So, it's snowing, and when it's snowing my satellite doesn't work, so I can't watch TV. This is probably a good thing.
You see, I've been meaning to write for a while, but for some reason I just don't do it. Today I have no excuse...
It's been a rough week, but also a week of spiritual enlightenment and some tremendous surprise blessings.
February 1 I went to Mayo Clinic for a CT scan. This scan would reveal just how well my new stent is doing and would (hopefully) clear me for transplant. I had the scan, and then had an appointment with the vascular surgeon later in the day to hear the verdict.
When I saw the surgeon, he didn't have the results, but wanted to get me the news, so he went to go and find the results himself. When he came back to the room, he was beaming and said he had great news. Everything looked great, and we could proceed with the transplant. Gordon and I were so happy.
I called Michelle, and she called Mayo and told them we needed a date right away. (Somehow, she manages to get answers when I can't...go figure.) Within a day we had a surgery date of Friday, February 18. That was so quick! Last time we had to wait over a month. We were pretty stoked, to say the least.
Soon, everyone knew and they were all thrilled and excited for me. I kept saying that I'd be excited when the kidney is in and is working. I just didn't want to get my hopes up too high, as I'd been let down before and it was more than a little hard.
Thursday, February 10 I went to Mayo again for my pre-surgery visits. Everyone I met with was so excited for me and was so relieved that it would finally be done. My nurse case manager even cried as we talked about the journey we'd been on together. She said she knew I'd be a tough case, but that it would get done.
As I met with the transplant surgeon, he said that he'd need to check my Hepatitis B virus count one more time before surgery. (Luckily, he was able to use the blood draw I'd had done earlier that morning.) For some reason, this felt funny to me and I had a feeling it would mean trouble. No one had checked my count since I'd been cleared for transplant the first time in October 2010. (This was the first hurdle I had to overcome.)
For some reason, somewhere along the way in my life I contracted Hepatitis B. I can't be sure where, as I've been a "good girl" my entire life. The one theory I have is that I got it from a blood transfusion when I had cancer in the late 1970s. Three of my six siblings also have it, so I may have given it to them as well. It's highly contagious and can live in outside the body for weeks.
I saw a liver specialist when I was first worked up for a transplant at Mayo. He said we'd need to get the viral count under control before I would be cleared for transplant. He put me on a medication called Viread, which is an anti-viral medication. I was on it for three months before my viral count was under control. I was under the impression that once I was cleared, I wouldn't need to take the med anymore. Boy, was I wrong.
The blood test done on February 10 came back with a higher viral count than I'd ever had before.
I was on my way to what I thought was my last dialysis treatment when I got a call from my transplant nephrologist. He gave me the bad news and I lost it. (I feel kind of bad for sobbing in his ear, but I couldn't help it.) I was crying so hard that I had to pull over to the side of the road until I could regain composure. Through the next couple of phone calls--first from the liver specialist and then from my nurse case manager--I began to understand how dangerous having a transplant when the viral count was so high would be.
Because I will be on immuno-suppression drugs after transplant, the HepB virus would have had a field day. It would have taken over and could have potentially sent me into liver failure. Not pleasant to think about. The liver specialist apologized profusely, and said that somewhere we must have gotten our wires crossed. Evidently, I'll be on this medication for the rest of my life, but this was not something I understood at the time.
I'll have a blood draw in three weeks, and then again in six weeks if the count isn't good the first time. We have a tentative surgery date of April 13 if I have to wait the whole six weeks. (I'm--of course--hoping for three!)
This week I've had some pretty incredible spiritual experiences. Some were totally random...like chatting with the medical assistant at my neurologist appointment. She didn't know me, but looking at my chart, she said she believed I was chosen to have these trials because of who I was before I came here. Pretty remarkable. I had lunch with my good friend Gina, who has also had a tough year. We were able to "compare notes" and realize that we were in the same place emotionally. I've received cards, flowers and even some cute pajamas from people that love me. Some relatives I haven't had contact with in several years sent us a card with $500.00 in it. How did they know we were struggling to pay rent this month?
There have been times the past 15 months that I've wondered if my Heavenly Father knows I'm here and that I'm struggling. There have been many, many times when I've asked Him why I have to go through this. Haven't I been through enough? When will it be enough? I spoke with my dad this week, and we just both got angry at the prospect of this never ending.
I know that the one thing that has sustained me through this trial is my faith. I am so grateful for the knowledge I have that this WILL end. I am grateful to know that when this life is over, I will have a perfect body. I don't even know what if feels like to feel "normal." How wonderful will that be!
I am grateful for my family. I am grateful for a sister who is so willing to give up part of her so that I can be healthy again. I am grateful for a husband who has been with me, holding my hand every step of the way. I am grateful for my kids who understand when I don't feel well. I am grateful for my parents who love me and made the decision to save my life when I was too young to make it for myself. We all had no idea at the time what life would hold for me, but I'm grateful that they gave me the chance to find out.
