Haemogoblin's dilemma. The permacathgate scandal.

[haemogoblin]

Hi Dialysis fans,

Those of you who have read my introduction will know that I am an embittered young man whose first transplant (from his mum), failed miserably after 36 hours.  But, not to dwell on the nasty stuff and to share my misery (to dwell would not be at all British would it?), I need to get advice about where to go from here.

As I see it, I have 3 basic options; one of which I have ruled out- I will explain:

1. Haemodialysis using a fistula (which I don't presently have).  This is out of the question for me.  I'm a drummer.  Plus the fact, well, I don't want one.

2. CAPD, leading hopefully to the overnight PD machine, with a Tenkhoff which again, I don't presently have but would consider.

3. I don't know whether this is an option, but: Haemodialysis, either at the hospital or at home (they have offered me a machine!) using the permacath that  I already have in my chest/neck.
I've had it in there for 4 months.

I guess my question is:

Is there anyone out there on haemodialysis who does NOT have a fistula in their arm and is instead using their permacath line? If so, what's the longest anyone's had one in there without it getting all maingy?  Because the way my local hospital goes on at me to have the line removed in favour of the fistula, it feels like they think my permacath line will at any moment explode and render me headless.  "It's dangerous to have it in there too long- the risk of infection is, too great!!!" (da da daaaaa....)

Let me know your stories.
Love to all you little dialomonsters.
Haemogoblin

[monrein]

Well, potentially maingy one, let me start by declaring that I have no experience with peritoneal at all and never felt that I wanted it.  I personally don't like the catheter idea.    I do know that many people love it and it works well for them and I also know that for some, the clearances are inadequate and they've had to switch to hemo.


I've had permacaths, the last one for about 4 months and let me declare my bias immediately.  I despise the !@#@$%^ things.  The covering itches, I don't like baths, they lead right into the heart which is scary to me, and did I mention that I hate them.  I had a fistula for 5 years last time I did hemo (1980-1985) and did my own sticking as I am now doing again with my second fistula in my upper arm.  My doctors also say that they aren't great long term. 

However, having given my personal thoughts, there is an IHD member (Stauffenberg) who had one (well likely more than one but no fistula) for some eight years.  He is a big proponent of them so you ought to research permacaths on IHD.

You'll hear from others on this, I feel sure, and if I find anything on the topic I'll post it for you.

[Romona]

I have no experience! But I like that you are keeping your sense of humor!
I guess if your headless,you don't want a hat for Christmas.

[flip]

I guess I don't understand why a fistula would keep you from playing the drums. I guess you could have an access placed in your thigh. The lady on you tube who does dialysis in the woods has her's there.

[jbeany]

Permacath means no showers, no swimming, and the constant tubing in your neck.  But then, you have one, so you already know the limits there.  Yes, the risk of infection is higher.  You may get better clearances with a fistula as well.  I'm dealing with a graft, and trying to make it last as long as possible because I don't want to give up my long hot showers. (Everyone has a vice!)  I can see, as a drummer why you might be leery of getting the fistula in your arm - they nerve damaged my left wrist with my first surgery, and it took almost two years to get back to normal.  Because of the damage, I've refused to let them use my right arm for the next one.  I just keep picturing how I'm going to get anything done with similar damage to my dominate arm.  Just thinking about it was driving me crazy, and I finally just outright refused to consider it.  The docs were not happy with me, but I'm well aware that I'm the one in charge!  The best advice I can give you is listen to your own voice.  The docs will try to convince you, but don't do anything you aren't comfortable with.  You can always change your mind if you start having problems with the permacath.

[Mr.N]

Hi Haemogoblin, I understand your dilemma and I went through a similar scenario...From what my doctors said, permacaths are not meant for extended periods of dialysis, usually only from 6-9 months, because of the high risk of infections and related difficulties. They can only move a certain amount of blood per minute, and there are other risks since it feeds directly into the heart.  I had a CAPD catheter implanted, and after everything healed and the first day I started training, I  found out I had an inguinal hernia; the effects are dialysis solutions leaking into your scrotal sac and intense pain (it looks very impressive, but hurts like hell).  I was told it's very common in men (we tend to lift heavy things to impress others and not care about the effects), so you may have another surgery to fix the hernia, and you may not be able to lift anything over 20 lbs afterwards. After I had the hernia fixed, and started training again, I developed another "leak", so I decided to get the CAPD catheter removed and get a fistula instead. The fistula moves a lot more blood than the permacath can, so you'll get more efficient dialysis. As it strenghtens, you can move up to bigger needles, which can lower your dialysis time.  From what I've been told, you can still be pretty active with the fistula, but only need to watch heavy lifting with the fistula arm, and basically protect it from harm (good reason to wear a gauntlet) since that arm is your lifeline. I hope my experiences can give you some insight into what may await you. Good luck and best of luck.......

[kellyt]

I have an AV fistula, however, I'm still pre-dialysis with a living donor transplant scheduled for Nov.  Other than the nasty scar I really forget that I have the fistula.  I'm right handed and my fistula is in my left arm, so I don't have the strength in that arm for any heavy lifting anyway.  The heaviest things I carry are grocery bags!  ha ha

I wouldn't think that drumming would be a problem, but maybe someone who has more experience with using their fistula can give you better information.   Good luck!