(I’m just going to apologize now for the length of this post. I’ve yet to find a way to give health updates without writing a short book)
I’ve put off writing this post, because I’ve struggled a little with my feelings about everything. I’ve had so many requests over the last several weeks for an update on Mike that I realized I probably just needed to go ahead and write something. We’ve been in limbo for the past few months as we waited on more test results to see if we had a donor. If there’s one thing we’ve learned about this process, it’s that nothing (and I mean nothing) happens quickly. You must wait for everything. So even though the process started just after the first of the year, we were only told last week that the hospital doesn’t believe that our 2nd donor option is a good one. It’s difficult to sort out your feelings when you want so badly for the surgery to happen, but you also know in your heart that the “no” from the hospital is only there to protect Mike and any potential donor.
When I was told by Mike’s nephrologist that we needed to start the paperwork process for a transplant, I immediately began researching the different hospitals in Florida that offer the surgery. There are only a few to choose from, and even fewer within a reasonable distance from our house. I looked up the statistics on success rates with kidney transplants from Florida hospitals and found that the number one spot belonged to The Mayo Clinic in Jacksonville, and the number two spot belonged to Florida Hospital in Orlando. We briefly considered Mayo, but realized that we’d be making 30+ visits to the hospital throughout the entire process, so it didn’t make much sense to choose one that is nearly 3 hours away from us. Thankfully Florida Hospital is just under one hour, and still has very high ratings. One thing that comes with high rates of success is really high standards. That has meant that they’ve turned down our first two donors because of some concerns over whether or not it would be good for them to have only one kidney. Considering both of the potential donors are people who are very important to us, we appreciate the hospital’s high standards and desire to not take any chances on putting them through a surgery that might not be the best thing for them in the long run based on the extremely extensive tests they ran. Still, it’s impossible to not feel disappointment. We really believed that we would be in the post-surgery, recovery phase by now, and it just hasn’t worked out the way we thought.
Last week I called someone over in the transplant department and asked her where we go from here. She let me know that she had two more applications from potential donors, and that she would be contacting both of them. I had no idea that any more applications had been turned in. There was one person who asked me about an application months ago, but I didn’t know that he decided to fill it out and turn it in. As far as the second application, I actually have no idea who sent it in. The hospital will not tell us anything about potential donors, since it qualifies as their personal health information. The only way that we find out if/when any tests are being performed and what the results are is if the donor contacts us himself to tell us. So I am assuming that two people will be going in for blood work soon to see if either of them are a match to Mike. If they are, the hospital will ask them if they want to start the testing process. If for any reason it doesn’t work out with either of those applicants, then we will look into a donor swap option where we try to find a family member or friend who isn’t a match to Mike, but is a suitable donor for someone. They would enter Mike and the donor’s info into a database where they would try to find someone on the swap list who our donor could give a kidney to, and then that person’s donor could give a kidney to Mike. All the while, Mike is sitting on a waiting list to receive a kidney from a deceased donor if one should come up.
So we wait. And we wait some more. It’s been suggested to me (gently by some, and a little more bluntly by others) that maybe it’s time for me to stop pushing so hard for this and just sit back and see what happens. Totally not in my nature. I am a planner, a doer, a butt-kicker. I make lists and I cross things off of them when they are complete. Sitting back idly while something major needs to happen for my husband is not my style. I guess it’s time to temporarily embrace a new style. All of my fighting and worrying and pushing aren’t doing much to make this transplant happen, so I’m going to do my best to just relax and hope for the best. And while we’re waiting, we’ve decided that it’s time to move on with life and stop allowing ourselves to feel like everything is in limbo. It kind of is, but we’re realizing that we can’t even attempt to plan things out when the call saying that surgery can happen could come tonight or 3 years from now. It’s time to come to terms with the fact that our plan has been tossed out the window, and everything is so completely out of our control that there’s no point in even making another one. So there it is. The big update. If you think of us, just pray that the right kidney comes at the right time, and that we’ll have the strength to trust and wait on God’s plan, whatever that may be.
A little peek at our first beach trip of the season.