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...

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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