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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!

Sunday, August 25, 2013

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


Sunday, August 4, 2013

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.


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