Dialysis or Transplant?

[Lillupie]

Well I went to my third yearly transplanbt evaluation, and they told me that i should get a call for a transplant within the next year. It really makes me nervous because I really havent had any problems in the last two years doing PD, and I have a pretty much a normal life. I heard wiht a transplant you have to drink like 2 liters of fluid a day, and i am really not sure that i can do that. I dont like drinking as It is. My blood pressure runs low on PD because of lack of fluid. I dont know. In a way I would rather stick with PD.

Lisa.
Am I wrong?

[FindingNeverland]

It's your preference really. I personally wouldn't put off a kidney transplant because of how much water you are required to drink. As much water as I drank after my transplant nine years ago, I don't think I ever came close to that amount and up until recently my kidney did fine. I did PD nine years ago and now I'm doing HD because its more convenient at the moment, still I would rather have a transplant. I go back on the list in August and I already have a matching donor. I just did better with a transplant, on dialysis I notice I'm a lot weaker and it doesn't take much to tire me out. Plus I'm only 27, I have a lot I want to do without having to worry about scheduling my life around dialysis. That's just me though. You got to go with what works for you and I'm sure after taking some time to contemplate it you'll know what you want to do.

[del]

Having a transplant or what type of dialysis you do is a personal choice most times - unless PD stops working.  My hubby has chosen to stay with nocturnal hemo dialysis for a lot of reasons.  One main reason is transplants are not done in our province (which is an island) so you have to be away from home because you have a ferry or plane ride. another is the anti rejection drugs.  We know they are a lot better than years ago but he still has an issue with them.  Plus he is doing really, really well on dialysis.  The doctors agree with him when he says if something is working and you feel good with it why try to fix it!!

You have to choose what is best for you and your lifestyle. Neither dialysis or transplant is a cure!!

[okarol]

If you get the call you can decide how you're feeling about it at the time. Jenna does not measure her liquids. She had to be very conscious about keeping hydrated the first couple of months but after that she's done fine. If pd works and you are unsure about living with a transplant, the choice is yours. Not all treatments work for everyone and you should go with what you're comfortable with..

[kittylee]

I know that exact feeling - I have been on PD for almost 2 years and in all that time I have struggled in my head whether I would accept a transplant. Most of my family and friends think it is a cure when in fact couldn't be further from the truth - anti rejection drugs, steroids, weeks away from my family in the city and what if it fails.. a lot of stress. Then I think about what my Dr said before I went on PD and I don't have half the side effects that they said I would have and I am still peeing  so maybe it will be OK. I think its normal to doubt the unknown and until you get the call you won't know which way to go. Good luck

[Tabbygirl]

Here I am, 5 years in on PD and 5 years on the transplant list and still wondering if I am doing the right thing.  Have done awesome on PD for the last 5 years, work full time, feel relatively "normal" most of the time.  I know in my heart that transplant is the way to go, but my head is scared of change.  I don't like to drink a lot either and the meds really scare me.....just taking each day as it comes.....
Good luck with your decision!

[Rerun]

You don't have to take it, but stay active on the list when the day comes when you may want a transplant over PD. 

If you are feeling good and living life maybe wait on that transplant.        (actual size)

[Sunny]

Might as well get on the list and do your thinking while accruing time.
You can always turn down a kidney should it become available and you feel you're not ready.

[murf]

From my understanding, PD has a limited life. Eventually you will be on hemo and a lifestyle that you may not enjoy. So, my humble advice is to take the opportunity of a transplant with both hands. Otherwise, You may regret it in the future.

[Jie]

I would get into the list and cumulate waiting time and make the decision to accept a kidney later. It is not a sure thing that you can get a call within next year. In the U.S., it depends on blood type, your HLA, and the center location. The life span of PD is not certain for a given patient, and quality of life and risks of post-transplant medicines are also needed to be considered when deciding a transplant.

[paris]

Lillupie,  Three years on the list is good -- time put behind you.        When the call does come, you will know what to do.   You can pass on the call and give it more time if you want to.   It is all up to you.   It is about the only thing we are in control of!       I hope you can come to a decision that feels good for you.   

[Lillupie]

Thanks for the advice everyone! Much appreciated. I guess I am just afraid of the unknown.
Also, I have heard of so many stories of people losing thier kidneys after a week of getting transplant.
Lisa

[Zog]

My wife has lost three transplants and is trying to get on the list to get a forth.  She has her reservations about transplants as well.  I always tell her it is a treatment option that will buy her time and help her live longer. 

No matter what treatment you are doing, PD, Hemo or Transplant, they all eventually fail.  There is no cure.  My wife can't do PD anymore.  She is on her third fistula.  Her last fistula operation was pretty drastic and if it doesn't work she has to go to the other arm.  We don't like to think about this, but you know you only have so many places you can put a fistula and grafts, catheters, and leg fistulas have high mortality rates.  She has had 3 failed transplants.  She has had 3 3/4 of her parathyroid glands removed.  She is only 28. 

Our goal is to get her to 70 or something, and to do that you have to leave all options on the table.  Each option buys you a few years.  If you are lucky, maybe a decade or so.  Don't take any option off the table at this time in your life.  Get a transplant if you can.  If you have to be picky, wait for a perfect match from a young donor.  My wife had one of those for her last kidney.  It lasted her 3 years, which was the longest of any of them.  She never lost any of them to not drinking enough water.  I think that is the least of your worries with a transplant.

Our thought is that the longer she can make it the better the drugs, machines, treatments will be.   Things have changed so much in the last 16 years she has been fighting this.  Our portable home hemo machine is great and we were so glad to learn that was a treatment option after she lost her last kidney in 2007.  The daily meds and the induction therapies have changed so much with each transplant.   The levels of steroids have dropped a lot.  Some people don't even take Prednisone with transplant.  Maybe someday they can implant a drug dispensing device near the transplant to protect it... like a Norplant does with birth control.  Good luck and stay on the list.  You may have a sudden change of heart when you get the call and decide its the best thing ever.

[cariad]

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