Dialysis now or later?

[cariad]

I hope everyone can stand one more "should I start dialysis or not" discussion, because you're reading one now!

My last creatinine was 3.8, which I believe translates to 15 GFR. I am due for another draw. My nephrologist is indifferent, and told me in July to call him after I got the transplant (which, in his defense, we all thought was going to be in September). I have been unsuccessful finding a decent nephrologist in this town, and have been to six over the years in this one city.

So, I am trying to make decisions with just my GP, who is wonderful. The transplant hospital is saying they should be good to start any day now, but realistically, we will be looking at January for the actual transplant since we need four to six weeks to prepare for the procedure.

I have been having some symptoms, but don't know if they are kidney related or not. My concentration is bad, bad, bad - that I assume is related. I get occasional itching, usually concentrated in one area, usually right before I fall asleep. When I wake up, the itching is gone. Could this be a phos issue? I have also started getting a prickly feeling in my feet at night. Again, when I wake up, it's gone. Could it be neuropathy?

Because of the procedure I am undergoing, I will need dialysis regardless. My plan had been to get the permacath and do the week of dialysis that I need through that. Since I have two little kids, strict cleanliness around here is just a pipe dream. Therefore, I would worry about trying to make a permacath work for longer than the one week timeframe. A fistula is not an option according to my vein mapping reults. I guess that leaves a graft. The surgeon has called the pre-transplant dialysis "aggressive" Is there a possibility that the graft won't be able to handle whatever that means? Assuming I actually will get this transplant in January, is it even worth it to try to get on dialysis early, since I am sitting here with no access, no appointment, and essentially no nephrologist?

I welcome anyone's thoughts.

[okarol]

Just a couple of comments, I don't have many answers...

Jenna used her permacath for 6 months as her fistula matured. We had kids and cats and a bird and she was fine - no problems with infections. She couldn't shower so she would bathe and we would wash her hair in the sink.

Why would it take 4 - 6 weeks to prepare for the transplant? Do you mean arranging child care or something? We learned Jenna had a match in Nov. but it was recommended to not go in the hospital over Dec. or Christmas as there was a greater chance that staff would not be as available in the event of any complications.

Your symptoms sound like kidney stuff to me. Good luck whatever you decide! 

[cariad]

Jenna used her permacath for 6 months as her fistula matured. We had kids and cats and a bird and she was fine - no problems with infections. She couldn't shower so she would bathe and we would wash her hair in the sink.

Thanks, Karol, this is really good to know.

We need 4-6 weeks because we are doing a clinical trial, and the time is required for their protocol. The Christmas holiday also presents an issue because of childcare - we want the kids in school full-time while we are trying to recuperate.

 

[willowtreewren]

Awww. Cariad! I told you I was worried about you! Now I know why!!!

Symptoms definitely sound related to kidney failure. Can't help you with the memory, but try drastically reducing the potassium and phosphorus.

I'm with Okarol. The permacath sounds like the most logical way to go. Look through the other threads to get ideas for good ways to keep it covered and aseptic. You can do it.

Of course, that is dependent on whether you decide to start D sooner rather than later. And with no neph in your corner, that will be hard.

You said that the dialysis would be aggressive before the transplant. Would starting dialysis soner ease that stress? That may be a question for your TX team. I'm not clear on all the special procedures you have to go through for this tx, but that might be a consideration.

You know I am thinking of you. 

I hope you can get all the info you need to make an educated choice.

Aleta

[cariad]

You said that the dialysis would be aggressive before the transplant. Would starting dialysis soner ease that stress? That may be a question for your TX team. I'm not clear on all the special procedures you have to go through for this tx, but that might be a consideration.

That is a really good question, Aleta. I don't know, but will ask the surgeon next chance I get. I guess a large part of the problem is I do not understand what the aggressive dialysis accomplishes here. Guess I should find out!

I am considering going back to the nephrologist I had before the California years. He was the least horrible. His nurse did refuse to believe me when I told her that no, I was not using crack, and I'm still a bit insulted and bewildered over that whole exchange. The nephrologist is one of these insufferably condescending types, but I think I need to drop my standards dramatically on this one and just do what needs to be done. He at least actually gave me real time during the appointments, and not these glorified blood-pressure-taking sessions I get now.

Thanks for the ideas and concern. You are too sweet. No need to worry, though, promise!

  

[RightSide]

I hope everyone can stand one more "should I start dialysis or not" discussion, because you're reading one now!

My last creatinine was 3.8, which I believe translates to 15 GFR....

I have been having some symptoms, but don't know if they are kidney related or not. My concentration is bad, bad, bad - that I assume is related. I get occasional itching, usually concentrated in one area, usually right before I fall asleep. When I wake up, the itching is gone. Could this be a phos issue? I have also started getting a prickly feeling in my feet at night. Again, when I wake up, it's gone. Could it be neuropathy?

In September 2008, I had almost exactly the same symptoms and signs as you:  Creatinine 3.9, itching in one area (which soon spread to other areas), tingling (uremic neuropathy), inability to concentrate (that's uremia).

I elected to have dialysis, because I knew things would only get worse from that point if I didn't.  And I've never regretted my decision.

The hemodialysis catheter doesn't require you to have a spotless household.  I know because I'm a slob.   But I haven't had any infections with it in over a year.

It's kept covered with bandages.  What you must do is keep it dry--even if you're shampooing your hair.

[Jie]

Creatinine 3.8, GFR=15%, and two months before the transplant. You have some kidney failsure symptoms but seem not very serious. If I were you, I probably would not start any dialysis. Two months are not too far away. You should have a complete blood test to see all other measurements. If necessary, some medicines can be ordered by your doctor for releasing some symptoms. If you are worried, you can ask for monthly blood tests to monitor your conditions.

In the past, doctors preferred to have 4 to 6 months of dialysis before transplant. However, nowdays, doctors said it is the best option to have transplant before dialysis. I would do a complete lab test before deciding on anything.

[cariad]

The hemodialysis catheter doesn't require you to have a spotless household.  I know because I'm a slob.  

 

Thanks for the info, RightSide! I am relieved to hear that I do not need to magically turn into Martha Stewart, because it frankly is never going to happen.

Thanks for your thoughts, Jie. I am hopefully going to get a blood draw from my GP tomorrow. I will probably continue to take a wait-and-see approach with dialysis. You're right, my symptoms are mild, I just tend to panic when they are actually upon me, and then calm down when they subside.

I found out why the dialysis before the procedure, and unfortunately, it doesn't sound like it will help to start dialysis earlier.

Thanks again for all the responses.