Leg graft - Will it get better?

[Erin8607]

I have had a heck of a time with accesses over the last 3 years and it has come to having an artificial av-graft placed in my left thigh.

This thing HURTS. It hurts to get needles in it and it hurts constantly. I'm walking funny due to it and I'm afraid I'm going to end up with back problems because its affecting the way I walk so much.

It was placed mid-may and it's been used now for maybe a month (delayed because the incision had a hard time healing). The arm grafts hurt at first too, but I don't remember the pain being this awful and this restrictive. I almost feel nauseas 24/7 from the pain.

For those of you who are brave,here is my lovely thigh. http://photos.imageevent.com/erin8607/personal/dialysisisevil.jpg 

I do have shorts on, but they are pulled up to get the whole loveliness of the bruise into the pic

Any of you have experience with av-graft in the legs? You can also see some of the catheter scars in my other leg.. just had one removed a week ago. 

[kitkatz]

That looks damned panful.  Wow!  Hugs to you!    I hate access problems!

[monrein]

Erin, gosh that looks painful.  No advice but lots of hugs I'm sending your way.   

[willowtreewren]

Oh my. Oh my.

It hurts just looking!

I hope the pain subsides soon. Hurting is no fun!

 

Aleta

[Erin8607]

Graft clotted off, had three surgeries last week to get it open.

So, my mom tells me yesterday that when I had to have the temp catheter placed(while the graft was being worked on), they had a hard time doing it.

She talked to my surgeon who says I need a transplant, like now. He doesn't know how long this graft will stay open, and doesn't understand why they keep clotting off like they are.

Talking to him and specials that puts in the catheters, they don't think I will be able to maintain access to get dialysis if things keep up the way they have been. They figure I'll be out of options within 2 years, maybe less.

I know its scary and bad when it takes over a week for my mom to tell me these things.

Anyhow, anybody know who I need to beg and how to get moved up on the list? My wait, from what I'm told, is another 7 1/2 years. I'm 27 years old, in perfect health other than the lack of kidneys. No other problems, no diabetes, nothing. I'm about 60 pounds overweight though (thanks steroids) but have been working on that (have lost 80 pounds over the last 2 years). People keep telling me all this criteria should have me moved closer, but instead the hospital I am going to has me on HOLD because of my weight. I've been told go to another hospital, but the one I go to is already over an hour away. I don't know HOW I would travel back and forth much further.

Help!

[cariad]

Erin,

I am so sorry that you are going through this. I don't know how to get priority listing - in fact, I did not think that happened on the renal list, just other organs, but hopefully, there is a way.

I think you have to argue vehemently to get yourself off hold. You say you are 60 lbs overweight - does that mean 60 lbs over your "ideal" weight (as if there is such a thing) or 60 lbs over what the surgeons want you to be?

I was on steroids after my first transplant, and was abused horribly by doctors and my parents because of my weight, which, because my parents are obsessive control freaks, never got that high because they just refused to let me eat, and I was too young to do much about it. I don't abide weight discrimination.

Your life is at stake, I would be researching complaint procedures and contacting legal professionals. I have researched this extensively, and there is simply no conclusive scientific information that it is more dangerous to transplant someone with a higher body weight than someone with a lower one.

Here is a link to a transplant article on a  fat rights site that documents weight discrimination in health care http://fathealth.wordpress.com/?s=transplant They have a few ideas, but if the other hospital will just list you and actually work to get you a transplant, I would transfer there and then deal with reporting the first hospital when you have more emotional energy to devote to it. I hope others have some suggestions for you.

I hope you find a hospital willing to work with you. Good luck! 
 

[Erin8607]

I am 60 pounds over the high end of an "ideal" weight for my height. 15 pounds over what the hospital claims they want to put me on Active. FIFTEEN. But I've had so many issues lately, I cant get it off to save my life (literally).

This is the second hospital I've tried. The first would not even list me at my previous weight (~80 pounds ago). That's why it took me 2 years to get on the list even on HOLD status, I didn't realize different hospitals had different standards.

I was transplanted the first time heavier than my current weight (only about 10 pounds, but still). So, I really don't get it. The first hospital transplanted me the first time, the same that refused me 80 pounds heavier.