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.