Hi All
Ever since I started dialysis I have had an absolute horror of having a fistula. This has continued despite all my efforts to be reasonable. When I started PD I thought that particular problem was at least out of the way. Then PD failed miserably and I had to go back to HD. Despite everyones best efforts I still couldn't face a fistula. I have been bullied, cajoled, persuaded, all to no avail. I have a real problem with this. Eventually even the renal conultant gave in and said ok - how about a graft. I eventually agreed and the vascular access nurse said she would speak to the surgeon before I went to see him so that there woud be no problems.
The appt. with the surgeon was this morning. He refused point blank to do a graft (and yes, I do know all the associated problems. I have done my homework and spoken to several renal professionals.) He was amazed and cross that doctors had said he would do one at all. He then said he had only ever done one graft and it was a complete disaster. He refused to do another. Needless to say I unfortunately got upset. In the end he agreed we would get a venogram done and take it from there. He could refer me to another surgeon for a second opinion if that was what I wanted after that.
I wasted his time and mine. What the hell was the point in sending me to a surgeon who was a) dead set against grafts and b) had only ever done one in his life?!! I am upset and angry.
Am I being unreasonable here? I'm beginning to think that maybe I am. The very thought of a fistula truly appalls me on self-image grounds alone. Ugly, painful, possible complete failure, possible steal syndrome etc etc. Not to mention the needles. Is it a case of pulling myself together and just dealing with it (which I have been trying to do for months) or do I go for the second opinion to a surgeon who is more likely to do what I want. Maybe I need counselling. I don't know. I really do have a problem with this. Can anyone offer any words of wisdom on this one??? I really need some help.
Sorry this is a bit of a ramble. I know that at least you guys will understand where I'm at. Thanks for listening.
Love to all,
Marion.
Vent - plus advice needed.
Moderator: administrator
Hi Marion
I don't think you being silly or anything like that. I myself am on PD and have too stressed about what i would do if i had to go on HD. I'm not too bothered about the needles etc but the though of having a fistula puts me off. I often worry that that i will have to go on HD and i remember having the neck line put in when i first began dialysis, the docs said at the time that this is very simple and would be done under a local, it was the most terrifying experience i have ever gone through and i still wake up some nights after reliving it in my sleep, and its nearly 3 years ago, so i would never want that doing again. Also when i choose PD the docs at the time said that was good as i may have problems with a fistula, small veins!! where does that leave me?
Just out of intrest what are the options for HD access??
I thinks you need as many opions as possible and they should at least give everything ago before dismissing it, it may work for you. Anyway don't know if i've helped much but keep us informed and i hope things start to go your way soon.
John
PS how are you getting HD now?
I don't think you being silly or anything like that. I myself am on PD and have too stressed about what i would do if i had to go on HD. I'm not too bothered about the needles etc but the though of having a fistula puts me off. I often worry that that i will have to go on HD and i remember having the neck line put in when i first began dialysis, the docs said at the time that this is very simple and would be done under a local, it was the most terrifying experience i have ever gone through and i still wake up some nights after reliving it in my sleep, and its nearly 3 years ago, so i would never want that doing again. Also when i choose PD the docs at the time said that was good as i may have problems with a fistula, small veins!! where does that leave me?
Just out of intrest what are the options for HD access??
I thinks you need as many opions as possible and they should at least give everything ago before dismissing it, it may work for you. Anyway don't know if i've helped much but keep us informed and i hope things start to go your way soon.
John
PS how are you getting HD now?
You have my utmost sympathy. I too have an absolute horror of having to use HD and hope PD is suitable for me.
On the other hand, thousands of people have HD every day through different kinds of access and they seem to manage it okay.
I think we're probably both afraid of something that is not as bad as we think it might be.
On the other hand, thousands of people have HD every day through different kinds of access and they seem to manage it okay.
I think we're probably both afraid of something that is not as bad as we think it might be.
Dont let a little thing like kidney disease hold you back
Tranplant November 24th 2012. Thank you so much, donor family.
Tranplant November 24th 2012. Thank you so much, donor family.
Marion, I too did not want to have HD and as my PD appeared to be no longer sufficient (and I was on top dose) I was persuaded that HD was necessary. The thought of a fistula was ghastly - however I gritted my teeth and had one done - it was on my wrist, was quite neat and, for the day or two it actually worked not bad at all. Unfortunately I have severe problems with clotting and it clotted so another was tried (this time in the crook of my elbow) with the same result. However I was really very pleasantly surprised at the fact that the buzz was not as freaky as I imagined. Anyway after two failed fistula's they said they would not try again - but that at St Mary's they had done a long term study on a tessio line (neck line) and found great results and that is what I would have if I had to finally go onto HD. Luckily for me I am still fine on PD.
Anyway I was not trying to put you off a fistula, but say that, even though I was very unlucky it was not as bad as I feared and I took the view that good dialysis would give me a quality of life that would outweigh the potential downside of the look of a fistula.
But why don't you do a bit of research on tessio-caths and see if that is an option ?
Good Luck
Anyway I was not trying to put you off a fistula, but say that, even though I was very unlucky it was not as bad as I feared and I took the view that good dialysis would give me a quality of life that would outweigh the potential downside of the look of a fistula.
But why don't you do a bit of research on tessio-caths and see if that is an option ?
Good Luck
Hi,
Have you considered lifesite or something similar to that? http://www.vasca.com/products/prod_101a.asp
Mike
Have you considered lifesite or something similar to that? http://www.vasca.com/products/prod_101a.asp
Mike
Numero Uno
Head Honcho
Top dog
Head Honcho
Top dog
I'm not on dialysis, yet!
However, I did have fistula surgery twice....they just could not get it to work! I will have a graft if I do HD.
Surgery was no problem for me...just couldn't strecth my arm for 4 mo..
Today, it's like I never had anything done to the arm.
When en doctor says he does not do grafts....I would not trust him with
ANY access surgery!! Good luck from Jane
However, I did have fistula surgery twice....they just could not get it to work! I will have a graft if I do HD.
Surgery was no problem for me...just couldn't strecth my arm for 4 mo..
Today, it's like I never had anything done to the arm.
When en doctor says he does not do grafts....I would not trust him with
ANY access surgery!! Good luck from Jane
-
bigbuzzard
- Posts: 1481
- Joined: Sun Mar 12, 2006 11:21 am
- Location: Devon, UK
- Contact:
That looks really cool - though I suspect expensive. Is there anyone here using one of these?Mike wrote:Hi,
Have you considered lifesite or something similar to that? http://www.vasca.com/products/prod_101a.asp
Mike
-
JMan
- Posts: 3473
- Joined: Fri Apr 23, 2004 10:21 am
- Location: Lives in a slightly weird bit of Shropshire called Telford!
Mike, I think you'll find that the lifesite product was scrapped some time ago. Although I could be wrong.
I plug for fistula's because I've been frigging lucky with mine. I've had it for nearly 20 years & it's not very ugly. (I haven't been on haemo all that time, btw, it's just been backup between transplants)
I started needling myself when I got fed up with the nurses.
It's barely noticeable & looks like I've had 2 blood tests taken in an arm, if that. I have seen some rather ugly looking ones, unfortunatly. It's something you REALLY need to discuss with you
No one can force you to have a fistula done, but at the end of the day you need to dialyse.
There are some things you can do to make sure a fistula lasts IF you get one.
Technically, you have the following options.
A line, high risk of infection, & you won't be able to take a bath
Can lead to poor dialysis. Risk of clotting etc.
B a gortex implant (I think that's a 'graft') which is basically a small piece of gortex tube implanted & connected to a vein & artery. Risk of clotting
C: A fistula, once matured & working, gives good dialysis. 18 months is about the right time for a fistula to mature. 6 months is early days.
A good fistula that lasts, is like a successful transplant. An investment for life!
I should of course mention PD,as D
And a successful transplant as E
Also
Try a search of this site, or http://www.kidney.org.uk/cgi-bin/kidney ... discus.cgi for the word fistula.
I'll tell you a little true and very recent anecdote.
A friend of mine, the same age as me, learned to needle her fistula herself for the first time.
The day after she had a transplant
I plug for fistula's because I've been frigging lucky with mine. I've had it for nearly 20 years & it's not very ugly. (I haven't been on haemo all that time, btw, it's just been backup between transplants)
I started needling myself when I got fed up with the nurses.
It's barely noticeable & looks like I've had 2 blood tests taken in an arm, if that. I have seen some rather ugly looking ones, unfortunatly. It's something you REALLY need to discuss with you
No one can force you to have a fistula done, but at the end of the day you need to dialyse.
There are some things you can do to make sure a fistula lasts IF you get one.
Technically, you have the following options.
A line, high risk of infection, & you won't be able to take a bath
Can lead to poor dialysis. Risk of clotting etc.
B a gortex implant (I think that's a 'graft') which is basically a small piece of gortex tube implanted & connected to a vein & artery. Risk of clotting
C: A fistula, once matured & working, gives good dialysis. 18 months is about the right time for a fistula to mature. 6 months is early days.
A good fistula that lasts, is like a successful transplant. An investment for life!
I should of course mention PD,as D
And a successful transplant as E
Also
Try a search of this site, or http://www.kidney.org.uk/cgi-bin/kidney ... discus.cgi for the word fistula.
I'll tell you a little true and very recent anecdote.
A friend of mine, the same age as me, learned to needle her fistula herself for the first time.
The day after she had a transplant
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
re fistual
Hi, My name is Jake just been on dialysis a short time. Had a fistual put in the crook of my elbow. Right now i have a perm cath in my neck for dialysis. My fistual looks real good, might be able to start using in next month. Getting along pretty good, Whatever the way u want to, i wish u the best
Thankyou all, for taking the time to listen and reply. This morning I am feeling just a little better about it all. The HD nurses last night were wonderful and I left there not only dialysed to the eyeballs but with a plan. This morning first thing I rang our lovely renal counsellor (I have refused her help before now) for some help in dealing with all this. I willl also ask for a referral to another surgeon (thanks dkJane!) after the venogram.
John, I've been dialysing using a neck line (permcath) for 8 months apart from the all-too-brief foray into PD. I'm now on my third one.
The main options for access are neckline, fistula (gold standard) and graft. There are a couple of others like the Tessio line and life site but they are very much in the minority. The fistula is the best one to have.
Mke, I asked about the Lifesite system a few weeks back and no-one over here does that, which is a shame cos I think it looks a briliant system.
JMan, I appreciate the pro's and cons rundown you gave me but I have well researched all the options, including speaking with people using each one plus renal professionals. I seem to have a psychological problem - my reasonable, sane self KNOWS I should have a fistula. The rest of me screams NO! It's irrational. Even with a graft my mind just stops at the point at which the graft is put in. I don't even get that far when thinking about a fistula. But I loved the story about your friend!
MandyV, it's just your experience that I'm terrified of. Yes, I know it's pathetic . As I said earlier this fear is irrational. I checked out the Tessio-line and it would apparently have the same effect as a neck line though possibly a little better but more unsightly than my present neckline.
So I go for counselling tomorrow morning and we'll see what comes out of that.
Thankyou so much all of you. You've really helped me.
Lots of love,
Marion.
John, I've been dialysing using a neck line (permcath) for 8 months apart from the all-too-brief foray into PD. I'm now on my third one.
The main options for access are neckline, fistula (gold standard) and graft. There are a couple of others like the Tessio line and life site but they are very much in the minority. The fistula is the best one to have.Mke, I asked about the Lifesite system a few weeks back and no-one over here does that, which is a shame cos I think it looks a briliant system.
JMan, I appreciate the pro's and cons rundown you gave me but I have well researched all the options, including speaking with people using each one plus renal professionals. I seem to have a psychological problem - my reasonable, sane self KNOWS I should have a fistula. The rest of me screams NO! It's irrational. Even with a graft my mind just stops at the point at which the graft is put in. I don't even get that far when thinking about a fistula. But I loved the story about your friend!
MandyV, it's just your experience that I'm terrified of. Yes, I know it's pathetic . As I said earlier this fear is irrational. I checked out the Tessio-line and it would apparently have the same effect as a neck line though possibly a little better but more unsightly than my present neckline.
So I go for counselling tomorrow morning and we'll see what comes out of that.
Thankyou so much all of you. You've really helped me.
Lots of love,
Marion.
Hi Jim,
I had a feeling it may have been but I think they may have replaced it with another similar type of device? I'll have a look around and see what I can find.
Mike
Edit:
This is what I was thinking of https://www.fhshealth.org/DI_proced/permacath.html a permacath, My girlfriend has one for IVs etc and I thought they could be used for hemodialysis access to which according to that site they are.
They are not visible and you can just feel them just under the skin but I suspect it is doubtful they will allow you to have this for hemodialysis but may be worth investigating.
Mike
I had a feeling it may have been but I think they may have replaced it with another similar type of device? I'll have a look around and see what I can find.
Mike
Edit:
This is what I was thinking of https://www.fhshealth.org/DI_proced/permacath.html a permacath, My girlfriend has one for IVs etc and I thought they could be used for hemodialysis access to which according to that site they are.
They are not visible and you can just feel them just under the skin but I suspect it is doubtful they will allow you to have this for hemodialysis but may be worth investigating.
Mike
Numero Uno
Head Honcho
Top dog
Head Honcho
Top dog
Hi Mike,
A Permacath is what I've been using (aka neckline) but they are not generally used for long term dialysis because of the risk of infection. I'm coming up for a year of use of mine (I miscalculated earlier because of the PD attempt) and they are anxious that I don't use it for too much longer. My present permacath is very visible as the tunnel lies very proud under the skin and as it is my third one there is now a fair bit of scarring.
But thanks anyway.
Marion.
A Permacath is what I've been using (aka neckline) but they are not generally used for long term dialysis because of the risk of infection. I'm coming up for a year of use of mine (I miscalculated earlier because of the PD attempt) and they are anxious that I don't use it for too much longer. My present permacath is very visible as the tunnel lies very proud under the skin and as it is my third one there is now a fair bit of scarring.
But thanks anyway.
Marion.
Hi
was reading your concerns about having a fistula done and thot i would tell you my expierance. I have been on dialysis for over 20 years now and have had 4 fistulas done They all seemed to stop working when i got a transplant, which is common, any way after the last transplant failed i had a permcath (Neckline) no vains left fo access Tpo be honest its more a boob line due to its positioning (hope thats not put you off even more) any way my point is my fistulas were hardly noticable and others with in my dialysis unit theresd did not seem that bad either alltho there was thodse that i did wince at. My unit encouraged you to learn to put your own neeedles in two days after starting to use. Most of the paitents that were able to did so. That was over 20 years ago when i started. Once i had learned to do it i found i was very reluctant to let anyone else try lol. I have recently had another transplant in january and so far so good few niggles along they way but nothing too bad. the perm cath i was using i have had in for around 5 years it has had the line changed over ( due to bad blood flow) but not a new one inserted.
I do understand your phobia of fistu;as i was a bit the same but in the end it worked out and they do say its the best option to take. Good luke with the coucelling and i look forward to hear on the forum you have overcome your fear and are now the proud owner of a (not so noticable) new fistula
take care
freckel
was reading your concerns about having a fistula done and thot i would tell you my expierance. I have been on dialysis for over 20 years now and have had 4 fistulas done They all seemed to stop working when i got a transplant, which is common, any way after the last transplant failed i had a permcath (Neckline) no vains left fo access Tpo be honest its more a boob line due to its positioning (hope thats not put you off even more) any way my point is my fistulas were hardly noticable and others with in my dialysis unit theresd did not seem that bad either alltho there was thodse that i did wince at. My unit encouraged you to learn to put your own neeedles in two days after starting to use. Most of the paitents that were able to did so. That was over 20 years ago when i started. Once i had learned to do it i found i was very reluctant to let anyone else try lol. I have recently had another transplant in january and so far so good few niggles along they way but nothing too bad. the perm cath i was using i have had in for around 5 years it has had the line changed over ( due to bad blood flow) but not a new one inserted.
I do understand your phobia of fistu;as i was a bit the same but in the end it worked out and they do say its the best option to take. Good luke with the coucelling and i look forward to hear on the forum you have overcome your fear and are now the proud owner of a (not so noticable) new fistula
take care
freckel