I was reading the blog of a dialysis friend of mine tonight as I finished up my dialysis run at 3:00 a.m. I didn’t want to dialyze tonight. I was tired and had already skipped a day earlier in the week.
My son had a music concert with his school (he is a second grader) on Monday night, a dress rehearsal Tuesday night and an end of the year performance last night at Wharton Center of Michigan State University with the Michigan State University Children’s Choir. He is in their Preparatory Choir. Each night I had to be with him because there would be no other place I could possibly be. Being a father is what I do.
After laying beside him in his bed and singing a few songs for him, I found the energy to make a good decision and hook myself up. In a few hours my children will wake up and my son will go to school. I’m not sure how creative I’ll be later today with my three year old daughter. She is the only pupil in my Dadda Daycare. If I can just get to her 1:00 nap time, I think we will be fine. Triple espresso, her I come.
In his blog, my friend was explaining how things are going o.k. but not as well as he would like and no where near like they were when his kidneys worked. His blog shares his emotional, financial and physical difficulties.
He lightly discusses the potential that a kidney transplant may have for him, but seems very hesitant about pursuing one. Like all people who lose the use of their kidneys, he has been through the ringer and he is not done yet. He is tired, scared and full of guilt.
When I was through reading his blog I wrote the following message to him.
I’ve been reading your blog tonight and understand having hesitancy about getting a transplant. When my kidneys failed within 3 months timespan my wife and I immediately scheduled a transplant (we were a close enough match) thinking that we’ll get the transplant and I’ll be back to work in no time. Well that was six years and two transplants ago.
For me they failed because I have recurrent focal segmental glomerulosclerosis (FSGS). We didn’t know it was recurrent until the second (cadaveric) kidney failed.
For most people with end stage renal disease, kidney transplants work. Seriously, most transplants work.
Each time I went under in prep for the operations I thought I wouldn’t be waking up. Each time I did. In the last six years I had two kidney transplants and two nephrectomies (removal of the transplanted kidneys), a partial parathyroidectomy, multiple fistula surgeries, multiple biopsy surgeries and my darn appendix broke last spring and had to be removed. You know in AA they report how many days of sobriety, well I’m proud to report that I am 365 days surgery free and counting. I’m sure you have had your fill of surgeries too. Each time I figured my number was certainly due to be up. Low and behold I’m still here.
I recently searched the web for FSGS research projects that I can enroll in (mostly blood work - no sweat). I’m contemplating going to Cleveland Clinics to see if they have developed any new treatments that might allow me to have a successful kidney transplant.
You know from our Nx Stage (home hemodialysis system) discussions how well I’ve felt this past year - the most stable and the most like me in six years. Even so, I know a transplant will give me an even better quality of life - if it works. It will allow me to live much longer than on dialysis. I know that you have a young daughter and that is important to you too.
Even if your transplant only lasts six years those six years with a working transplant will add years to your life that you will not get by staying on dialysis.
The bottom line is to get tested and get on a list. It took three years from when I was listed in Wisconsin until they gave me a call. That is a lot of time to think it over. When the phone rings you can always say no.
If you say yes and it doesn’t work, you will be right where you are now.
For me, when it did not work that meant a 30 day stay at the University of Michigan and a 41 day stay at the University of Wisconsin away from my family plus additional downtime, tons of grief, layers of stress on my wife, son and for the latter one, daughter. It did suck royally.
But, we all recovered and we are moving forward.
Anyway, I know it is a tough personal decision. But, if the doctors tells you that you are a good candidate then get on the list. You will have plenty of time to decide if it is something you want to do.
Take care and good luck, Erich