Never had dialysis?

[Falkenbach]

I was just wondering how many members (who themselves have a renal disease) have never had dialysis?

Obviously, this is a dialysis board so most members will have been through, or are currently going through, dialysis.

I did not have dialysis, I had a pre-emptive transplant.

[paris]

Trying desperately to have a pre-emtive transplant, but it doesn't look like it will happen.  Holding at 15% --- we shall see what happens.

[Deanne]

I'm still at about 25% function.

[paddbear0000]

I'm at 19% function and seem to be in a holding pattern.    I'm going to try a pre-emptive transplant, but we'll see how that works out.

[Psim]

I'm at around 25%. From the first day I came to IHD I felt welcomed, and the advice I've gotten -- both about what I'm experiencing now and about what is coming down the road -- has been so valuable. A lot more real than the Dialysing Happily Ever After videos the Kidney Foundations shows! I think pre-dialysis folks can really benefit from a place like this.

[Falkenbach]

You are right, but I think ALL kidney disease folks can benefit from a place like this. It's by far the most active kidney forum I have found on the internet, and most supportive.

[RichardMEL]

Y'know I wish I'd looked for and/or found this place before I started.. it would have made the unknown about that first time so much easier to handle ... even though I knew what was going to happen I didn't know the specifics... eg: the weigh in... the way the needles went in.. the sounds of the machine.. the feelings as it happened.. etc... and I think finding this community would really help anyone pre-dialysis.. even just knowing many others out there have been or will be going through the same thing..

When I first went to my unit there were a bunch of regulars - mostly older men - there.. and they really didn't offer much to a newbie like me... The staff were great but they don't KNOW what it's like personally... now I offer myself when a new starter arrives in case they or a family member wants to talk to someone who has "been there, done that" - I had one guy talk to me last week with his wife just starting and I think it helped for me to chat to him for an hour or so.

IHD rocks!

[paris]

 I think that is why I "lerked" for so long before joining----I wasn't on dialysis and wasn't sure if I would be welcome.   Was I ever wrong!  Having so much knowledge BEFORE has helped me cope.  I know what to expect and nothing is a real surprise.  I am more in control of the situation and it is all because of IHD.  Thanks everyone!

[Falkenbach]

now I offer myself when a new starter arrives in case they or a family member wants to talk to someone who has "been there, done that"

Give yourself a pat on the back! That's excellent.

[ODAT]

My mother, Carole, is 75 (almost...Feb 9) and is holding at 15% pre-dialysis. We go on 1/16 to see how the numbers are then. She has been told she is too old for a transplant.

Sorry, I reread cycobully's post and it said "who themselves have a renal disease" With all the kidney issues in my family, I may very well be here for myself someday...

[Razman]

I'm at 24 %  but  I am already giving myself  EPO shots and taking lots of medication plus vitamins to see if I can make this last as long as possible.  My doctors goal is to go direct to transplant .

[angela515]

I love to welcome pre-dialysis people here with open arms as I hope they can learn alot and gather as much info as possible to hold off on dialysis long as possible and hopefully get a pre-emptive transplant.

[Wattle]

I wish that I had never had dialysis. Does that count?   

I also wish that I had found this site BEFORE starting dialysis. It would have made the choice between Haemo and PD a little easier to research. I have also learnt that dialysis o.k and I will be o.k (well sort of... you understand what I am trying to say  )

[RichardMEL]

thanks muchly for the compliment CB....

I like to do what I can. I think the staff realises this because sometimes they actually point people in my direction to chat to or whatever and I don'tmind. I think it would also make newbies feel a bit more welcome and maybe a little less apprehensive about the whole thing (or maybe not.. I'm not sure). I never try and push myself on anyone of course.. but I like to give everyone a laugh from time to time and if people want a chat then I hope I am approachable... plus heck it helps pass the time!

[lola]

Otto's creatine was over 9 when he had his first transplant in 93 so he just missed it BUT in 2002 he went in for hip surgery and got SLEEPY KIDNEY and in 3 days kidney was at 0% so he started Dialysis and was on it for 2 months his creatine was up 20. and they started to say if the kidney didn't wake up he would have multi organ failure but one morning he woke up and so did his Kidney and in 1 week his creatine was 1.6 It was the worse 2 months of our lives and now that he needs another transplant we are hoping to find a donor before Dialysis because of his experience before

[Falkenbach]

My mother, Carole, is 75 (almost...Feb 9) and is holding at 15% pre-dialysis. We go on 1/16 to see how the numbers are then. She has been told she is too old for a transplant.

Sorry, I reread cycobully's post and it said "who themselves have a renal disease" With all the kidney issues in my family, I may very well be here for myself someday...

Oh, I guess I worded that badly come to think of it. I welcome everybody's input. 

[RuthWells]

I am pre-dialysis and hoping to go straight to transplant when the time comes.  I have PKD and am at 40% function, and hanging tough (most days!).

[Falkenbach]

Hi Ruth

I can't remember what % function I was on before we went to transplant. I know my creatinine was over 500, and because I am of small build (at the time, about 48 kilograms in weight) my nephrologist didn't want it to get any higher, or else I was going to require dialysis.

I was very lucky that I had my dad as a donor.

However, at 40% you should still have a bit of a grace period hopefully. Hope you are feeling well. 

[RichardMEL]

wow I *WISH* my creat was at 500! LOL.. mine's over 1000!

At 40% of function really I think very few signs of CKD should be noticed by the patient.... I didn't even start to feel tired till I was well under 15% function. I guess everyone is different though.

[kellyt]

I have not done dialysis.  Nor have I transplanted.  I am in my evaluation process (actually waiting for a tooth to be pulled to continue with evaluation).  I, too, am hoping to transplant and bypass dialysis for as long as possible.

My GFR is currently 18.  I see my neph on the 7th of Jan.  Hopefully it hasn't gone lower.

[Mimi]

I am at 18% and have been for about 6 months.   I am too old for a transplant so unless the Lord takes me home
I will eventually be on dialysis.  But that is OK  I got a portable DVD for Christmas so I can watch movies during
treatments.
 
Mimi

[Falkenbach]

Mimi - hope you don't mind me asking - but at what age do the doctors consider a patient too old for transplant?

[Mimi]

There is no age limit, but you do have to be physically fit to stand the rigors of a transplant.  In my case I have already
had a heart attack and I have diabetes.  Also the new allocation plan slightly limits kidneys to people over 60.
I don't mind, at 74 I have lived my life, the available kidneys should go to younger people with their lives still ahead of them.
 
Mimi
   

[Falkenbach]

That's a sweet thing to say, Mimi! Of course, your life is still just as important as everybody else's though!

I guess the age thing can go the other way as well - for donors as well as recipients. As my dad is "nearing 60" (my parents' wording, not mine), my mum was starting to worry that if we didn't "hurry up" with our operation, he might not be able to donate his kidney to me. My mum is a funny one sometimes  . At the time of our surgery in May this year, Dad was only 58. I'd say he's fighting fit.

[Mimi]

Ha, Ha, Ha!  How many times I have heard that.  At 35 my mother informed me I was middle age.  Then I
was nearing 40 and finally nearing 50.  It is a blessing tho, to have parents who worry about getting to old to help
you.
 
Mimi