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.

Another series of recent trials

Just recently I had my IJ catheter access transferred from the right to the left after 5 days rest without a catheter for dialysis. This was brought about by an infection in the IJ after two and a half months manifested by fever and chills after dialysis. I was given ciprofloxacin oral tablets and had IV vancomycin treatment. Good thing symptoms stopped after the catheter was removed.

So now I have a left temporary access plus an AV fistula on the right arm in preparation for a possible longer period of dialysis? Why? Because my search for a donor suffered another setback.

It turns out I am so far CMV IgG negative which is quite rare. It means I have not been exposed to the CMV or Cytomegalovirus. Most people including my latest prospective donor is CMV IgG positive. A CMV IgG Donor positive/Recipient negative combination has the highest risk among kidney transplant patients to end up having CMV disease. There are antivirals available for prophylaxis to decrease the risk but it is too expensive for me. I need more funds should I want to proceed with this. I chose to patiently look for another donor which may hopefully be CMV IgG negative. And still with this, I need more funds to raise to safely get me through posttransplant medication expenses.

If God really wills me to have this kidney transplant, I guess I will eventually find a donor. Should you be interested to donate for me, I am looking for Type B+ (my blood type) or Type O+ (universal donor) kidney donor. Just send me a private message.

Meanwhile, school is fast approaching. I thank my employers for still retaining me at least for the next six months. It will really be a bigger problem if I am not receiving any salary.

I am adjusting to the presence of an AV fistula on my right arm. I don't curl or turn side to side anymore when I sleep. I am still not getting used to it.

The left IJ is not working as well as it should as compared to when I have my IJ access on the right side. Well maybe because the route to the superior vena cava is not straight with the left IJ. I am praying my AV fistula matures fast so I could have better "cleansing" from my dialysis and avoid blood loss due to clotting in the tubes or the dialyzer.

With regards to my fundraising, I am planning to have other means of raising funds perhaps T-shirts selling or fun runs. But I need help in organizing these things aside from my wife and family.

Before I end this post, I would like to thank my wife for being patient with me and taking care of me through all these. I am lucky to have her. She really sacrificed a lot for me losing sleep in times when I have fever and chills at night or if I am in pain. She arranges everything when I am in the operating room for procedures. She accompanies me to the ER. She is with me through rough times and I thank God for her.

I hope she likes the Gabii sa Kabilin experience tonight. It's just a small thing I could give her with all the things she has done for me.

Asking for Prayers for a Successful Permcath Insertion

As you msy already know, I only have an IJ catheter, a temporary one as vascular access for my hemodialysis as of the moment. This came about when an attempt at a AV fistula access for hemodialysis was unsuccessful. My blood vessels turned out to be really small. It is because of this that inserting an IJ catheter temporary access proved to be a challenge.

Now after more than 2 months of the IJ access, it is time to change to a Permcath. Unfortunately, I am having fever and chills after every dialysis so apparently a biofilm has already formed on the catheter that I have. I was placed on Vancomycin IV antibiotics after dialysis and this Monday, the catheter will be removed. The plan is to be without a catheter for the meantime until the next dialysis.

Immediately before the Thursday sked of dialysis, the Permcath will be inserted. I am hoping a successful catheter insertion. I was told that catheter insertion was even more challenging because this is for the 3rd time, the first time with a Permcath. The surgeon plans to do fluoroscopic-guided insertion this time.

I ask for prayers for a complication-free surgical outcome next week. Please Lord, make it easy on my surgeon to insert the Permcath. And I do hope the fever and chills after dialysis stops. No infection for a long time please.

The procedure will most likely be done in Chong Hua Hospital. It is expected to be more expensive.

So I am continuing my plea for donations. The month has been already tough for me since we are already paying for every dialysis session (PHP 2,500) and erythropoietin injection (around PHP 1,000) to save some days for the Z-package of Philhealth for kidney transplants.