Trying to plan for upcoming dialysis

[cariad]

I have to make a decision regarding dialysis, and I would very much appreciate input from the people who have lived it.

As I've mentioned, all going well with the tests, I will be receiving a kidney from my husband in September. This is right now an estimated time, since we want to be included in a clinical trial, and this hospital only performs one transplant per month for the trial.

I am trying to avoid getting both a fistula and a permacath. The transplant procedure requires about a week of what was described to me as "aggressive dialysis". The surgeon stated that if I had a fistula and it was strong enough, then they would not need to use a catheter for the dialysis. Of course, if I had a fistula and it was not adequate by September, they would have to add a catheter. And of course, if something happens to call off the transplant at the last minute, I will likely be in dire need of longterm dialysis at that point, and may not have time to let a fistula mature.

I had vein mapping done. Apparently my veins are pitiful and not dialysis-worthy, although there was some tentative mention that perhaps a fistula would work in my upper right arm. Unfortunately, 33 years ago when I had all of 3 weeks of dialysis, the hospital decided that I needed both a shunt and a fistula, so the shunt went in my right arm by the wrist, and the fistula went in the same spot on my left arm. I cannot do PD because of all the surgery on my abdomen. I am trying not to waste any more hemo access sites! And the fewer scars I acquire, the better (I have plenty already.)

Right now I am thinking I will skip the fistula and hold my breath until September, hope that the transplant will proceed and I will not need dialysis before that, and just get a catheter. Is this a good idea, or should I get the fistula now and hope that it is strong enough by September to withstand whatever the heck aggressive dialysis is?

If it helps, my last creatinine clearance (March) put my GFR at 13. That is what it has been estimated to be for about a year. My decline has been very slow, my GP described it as being similar to aging. I have not had any dramatic drops in function, although my nephrologist (more about him in a future, slightly ticked-off post) seems to really think I should get the fistula, asking me what I am going to do if I wake up tomorrow with a GFR of 6. (I have only seen this man twice, so he is not exactly an expert on my case.) I feel tired and stressed and frustrated most days, but I seem to be going through a good patch right now, not nauseous so much, and able to mildly exert myself. September is coming soon, so I think having that goal has improved my physical health.

Sorry to go on and on. If anyone has any thoughts, or reasons why waiting for a catheter would be a horrible mistake, please feel free to comment. Oh, and is the catheter scar bad? Thank you!

[Wenchie58]

Only you can make decisions for you and I can only comment on cath scarring.  I too have had multiple surgeries...and I am beyond worrying about scars....I tend to look at it as...oh hell, what's one more?  The area in my chest where the cath was placed is barely noticeable 7 months later.  I can "feel" scar tissue under the surface, but nothing is noticeable on the skin.  Now keep in mind that much of this depends on who puts it in, how they put it in, how bad you normally scar, skin tone and the like, but that's my experience.

[willowtreewren]

Cariad,
It sounds like the fistula route may not be a good option for you anyway.

I do want to comment on your GFR, though. My husband was very stable at about 15 for a long time and then dropped substantially in a couple of months. We really thought that we would have another year before having to start dialysis, so in some ways it took us by surprise.

I hope you get additional comments from others regarding their experiences.

Best wishes,
Aleta

[jbeany]

If you wake up tomorrow with a GFR of 6, then you get a cath and have dialysis.  Will it be annoying, and prevent you from having a shower?  Yes.  But they are possible to get quickly and they do work reasonably well.

If the transplant falls thru, then there's plenty of time to get a fistula.  But I'd be worried about getting a fistula for what may only be a week's worth of dialysis.  From what I've read on here, it's quite common for a fistula to clot off immediately after a transplant.  The newly working kidney raises the hemoglobin levels, which can lead to the fistula failure, I believe.  At some point, the transplant will likely fail (hopefully many years from now, but they don't last forever) and then you've used up yet another access point that you need for dialysis.

And if you are worried about scars, spend the 15 bucks on a tube of Mederma scar treatment.  It works quite well if you put it on the scar while it is fresh.

[Rerun]

Go with the catheter. 

I am interested in this "clinical trial".  If you have already posted about this I must have missed it.

PM me and tell me about it.

Thanks.   

[cherpep]

I agree.  If the dialysis is not going to be long-term, my choice would be a cathetar.  It takes a while for the fistula to mature, and it's easy to infiltrate when a fistula is fist being used.  In my experience, the scarring from the cathetar is much less than the scarring from the fistula. Good luck, let us know what you decide. 

[Slywalker]

I had a catheter and the scarring is so minimal (and everything is relative for sure).  I'd go for that, especially with veins that may not be up to the task - mine never were.

Decisions are so darn hard sometimes.

Good Luck

 

[RichardMEL]

My hand is up for a cath also (although a female friend of mine who had to have one when her fistula blocked was whinging endlessly about it.. I think she just likes wearing sexy low cut tops tho... heheeh). You may get through to September without needing dialysis at all, so attempting a fistula placement at this point may be wasteful - since they can take six+ weeks to mature anyway which almost takes you through to the end of August! If you need the cath it can be put in quickly and you may only need to use it for a short amount of time, if at all and I'm not sure *I* would want a fistula placement if it was used short term given that say your transplant lasts 10 years, he fistula may not - and as you say they've put in shunts and fistulas in the past causing problems for you. Go the catch and get ready to smell a bit!!!  Your chest will be fine afterwards... just ask Wenchie.. she has a fine chest !!!! 

 

[MandaMe1986]

It doesn't sound like you are going to need it for long so I agree I would go with the Cath.  The scaring sucks, I have had a few caths and ports put in my chest. A diffrent reason, but have had them in non the less in my chest.  I have a few scars now and I agree with Wenchie what is one more..haha.  The only thing with the cath is you will have to worry about infection more. 

[staceyand joe92]

I had a catheter put in two days before dialysis.  If I were in your situation I would hold out and see what happens. You can always have a catheter placed in a short period of time and it is easily removed.  The scar is not a big deal. Mine looks like little chicken feet.  I was at GFR 12-13 for about a year and dropped to under 10 out of the blue and required dialysis.  I had a severe kidney infection and was hospitalized. I think that was the last straw for my kidneys. They gave up after that.

[cariad]

Thank you everyone for all the priceless information and personal experiences. This helps so much more than the fearmongering from the nephrologist.

I am beyond worrying about scars....I tend to look at it as...oh hell, what's one more?

Wenchie, I've told my husband that "Oh, hell, what's one more?" will be my new motto for everything - surgeries, scars, glasses of wine.... 

a female friend of mine who had to have one when her fistula blocked was whinging endlessly about it.. I think she just likes wearing sexy low cut tops tho... heheeh

Richard, I, too, like wearing low-cut tops. But then again, I *love* whinging, so this sounds like a can't-lose situation. 

I will certainly give the Mederma a try. The scar sounds similar to the one I have on my neck from my original surgery. You can feel it slightly, but only doctors have mentioned it in all these years, so I would say it is not noticeable. My husband has said that if the scars really bother me that much, I can look into cosmetic surgery after the transplant. Somehow, I think that idea won't sound too appealing by then.

I really appreciate hearing about the specific pros and cons of a fistula vs. a cath, and what led each individual to start dialysis. This is information that I simply do not know, in fact, never knew. These options did not exist back then, and I was too young to understand them anyway.

So, a catheter it is. Thanks for the input, everyone.   

[dwcrawford]

I was worried about the appearance of a fistala... Some people here may remember how I carried on.  But mine is barely visible.  Of course it isn't mature and has never been used and may get uglier, but a short sleeve shirt will mostly cover it up.  I rarely go naked since I passed 68....

[RichardMEL]

Dan I hesitate to ask the question that surely MUST be asked - what will happen when you hit *69* !!!! 

On the fistula thing.. mine is quite large and stands out a bit. sometimes people stare (as I usually wear a polo shirt or t shirt and my lower arm is exposed). Not sure if they are looking at the needle marks and thinking "druggie" or just wondering what the big snakey thing is... Frankly I couldn't give a rats bottom about what someone else thinks of my fistula.... anyway you know what they say about men with large throbbing... fistulas... don't you???  (tried that line once on a nurse and she went right red.. it was priceless! Almost as good as the other time a cute med student was in and they stupidly introduced her to me and were explaining dialysis and got her to feel my fistula so I quipped 'oh I'm just so *thrilled* to see you')

you're right - I should stick to my day job !!!