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...

Saturday, August 9, 2014

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.

Monday, February 3, 2014

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. 

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!    

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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Wednesday, September 25, 2013

Day 62 - 2nd Month Post-Transplant Update

Image courtesy of medscape.com

Today is the second month of my new life, having received a kidney from Ninette, my wife, last July 25. What do young people call this occasion? A monthsary?

I went to see my nephrologist yesterday as a follow up on the oral steroid pulsing he started me on 4 days ago.(See previous post) I had a Renal Allograft Doppler Ultrasound done plus blood tests: Creatinine and BUN. Both the neph and I are happy since the results indicate that I am responding very well to the oral steroid pulsing. 

The Doppler Ultrasound did not show any adverse abnormalities and my blood numbers have improved a lot. My Creatinine level went down to 1.9 ml/dL, my best number so far after the transplant 2 months ago. And there's no need for me to be admitted for steroid pulsing via IV.

I'll stay with the current Prednisone level of 60mg per day to check this mild rejection episode and will see the neph again after a week. Then, hopefully, I can again be weaned from steroids. Among the common side effects of high-dose Prednisone are: mood swings, irritability, thrush, increased risk of infection, joint discomfort, high blood sugar, "moonface", acne, high blood pressure, increased appetite, weight gain and fluid retention. So the sooner the dosage is decreased, the better.

Sunday, September 22, 2013

Day 58: Alarm Up!

It was rather a busy week for me doing blood tests and consulting with my nephrologist. My serum creatinine level results show an increasing trend contrary to what was expected. And there is a need to identify what is causing it.

My usual weekly lab tests include
  1. Creatinine - indicator of kidney function; an elevated creatinine level signifies impaired kidney function
  2. Complete Blood Count - used to evaluate overall health and detect a wide range of disorders; abnormal increase/decrease in cell counts indicate that there is an underlying medical condition that calls for further evaluation 
  3. BUN(Blood Urea Nitrogen) - measures the amount of nitrogen in the blood that comes from the waste product urea which is passed out of the body via urine; if kidneys do not remove urea normally, BUN level rises
  4. Lipid Profile - measures levels of lipids/fats, including cholesterol and triglycerides; it assess risk of developing cardiovascular disease or to monitor its treatment
  5. FBS(Fasting Blood Sugar) - indicates the amount of glucose/sugar present in the blood; levels outside the normal range may be an indicator of a medical condition, diabetes in particular  
  6. Urinalysis - checks different components of urine, a waste product produced by the kidneys; minerals, fluids, and other substances from blood are passed in the urine; what you eat, drink, how much you exercise and how well your kidneys work can affect what is in the urine; it helps find causes of symptoms of health problems one may have
  7. Hemoglibin A1C - diagnoses Type 1/Type 2 diabetes; gauges how well diabetes is managed; reflects the average blood sugar level for the past 2 - 3 months; the poorer blood sugar control, the higher risk of diabetes complications
  8. Potassium - detects concentrations that are too high(hyperkalemia) or too low(hypokalemia); hyperkalemia may indicate kidney disease
  9. SGPT- ALT (Serum Glutamic-Pyruvic Transaminase - Alanine Aminotransferase) - give doctors important information about how well the liver is functioning and whether a disease, drug, or other problem is affecting it 
  10. CYA C2 BY CMIA - monitors immunosuppresant/anti-rejection drug levels for management of organ transplant patients; levels below the range indicate lack of immunosuppresant drug dosage, higher than range numbers indicate drug over toxicity
Since the transplant, almost all my numbers have improved and most of them are within the normal range now except for BUN, Creatinine and CYA which needed tweaking by increasing or decreasing medication dosage. Weekly neph consultations are important to monitor symptoms of rejection or infection, both being the banes of transplant patients.

The neph is positive that the increase in creatinine is not caused by rejection or infection because I am asymptomatic of both. No fevers, no edema, no decrease in urine output, no cough/colds, no pain in the graft area.

My anti-rejection drug range is 1000 - 1300 nanograms/milliliter. The table shows my CYA levels and Creatinine the past month:

Date Cyclosporin Dosage
CYA C2 nanograms/milliliter
Range 1000-1300
Range 0.5-1.3
13 Aug 250 366.5 2.1
20 Aug 300 721.2 2.3
03 Sept 350 994.1 1.9
18 Sept 350 2538.7 2-4
21 Sept 250 1018.6 2.5
Other possible causes of increased Creatinine are dehydration, diet excessive in protein and strenuous exercise. I take lots of water, my diet is well-balanced and my exercise consists only of toing and froing an 8-meter carport for 20 - 30 minutes on days when it's not raining. The task now is to identify what causes these irregular levels. 

Therefore I'm in for more visits to the lab and neph this coming week. I'll do repeat Creatinine and BUN tests plus a Doppler Ultrasound of the Renal Graft on Tuesday. To further isolate the results, I was ordered to a low-protein diet and to stop exercising for the meantime.

Meanwhile, just to rule-out rejection, I am placed on a pulsed infusion of oral Prednisone, an increase from 20 to 60mg/day. If the test result still indicate a rising Creatinine level, I may be again confined so intravenous pulsing can be administered. Of course I wouldn't want that. Hopefully, it doesn't happen. 

The journey continues.          
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Saturday, September 7, 2013

Update + Gratitude

Day 43, post-transplant and I am feeling great. My weekly blood results show a remarkable improvement compared to when I was in dialysis and immediately after the transplant. Just to summarize some relevant numbers:

Pre-transplant 2 Weeks Post-KT Most Recent Normal Range
Hemoglobin 10.2 9.7 11.9 12 - 16 g/dL
Potassium 6.20 5.20 4.20 3.5 - 5.10 mmol/L
Calcium 1.90 2.15 2.28 2.2 - 2.55 mmol/L
Creatitine 14.4 2.3 1.9 0.5 - 1.3 mg/dL
CYA C2 BY CMIA 366.5 994.1 ng/mL Target: 1100
Also, urine output is ideal with no traces of blood or proteinuria. Ninette, my beautiful, generous and ever-loving wife and donor, is doing great with all her test results within ideal levels. What I'm watching for now is on managing NODAT(New Onset of Diabetes after Transplantation). The neph said this will taper down slowly as the doses of steroids are reduced. I should also guard against weight gain and developing a moon-face.

Staying home and going out only once a week and only to see the doctor is not easy. You gotta find ways of killing time. I watch TV and DVD's, read novels and the paper, and dabble in social media. For exercise, a walking regimen, back and forth, using the length of the garage. When the wonlds(cholecystectomy and KT) have completely healed and I do not anymore feel the swelling and numbness in the area, I will setup my cycling trainer and start spinning again; something I haven't done in nearly a year. After another 45 - 50, days, and I shall be cleared to go out of the house and resume more regular activities. But to get back to work, the neph recommended another 4 months. 

I would like to dedicate this next part of this post to everyone,; family, friends and friends of friends, colleagues, medical and hospital staff… everyone of you who supported us in this quest for a new life.

  1. The Jesuit community in Ateneo de Manila University and Xavier School, who offered our petitions during their masses; Fr. Ben Nebres who answered Ninette's 4:00am phone call and prayed with her at the time the doctors had to open me up again to evacuate the bleeding.
  2. The Ateneo and Xavier communities who included, and continue to include, us in the daily mass intentions.
  3. Frs. Ari Dy, and Johnny Go of the Society of Jesus.  
  4. Ninette's colleagues and friends in from the Ateneo Math Department; Ninette's close friends: The 'Searchers'. 
  5. Ninette's graduate students past and current; Fr. Eko Budi Santoso, SJ, who visited and prayed for and blessed me in the ICU and after.
  6. My Xavier School colleagues, especially the NExT Team for bearing some of the weight due to my absence and for the prayers.
  7. To my sister-in-law Pica, her daughter Lysyl, and Louren who travelled from Bacolod to be with us during the time when both Ninette and I were confined.
  8. To my sister-in-law Elgee, and Ben who helped us to do most of the hospital legwork and transactions during our confinement.
  9. My Kuya Noel, the De Las Peñas' in California who helped in prayers as well as the finances.
  10. The Nono's, my cousins for the moral support.
  11. The Peña's who spared some time out of their busy schedules to visit.
  12. Our UP friends Joey, Marian, and Agnes and all the others who have extended their support.
  13. Benny Lim and Xavier School Batch 2003... you surprise me. Thank you very much.
  14. The Coyiuto's and Revita's for their generosity. 
  15. Facebook and Twitter friends from all over the world who flooded my timeline with prayer pledges and encouraging words; we were overwhelmed with all your responses.
  16. To Claudette, my caregiver, who took care of me from the time I was released from the ICU until being discharged. 
  17. Our attending physicians who took, and continue to take very good care of us: Dr. Alberto Frederick Celestial IV, Nephrologist;  Dr. Sergio Simangan, Transplant and Vascular Surgeon;  Dr. Nelson Patron, Urology Surgeon; Drs. Dodee Niño Rigor and Rody Sy, Cardioligists; their fellows who respond to our immediate needs when the attendings are not available. 
  18. The ICU and 3C nursing staff who displayed competence and professionalism as well as their genuine concern, warm smiles and soothing presence. 
  19. To Robynne for the love.
  20. To Ninette with whom I will be forever grateful.       
This list is by no means complete. I might have missed someone. Please remind me. We'd like to express our appreciation to all of you.
Thank you for all your prayers… singly and collectively, the most powerful reason I was able to pull through. Maraming Salamat po.  

Photo credits:

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