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Thursday, October 1, 2015

An appeal to PCSO in behalf of hemodialysis patients in the Philippines

Recently, many of our fellow hemodialysis patients nationwide have been told that they won't be able to avail of the PCSO financial assistance for hemodialysis unless the 90 days free dialysis Philhealth benefit will be consumed.
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 due to the lack of information regarding what a hemodialysis patient goes through.
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 we humbly appeal for PCSO to reconsider due to the following reasons:
1. EXPENSIVE ERYTHROPOIETIN AND TRANSFUSIONS.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.
2. OTHER MAINTENANCE MEDS. 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.
3. DIALYZER NOT ALWAYS GOOD FOR 10 SESSIONS. 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.
4. WE ALSO GET HOSPITALIZED. 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.
5. IDEALLY WE SHOULD TARGET FOR 3X a WEEK DIALYSIS.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.
6. DENIAL OF PWD STATUS. 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.
6. 90 DAYS FREE SESSION IS NOT ACTUALLY FREE. 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.
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. 
We appeal to your kind hearts. PCSO management please reconsider.
This petition is found in
If you support this cause, go to the link and "sign" there. Thank you and God bless.

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.


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