. Then visit my urosurgeon for the next challenge -- bilateral nephrectomy early February.

Please do pray for me. Any form of help is really appreciated. (And my paypal donate button is still around in this blog.)

Till next time. And thank you for the overwhelming messages of support and prayers in Facebook.

Transplant preparations update for January

The past few weeks, I have been very busy. It's because before the Big Day comes, I would like to put things in order especially my schoolwork.

Had lab tests where my electrolytes were within normal range although my creatinine is still on the rise. I still have good urine output though. No swellings or edema anywhere and I feel good.

Visited my team of doctors. In one of those visits, I had my first erythropoietin injection and boy it was quite painful. I think I prefer the pain of venipucture than a subcutaneous injection. Anyway, the hormone was administered by my wife so somehow it helped lessen the pain. Being anemic already, the plan was to raise the hemoglobin high enough so that it will be less likely for me to have a transfusion later. I will have erythropoietin twice a week says my nephrologist. Then I will have IJ access on the 28th then dialysis.

We also planned where dialysis will be held and in which hospital the procedures will be done.

The Feast of the Child Jesus or the Sto. Nino (Cebu's patron saint) is fast approaching. I really requested that the procedures be done after this feast not because I want to dance during the Sinulog festival. Somehow I want to build up the spiritual and emotional strength as well and partipating and witnessing the people showing their devotion during the Holy Mass at the Basilica Minore del Sto. Nino Pilgrim Center grounds really helps.

My favorite part is when people raise their hands as they sing in unison the BatuBalani sa Gugma.

Fundraising efforts are also doing OK. I thank my colleagues especially from the Philippine Society of Microbiology and Infectious Disease (PSMID) Cebu Chapter for really supporting me in my ordeal. I really appreciate it.

Special thanks also to my friends in Candelaria, Quezon Province. They still remember me and I also cherish that.

I can really feel the Divine Providence. When there's a problem, somehow some help arrives. I know the Lord will help me get through this with the help of family and friends.

As the Sinulog or the Feast of the Child Jesus comes, I have a request. Please include me in your prayers during the novena masses and in the procession so I may continue to be strong.

And to my surgeons, can you play Les Miserables soundtrack during surgery?  #wishfulthinking