Kidney Transplants

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

Erich, good reading…I am on the list and its all for the reason that my Neph said I am a great candidate. I did have a transplant in 1979 - 1982 …somehow, today those transplants have to be better than ever, only when your lucky…


What you said was heartfelt and so true. I am a fellow FSGSer and am on the transplant list but in the state of New South Wales in Australia where I live the average wait is about 7 years. Australia has very low donor rates. I have been offered a kidney from my husband and my sister but because I know the risk of recurrence I would prefer to wait a while longer and Nocturnal is keeping me fit and well. This is a hard decision on both of us but we are not as advanced with the FSGS testing and plasmapheresis out here, it i not so readily available. I, like you and Gus and everyone else just hope that medical breakthroughs continue to happen through the dedication of some amazing scientist and doctors.
You and Gus have been through so many hard tmes. I am having my first real surgery on my fistula next week after 2 years on dialysis so I guess I just need to count my blessings.
Hey you are so lucky to have hose beautiful kids though, I was just getting around to thinking about the breeding business when I was diagnosed with FSGS 15 years ago. It was not meant to happen for me. I have surrogate kids though, my dogs (;


Hey Beachy, maybe you should move North a few kms…I’ve been told the wait here’s about 3 years…after not being too keen on the idea while I was doing HHD…since I lost the fistula, I’ve tipped the see-saw & am now in the ‘yes O.K.’ category, 'cause if the next (15/05 - next Tuesday - wish me luck) attempt at a fistula goes awry, I’m in the poo.
Apparently there are a few of us with access probs that they want the surgeons to bump us up the list, so to speak. Your previous time on dx counts too, btw, so my 3 + years puts me near the top (?) anyway (?) …he says, confidently B-)

Hiya Bear
Nice to hear from you! Believe me I have thought about moving over the border on more than one occasion.
Hope it goes well on the 15 th. I am having my fistula cut and rejoined on the same day mate. Have a lot of scar tissue that needs removing. Will be thinking of you. My op is 1pm in john Flynn.

[quote=beachy;13536]Hiya Bear
Nice to hear from you! Believe me I have thought about moving over the border on more than one occasion.
Hope it goes well on the 15 th. I am having my fistula cut and rejoined on the same day mate. Have a lot of scar tissue that needs removing. Will be thinking of you. My op is 1pm in john Flynn.

Good luck to the both of you. And, Beachy, thanks for the nice words about my kids. I feel like I’m the luckiest man in the world to be their father. Erich

Waiting for transplants can be frustrating. My hubby was on the top of the list (6 years wait) and after they took out his kidneys (cancer) they said 2 more years wait. His Dr. told him yesterday, it may be more than 2 years. I just hate to see him get his hopes up and then get disappointed. He is still on the list and if it gets to be his time…he’ll take it, but I am not going to bet the morgage on it.

Erich - our children are what keeps us trying. I have 2 grandkids who are my heart and I want to be here for them. That keeps me making good ,healthy choices. Enjoy your kids, they grow up fast and they keep us young. You are a very special guys who will take the responcibilities of a Mom. My son-in-law also is the caregiver for my grands. He fell 2 stories on his job and is still not back to work. For all you men who care so much about their families that they take on Mom’s job…Happy Mother’s Day.


There can be significant differences in waiting time from one organ procurement organization (OPO) – the entities that recover kidneys for transplant – to another. Some patients choose to list at more than one transplant center if the second is in a different OPO. Transplant programs are supposed to let patients know that they can multiple list. Here’s a booklet for patients on multiple listing.

You and your husband may want to check out the data on waiting times at your transplant program and others in areas that are not too far away where you may be willing to travel to get a transplant. Data reports for the U.S. and for individual transplant programs is available. Look under Program-Specific Reports and click on Center and OPO reports. This will bring up a map. Click on CA and choose the kidney programs to find the one where your husband is listed. It appears that in CA, the waiting times for transplant are longer than the national average.

Transplant programs want to be sure that anyone who has had cancer does not have active cancer. The anti-rejection drugs needed post-transplant can let any remaining cancer cells to spread. There is an increased risk of getting several different kinds of cancer after transplant even if someone has never had cancer. Therefore, it is very important to have cancer screenings. Your husband’s transplant program should have information on screening for cancer post-transplant. You can find information about transplant on several website:
– National Kidney Foundation brochures at
– Transplant Living at (see tabs across the top)