Splenomegaly

What? That was our response but we will get back to that.

back to the story: May/June 2011

So we arrived a little earlier than scheduled on Thursday, we weren’t supposed to have any actual tests on Thursday, just an appointment with the Psychologist and with the Surgeon.   Because of my iron levels were low we needed to have blood drawn again to test those levels.  Everything went smoothly and I was off to the Psychologist after a short meeting with my coordinator just to go over a couple of things.

If you have ever been to UNC Chapel Hill medical center you realize it is about 5 hospitals together (give or take), so they sent me on a long goose chase down some back halls to make my way to the Psychologist.  I finally made it to the correct place, even though I wasn’t quite sure where I gave the lady my name and asked for the Psychologist they had directed me too. 

It turns out that the normal Transplant Psychologist was on vacation and not available today so they had scheduled me with a different psychologist.  Well to make a long story short, I waited for what seemed like forever (45 minutes, and to be fair every other appt. went off right on schedule).  Then the Psychologist finally came out after I had asked the receptionist at least 3 times if everything was ok and I was in the correct spot.  She was very nice and let me know that there was a problem with scheduling and she wasn’t going to be able to meet with me.   It turns out that by North Carolina law seeing the Social worker was enough and she signed off on me so I wasn’t going to have to see a Psychologist at all, some people might say it was good I got to avoid that because I was never going to pass a Psychological exam.

So that left only one more meeting on the schedule, so after lunch, cheese steaks at a place off of 501 they weren’t bad, but not John’s Roast Pork (that will be a whole blog one day).  We headed back to the hospital to meet with the surgeon.

Kate were sitting in a room when a resident came in (let’s call her Christina Yang for you Grey’s Anatomy fans) and started feeling around on my stomach.  She asked if my stomach hurt and informed us that the CT showed that I had a Splenomegaly (enlarged spleen).  She didn’t have a great bedside manner, plus I had no idea what that word meant at the time, and all I remember her saying was you’ve probably had a lot of people poking at your stomach.  My response was no you are the first one to say anything about my spleen being enlarged, the other thing I remember her saying was that they probably wouldn’t want to use me as the donor (not what Kate and I were wanting to hear after traveling from Florida and going through all of these tests).

Next the surgeon came in, he was a very tall guy with a thick accent, which at this point I have no idea where it could be from.  He was much better to talk too than Yang but he basically gave us the same message. The majority of my tests were perfect but we had the problem of the low iron and the Splenomegaly that we would have to clear up before I could be approved as a donor,  a little bit better new that they weren’t eliminating me as a donor.

As I am writing this and I’m sure as you are reading this about now is when you start thinking, wait I know I want to donate but maybe the most important thing here is am I actually healthy what is wrong with me.  So next we went back to meet with the nephrologist, the second set of blood tests for my iron levels also showed low iron levels and low ferritin so we were going to have to determine the cause of that.  We had a lot of conversations and we determined the most likely cause was that I have been a 5 gallon blood donor over my life, plus Kate and I had been eating a diet known as the Daniel Fast, which pretty much eliminates all foods except fruit, vegetables, and whole grains, so I wasn’t getting any iron.

He recommended that we see a Hematologist for the iron issues and the enlarged spleen.  He thought it wasn’t probably that big a deal, however it could be cancer or some other sort of blood disease (leukemia, lymphoma, Hodgkin’s, or cancer), not really what we were looking forward to hearing as we are heading back to Florida from trying to donate a kidney. All of our sudden our focus has gone from helping Ashley to what in the world is wrong with me, and did I mention that I was going to have to get a colonoscopy and endoscopy to make sure there were no internal bleeds (just what a 36 year old guy wants to hear). 

Before we left we talked to our coordinator and she told us that at this point a lot of people would give up on the donation, it was too many tests to have to go through, and she asked us if we wanted to still try to donate.   Of course we said yes, just because Satan had thrown up a couple road blocks we weren’t going to quit, God had started us on this Journey and we were going to follow it until the end.

Did I mention that we still had to meet with Ashley that night to let her know what we just found out?  She handled it very well even though you could see the frustration in her eyes, we did our best to encourage her that we were going to follow through with the testing and not quit.  We had some very good conversations that night; she talked about the guilt she had felt that someone had to die for her to get her lungs and how much she has struggled with the idea of taking my kidney.  We talked about Kate going through the process if I didn’t and her comment was that she really wanted a curly kidney instead of a bossy one, which still makes me laugh as I write it.  It was night of tears and laughter (which there will always be a lot of if Ashley is around, laughter I mean) and another night I won’t forget.

Afterwards we went to dinner at Mami Nora’s a Peruvian place with very good lomo saltado, (beef with stir fry peppers and French fries) and to a Durham Bulls baseball game.  Crash Davis and Nick Luleoch weren’t playing but it was a good game and we had a great time.  Ashley went home and Kate and I went to bed ready to start a whole new part of this story, to find out if I was healthy enough to donate.