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!

Meanwhile, Helping a Fellow Friend in Need

You know what? Even with all the challenges that came my way...the month long fever, the rejection of my wife as kidney donor and many more, I am still thankful to God that I am now relatively better. My appetite is back and I do not already feel weak although I still get tired easily.

With regards to the donor search? Still none but I remain hopeful.

Oh by the way, my parents visited me and I am glad they saw me in this "improved" state. Do not want them to worry to much especially now that they are old. They saw me while being hooked to the dialysis machine and since it was Holy week, we prayed and have some reflections during dialysis.

This week, I received bad news. (Do not worry, it is not regarding my condition.) But a very good friend of mine (Chester Dave Ricafrente) was hospitalized in Quezon Medical Center. His blood counts are low and looking for blood type A+ donors turned out to be difficult for them. At the same time he was nursing a fever. He was put on isolation in a solo room and was put under the care of a hematologist.

Also, his hemoglobin was dropping fast reaching levels below 5 and I just hope his friends and relatives realize that his condition is not a simple one and they have to get blood donors fast.

Having an idea of the possible diagnosis and knowing that they just recently welcomed a new kid, I can just imagine what is going through the mind of my friend right now. Anyway, the least I could do was offer encouragement and share my experiences especially with regards to fundraising. I am no expert but I thought maybe it could help.

So I help set up my friend's Facebook Fundraising page at https://www.facebook.com/DaveRicafrentesMedicalFund

There one could find updates regarding his condition and potential donors can see how they could help.

I do hope my friend receives help also. I am lucky that many people helped me thru prayers and donations and I am very thankful to all of them. I wish the same for my friend. Even if I am sick, it doesn't mean I won't think of my fellowmen already.

Dave, just hang on my friend. Together we will remain steadfast in our faith in God. His will be done.

Looking for a Kidney Donor Anew

This morning, we were scheduled to meet with my transplant surgeon to finally know if my wife will be able to donate a kidney to me after a battery of tests including a nuclear GFR scan. To recall, my wife is a compatible blood and tissue match to me and was thus considered a prospective donor.

The surgeon began by showing the nuclear GFR results to me and my wife. He explained that my wife's GFR did not meet the cutoff. This was due to her right kidney which appeared to have scarring. If she donated her left kidney, the remaining right kidney will not be able to sustain the required functions for long. In other words, it will not be good for her health to donate a kidney.

I thank my wife for her willingness to donate a precious part of herself, her kidney. But now that she won't be allowed to donate a kidney, we are now in search of a new kidney preferably from relatives of my father's side since autoomal polycystic kidney disease (the cause of my kidney woes) runs in my mother's side of the family. My mother, her siblings and her father had it and they all died because of it.

But kidney donors can also come from my friends.

For those interested but have fears, concerns or questions, I could bring him or her to my transplant surgeon who is willing to answer any question and address one's concern or fears.

By the way, I am Blood Type B+. One can contact me thru this blog or leave me a message at my Kidney Transplant Fund page.

I will be very grateful to this person who will turn out to be my kidney donor. I definitely still want to be part of the formation of future physicians as a medical teacher. I still want to educate my readers thru my blogs. I still want to spend time with my loved ones. I still want a second chance at life.

Please help me with this wish.

The Transplant is already near

After several months of submitting requirements, lining up in various offices, my Z-package appears to be becoming a reality now. Tests on me and my wife, the prospective kidney donor are now being done in coordination with the Vicente Sotto Memorial Medical Center (VSMMC).

We submitted sputum and stool samples. Blood was extracted from us for various tests. We had ECG and Chest X-ray. All of these are for free as part of the benefits. I think we will also have other tests done outside VSMMC next week.

We are really near the homestretch. All I have to do is to get stronger and prepare for the bilateral nephrectomy. The nephrectomy is needed to eliminate the kidneys as a source of possible infection during transplant. To recall, I have recurrent UTIs for years. Removing the very large kidneys also will provide a space for the new kidney. The nephrectomy will be performed by a relative of my wife who is a urosurgeon. It will be done in Cebu Velez General Hospital due to financial considerations. (I enjoy a discount there in the labs and room, etc. )

The good news is I no longer have fever postdialysis. I already passed through the stage where it is difficult to eat because of oral thrush. I still have my antibiotics though -- like Levofloxacin and IV Vancomycin. Vancomycin 1 dose costs almost PHP 5000 so I thank the Lord for the donations that keep on coming.

Please do continue to send them as we will have to deal with the high cost of posttransplant medications. Total amount raised so far for the transplant fund is PHP 552,513. For the immediate needs posttransplant, we need to raise 1 Million pesos by April 15.

You can still send your donations to IVY MATA TAPIA, BPI Savings Account Number 1026 9288 02, General Maxilom Avenue branch.

Most important of all, please do continue to pray for me. Prayers can move mountains.

P.S. Special thanks to Cebu Bloggers Society and Rappler MOVE.Ph for their continuing support.

Time to Thank the Lord

My application for Z-package has been submitted and it will not be long when further tests for me the recipient and donor will be performed coordinated by Vicente Sotto Memorial Medical Center. Can't wait for the test schedule and nephrectomy. Thank you to the transplant coordinators in VSMMC.

Meanwhile, for the first time, I have my appetite slowly returning. But there's an unexpected surprise.

My BP is relatively low and I am not even taking antihypertensive medications. Last night during dialysis, I had an episode of hypotension. Good thing the nurses where active and they were able to keep me comfortable.

I no longer have fever during dialysis but can't seem to point out why I have fever the night following a dialysis. I am already on Vancomycin IV and Levofloxacin PO.

Well what's important is I'm becoming better. Oral thrush also is gone and thanks to my friends and supporters who prayed for me, I'm not losing hope.

One thing I learn from this experience is you need to have a strong faith in God. It is not easy that is why, strong faith is needed.

At this point, I would like to thank all who donated. The funds has reached the 500 thousand mark and with your continued support, we will be able to afford the posttransplant medications.

I would like to also thank my wife for being the stabilizer. She sacrificed a lot for me. Not to mention she will be my donor. From work, imagine she has to act not just as a housewife but also as a nurse. She ensures that I receive my IV treatment. She prepares the Soluset, Heplock, etc. Having her do this ensures a great savings as I do not need to be admitted in the hospital.

Lord, please continue to grant my wife the Strength to do what she is doing. I thank you Lord for giving me a very patient wife. I do not know what would I be without her. I am lucky indeed.

I see the same thing inside the hemodialysis unit. Very dedicated spouses, siblings taking care of their patients. Lord bless them too.