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...

Sunday, June 30, 2013


The past 2 weeks went by fast. Ninette and I continued on with work up tests, seeking doctors' clearances, filling up forms and writing affidavits. One of the last doctors we visited was a psychiatrist. Interviewing us individually as recipient and donor; he asked direct, easy to answer questions to make sure we were sane enough to take on the decision to have a transplant. He will write up a psychiatric evaluation to be submitted to the hospital ethics committee. 

The NKTI Ethics Committee meets every 1st and 3rd Friday of the month. It decides which transplant cases to approve. Tomorrow, July 1st is our deadline to submit documents to this committee. It will meet this coming Friday. Basically, the required documents are the ones that show:
  1. identity
  2. relationship
  3. consent
  4. responsibiliity 
  5. blood type, tissue and crossmatch
  6. all work-up test results
  7. doctors' clearances
  8. medical report of both the donor and recipient from the lead nephrologist

Our papers are almost complete. We're still awaiting a couple of clearances and the medical report. Upon getting them, we'll have to get them signed and notarized before submission. I'm praying we make the deadline tomorrow.

Monday, June 17, 2013

It's a bloody entry

It's about blood but I promise not to gross you out.

My love-hate relationship with my Permcath continues. I spent an hour in the Operating Room last week to have my Permcath repositioned and it hurt like hell. Thy had to remove the old suture, pull the device out of an already healed wound, moved the lumen around, then sewed it back in place. Even with local anaesthesia, I still resounded with a lot of aw's and ouch's. But the succeeding hemo sessions were great; minimal machine alarm and perfect flow rate.

But I'm now seated in the Wound Care section of the NKTI to have the dressing changed again. This is my second visit to Wound Care after the repositioning. I'm having some site bleeding issues mostly movement related. I noticed that there is a new spot of blood whenever I wake up the morning. It's probably when I turn to the side in bed when the wound leaks a bit. I do not want to have a soiled dressing for fear of infection. So even if my next hemo session is 2 days away, I'm here at Wound Care.

From here, I'm going to see my neph to show him my latest blood work results and find out from him, what out next step will be. The next and succeeding paragraphs will be composed after I consult with my neph.

I finally got the results of the Panel Reactive Antibody(PRA) Specific Class I test ordered by Dr. Celestial after a positive reading was obtained when a PRA test was done 3 weeks ago. The specific test should show the percentage of Class I antibodies present in my blood. The doctor told me that the lower the percentage, the bigger the chance of a transplant. A high percentage will limit the number of possible donors and will lower the chance of a transplant. The lab told me that results will be available after a week, but it took them almost 2 to come up with the report: 

PRA Specific Class I:   0%

So that's why it took some time. I'm guessing they had to check and re-check the results since just 3 weeks ago, they submitted a positive result in that specific class. 

Now that, ladies and gentlemen, is a huge hurdle we just went over. And we're more positive about the whole transplant situation. Just a few more tests for Ninette(my beautiful wife and donor), plus a few papers/documents to accomplish, then we'll be ready to submit to the NKTI Pre-Transplant Ethics Committee. And if all goes well, we shall proceed. 

I was told that the NKTI can perform just a limited number of transplants a month; and July and August are already booked. So September is the closest? We'd rather have it done ASAP. That will be the next major chapter of this journey.

One of the things a kidney patient has to contend with is the regular needle-sticking to get blood serum samples not only for the required pre -transplant tests but also to monitor progress an all the areas of your treatment. Dialysis, diet, exercise and patient compliance usually dictate the results of blood work. I had another done recently and it showed very encouraging results in some areas and same bad results in areas where the disease rules over no matter what you do and only a transplant can improve. For those interested, here are some numbers:

02 Feb
24 Mar
12 Apr
18 May
22 May

Very Good; almost ideal


Still high but better


Still high but better

Still very high
Uric Acid


Most improved; ideal

Still very high

The photo is a pin I received as a Fathers' Day gift from my wife and donor Ninette. Just some more tests and hurdles to stride over and the pin turns into a gift of life. 
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Thursday, June 6, 2013

Love - Hate Relationship

I have this Love-Hate relationship with my Permcath Hemodialysis access:
  1. I love it because it is hidden underneath my shirt. People do not notice it unlike when i still had an IJ catheter at the base of my neck exposed for all the world to see. (There's a previous post here somewhere showing how it looks like.) 
  2. I hate it because I cannot go topless even in a beach setting. I joined the company summer outing to a beautiful beach last week and I felt silly walking around with a shirt on.
  3. I love it because it doesn't hamper movement too much; I can still walk and climb stairs, and swing my arms. Although I wish I could do more, like lift weights and do more intense exercise.
  4. I hate it because the site becomes itchy especially around the adhesive that secures it in place. I don't mind the Tegaderm; it is quite comfortable. Try sticking a micropore tape on your upper chest and let it stay there for at least 3 days and you'll get the idea.
  5. I hate it because it is difficult to get a decent bath/shower. Hell, I haven't had one since Feb. I cannot get the site wet since that will invite infection.
  6. I hate it because I cannot go swimming. And swimming is like my overall favorite physical activity.
  7. I hate it because I cannot perspire so as not to get the dressing wet. So I have to keep myself in check when exercising.
  8. I hate it because most of the time, it acts up during HD sessions, that the machine's alarm goes off like crazy, that I seldom reach the desired flow rate the neph has ordered. And because of this, I'm scared that I am not getting enough dialysis.
  9. I hate it because I have to go on another O.R. procedure tomorrow to get it repositioned. And this means another expense I'm not sure insurance will cover. That means another day off work.
  10. I love it because it is my lifeline. So I have to take care of it. I've invested quite a lot to put this in, so I hope they will be able to correct it tomorrow and future HD sessions will be issue-free. 
I had another blood extraction yesterday to see how high my antibody count is. Hopefully it's not alarming. Perhaps this developed when I had the 4 units of blood transfused when I was confined last February. In hindsight, I think they should have done some processing of the blood first before the transfusion.

The HD staff again adjusted my dry weight a kilo lighter. I've been registering a low, even negative  weight gain pre dialysis. And because I'm not showing any signs of edema and loss of appetite, I guess the weight loss is good.

I'm happy for a 'classmate' of mine. She has passed all work-up procedures for her transplant. It's easier for her since her donor is her sister. They already have a scheduled date for the transplant. Good luck.

The PRA Specific Class I test results will come out after a week. Help me pray for a low PRA percentage. 
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