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Tuesday, December 31, 2013

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
MalacaƱang 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

Friday, December 27, 2013

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.

Sunday, November 24, 2013

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.
ARC 1 Renal Support group (Smiling Kidneys Club)
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.


Tuesday, October 8, 2013

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
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
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.
Best Cebu Blog 2013 nominee

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.

Monday, September 16, 2013

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!

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