The Wait Continues

Even though things are progressing as they should, the process for finding out when I will get a kidney transplant feels agonizingly slow.

Last week, Kevin and I went to Johns Hopkins Hospital to attend the long awaited initial transplant evaluation meeting. Over a five hour period, we met with a nurse coordinator, nephrologist, dietitian, social worker, financial advisor, and the transplant surgeon. It was a long, intense day, culminating with a "blood letting." I was required to go to the Hopkins lab and give more blood than I ever had at one sitting! Fortunately, Kevin and I had eaten the sandwiches I'd packed just before I went to the lab to get my blood drawn. Otherwise, I fear I would have passed out!

We were told at this initial consultation that my case would go before a review committee for a final decision regarding my transplant. All of the medical experts we saw agreed a transplant was in order and the sooner the better. Now, it's a matter of waiting to see what further tests I need to undergo prior to surgery, determining whether my daughter is a match, and, if so, scheduling a date for surgery. We are hoping that all will go well and that the transplant can be scheduled before the end of the year.

Immediately after the evaluation meeting, I felt extremely nervous. Even though it was great to finally meet with the Hopkins staff and get a lot of our questions answered, this meeting brought it all home that the transplant is really going to happen...and soon. How soon, we still have to wait and see.

We still have matters of insurance to work through and must choose our provider carefully. That's one of the scariest parts. We have to be really careful of the choice we make to assure adequate coverage not only for the transplant surgery, but for the follow-up aftercare. After the surgery, I will be required to take a whole battery of medications for life to prevent rejection and infection, and, for the first year afterwards, visits to the doctors office will be a frequent occurrence.

My daughter went for her initial blood and tissue tests yesterday. In a couple of weeks, we should know whether or not she can continue to be considered for donation for me. So, once again, we anxiously await results that will determine our next moves in this process.

Desirae and I had the chance to talk a bit more about our joint effort in this process this past weekend when she came down from Massachusetts for a visit. She is facing this with a sense of calm and level headedness and is so supportive of me. It is of great comfort to have such a loving daughter who is willing to be there and give so much. And Kevin has been everything I could ever ask for, too - loving, supportive, and always there by my side. Even though my nerves are a bit frayed, I feel confident in what will be.

So, for now, we continue to wait...