Diagnosed with ESRD - End Stage Renal Disease in 2010 with 28% kidney function left. In January 2013, it dropped to 5%. Started twice a week Hemodialysis in February. My beautiful and courageous wife, Ninette, came forward willingly to be my donor and we started with the work-up in March. We finally finished everything and got approval 08 July 2013. We had the procedure the 25th of the same month.

Our journey continues...

Friday, January 31, 2014

Space Mountain: The Ride (Part 1)

Image courtesy of Wikimedia

Wow! I can't believe half a year has gone by after the transplant last July. It feels like it was only yesterday when Ninette, my wife selflessly became my donor. I failed to post anything new after the second month. And it has been quite a ride.

Space Mountain. That's right... Disneyland's famous roller coaster attraction. That's how I can compare the past 6 months to. Twisty, uncomfortable, with some deep drops and lateral forces of about 3 Gs. Dark, with limited visual height/depth perception makes it exciting but not at all that scary.

Neoral vs Tagraf
One of the conditions with plenty of twists and turns is finding the correct dosage of immunosuppressant drug. It was a case of hide and seek or more like cat and mouse with cyclosporin(Neoral) which was prescribed to me after the transplant. I would have my blood tested for the amount/level of cyclosporin in my system once a week and it was always off. It is either high and over the desired range or very low and under. Neoral is available in 100mg and 25mg tablets and my neph kept adjusting the dosage by increments of 25mg depending on my level test result. When he ups it by 25mg, I go over the limit. When it is reduced by 25mg, I go under. Being under dosed may lead to a rejection episode. Being over the limit brings toxicity. And either of these increases the creatinine count. It was in early December when I was shifted to another immunosuppressant. I am now in tacrolimus(Tagraf). We are still establishing the desired dose but the frequency of adjustment has been significantly decreased. I am hopeful that this is the right medication for me. My last test was 2 weeks ago. My next is in 3 days. We'll know more then.

The PCSO Experience
These immunosuppressants and the other medications are very expensive. You really need other sources of support in order to maintain all of them. Back in August, Ninette went to the Philippine Charity and Sweepstakes Office(PCSO) on my behalf to apply for aid in post-kidney transplant medication which is in their menu of services offered. For some reason, she was lucky that she only had to go there once. And after about a month of waiting, we were granted some amount that would cover about 2 weeks of immunosuppressants.

Last month, It was my turn to apply. I went to the PCSO office at the Lung Center and I was overwhelmed by the number of applicants. I think there were about 2000 people in that small waiting area. And no exaggeration, it's like that everyday. One has to endure long lines and whole day waits plus several days of needing to go there until you get a grant. It is never easy, but need is grater than comfort. This time around I was able to get an increased amount and it covered a month's worth of anti-rejection medications. 

Next month, I will be eligible again to apply for more aid. I am very thankful that some people have helped a lot in facilitating the aid approval.  

EPO Dependence
Another bumpy ride is this issue with anemia. Up until today, my hemoglobin or red blood cell(RBC) count is still under the desired number. 13 to 17 mg/ml is the normal range for men. Last October, I was at 8.8. That explained why I easily got winded. Walking a little distance would make me pant and I had to rest often. The doctor ordered a battery of tests to find out what was causing the amemia. Good thing internal hemorrhage was ruled out, and so was hemolysis. More tests pointed to iron-deficiency as the cause. Diagnosing that was sort of puzzling for the neph. I had very low hemoglobin results and easily got tired but my outward appearance was not consistent with other anemia patients. Usually, anemics have some paleness especially in the palms but mine were red as a beet.  

An increase of intake of iron supplements was prescribed, so I take about 1500mg of Iberet Folic daily. Also, the resumption of another very expensive drug that comes in a prepared syringe and should be stored inside a refrigerator. Epoetin(EPO) shots 3 times a week coaxes the bone marrow to produce RBC faster. (If you recall, EPO was the performance enhancing drug that Lance Armstrong's team used for doping.) This meant more needle sticks to the abdominal fat to add to the regular insulin shots I inject.

2 weeks ago, my numbers were better at 10.2 mg/ml. Still way below, but at least improving. Optimistically, I look forward to better numbers in 3 days.

Thanks for dropping by.... to be continued in Part 2 soon.                 

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