No Dialysis before transplant option is best?

[kellyt]

I was a predialysis transplant and could not appreciate my kidney more than I do.   It was my goal, along with my doctor, to get a transplant before I had to make the decision about dialysis.  I worked hard with diet and exercise and whole lot of persistence to make that happen. 
You don't have to be on dialysis to appreciate how devastating it is to have to go through that every other day.  All we have to do is look at the posts here and see the pain that our friends are going through to know that we don't want to go through that unless it's absolutely necessary.

If you can get a transplant predialysis, do it.

Thanks Vandi!  That's so good to hear!  That's been my doctor's and my goal since day 1.  However, he made it sound much easier and less stressfull than it actually was.   I'm pre-dialysis with a GFR of 7 (have been as low as 6 in Aug, but have been at  since end of Aug) and a creatinie serume of 6.43.  I really feel good and I'm not nearly as tired now that I'm on EPO shots bi-weekly, as well as OTC iron.  I don't have any other symptoms, drink when I'm thirsty and eat when I'm hungry.  I've cut out cheese, OJ, dark sodas (have one occasionally) and millk.  But that's pretty much it.  My phos and potassium levels are high, but within range or just barely over.  I guess you can say my labs are all within range to start, but I'm feeling good.  No vomiting or nausea, no headaches, no rashes, no itchy skin, no fluid retension.  I feel extremely fortunate!  I will have to do dialysis the night prior to transplant, but hopefully that will be my one and only time for the next 15-20 years (minimum).  Here's hoping .

As I find out more about other peoples journeys I feel more and more fortunate for mine.  I still hate the fact that I'm even on this journey, but I'm doing pretty good despite of it.

Good Luck, Trojan!

[RichardMEL]

Thanks for the kind words peeps.

I just feel that it's easy, specially when you're younger, to put off those things that you have in the back of your mind that you'd "like to do someday" thinking "Well there's plenty of time for that" - if there's anything that something like Kidney Disease teaches us is that life's too short and if I was asked to talk to a group of pre-dialysis [atients I'd stress two main things - do all that you can to look after yourself, follow meds/diets etc to prolong your kidney function prior to having to start dialysis, and to do all those things you want to do. Some may see that as saying "do it now because your life ends with dialysis" - NOT AT ALL!! However you do have to be realistic and realise that things DO change, and dialysis imposes its own set of conditions and restrictions. I'm all about living for now... who knows what is around the corner... that's more my point...

and I'm glad people are taking it up!! The cross country trip sounds fantastic

[Sunny]

Richard, I think you're right about going and doing things you want to do NOW if you are still lucky enough to be pre-dialysis or pre-transplant.
Dreaming will only get you so far, the rest must be experienced first hand. Don't let fear your kidneys will fail faster hold you back.

[pelagia]

About 3 years ago I found a little sign in a shop that says "today is not a dress rehearsal."  I put it in our bathroom, right next to our toothbrushes and where we see it every morning.  It reminds us both that we need to live and love every day.  We aren't willing to waste a single day.

[Sluff]

The exact reason I rode my motorcycle to Vegas last year. Live while you have the chance.

[trojan ska]

Yes indeed, RichardMel is absolutely correct in his advice on travel as he is on many other points as well.  It's good advice for  every human really but particularly for us whose lives take a big long detour once we start dialysis.  With the notable exception of Bill Peckham who isn't yet aware that things have changed.  Looks really good on him too.

Enjoy your trip and be smart by following your own counsel to not overextend yourself.  Pacing is everything.  Post pictures if you have a chance.

The best part of my trip so far is my little cousin in Santa Monica. She's not even two yet and has more personality than you can possibly imagine.





EDITED:Fixed img tag error- kitkatz-Moderator

[trojan ska]

Yes indeed, RichardMel is absolutely correct in his advice on travel as he is on many other points as well.  It's good advice for  every human really but particularly for us whose lives take a big long detour once we start dialysis.  With the notable exception of Bill Peckham who isn't yet aware that things have changed.  Looks really good on him too.

Enjoy your trip and be smart by following your own counsel to not overextend yourself.  Pacing is everything.  Post pictures if you have a chance.

The best part of my trip so far is my little cousin in Santa Monica. She's not even two yet and has more personality than you can possibly imagine.

EDITED:Fixed quote tag error in quote - kitkatz,Moderator

[paris]

The pictures are beautiful!  Your sweet little cousin is gorgeous!!  What a cutie.   I love the lily photo.  Monet is my favortie artist and your picture reminds me of his paintings.  Thanks for sharing.

[monrein]

Loved the photos.  Your little cousin is beyond adorable.   

[pelagia]

what a cutie.

[trojan ska]

Hey guys

I'm back home in the midwest. I had a great trip but it was a little shorter than I wanted. I hope to have some new pics online soon to share from the remainder of the trip.

Thanks for all the support

Scott

[willieandwinnie]

Hey Scott, those are great pictures and I bet you had a wonderful time with that gorgeous cousin   

[Lucinda]

I am really glad you went on your trip.  I am pre-dialysis and have been escaping the inevitable every month now for the past 18 months.  I just took a three-week trip to Italy and now I have basically done all I wanted to do before starting dialysis.  I am just getting a few alternations done at home now and I will be starting with no regrets.  That said, I still breath a sigh of relief every time I go to the specialist when she says we can hang off for another month and get bloods done again.  In the past three months since I have been sticking to a pretty strict diet and excercising every day- and left my job - the creatinine levels have gone done and my blood pressure is pretty normal.  I feel absolutely terrific - not nauseated or itchy or tired - nothing really.  My numbers are similar to yours but still up and down.  If I start getting symptoms though, I wont hesitate to start.  I believe it is a hard climb back if you start when you are not feeling so well.  I hope you manage to hold off until you get your transplant.  xx

[kellyt]

Trojan, I'm a pre-dialysis transplant patient and I can say that just the thought of spending one more night in the hospital is enough to make me take care of and appreciate my new kidney!  But I have a "buddy" who has been on dialysis for a little over a year and he's scheduled for living transplant Dec 3rd and I see a whole different look in his eyes and bounce in his step already.  I cannot imagine for one minute what he's thinking except "NO MORE DIALYSIS".  I was excited, but I didn't have the look he does.  God Bless him and his up-coming surgery.

Now, for labs and such, everyone is truly different.  Myself, my GFR has been bouncing around between 6 and 7 since about April.  In Aug. my creatinine was as high as 8+, but I was still capable of doing a lot.  I was very fortunate not to have any other symptoms other than fatigue and muscle weakness.  My neph said that for whatever reason (he's guessing muscle) that my body was able to tolerate the higher creatinine level.  It came down to 5.1 by the time I admitted last Tuesday for transplant.  I have no idea what my GFR is now, but my creatinine is at 1.2.

I agree that you have to go by how you feel.  But I'm also one who trusts my doctor's opinion, so I listen to him, as well.  My doctor was shocked that I was able to do the things I could, like mow the lawn and stuff.  I was tired most of the time, but I tried to take advantage of the bursts of energy whenever possible.

My transplant doctor stated specifically that a pre-dialysis living transplant was the absolute goal for everyone and usually works out the best.  With today's surgery techniques and advanced medications he said that unless I am non-compliant with meds and/or diet, other than a specific trauma to my new kidney that there is no reason why it should reject.  I just have to watch my health closely for the next six months to year and then things will return (sort-of) to a semi-normal state.

But I'll tell ya, we "planned" our transplant just right.  The day I admitted, every time I would clear my throat I was tasting/smelling ammonia.  That was a new thing for me.  We cut it close!  But yet, he still didn't make me do dialysis that night!

Good Luck!  Take care of yourself!