It's been a year... and what a year it has been

July 25 marked my 1st year kidney transplant anniversary. And it has been a long way since I started this page to document and share this experience. From being diagnosed of ESRD in January 2013, the months on Hemodialysis, the work up procedures and the snags along the way, the pre and post transplant nightmares, to the slow and steady recovery. Yes, it has been a year... And what a year it has been.

These past few days, I tried to read everything posted on this little corner. They reminded me of the primal reason for starting this blog; I was scared and this was my way of coping. To gather courage to face it, I had to educate myself about the disease. I am no expert but experience taught me a lot. I was so scared but somehow, also never lost hope.

There is nothing in my heart but gratitude to everyone. The support you gave, lent or showed, all contributed to the continued life I enjoy today. From persons closest to me, to colleagues and friends... even casual friends. The tremendous love and outpouring support and prayers I felt and continue to feel make my eyes water with ineffable joy everyday.

I'd like to name all of you but I know this list will never be complete. But I assure you, YOU ARE ALL THIS LIST. I owe today to all of you. 

Robynne, Kuya Noel, Mommy Pilaring, Pica, Claudette, Nanang Liling and Vangie, Uno, Elgee and Ben, Drs Sy, Celestial, Simangan, Patron and Rigor, Fred, Frs Ari, Johnny, Ben, Eko, Tony and the ADMU and XS Jesuit Community, Reggie and the other blood donors, the ADMU and XS Community, The Peñas, The De Las Peñases, Lysil and Louren, my former Hemodialysis classmates, NKTI nurses and staff, PCSO, Kevin, Ninette's colleagues in the ADMU Math Dept, UP Math friends and XS NExT's supermen and women, The Nonos, XS Batch 2003, The Coyiutos, The Revitas, and to all of you.

To Ninette, who has given all her love.

And to God for this miracle.  

Maraming salamat po sa inyong lahat.

Space Mountain, The Ride Part 2: Ng Dahil sa Pigsa

Image from whatisall.yolasite.com

It was in December 2 when I again started to report for work; 4 months after the transplant. It was not easy adjusting to a new schedule. Suddenly, the pace quickened with alarm clocks going off at dawn, fighting daily traffic wars driving to and from work, contending with Metro-Manila's blown out population numbers and the mere stress of city living. I'm very thankful though to my bosses and colleagues at work who welcomed me back with open arms. It is a good feeling to be with them again. And they were very sensitive in making sure I'm not given a demanding workload. It is such a pleasure to be a little bit more productive than just recuperating at home. But, like most, I welcome every weekend and holiday that comes.

Spondylosis and Herniated Disc

It is some years now that I have been having a little pain in my lumbar area. It usually comes after long walks or after lifting heavy objects. But a few weeks after the transplant, the pain has more than doubled in frequency as well as intensity even when not doing anything. And because of the pain, I tend to slouch forward and tend to favor one side when walking. Sometimes, it gets unbearable. 

So I consult a spinal surgeon with Xray results in hand. The main cause of the pain is degenerative bone disease and some prolapsed disc possibly due to wear and tear(aka age), overuse, misuse or abuse. The pain intensifying after the transplant due to atrophy of the lower back and abdominal muscles. For a time and up to now, overloading these muscle groups are contraindicated for me to aid in healing of the transplanted organ.

The spine doctor prescribed, muscle relaxants, pain meds and posture modification.He told me to keep my back erect when standing, seating or lying down. Good thing therapy and surgery are not options yet. But still, I find myself slouching sometimes as it eases the pain a bit.

Infection Episode

A few days after Christmas, I felt that I was developing a blister in my perineal area. I attributed it to too much sitting amidst Metro-Manila’s December traffic and thought nothing of it. It turned out to become a furuncle complete with tenderness and swelling; that’s right, a boil… a pigsa. It was uncomfortable but bearable. Then a few hours before midnight on new year’s eve, I was burning with a 39º temperature. So I texted my neph to inform him as well ask for instructions on what to do. He prescribed paracetamol and antibacterial tablets and he had special instructions… and I quote: Paputukin mo yang pigsa mamayang alas dose!  

The paracetamol and antibiotics helped, but my high fever would often recur and I felt really weak and sick. When I went for a checkup, my creatinine was elevated and my urine was positive of protein. An indication of an uncontrolled infection. That same evening, I checked in hospital. Because of my immunosuppressed state, oral antibiotics did not work... I needed mainlining(antibiotics through IV).

The fever gradually went away and the urologist ordered an IND or incision and drainage procedure. So they scheduled the OR and prepped me. But when we found out that I will be under general anaesthesia, we had second thoughts for I had some bad reactions to anaesthesia after my transplant in July. After due deliberation, the doctors decided against the IND and just concentrate the treatment on pumping in the antibiotics to fight off the staphylococci.

I ended up spending 10 days in hospital and 2 weeks of being sidelined from work. And all just because of a pigsa. 

Breaking

I got my latest test results and consulted with my neph earlier today. The numbers are good and creatinine is down. An indication that I am in the correct immunosuppressed level. Hoping for more improved results in 2 weeks.

Note to self: DIET!    

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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