Hi

Sorry for the depressing title but i cant get an answer from my nephrologist. My GFR is 23%, my createnine is 225- serum urate level 0.60mmo1/L. To give you an idea my GFR IN 1982 was 63% so you can see i have lived with this for a long time. I feel perfectly well except my BP has gone up for which i am being treated and my BP is now 120/75. I spose all i want to know is when am i going to feel ill. Anyone else been in this position? I would like to have some idea so i can reorganise my life. Any thoughts? Thanks

Unfortunately, there is no firm answer. Many nephrologist will give you the averaged number that it will take about 5 years to get onto dialysis. Each person is different. In my case I went from 195 in 1994 to dialysis in 2001. But I had evidence of kidney problems since 1979. Often, the deterioration will speed up so don't get too depressed if that is what happens.

Have you decided what modality to choose? Or will you be able to get a preemptive transplant?

Good luck to you.

Cora

Hi Cora

Thanks for replying. There was evidence of kidney disease when i was 17 so ive had it a long time and never felt apprehensive until now. My nephrologist has not talked about dialysis or transplant so i dont bring it up. Im like an ostrich with my head buried in the sand! I will just have to pin him down on my next consultation .So if hes going to say one year then i want to go on a very long holiday!

Since I'm not an expert, don't quote me, but I kind of doubt that it's only a year. Unless something weird and unexpected happens you should have some time. I know that here in Ottawa, they usually start the treatment options education at over 300.

Dialysis is really scarey before you get there. Once you get there it is certainly manageable. Nothing is ever as bad as you think it's going to be.

Cora

i would really start asking about the transplant options now and even go as far as asking relatives if they may be interested in donating a kidney to you.really.this is something you really do need to plan for now while you still have the energy and are not in the middle of crisis,you know what I mean?also,unfortunetly kidney doners seem to be few and far between and there are sooo many paople who are on the list who have been waiting on the list for many years while on dialysis and are still waiting.If you can find a suitable donor who can be thoroughly tested and you have a good match,believe me,that will be one huge thing off of your mind you know?

My husband was actually planning on donating part of his liver to our son and was totally okyed ans totally tested in and out and we had the date all set for the Tx,but unfortunetly when they found out his disease was much more invasive and would require much more liver than my husband would have been able to safely give,well plan A was scrapped and we were totally devistated.luckily,he did get a new liver and honestly just in the nick of time.
There are actually many many people out there who really feel it is the right thing to do,so much in fact that they are just donating one of their kidneys to anyone who needs one.can you believe a gift like that?sometimes folks can really suprise you ya know/

i really do feel though that it is probably time to really start thinking about transplant options now vs later,when things are not quite as stable.doing this now,i can guarentee you,will take a huge load off,really.good luck to you and i hope the kidneys hang in there for at least a few years yet.you just never know with these kinds of medical issues how things will go, unfortunetly.please keep us posted,K? marcia

Thank you Corah and Feelbad for your replies. I shall certainly bring up the subject of transplantation and dialysis at my next consultation but i would never in a million years ask anyone in my family to donate! yikes...... :eek: I get the impression, as Corah has stated, that until numbers are at a certain level the subject is not mentioned? Maybe its just me he doesnt mention it to as i normally want to end the consultation as soon as possible. Im one of those people, i spose, who refuse to believe this is happening. I had ovarian cancer in 2003, luckily caught reasonably early, couldnt have chemo for obvious reasons - had a major op - recovered quickly and just went on my merry way. Thats the way i deal with it i spose! Three years later im starting to think hell which disease is going to raise its ugly head first! Oh well.
Take care all

Definitely a good time to start contemplating transplant. My transplant center gave me a suggestion that makes it a bit easier to ask. Have another family member or very good friend spread the word. That way potential donors don't have to face you directly and say no. It is worse when they string you along because they can't face you. Have a comfortable phrase handy that your third party can offer to the person being asked to help them save face. It's a lot easier to deal with people when there is a buffer like that. You may still be resentful that many might/will refuse to offer, but the situation will be less tense.

Good luck.

Cora