So for the last twenty years my life has been pretty good. My family was great. Two great kids and a supportive wife. Two parents who would bend over backward for me. For the last two years I left normal employment to start my own tech company. I had started a tech company in 2011 and raised a good deal of venture capital. That company was taken over and I moved on. I started another company but was unable to raise any capital so eventually had to look for real work again. It was winter of 2014 and I started feeling tired quite a bit. I was pretty depressed from my startup failing so I chalked up the feelings to just being depressed and having to look for a job. Things seemed to get worse. Over a couple months I noticed pain and numbness on the left side of my body, primarily in my arm. I found myself getting up in the middle of the night and not being able to sleep. I would get up and just watch TV for a little while then go back to sleep and sleep until noon.
I was walking through the mall one day and I just could not catch my breath and I was dizzy. I had to keep sitting down on a bench every twenty feet or so to rest. I really felt like I was not going to make it to my car. Still, I pretended nothing was wrong. This may sound bad but I think I was so depressed about things that I had almost given up. Part of me felt like it was over and I was going to die. I think the bad thing was I am not sure I cared. I spent my life sick for so long I just felt like I didn’t want to fight things anymore. This is really sad because I have a family, and I should not want to feel like that, but that was the reality. I tried to ignore the feelings for another couple weeks. I was sure my heart was failing or I had cancer. I never really once thought it could be kidney related.
I finally told my wife that I really think I should go to the hospital. So on February 15, 2015, we headed to the hospital where they did blood work, EKG, etc. I was shocked when they came into the room and told me my creatinine was 14 and my hemoglobin was like 7 or 8. I was experiencing kidney failure again. After twenty years of good health. The hospital I was at did not have dialysis capabilities so I was transported to another hospital close by where they quickly inserted a line into my chest and started dialysis and a few blood transfusions.
It was super emotional to have to call my parents and tell them the situation I was in, but like always, they jumped on a plane from Florida to be with me and my family. The second issue was telling my kids. My wife as always was a rock. I don’t think I could ever get through all of this stuff if she was not around to help me. I am a huge pain in the ass, so her still being with me is hard to believe. My kids took the news better than I would have expected. The one thing I know about my kids is besides being super compassionate, they are wicked smart, so for them, me being on dialysis was science. They wanted to understand how everything worked. I am sure they were worried about me, but my kids are strong and they handled it so well. I felt bad for them, because I did not want them to have to deal with my issues.
I went home after about a week and started the entire world of dialysis all over again. It was shocking that it was over for me. Back to dialysis. I felt like a huge failure. I was probably more depressed now than I was before. I approached dialysis like I did anything. No big deal. I would deal with it. Hemodialysis did not change much in the twenty years since I did it last. That was the most shocking thing. I would have hoped it got better. The only difference for me was I was on the machine for 4 hours instead of 3. They also would not let me setup my own machine like I did when I was a kid. I can say that being on a dialysis machine for 4 hours three times a week, seemed so much longer than when I was a kid. When I was a kid, I normally slept through most days. I knew that I would not be able to continue on hemodialysis for very much longer. My experience with Peritoneal dialysis told me the only way I would get some normalcy in my life was to do Peritoneal dialysis again. The hemo center I was at did not do Peritoneal dialysis so I had to transfer to Davita. Within a few months I had the surgery and was ready to go with Peritoneal dialysis.
During this time I had actually gotten a job and was due to start on October 1st. Luckily I was ready to go with Peritoneal dialysis and I figured just like college I would go to work just like anyone else, do the 8-5 thing and just wait for another transplant.
Just like hemodialysis, Peritoneal did not change in twenty years. The only major difference was that the bags they sent you had the tubing already connected and in the old days, you had separate tubing for the glucose solution. Unlike twenty years ago, instead of doing 1000CC bags, I was forced to do 2500cc bags, which seems like a huge difference four times a day.
During this time I visited University of Wisconsin Hospitals to get on the transplant list. It was very similar to the other two times. I guess the only shocking thing was that the transplant surgeon I met with was so young he was not even in school when I got my last transplant. Also unlike the first time, I am required to send blood typing and matching every month to the hospital. I never did that the first or second time.
I have been on the transplant list now since February 19, 2015. Not sure how long my wait is going to be, but I sure do not feel as good as I did twenty years ago doing this!