Our Life

The Ups and Downs

So it has been about 2.5 maybe 3 years since I’ve started dialysis. When I first started peritoneal dialysis, efforts to find me a live donor were very high. We even had potential donors. But when those did not go through, my efforts and other peoples efforts felt tapered off. Less posts, less people taking the live donor questionnaire and getting tested.

Until about a year ago, when I found out Louise could potentially be my donor, we had everything planned out with UC Davis, even down to the date of the transplant surgery. But, I got a letter from The UC Davis transplant team stating my a1c (average blood glucose levels) were too high for me to be operated on. I was very disappointed because it was mainly my fault. I told them I can get it under control and I did. When I got it to the level they needed, I called the nurse and the administrative assistant assigned to me but wasn’t able to get them live on the phone. They went dark on me. I called , left messages, wrote emails and nothing. It was like they did not exist. I told my doctor at Kaiser who also had trouble getting a hold of people at UC Davis and had a few other patients experiencing the same issue. She then advised me to transfer my transplant to UCSF because of the lack of contact from UC Davis. So, here I was spending the next year transferring all my paperwork to UCSF and going through the process over again. I had to redo a few test as did Louise. And now, here we are.

I don’t want to say I am used to dialysis, but it has become a routine. Set up bags, set up machines, then in the morning dispose of bags, examine the solution for fibrin. Fribrin is “an insoluble protein formed from fibrinogen during the clotting of blood. It forms a fibrous mesh that impedes the flow of blood.” When this occurs in the drained solution, the following night I need to inject Heparin which is used as an anticoagulant.

Every now and then theres a change. Over the last 3 years my solutions has changed. I went from being on the machine for 8 hours to now 10 hours. I went from 18000ml to 25000ml of solution a day. When I started dialysis, I was taking 3 pills. I think I am now up to 8 pills a day. Honestly, its all a pain in the ass, but I need all of these to stay alive. And when I get the transplant, there will be A LOT more medication for me to take for life.

Like I said dialysis is a routine to me now. But even that routine can fail me. Sometimes, I’ll get error messages on my machine and it will beep, then I can correct it. Sometimes, I might not hear the beep or the beep won’t go off. The machine will be stagnant and I don’t finish my treatment on time. This, in turn, has caused me to be late for work.

I like to remind people that my time is precious, everyone’s is to be honest. But mine in particular needs to be thought out thoroughly so I can make sure I get my treatment done. If I make plans, I make sure to time my treatments so I can free up that time. It can be frustrating when people truly don’t understand how much is dedicated to my treatments. This is life or death for me, I can’t miss a day of treatment or my health declines even more.

I only hope that people become more considerate, understanding, and empathetic of what I go through. And, not take it as it’s too complicated for me to do anything. I want to be normal, I want to be able to do things at the drop of a dime, I WANT TO LIVE LIFE TO THE FULLEST, but these are challenges I need to work through to do that.