The waiting game

I was hoping that by now I would have some exciting news to share with everyone, but I'm still waiting. I got a call last Tuesday from Rhonda, who has been filling in as the living donor coordinator. She called me that morning to tell me I was being presented to the transplant board that day, and that I should be getting a call no later than Wednesday with their decision. She also told me they needed me to have one more blood type test, just to confirm my blood type. They already did one, but I guess it's mandatory to do two and they had forgotten about the second one. She said it wouldn't affect getting approved. I went ahead and scheduled that for Friday. She also told me that Lisa (the actual living donor coordinator) was back in the office now, so I would be working with her and she would be the one to call me with the decision. Lisa has been out on medical leave throughout my entire process, so I had never met or talked with her. At this point, I'm 99.99999% sure I'm going to be approved considering all my test results came back excellent, but there is always that small chance I wouldn't be. I was really looking forward to getting the call so I would know for sure and be able to move on to the next step. 

So Wednesday came, and I sat at work all day anxiously waiting for the call from Mayo. By 3pm I had not heard from them, so I decided to call Lisa. She did not have the news I was hoping for that day. She said the meeting minutes from the transplant board had not yet been certified, so she couldn't share anything. She brought up having to get another blood typing test done, which I already knew about, but she also said I might have to do another 24 hour urine collection. Since she has been out on leave throughout my entire process, she has been going through all of my information to make sure everything has been completed, and she noticed that during my last collection, I had an elevated amount of protein in my urine. I was already aware of this, but I was told by the doctor that it wasn't anything to be concerned about it and that another collection wasn't necessary. Apparently not everyone agreed. I was not a happy camper when I heard this. In fact I was pretty ticked off. It was frustrating to me that this wasn't caught earlier. Lisa called me the next day and confirmed that I will need to do another 24 hr collection and I get it set up when I go in for my blood test. I don't know any woman who likes to pee in a cup, let alone do it for 24 hours! I really had to take a step back and remind myself that this is being done for my own well being. They have to do everything possible to make sure I'm healthy enough to donate. Annoying, yes, but in the grand scheme of things it's really not that big of a deal. 

Friday I went and had my blood test. I had the same guy who did it when I almost passed out, and of course he remembered me. Only 2 tubes this time, so I was good. And no fasting! I picked up my big red jug, and I was all set! Since I have never met Lisa, she asked me to stop by her office. We went over what my options are for donation, and I made a decision to start a donor chain in the paired exchange program. I thought long and hard about the decision, and decided that was what I wanted to do because it will help multiple people. They will first enter me in the Mayo 3 Site Paired Exchange Program. This program only includes pairs who are on the list at one of the three Mayo Clinics throughout the country. If they are unable to match me with anyone on that list within 90 days, they will move me to the national paired exchange list, which includes transplant centers other than just Mayo. Once I'm matched and our chain is built, they will coordinate all of the surgeries, flights for the kidneys, etc. Lisa said it could take anywhere from 6 weeks to 3 months to get all of that done. That means the earliest I could probably have my surgery would be beginning to mid December, depending on how fast I'm matched to build a chain. As of now, this is my plan, but I'm open to switching directions if another opportunity presents itself. I can't wait to see how it all unfolds!

The results of my 24 hour urine collection were posted Monday evening. My protein level went down. The first time it was 180 mg/24 hrs and this time it was 143. The little side note with it said desired levels are 27-93, so I was still worried mine would be an issue. I talked to Lisa yesterday, and she told me the generally look for it to be under 150, so I just made it! I'm not sure why my levels are higher than normal, but they don't believe it's related to my kidney function. There are all kinds of things than can cause elevated levels. Infections, stress, dehydration, medicines, exercise, etc. It's also a sign of potential kidney problems, so that's why they wanted me to do the collection again. Luckily everything seems to look good! 

Now that I have updated results, I will need to be presented to the transplant board again. My case is scheduled for next week, so unless anything else comes up (which I don't foresee happening) I should get my final answer by middle of next week!

One other exciting thing I want to mention is that Raleigh Callaway recieved his transplant on September 25th! Raleigh is the gentleman from GA who I originally reached out to be tested for. A man named Chris from TX heard about Raleigh, and felt compelled to be tested. He turned out to be a match! From what I have been told, both men are doing fabulous! How amazing that just 10 weeks after posting Raleigh's story online, he was able to find a donor and recurve his transplant, not to mention the thousands and thousands of people who have been touched and inspired by his story. I feel so blessed to be a part of it. :)