Why I should not envy others despite my sufferings

Ever since I started my journey to a kidney transplant and having hemodialysis, 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 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.

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.

While waiting for a kidney transplant

It's been a while since I last posted. Tests for my new prospective donor are still ongoing and I am patiently waiting with some concern that my IJ access will not hold up and I might end up having another catheter-related infection (God forbid).

Meanwhile, I've been busy with preparing the materials for my research which I will endorse to assistants. I also prepared some forms and procedures to make it easy for them to perform the study. I am set to write two physicians for advice on research funds. I am also editing a school manual. Back to usual business shall I say.

However, two days ago, I felt unusually tired. Looks like things are not really the same as they use to. But I can't seem to get rid of the teacher in me. I really love schoolwork and I want to continue doing it as my contribution to society. Which is why I am appealing again for your generosity to help me fund my transplant expenses. There is a Paypal donate button on the left side of this blog if you want to donate. I do hope the kidney transplant will push through.

Aside from easy fatigability, I once in a while experence itchiness in my elbows, knees and other parts of my extremity. I make sure I don't scratch them but it's kinda hard to resist.

I miss my days as a blogger attending events so I attended two (with a face mask) - a general assembly of our bloggers' community. I was glad to see my fellow bloggers' faces again offline. I also attended a seminar for cervical cancer awareness to express support for She Matters, a cervical cancer foundation.

There's a national election, this coming Monday. I think despite my condition, I will go out and vote. This election is too important to miss. I think other Filipinos should go out and vote too...and VOTE WISELY. DO NOT VOTE BASED ON NAME RECALL.

Challenges of My Situation

For a patient undergoing dialysis and waiting for a kidney transplant, life isn't easy and there are many challenges.

One is the challenge of being able to keep up financially. We know that a transplant is expensive but even before transplant, there are already many expenses such as:

• twice a week injection of erythropoietin (around 1,200 PHP each)
• dialysis (around 1,500 PHP each if Philhealth benefit already consumed)
• dialyzer (changed/paid every 10 sessions especially if Philhealth session is already consumed)
• antibiotics (when there is an infection)
• donor testing and other expenses like tissue typing, CMV, HIV testing, transportation, food, etc.
• my own lab tests
• others (lotion to help relieve itching, TUMS, materials for dialysis like gloves, transportation after dialysis, etc.)

I plan to take freelance writing opportunities since working at home and choosing the work hours is possible so as not to put a strain on my health.

Of course there is the ongoing fundraising effort where everybody is welcome to donate. ( Instructions and form found here https://docs.google.com/forms/d/1KWEr_V0kkRbrxz8mx37l6_sB_8Gyedayu1m25kzhHDo/viewform )

Another challenge is overcoming being "paranoid" of certain things. Being afraid of having fever during dialysis again, I often worry of my dialysis access for example. Sometimes negativity ensues. Good thing I have a brave and patient wife to assure me everything is fine.

Fear of what is to come is another challenge. Bilateral nephrectomy alone is a major operation where both of my kidneys will be taken. Then there's the transplant. I can't help but think about what is to come. That is where words of support and encouragement from friends help. Facebook likes, comments and messages do help.

Avoiding infection is also a challenge. I avoid crowds, wear mask and I make sure I eat well. I had vaccinations before that can also help.

When a setback happens, staying positive is a major challenge. During my febrile episodes and when my wife was rejected as kidney donor, me and my wife relied on faith, prayers and the support of friends and relatives to cope.

So really, it is not easy to be in this situation but it does not mean that I should not smile already. I know that God allowed these things to happen because I can bear it. Life still must go on. I know that there's a rainbow after the rain. (Wait! Teka. Parang kanta yun ah.)

Have a nice day!