Yesterday was my first day of transplant evaluations. It was a long day, with plenty of ups and downs. I was really looking forward to getting started with the evaluation process, but by the time we wrapped up yesterday afternoon, I wasn't so sure.
The day started out fine. I had a 7:30am appointment to get my blood drawn, get an EKG, and get a chest x-ray. These three things weren't any big deal. I'm in good shape, so I wasn't worried about the outcomes for any of the three tests. I got a kick out of how much blood was drawn. When the girl started on the 10th vial, I was sure there wasn't going to be anymore blood left in me. Turns out there were a couple three more vials left in me. I don't ever remember having that much blood drawn at one time.
Once all three of these tests were finished, Jeannie and I headed to the cafeteria. I had to fast before this blood draw, so I hadn't eaten anything since 9pm the night before. The cafeteria had great food, and I was thinking that this was a good thing. Eventually, Jeannie's going to be eating several meals from here, so I was hoping the food was good.
After we ate, we headed down to our next set of appointments, both related to finance. Our first appointment was with the Pharmacy Financial Counselor to go over the medicines that I would be taking post-transplant and the financial impact that would have. Fortunately, thanks to a good insurance plan, the financial impact will be practically non-existent. This was the perfect lead-in for our next appointment, with another financial counselor, this time to talk about the costs for the transplant and the testing I was going through.
Again, thanks to a good insurance plan, the transplant was not going to be a financial hardship for us. The same is true for any donor that wants to get tested, and if eligible, give me their kidney. All of that is covered too. We were both on cloud nine after hearing both assessments of our insurance situation. I've mentioned this in previous posts, but we are truly blessed with how well the insurance is working out for me.
The two financial discussions were quick. So quick, we ended up with almost 90 minutes to kill before our next appointment. Thinking we would be going without much downtime, I didn't bring anything to read, so I went and tracked down a newspaper from the gift shop.
We were scheduled to join three other families in a conference room to watch a 45-minute video on the transplant process. It was an interesting video, but as it turned out, we watched it over the weekend. I came across the links to the video on the UNMC website a week or so ago, so Jeannie and I watched them over the weekend. It didn't hurt to see them a second time, so we each made some notes with questions to ask the transplant team when we met up with them in the afternoon.
Here's the link to the page with the video: http://www.nebraskamed.com/transplant/kidney/info/process/transplant_evaluation.asp
After lunch we met up with the transplant coordinator. She is an absolute bundle of positive energy. She's doing the perfect job for her personality, and I said again that I couldn't believe how great this was all going. We saw the Nurse Practitioner next, and she asked some more medical history questions, and we had a long chat about my CLL. She was great with us, but she expressed concern about the effects of a transplant on my CLL. Her questions were fair, I answered them the best that I could, and when she was finished, she said she was sure I would have no problem getting a kidney.
The transplant coordinator came back in; Holly is her name, by the way, and we talked some more about how we would get notified when a kidney was available, how the transplant list worked, and when I would be placed on the list. Then, we got our first less than positive visit. We met Dr. Morris.
Dr. Morris came in to see us after finishing a transplant. It was my first meeting with him, so I don't know much about him, but he was pretty blunt with us, which left me a little bit shaken. He wanted me to be able to make an informed consent when it came time to agree with the transplant. So, he hit us with all the negatives related to my transplant candidacy.
The anti-rejection drugs will weaken my immune system, which could lead to a re-occurrence of the CLL. He threw out a scenario where I may not live three years with my transplanted kidney. If that happened, it would not have been a good decision to give up dialysis for something that would kill me. The concern is that a transplanted patient has a higher risk of developing tumors and infections following the transplant. Bad as dialysis is on our lifestyle, it won't kill me.
"CLL is CLL," he said to me, when I tried to explain that the degree or severity of my CLL was such that we thought I would be a good candidate. This comment got under my skin. He lost me after that, which fortunately was near the end of our chat. When he left, Holly came back into the room, and we talked about what had just happened. Looking back on it today, I can't help but think that she was playing good cop to the bad cop played by Dr. Morris.
In the middle of our conversation, Dr. Miles came in to visit. He would be the last person for us to talk with on this first day. I went right to it, recapping what Dr. Morris had said, and how I thought it was hard to imagine him saying "CLL is CLL." I asked Dr. Miles if he believed that there was no degree to this type of disease.
He agreed that there was, but he maintained that the transplant, especially with a cadaver kidney, could cause problems. I told him that I thought that between him and Dr. Tarantolo there should be enough brain power to come up with a plan for how to deal with any post-transplant issues. He agreed with that too. Things were looking up. I don't have a problem with exploring both sides of an issue, as long as we truly explore both sides.
Dr. Miles asked some more questions and then we were done. The first day of evaluations was in the books. I go back tomorrow for round two. More tests and two face to face meetings. I have to go back on the 22nd for one more meeting that couldn't get scheduled during these two days of evaluations. Once that is done, the transplant team will meet to go over my case again and then a final decision will be made to put me on the transplant list or have me wait.
I need to work on seeing if someone will feel inspired to donate a kidney, but I'm going to wait until I hear for certain that I will be eligible.
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