Dialysis or Transplant?????

[KidneySinger]

Ok...so I am sure that most of you would pick a transplant hands down..no questions asked.
But I have a question.
I am going in for my fistula surgery in a couple of weeks as my GFR is down to 21.
My Mayo doctor told me about going on a transplant waiting list.  He was shocked when I wanted to ask questions about whether to do a transplant or not.
The reason is...
My 2 uncles, who also had Alports, both had transplants from two matching sisters - of which I have none.
My first uncle went about 10 years and died of lung cancer due to the rejection medications he was taking.
The other uncle, still alive with his transplant, has to get cancer surgery every year and has been fighting different types of cancer, mostly skin.  Every time I see him he shows me some new horrific scar from having cancer removed.
Cancer has run in different parts of the family including my mom, whom is just an Alports carrier.
I keep finding myself questioning whether it is worth it to get a transplant and have to be so concerned about a new problem?  I really don't know what to think.  I have not been on dialysis yet so I can't say how bad it is - but to me...cancer seems to be worse.
I have read that dialysis patients without diabetes can live long lives.  I just turned 50 and I am fine with another 20-30 years.  Maybe I will change my mind after I start dialysis but I'm trying to figure out - which would I hate more...dialysis or cancer?  Any thoughts?

[cariad]

Hi KidneySinger and welcome to the site.

My experience with both dialysis and cancer is extremely limited (well, zero with cancer, touch wood).

I did not really pick a transplant, it was picked for me, and I had a long run of success with it and had a devil of a time with dialysis, so I am definitely one of those that felt like transplant was the obvious choice when it came down to having a second one.

Have you ever had any skin cancer? Are you seeing a dermatologist regularly? I know we have a member on here who has had a transplant for almost 40 years, he does not post much, but he has mentioned that he frequently has precancerous skin cells removed. He did not seem too bothered by it, but I can certainly see where your family history would make you more wary. This is really a decision that only you can make. I would get on the list, find a dermatologist and consult with that person about transplant risks. Remember, you can always turn down a kidney offer, but the sooner you get on the list, the sooner you begin accruing time if you decide transplant is the way to go. With a GFR of 21, I am really surprised they are even letting you get listed. Customarily, you would have to wait until your GFR slips below 20.

In fact, GFR 21 seems way too early to get an access placed. Has your decline been rapid?

[KidneySinger]

Thanks Cariad...
Wow...I thought I was getting the access late?  My doc at Mayo said you should between 20-25 GFR.  I was at 28 about a year ago.
My mother had Melanoma and caught it just in time.  I do see a doc once a year and have pre-cancer taken off now and have for years.  I didn't know if the transplant would speed that rate of cancerous cells as it did in my living uncle and caused lung cancer in my other.
I have not spoken to anyone or am I on any list yet - just to my kidney specialist at Mayo.
Here is what I have read about getting on a list and it seems I am close:
In the United States, you can usually be evaluated as a potential kidney transplant recipient within the 2-3 year period before you would be expected to start dialysis. If you have done so, credit for waiting time on the waiting list begins when you have reached 20% kidney function (more precisely, a GFR of less than 20, as per a rule change implemented by UNOS in 1998). Since dialysis is typically started when GFR is about 10%, it is therefore possible to obtain a cadaveric kidney transplant before having actually started dialysis.
I am getting the fistula in my upper arm and have no other health problems.
Honestly, I am more freaked out about the cancer aspect than dialysis.
Are there actually people that choose to stay on dialysis rather than transplant or is this just crazy thinking by me?
Thanks again
 

[Desert Dancer]

Are there actually people that choose to stay on dialysis rather than transplant or is this just crazy thinking by me?

Nope. I have no desire for a transplant. I'm not listed and don't foresee a time when I will be. Nocturnal dialysis gives results equivalent to a cadaveric transplant, so why fix it if it ain't broken (among other reasons)?

[cariad]

Wow...I thought I was getting the access late?  My doc at Mayo said you should between 20-25 GFR.  I was at 28 about a year ago.

OK, so that's not dangerously fast but it does seem to be declining at a reasonable pace. Some people start dialysis with a GFR in the mid teens, depending on how they feel, so I guess it's better to be cautious than be caught unprepared. You are definitely not late in my experience.

Are there actually people that choose to stay on dialysis rather than transplant or is this just crazy thinking by me?
Thanks again

Absolutely. The fabulous Desert Dancer above. Also, look up the posts of Bill Peckham, Hemodoc, Zach (he's been listed a few years, but is about to reach his 30-year anniversary on dialysis) and quite a few others. I would say the choice to stay on dialysis is much less common than trying for a transplant, but certainly not unheard of. I can definitely see why cancer would scare you more than dialysis. I would discuss the risks with your doctors and get all the information you can. And again, unless you are 100% certain that you will never want a transplant, I would get listed, but that's just me. I like to keep my options open.

Good luck with your decision!

[MooseMom]

For what it's worth, I agree with Cariad.  If you've never had a transplant, and if you've never been on dialysis, how on earth can you expect yourself to make a measured, well-thought out decision?  You can't, so don't!  Keep your options open.  Start the listing process, get on the list and keep your options open.  If you are on the list and you are offered a kidney, no one is going to put a gun to your head and force you into surgery.

I can certainly understand your concerns re cancer, especially with your family history.  You are correct to be wary.  These are things you can discuss with the transplant coordinator at your initial evaluation.  These are things you MUST discuss with the tx coordinator!

[fearless]

I second the above opinions. 

[edersham]

I totally agree with Cariad, Moosemom, and fearless. Keep your options open and learn all you can about  dialysis, transplant, fistulas and catheters. My Neph and Mayo Phoenix didn't recommend dialysiis for me untill I was almost down to 10. I had a catheter for 2 1/2 months untill I got a transplant. Catheters can be an option for up to 6 months and I know someone who got his dialysis by catheter for 2 1/2 years before getting a transplant. The dialysis centers don't like them because they compete in the marketplace partly based on their infection rate but if they and you do everything right they  can be an option and you dont have to have them put in untill a day or less before you start D. Also check out the average lifespan of someone your age on D. Make your  own choice but make it armed with all the information out there.

Good luck
Ed

[fearless]

I wonder if it's possible to maximize your chances against cancer from the drugs by maximizing every other aspect of your immune system against cancer - like all the right nutrition and none of the wrong nutrition. And all the supplements that are known to help the body fight cancer ??

[coravh]

Both my parents have had skin cancer and yet I am 9 years post transplant and have not had any problems. I do wear number 65 sunscreen though and cover up whenever possible. It is possible that your family may be prone to cancer anyway and the transplant might not affect that significantly. If it is a choice between home hemo and transplant - from what I understand the longevity stats are not that different. If you do regular in-center hemo though, from what I understand for most people your longevity is significantly shorter than if you get a transplant. That is one thing to consider.

Cora

[The Noob]

this is a very good question, and one we are just now discussing.

for the first year of dialysis, and into the better part of the 2nd, thats all we could think about, because DH had a horrible experience that kept repeating itself.
in center hemo 3 times a week was awful, plain and simple for him.

we have been home just over a month now with Nxstage, and its amazing. his recent labs were most excellent!
and he is now cleared to the "list"..
that in itself took about 18 months because of the constant issues he had. his cousin had a tx 11 yrs ago and confirmed Alports, but DH has had no biopsy so its unknown what cause is.

anyway, he is tossing it back and forth, because he is 58, wonders what he would do after a tx, losing the disability and insurance and so on.

he is on a 4 hour treatment 6 nights a week. it does cut into your life, there is no doubt, but it exceeds in center by no comparison. we are trying to get his tx's extended to even just 5 hours while he sleeps, but he doesn't sleep well, theres not much of a schedule, he wakes easily and early.

anyway, if you must do dialysis, i recommend Nxstage. and some of you are going to argue with me, but for us, it is easier and less supplies than PD was. thats just us.

anyway its a good question!

[KidneySinger]

Thank you all!  I have a lot to chew on~!