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...

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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