Okay ya’ll. I’m going for the transplant.
I signed up for the Transplant list with Harris Hospital in Fort Worth, Texas. So, if you readers with two kidneys happen to be there…. LOL
I’ll keep you informed as I venture along with highway.
Here’s what’s transpired so far. A few weeks back, as my nephrologist made his rounds in the dialysis center, he said, “Devon, you should get on the Transplant List”. I responded with the obligatory, “Yeah, I should do that.” Then a couple days later, I went to the vascular surgeon to have my periodic visit regarding my fistula (I like to have him check it a couple times a year because it’s my lifeline!) and he said likewise, “Devon, you should get on the transplant list.” So, I said to myself, “Devon, you should get on the transplant list!” I resolved right then and there to get on the list.
Since my dialysis center is on the way home from the vascular surgeon’s office, I stopped there and got the applications for three different transplant centers. I filled each out as best I could then carried them home and completed them all that same day. I placed each one in a separate envelope with the checklist of information each required and the name of the center on the outside. The next day I took the envelopes to my nephrologist’s office and for his contribution and sign-off. A week or so later, I began to get calls from the centers to acknowledge they had received them.
Then, last week (Tuesday), I got a call from the Harris Transplant center and the nice lady said I could attend a one hour orientation class on the following Thursday. Since I had the time open, I jumped on it. The hard part was finding the danged building in the mass of buildings that make up the hospital complex in Fort Worth. (Cities always look so much bigger when you’re lost in them. Even my GPS said, “You’re on your own!”) Finally, I found the parking garage and, eventually, the classroom.
We got more forms to fill out, of course, and watched an interesting video about all the issues associated with Transplant. A question and answer session followed. One important reminder was that a transplant is NOT a cure. It is simply another modality (or treatment type). It requires a lot of discipline to make sure you visit the center frequently for check ups, especially in the weeks following the transplant and that you take all the medications no matter how they might effect your body. Also, you have to wear a mask whenever you’re in public while you rebuild your immune system as the anti-rejection drugs make you susceptible to germs. I plan to wear a Mardi Gra mask. (LOL Actually I may do that for my first visit after the surgery.) She also described the team that will be working with us in the time before, during, and after the transplant from surgeon, to nurses, to social workers, dietitians, etc.
One advantage of this modality is I won’t have to avoid foods that contain lots of potassium and phosphorus any more. In fact, I may be encouraged to eat more! Yay! Also, I will HAVE to drink lots of fluids, especially in the days following the surgery. The nurse leading the class mentioned we’ll have to have a “Foley Catheter” inserted. She said it like she was having one inserted herself. It’s an unpleasant experience because it contains a bulb that is inflated after it’s inserted so it will remain in the bladder until the bulb is deflated and the catheter is removed. The bladder muscle doesn’t like that intrusion but, they need to carefully measure the amounts of fluid intake and output to assure the kidney is working properly.
By the way, you don’t have to wait for complete kidney failure (ESRD) to begin a transplant process. You can begin any time after your kidney failure is diagnosed (CKD). In fact, I was told I could get on the list back in 2004, or so. Since I was in an advanced state of denial at the time, I just let things go along while I progressed from CKD (Chronic Kidney Disease) to ESRD (End Stage Renal Disease or kidney failure). Perhaps I should have then, but I didn’t and that’s way in the past.
Thanks to a recent change in the Kidney Allocation process, I will get credit for the years I’ve spent on dialysis already. Previously, the rules said the waiting clock began when you got on the list but now I’ll get credit all the way back to August 2008 when I started dialysis. I know that seems unfair to some patients but it encourages patients like me to get on the list and get a transplant. Also, because I will be on Medicare due to my age, I don’t have to worry about Medicare Part D paying for the drugs I’ll need following the transplant. They can cost several thousand dollars per month. Currently if you are on Medicare due to dialysis (ESRD) and under 65, you will get kicked out of Medicare after three years. There are efforts in Congress to change this but that’s the rule for now. Keep it in mind if you are considering a transplant. See my blog about this from a few years back.
Ignoring the time spent finding the building and a parking space and deducting the time spent filling out forms, I’m one hour into this adventure. More to come…
Thanks for reading.
© 2016 DevonTexas
Reblogged this on kidneystoriesblog and commented:
Good luck Devon!
Very happy and excited for you!