History

Since I'm starting a blog about dialysis, kidney disease, and other such things, it would only make sense to give some detail as to my history with kidney disease, how I first started dialysis, and what's going on now.

I was born with a posterior urethral valve which led to a bunch of other problems, crazy medical words no one besides the doctors can really understand. (Note: if you really want to know the specifics, send me a private message and I'll let you know) When I was 18 months old, my right kidney was removed. I was in and out of the hospital for a few years when I was little. When I got a little older, everything calmed down a bit, and I was able to be a normal kid. I had a reaction to a decongestant when I was 19 but it worked out with just some physical therapy and some tests. I moved across country with my family the next year, everything was fine, I appeared to be in perfect health for the next 5 years, no symptoms or anything.

On the night of August 31, 2010, I was at a restaurant with my family, and I wasn't feeling well, but I didn't think much of it. I got up to go to my car to go home and I promptly fell over. I didn't pass out but it sure wasn't fun. EMT's came with an ambulance and fire truck and took me to the hospital. I had a central line catheter put in in the morning for immediate dialysis. I had a fistula put in my right arm later that week for later use, but it had to mature before it could be used.

The immediate problem was that my hemoglobin was 5.4 and I was very anemic. My only kidney wasn't really working properly any longer. A bazillion different tests were run throughout the next two weeks, trying to find out what all was going on.

I had a severe reaction to the first 3 dialysis treatments. It was called disequilibrium syndrome, and it just might have been the worst thing I can remember ever going through. Dialysis is taking your blood out of your body and taking the toxins out, but some of these toxins had been in my body for years. Having this buildup (High BUN, among other CKD terms I'll let you know if you really want to), when dialysis started to remove it, it created an imbalance in my body and in my brain. This basically acted like a vacuum, with my brain being like "Whoa, what do I do now that all of that is gone?" and trying to immediately adjust to the lack of it. What I felt though was terrible. I couldn't focus or think straight at all. I tried to grab the rail of the bed with one hand and missed, then I tried to grab that hand with my other and missed! Whenever I tried focusing on something, I would finally be able to grasp the thought, and then my mind would totally switch gears to something else, leaving me to spend a long while trying to catch up again. Of course, the best solution to deal with this problem would be sleep right? Yes, but I couldn't sleep. I would lie there for what seemed like forever with my eyes closed, then just pop them open, wide awake as I was the fist minute. I was told this situation would only happen once, MAYBE twice, but not likely at all. I had it happen the first 3 times, with a slight effect the 4 time, and dizzyness with the 5th and 6th treatments. The dialysis nurses told me they had never heard of such prolonged effects of this. Thank God, it finally went away. I did not handle that happening very well at all, having a panic attack once or twice, among other things.

I got used to the dialysis treatments, and gradually leveled out. I was released from the hospital October 1st, after a full month in the hospital. It would be a long time before I began to regain my energy and stamina back. (Still working on this actually, but it's going much better now) I started dialysis at a local Davita clinic the Monday after I was released. I see the nephrologist (kidney doctor) at the clinic about once a week, although all he really does is look at my charts. Funny story about him at a later date. I've been on dialysis at the clinic for 3 hours every Monday, Wednesday, Friday since then. I'll go over my feelings about the clinic and the people there in another post.

At the end of October, they were able to begin using the fistula in my right arm. (I'll set up another post describing this and some other basic things soon) The fistula works much better than the central catheter.

December 2nd, I went to UC Davis Medical Center in downtown Sacramento for a kidney transplant evaluation. We arrived around 10AM, filled out some forms, then sat in a room with a few other people for a short class describing the basics of a transplant. Basically going over a packet we received in the mail about it earlier. After the class, a doctor checked me over, and asked a long series of relevant questions. He seemed to hit every logical topic very concisely, while still being nice. Following the doctor, I had a meeting with a social worker, going over all kinds of aspects of my life, and basically evaluating my mental state, opposed to the physical. After lunch, I had a chest x-ray, an EKG, and bloodwork done. By that time, it was approaching evening, but we were finished. A long day, but hopefully it will lead to good news. We were told we should find out my eligibility within 10 to 12 days.

Today is January 7, 2011, and I still haven't heard. I called the transplant coordinator a few days ago and he told me they still needed my medical records from the hospital. The person at the records office said there was no request for my records. I picked them up from the hospital and personally hand delivered them. I know the right people have them now, and while I was there giving it to them, I was able to talk to the coordinator in person. He said that everything I did during the evaluation day camp back good, and that he'll go over the records, and should be able to have the meeting to determine eligibility next Thursday. Hopefully we'll find out something shortly afterward.