I am a 26 year renal patient who has had many access sites all over my body. At present I use a graft which has been for four years.. I've had many angioplasties on this graft which seems to keep it going and it has clotted once. I know no one can diagnose or tell me what to do, but I am a little concerned about what will happen should this graft give up. MOst of my blood vessels have been used for either fistulas or grafts and my neck veins are also very used. Does anyone have any ideas,suggestions uplifting ideas and or some moral support for me? This is one area of my dialysis life which I am very concerned about and could use input of any kind. Thankyou.
JN

Jaemann,
How long have you been on hemodialysis? What caused your renal failure (that can effect your vascular access) Can you change to PD if needed? Your story is all too common because veins are a limited resource. Where do you currently dialyze: In-center or at home? A monitoring program to see if you current graft is having a stenosis reoccurring is a must. You need to find the problem early and have the angioplasty done to keep the graft open. A surgical revision may be needed if the angioplasty is no longer effective. Also careful evaluation of your upper body veins/arteries can be done to see if a new graft or fistula could be placed if your current graft fails.

Have you ever had an access in you legs? Who puts your needles into your graft now? Would you consider learning to put in your own needles? You need to make sure your current graft is protected and carefully monitored for any problems. For the future is a transplant an option or PD?

Your story is way too common and is why I am so involved with vascular access. I have seen too many patients face your same issues. You need to talk with your Nephrologist, Nursing Staff, Social Worker, Surgeon, MD performing your angioplasty procedures (Radiologist, Interventional Nephrologist) about your future options and make sure the whole team is working towards saving all you vascular access options as well as investigating other treatment options like transplant and PD.

Currently there is no patient support group just for Vascular Access issues. Please feel free to post any additional questions. You can also e-mail me directly if you don't want to post personal information- just click on the e-mail icon by my name. We can try to help answer your questions and direct you to resources to help you better understand your options. Many Nephrology professionals are working hard to find answers to the very difficult problem of vascular access.

Best Wishes to you. Dialysis patient are my heroes! You endure so much and need to keep alive your hope for a brighter future.

Deborah


[This message has been edited by Deborah Brouwer (edited 07-27-2000).]

Dear Deborah,

I thank you for your reply. To answer your questions and further this discussion, I will give you a very brief history.
I started hemo (at age 11) in 1974 after being diagnosed with Glomerular Nephritis a few years before. They used my bottom legs for av shunts up to my knees at this time for a while and then switched to fistula in my right arm which was limited in size as it only matured part of my arm. MY parents and I did 4 years of home hemo with the old drake Willock/Kiil dilayzers. I had my first transplant in 1978 which lasted five years or so. I returned to hemo in 1984 with a new graft put in my left arm as my fistula clotted after the transplant. 2 years later I had second transplant. This one lasted also for about 5 years. In those five years I had avasular necrosis and had my hips replaced. I returned to hemo in 1990 with a series of perma caths in my right subclavian vein. Eventually I had lots of infection trouble with this access and it developed cracks in it as well so it need to be replaced. I have always had a very large needle phobia so I would do practically anything to avoid the needle route again! after a while the graft became my only option as I kept getting infections. I Often wonder if the bout with pericarial effusion in 1994 was due to the subclavian catheter which had several infects for a while. Anyhow after a long run in hospital for a series of bad infections in my body, I decided to give PD a try so I stared on that and loved it, for about 1.5 years. I had a third attempt at a transplant in 1996 and it failed right from the start, it has totally put me off transplants so for now that is not an option. In 1997 I lost my PD site due to severe peritonitis and returned to hemo relucantly. They put a graft in my lower right arm and here I am now with the same graft. They do repeated angiograms to check and see how it is doing and occasionally an angioplasty is performed to widen the narrowing vessels above the connecting spot. The narrowing appears to be mostly in my vessels more than a stenosis as far as I understand and the angios seem to be effective most of the time. I dialyse in a community clinic where people are encouraged to particiapte as much as they can in their treatment and care. Patients are part of the team here, its very empowering to have so much control in a lifestyle that offers little in the way of control.(that is why I liked PD so much)
ANyway, sorry to have babbled on about this but this sounded like a call for a brief history to you to better undersatnd my position, Hopefully I acheived this. My graft also has a lot of psuedo anyeurisms on the arterial side so I am limited in the spot the needles can now go in. MY nephrolgist and I have decided that I need to see a Vascular surgeon to talk about revising part of the graft so perhaps they can do something then. Most of the time I am pretty upbeat, but sometimes the access part of things scares me and with my history I feel I have little options so there is a feeling of being trapped with no where to go. I am not a quitter, I've proven that over the 26 years I've been doing this, so I hope they don't run out of options for me. Its a good graft even with its limitation. Thankyou for listening and responding..

JB (I am female by the way)

Wow- you history and story is an inspiration. You have been through many access problems and still take actions to be in control.

Well if your current graft needs a revision- it is a good time to review all the future options. Is your surgeon a skilled hemodialysis vascular access expert? Depending on your local surgeons expertise- you may want to shop around the US (don�t limit yourself and your options). There are surgeons that have vascular access as their main focus. You may find someone in your own area. But it might be worth getting additional evaluations by other vascular access surgeons.

New technology is being developed for vascular access, but they are central catheter based (Vasca Lifesite and Biolink port). Not sure if you central veins would be open and useable without further risk of Central Vein Stenosis.

Can you return to PD? Or is your PD lining lost due to the infections?

Keep smiling!

Deborah


[This message has been edited by Deborah Brouwer (edited 07-27-2000).]

Deborah,

I thank you for taking the time to correspond with me, I really appreciate the feedback! THe Vascular "guy" here (victoria Canada) is an excellent surgeon and he has done most of the Renal patients as far as I know. I have yet to get an appointment with hm, but that should come along very shortly. I guess I'll seee what he says and take it from there.YOu have given me some great insights and ideas and I thankyou again! I will be sure to keep you posted as to the progress.

JB

Other possibilities include using the upper arm or thigh for graft placement. Less common are "necklace" and abdominal grafts. Don't be discouraged; with your attitude, there ARE options!