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Sunday, December 28, 2014

My New Year's Wish for Hemodialysis Patients in the Philippines (especially Cebu)

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...

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.

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!"

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,

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.

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.

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.

There you have most important wish list for this New Year. I just hope somebody who can do something will be able to read this.

Meanwhile let's greet new year full of hope and positivity

Wednesday, June 25, 2014

A new chapter begins

How 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.

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.

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.

And here is my selfie in my new work environment. It's a job perfect for my situation.

The new job was really an unexpected development and I have the Lord to thank first.

Dr. Annabelle Fuentes deserves a very big thank you next, for the support and encouragement.

Thanks to the hospital administration for trusting that I can help them with regards to research.

Thanks to my wife, of course, who is always there for me.

Also to my colleagues in CIM who believed in me.

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.

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.

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.

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!

Friday, April 11, 2014

Libre Clothing for Hemodialysis: A Review

Libre hemodialysis clothing
Libre dialysis clothing
I finally get to try Libre, a hemodialysis clothing in the United States after it arrive early this month. To recall, I wrote about Libre when I was not still a hemodialysis patient.

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.

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.

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.

Thank you Libre Clothing!

Thursday, April 3, 2014

Updates of our Hemodialysis Support Group

Good to be back blogging here. Been busy with activities of our hemodialysis support group.

Last February we had a fundraiser then a lecture on Calcium and Phosphorus by nephrologist Dr. John Li.

Partcipants of the Calcium Phosphorus lecture

Dr. John Li lectures about Calcium and Phosphorus

Mini lecture on renal nutrition

Smiling Kidneys Club summer beach outing

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.)

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.

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.

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.

Sunday, February 16, 2014

Bacter and Me: A tribute to our beloved best friend

My dog Bacter and me
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.

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.

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".

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.

Bacter, less than a year old with his favorite toys
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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.
Was not feeling well during this time but Bacter was a source of strength
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.

Bacter: 2003-2014

Saturday, February 1, 2014

What's your hemodialysis age?

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!

So many things have happened during that one year span. There were ups and there were downs. But mostly, it was ups for me.

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.

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.

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?

Tuesday, January 28, 2014

Steps in getting PCSO financial assistance for hemodialysis

Last 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.

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:

  • Picture of the patient
  • 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)
  • Medical abstract complete with physician's complete name, signature, PTR number and license number
  • Official Statement of Account from the dialysis center regarding the costs of the dialysis treatment with the Billing Clerk's complete name and signature
  • 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)
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.

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.

pcso letter

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. 

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. 

Friday, January 10, 2014

Sign my petition on asking for President's help in increasing free Philhealth sessions

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Hi —
I just started a petition on 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. Will you help me by signing?

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

By Narciso Tapia
Cebu City
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 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.


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