Just wondering how many of you manage to get through your home dialysis with trouble free access and how many of you have needed repeated fixup jobs?
I seem to sail through for a few months then have trouble with one or other of my precious buttonholes and the wheels fall off and the stress levels go through the roof as i prod around trying to find another spot to access my vein, usually without success. I have a small vein which I can access in the lower part of my arm but any higher and it goes deep and I can’t find it! My surgeon has done a patch up job near my wrist due to calcification but I would love him to bring the rest of the vein closer to the surface (I only have small arms so its not like they have a big layer of fat getting in the road)
Am I being unreasonable in asking to make my vein more accessible? I believe above my venous buttonhole the vein bifircates so I have 2 running parallel going deeper and I can’t get either of the buggers!
This certainly isn’t an exact science and I don’t think surgeons have any idea how stressful it is when you are at home trying to get those cannulas in to stay alive!
I can relate to that, beachy. I’ve been using my graft for less then four months and I’ve already had to have two fistulagrams and a declot. It works for a while, then it starts narrowing. It finally clotted completely when I was visiting friends in another town. Nothing will ruin a weekend with friends like trying to get on the machine and having my access just die. Fortunately, I was able to have it declotted the next day after I got back home, and I just rescheduled the rest of my treatments, and ended up getting all six of my treatments for the week. I hope your access problems are resolved soon.
[quote=beachy;14675]Just wondering how many of you manage to get through your home dialysis with trouble free access and how many of you have needed repeated fixup jobs?
[COLOR=Black]Hi Beachy, I’ve had my fistula since 1984, was 14 years old at that time. Today, am now 37 and will be 38 soon. Throughout all those years my fistula has gone though probably 4 revisions and never has clotted. Believe it or not but I was told that my fistula was not useable for buttonholes, for the reason that its more of an anuerysm than a nice looking fistula. I have 2 sets of buttonholes and rotate between them. Its been trouble-free and always a successful needling…probably the only complaints I may have from it is that my arm is kinda stiff at the joints and maybe some of the “Steal Syndrome”…Overall, its been a success for me.
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I seem to sail through for a few months then have trouble with one or other of my precious buttonholes and the wheels fall off and the stress levels go through the roof as i prod around trying to find another spot to access my vein, usually without success. I have a small vein which I can access in the lower part of my arm but any higher and it goes deep and I can’t find it! My surgeon has done a patch up job near my wrist due to calcification but I would love him to bring the rest of the vein closer to the surface (I only have small arms so its not like they have a big layer of fat getting in the road)
Am I being unreasonable in asking to make my vein more accessible?
I would recommend that you use “Step Ladder” needling for awhile until your access expands more. That way you’ll have a nice trouble-free buttonhole needling later…I think that’s why mine has been a success…the long years in-center and using ladder method helped my short-fistula expand more…
I believe above my venous buttonhole the vein bifircates so I have 2 running parallel going deeper and I can’t get either of the buggers!
This certainly isn’t an exact science and I don’t think surgeons have any idea how stressful it is when you are at home trying to get those cannulas in to stay alive!
beachy (at present with arm black and blue!)[/quote]
Sorry to hear you’re having trouble beachy. What do you mean when you say " have trouble with one or other of my precious buttonholes"? Is it an option to reestablish the same buttonhole with sharps?
I’ve had my fistula for 17 years with one revision (earlier this year). I feel very fortunate.
Gus , I used the ladder method for the first couple of months, but had so many misses and bruises that I couldn’t wait to start buttonholing and really, it is so much better, particulaly with Nocturnal. As you may remember, I never did any time in centre except for training and haven’t used pump speeds greater than 300. I didn’t enjoy stuffing around with local needles, then sharps, usually needing about 4 or 5 goes before I hit paydirt. I only have 2 buttonhole sites around 21/2 inches apart and then the vein splits and goes deep. As you hopefully can see from pic (sorry about size of pic), the vein isn’t very obvious.
Bill, yes I do use sharps when my buttonholes get tetchy, but I would have liked to establish 3rd one further up my lower arm, in case of emergencies.
Cheers
I’m don’t believe in the fistula but was forced to get one by my center to get into the nocturnal program. I had brought this up before that the dr or company that comes up with a combo of fistula and cath to let people hook up and come off more safely then more people would come home.
I had a cath for yr. and half no problems. I’ve had my fistula for about a yr. and had problems with the top hole from the start. Was told that it happens"by my team" It clotted just like that one day four weeks back. Had to have it opened up. Since then my hand has been numb. “my team says that will will go away” in the meantime I’ve had to cut back on my daily jobs, “but this will go away”
Some times I think that some teams are no more smarter that the person on dialysis, and these are the people we are told we have to listen too.
thanks
bobo
Has anyone who is having problems with sticking their access asked for vein mapping or a drawing of where the access is in the arm? Having something like this has helped staff sticking patients with what they thought were difficult-to-stick accesses because it can show how deep the access is so they didn’t go to deep or too shallow.
Also exercising the arm, including lifting weights can help to develop a fistula. See www.lifeoptions.org under Stories and Strategies for tips to developing a fisula and the free booklets for the exercise booklet for patients.
Thanks for the advice about vein mapping Beth. Will ask for that when I go for the scan at the Vas surgeon.
I do quite a lot of weights at the gym,swimming, surfing, drumming etc but after 2 years it doesn’t seem to have built my vein up at all. So I guess it must be that the vein bifircates and the low pump speeds.
Cheers
[QUOTE=Beth Witten MSW ACSW;14690]Has anyone who is having problems with sticking their access asked for vein mapping or a drawing of where the access is in the arm? Having something like this has helped staff sticking patients with what they thought were difficult-to-stick accesses because it can show how deep the access is so they didn’t go to deep or too shallow.
Also exercising the arm, including lifting weights can help to develop a fistula. See www.lifeoptions.org under Stories and Strategies for tips to developing a fisula and the free booklets for the exercise booklet for patients.[/QUOTE]
[quote=beachy;14692]Thanks for the advice about vein mapping Beth. Will ask for that when I go for the scan at the Vas surgeon.
I do quite a lot of weights at the gym,swimming, surfing, drumming etc but after 2 years it doesn’t seem to have built my vein up at all. So I guess it must be that the vein bifircates and the low pump speeds.
Cheers[/quote]
What about you blood pressure? Are you dealing with hypotension(low blood pressure)?..I was told that people with low blood pressure tend to have more problems with their fistula…
[QUOTE=Beth Witten MSW ACSW;14690]Has anyone who is having problems with sticking their access asked for vein mapping or a drawing of where the access is in the arm? Having something like this has helped staff sticking patients with what they thought were difficult-to-stick accesses because it can show how deep the access is so they didn’t go to deep or too shallow.
Are you talking new fistula( what do you think is new as to fistula) or a fistula that has been used for at least month or more. And mapping has to be order by your dr. or nurse, if I say to my team I have this problem or that it is up to them to tell me what should be done?
Also exercising the arm, including lifting weights can help to develop a fistula. See www.lifeoptions.org under Stories and Strategies for tips to developing a fisula and the free booklets for the exercise booklet for patients.[/QUOTE]
On exercising the arm when do you have to stop? The fistula is only get so big in each person right? Plus I use my hands and arms on a daily basic, with outdoor work. Most of my pain has gone away ,I just have numbness in my hand and will see my team on 10/9/07. I’m glad these post have come up, now I can go and asking well thought out questions
Hmmmm Gus, you might be onto something there. It is normally quite low and I couldn’t even get a sitting reading this morning after Nocturnal. Think it is time to increase the old dry weight again. As I said it isn’t an exact science!
It seems as though vascular access is major problem for patients on home hemo dialysis.
My partner has been using a cathater in her chest for 7+ years. She has been on nocturnal that long and have not had any problem dializing with the cathater. Probably because of the low blood pump speed (200) on nocturnal. There is a problem using a cathater. The red and blue clips gets brittle and break. She has had to have the cathater tips with the red/blue clips replaced. Since they cut the cathater ends off in the replacement process the cathater is good for two tips replacement then a new cathater needs to be installed. (outpatient surgery) for both replacements. The cathater that she has now has been in for over two years. Found a way to slip the big white clamps that is on the lines from a Fresenius tubing set over the cap at the end of the cathater. It is a little bigger but… it saves going to the hospital to replace the tips…
The cathater should be better for nocturnal, I know that once the lines are attached to the cathater it does not become disconnected. (Of course we tape the connection so it does not have a chance of coming apart.
My partner also refuses to use needles… The clinic has suggested that she use the vascular access process but she states patient’s rights and will not change the way that she gets dialyzed. End of conversation. So no one at the clinic has tried to make her change her mind… In fact they are surprised that she is still using her cathater…
[quote=beachy;14699]Hmmmm Gus, you might be onto something there. It is normally quite low and I couldn’t even get a sitting reading this morning after Nocturnal. Think it is time to increase the old dry weight again. As I said it isn’t an exact science!
Cheers[/quote]
Aha, well my clinic nurse repeatedly tells me that low blood pressure is very bad on people with fistulas and if not raised can lead to clotting of the fistula.
For example, last week I was experiencing hypotension and was told to NOT to use any UFR…don’t take any fluid out…after one week my blood pressure came back up…