I just wanted to make mention of this

[pigsty1953]

Hi, everyone,

Thanks again to Rerun for your concern, I appreciate it.

I have a new development in my catheter, fistulal saga.  My fistula in my left wrist did not develop for a variety of reasons.   I went to my surgeon this morning and we talked about a graft.  I might add he is a real mench.  The graft would involve two incisions in my left arm, something I am not looking forward to, plus the worst thing is the inability to use my left arm for two weeks.

That is, I believe the reason my fistula did not develop.  I cannot go two weeks without using my left arm, no way, not possible.  So we talked and I decided the best thing for right now is a new catheter.  My current one, a Tessio is doing alright, but the flows are not great, and it is not going to get any better.  So Jan 8, 2007, he will install a new and better one on the right side of  my chest.

This is fine by me, and the new one should last at least several months, maybe longer, and in the ensuing time I can further decide on what I am going to do.

Further, I want to comment on the dialysis units and the staffing.  As I told Rerun, one of the reasons I don't post a lot is because all of you have quite a bit more experience with all of this then I do.  But I do read a lot of your posts, and I enjoy them, and the experience you all have is truly remarkable.

One of the things I consider is the absolute exquisiteness and great effort put in by the staff at the Gulf Coast Dialysis unit in New Port Richey, FL.  They are the absolute best.  The reason for this I believe is that it is a relatively small unit.  That, I believe makes a lot of difference.

Anyhow, I hope you all enjoy reading this as much as I enjoy reading your posts.  Thank you for being here and all of your concern.
Overall I am doing fine.  Please feel free to email me at any time:   pigsty1953@yahoo.com


Take care, Randy in Clearwater, FL

[jbeany]

Randy. .

Why a graft and not a fistula somewhere else?  Just curious. 

And if you don't like/trust your surgeon, is there another one you can go to?  All of this is hard enough without having someone you can't stand in charge of slicing you open.  I know it's not always an option, but . . . .

  As I told Rerun, one of the reasons I don't post a lot is because all of you have quite a bit more experience with all of this then I do.  But I do read a lot of your posts, and I enjoy them, and the experience you all have is truly remarkable.

Post anyhow! Tell us about what you do know -  every bit of input helps, I think. 

[pigsty1953]

Hi,
The way I understand it, a fistula or a graft,
has to be placed somewhere  on my left arm due to the location and size of my blood vessels.  Also
from what I understand,  no
matter what I undergo, it is going to require a two week period of not using my arm to let it heal.  That is not going to be possible, so my thinking at this time is not to undergo surgery that in all likelyhood will not work.  IOW the enemy I know is better then the enemy I don't know.  I know about catheters.  I have had them now for 7 or 8 months, and that is the reason I made up my mind in this fashion.

I am sorry you might have misunderstood my use of the word mench in describing my surgeon.  It is an extremely complimentary description of a first class person.  I very much like my surgeoin and trust him totally.  As I said, he is in agreement with what I want, and also as I said, going with a new catheter will give me time to decide what to do in the future.

Thanks for your input.  I appreciate everyone's thoughts.

[jbeany]

hmmmm. . . what word was I thinking of then? - there's a similar one that means someone you don't like. . .. anyhow.

I just know that most docs push fistulas as the best option in the long run - although a few of the posters on here have said they prefer the caths because they don't have to mess with the needles. 

I don't remember being told not to use the arm at all for two weeks.  I remember not being able to shower without copious amounts of saran wrap and tape, and being told not to lift anything over 10 pounds, but other than that, I just was sore with my last graft.  (The first fistula surgery I had damaged a nerve, so I didn't want to move my arm, even though I wasn't restricted by the docs from doing so.)  I was back sewing within a few days.  But maybe you have heavier things you have to lift?

[Rerun]

I could live with a catheter forever if they would allow it.  But, I got mine removed yesterday.  He must have had a hard time because it is sore. 

You do what you need to.  Give it some thought these next few months.
     

[pigsty1953]

I know I am not supposed to say it, but that is the way I feel about my cath.  I have had absolutely no problems with it, and I would be happy to go on with it forever and ever.  I know eventually I will have to get a graft, but my motto has always been...put it off as long as you can

I was going to add, there seem to be some people in my unit that have problems with fistulas/grafts that I don't have with my cath.  Plus not having to deal with needles.

BTW, from what I understood about not using my left arm for two weeks, was to provide time for it to heal.  I was told not to do anything with it beyond maybe very light use.  I am not able to do that, and I am not so sure I will be able to in the future.  I am not going to sit in a chair for two weeks and not do anything.  I live alone, and I have to be able to at least lift and move some weight.
Plus I have to be able to drive.  I have a van, and it would be near impossible for me to get in it w/out using my left arm.

Thanks again for all your input.


Take care, Randy in Clearwater, FL

[angieskidney]

Randy,
It sounds like you should have asked your surgeon for specifics on what you can or can't do. Driving is something I think you CAN do as didn't he say light activity? I don't know anyone who thinks of driving as a heavy activity.


But I too would have LOVED to leave my permcath in as it was in for a little over a year and NO problems what so ever. But they pushed, First fistula failed after 10 days, 2nd one done months later worked. But I am developing scar tissue and they still haven't started Buttonhole yet. At least my fistula doesn't "blow" anymore.

[pigsty1953]

Hi Angie,
From what I understand, it was not the driving, it was what I had to do to get into my van.  I am a  big guy, and it takes quite a bit of effort for me to get inside of it.  I was forthright with my surgeon about what I would have to do, but he wanted to try a fistula
anyhow.  So I went along.  I was no where as optimistic as he was, and as I said, it never developed.

Also, as I said, I live alone, and there is no way I can only use my left arm lightly for two weeks.

But I too would have LOVED to leave my permcath in as it was in for a little over a year and NO problems what so ever. But they pushed, First fistula failed after 10 days, 2nd one done months later worked. But I am developing scar tissue and they still haven't started Buttonhole yet. At least my fistula doesn't "blow" anymore.

Like I said, I have noticed that a lot of people at the unit I go to have problems with grafts/fistulas.  That was one of the things, the nurses were pushing for me to have something done.  Given what I have to do in the course of everyday living, I was not optimistic.
I am happy with what was decided today between myself and the surgeon, and hopfully it will be for the best.

Thanks for all of your concern and input.  I will take it one day at a time.


Take care, Randy in Clearwater, FL

[Fighter]

Hi Randy,

I'm not much more experienced than you are at dialysis (closing on two years...), but in my short experience a fistula is superior to a catheter in all aspects. Not only are you dialysed better but you are free from any tubes sticking out of your body (mine was in my neck and the two months I had it were hellish). I can't comment on grafts because I've never had one, but I would not look forward to wearing a catheter 'for ever and ever'.

As for not being able to do anything with your left arm, I suppose if it's such a handicap it's because you're left-handed? Can't you ask a relative or a friend to come over and give you a hand for a couple of weeks, maybe take a few days off from work so you don't have to drive? I remember when I had the fistula operation on my left arm, I was also told not to use it for a while, but I don't remember it being much of a handicap (granted, I am right-handed and don't live alone).

BTW I've never heard of the word 'mench'. Do you possibly mean 'mensch'?

[pigsty1953]

Hi Randy,

I'm not much more experienced than you are at dialysis (closing on two years...), but in my short experience a fistula is superior to a catheter in all aspects. Not only are you dialysed better but you are free from any tubes sticking out of your body (mine was in my neck and the two months I had it were hellish). I can't comment on grafts because I've never had one, but I would not look forward to wearing a catheter 'for ever and ever'.

Naah, mine is in my chest.  It is threaded up into the arteries in my neck.  It bothered me a lot at first, but I got used to it.  Everything you say is exactly what the people at the unit say.  But for a variety of reasons, I am going to hang on as long as I can.
The thing they worry about most is infection, and since it is right over my heart, that could be a problem.   But so far, for severalmonths, I have had no problems, so again, I am going to hang on for several more months.

As for not being able to do anything with your left arm, I suppose if it's such a handicap it's because you're left-handed? Can't you ask a relative or a friend to come over and give you a hand for a couple of weeks, maybe take a few days off from work so you don't have to drive? I remember when I had the fistula operation on my left arm, I was also told not to use it for a while, but I don't remember it being much of a handicap (granted, I am right-handed and don't live alone).

As you are, I am right handed, but for a variety of reasons I am not able to go any time with out using my left arm.  It is not a qustion of getting help around the house.  It is more a question of getting in and out of my van.  I am a right leg/below knee amputee, and there is no way I could get into my van without pulling myself in w/my left arm.  And there is no way I am going any length of time with out driving or asking someone else for rides or to drive.

I wnet though that for several months after my amputation, and I am not going through it again.

BTW I've never heard of the word 'mench'. Do you possibly mean 'mensch'?
Sorry about the misspelling, but I was in a huury, and you know what you get when you are in a hurry.

Thanks for your thoughts.  I appreciate them.


Take care, Randy in Clearwater, FL

[angela515]

Since you mention that you understand eventually you might need a graft or fistula access, how will you ever do it if you can't do it now? Just curious... like, do you plan on scheduling for a time you have 2 weeks to do nothing.. or have some help, or somone to drive you? Good luck with keeping your cath as long as possible.

[pigsty1953]

Since you mention that you understand eventually you might need a graft or fistula access, how will you ever do it if you can't do it now? Just curious... like, do you plan on scheduling for a time you have 2 weeks to do nothing.. or have some help, or somone to drive you? Good luck with keeping your cath as long as possible.

Hi, Angela,

Like I said earlier, I put off everything as long as possible.  So I figure if I have another cath put in in Jan. 07, that will give an additional 6-7 months to figure how I am going to handle it.  The surgeon said he operated on a lady that had a working cath for 7 YEARS.
He said the cath he will put in in Jan is much better then the one I currently have and should last longer.

As I said, I like what I have now.  He also said he woukl put the new cath in on the right side of my chest, so that should be further away from my heart.  And also as I said, I would prefer not to get stuck every couple of days.


Take care, Randy in Clearwater, FL

[meadowlandsnj]

The thing they worry about most is infection, and since it is right over my heart, that could be a problem.   But so far, for severalmonths, I have had no problems, so again, I am going to hang on for several more months.

I mentioned this another time but just in case you haven't seen it....
my nephrologist told me to rub a little bit of antibiotic ointment with a Q-Tip in my nose before dialysis.  I have a catheter also and since I've been doing this I haven't had any infection problems.  I was told some people, not all, have staph germs in the nose which is easily transmitted to a catheter tip.  I was tested for it and I have staph germs in my nose. 
I was using Bactracin but any antibiotic ointment will do.  You can buy them anywhere, I've seen it in my local Shop Rite and Rite Aid.

Donna

[Rerun]

WOW I had not heard that.  I'll remember that one.  Thanks!

[pigsty1953]

I mentioned this another time but just in case you haven't seen it....
my nephrologist told me to rub a little bit of antibiotic ointment with a Q-Tip in my nose before dialysis. I have a catheter also and since I've been doing this I haven't had any infection problems. I was told some people, not all, have staph germs in the nose which is easily transmitted to a catheter tip. I was tested for it and I have staph germs in my nose.
I was using Bactracin but any antibiotic ointment will do. You can buy them anywhere, I've seen it in my local Shop Rite and Rite Aid.

Donna

Thank you so very much for that idea
I am going to mention it to my dialysis people Tues.


Take care, Randy in Clearwater, FL

Fixed quote - Bajanne/Moderator

[mallory]

Randy, Please keep posting, don't say you don't post because people here have more experience.  I haven't even started dialysis yet, I'm going to training this week.  I have no experience, but it's through posting here and asking questions that I've been able to learn about what dialysis is.

You never know when you might ask a questions that someone else has also been thinking about, and the more information you have, the more power you have.

Keep posting, we miss you!

[JerseyGirl]

Also Randy I see your point - you need your upper extremities to get yourself around.  You have a unique sitution.  Great idea about the bactroban for your nose, too!  Many people are staph carriers in their nares and don't know it. 

[Treasure]

Interesting about the antibiotic in the nose...hadn't thought of that...but then, when i had catheter, we were all wearing masks during put ons and offs and other times when there might be exposure. not practical for all the time...and swabbing the nose is a great idea.

with small exception, i loved my catheter. i kept it for...about 15 months? no problems until it started failing a week before my transplant...so if it could have hung on for just a bit longer...but i guess it was tired. REAL tired...becuase it exited my body while i was in prep to take it out...hehehe...just fell right off. hmmm...myabe the doctor shouldn't have charged full price for removal since the catheter saved him part of the job. hehehe.

hooking up the nxstage with a catheter was pretty easy. but now that i'm going to be retraining with a fistula, i'm a bit bummed, cuz of the needles and such i will have to do on my own. yowzas!

oh...also about catheter love...with the catheter, i could use the exercycle at dialysis...for my 2 hour rides...i can't wrinkle my nose without the needles going off now that i use my fistula.

if you want to know my dislikes of the catheter...read the tattoo thread. hehehe...

 

michelle  ~  treasure