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Author Topic: Access problems  (Read 2783 times)
Rain
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« on: January 17, 2013, 12:43:00 PM »

Okay I got my results from my vein mapping.  Back in November when  my fistula clotted and had a pseudoanerisym it took out all option of an access in my left arm.  No fistula and no grafts.  There is 1 option to do a fistula in my right arm, but I just want a break.  To be safe we are moving my CVC line to my left side, since if it clots on my right I might even loss my right arm for future access. And then all i have left is my legs.. "joy"

I am only 29 and I have to go through all this which sucks.   I am just hoping that a transplant is in my near future, apparently I am 5th on the list with my blood type, what ever that means. 

Does anyone else have any access issues?  ALso how many CVC lines have one had before you had issues with them?   The access nurse was nice and said we will move your CVC line and give it all the time you need to think about what you want to do.   The idea of going for another surgery feel be we dread, so I  think I just more time and to keep hope that I will get my kidney soon.  Part of me wishes that my fistula didn't fail.   But it also made me realize how naive I was that if someone thing was wrong another access could just go in.
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1988  Diagnosed with reflux and kidney damage
2006-  Diagnosed with Renal Failure and start dialysis in centre with catheter
2007- Fistula created and in centre hemo with fistula
2012- Fistula clotted and central line inserted
May 2014- Received Kidney from deceased donor
M3Riddler
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« Reply #1 on: January 17, 2013, 12:56:17 PM »

Okay I got my results from my vein mapping.  Back in November when  my fistula clotted and had a pseudoanerisym it took out all option of an access in my left arm.  No fistula and no grafts.  There is 1 option to do a fistula in my right arm, but I just want a break.  To be safe we are moving my CVC line to my left side, since if it clots on my right I might even loss my right arm for future access. And then all i have left is my legs.. "joy"

I am only 29 and I have to go through all this which sucks.   I am just hoping that a transplant is in my near future, apparently I am 5th on the list with my blood type, what ever that means. 

Does anyone else have any access issues?  ALso how many CVC lines have one had before you had issues with them?   The access nurse was nice and said we will move your CVC line and give it all the time you need to think about what you want to do.   The idea of going for another surgery feel be we dread, so I  think I just more time and to keep hope that I will get my kidney soon.  Part of me wishes that my fistula didn't fail.   But it also made me realize how naive I was that if someone thing was wrong another access could just go in.

Rain,
Do you know the size of your veins/artery they would be using?  This is important to know.  I would definitely get a second opinion from a facility that has no association with your current. If you decide to have a second opinion, do not provide them with any reports or anything dealing with your mappings... Let them do their own so they can come up with their own results.
Reason I suggest a second opinion is that many vascular surgeons want to do what is easier for them.  They will also work on a size of vein/artery that they feel comfortable with and will only be a certain size or above  while other surgeons may have a totally set of personal guidelines on the size they will work with.   
I have been to a vascular surgeon who would not touch anything under 4mm. I asked the reason and the only thing he could provide was that the larger the vein/artery the better results... ( yes this is true, but a fistula can be created with smaller veins/artery). 
The smaller the vein, the likelyhood of it maturing fully drops but does not mean you shouldnt try if you are limited.
My fistula was created witha 2.1mm vein. Its just a matter of finding the right surgeon.
Ask the surgeon what their comfort level is.
I had 3 different opinions and each one had a total different outcome on what should be done.
Here is a great read that will explain this more. 
For some reaosn, Many American surgeons do what is easier for them and not necessarily what is better for the patient. 

American Surgeons Still Last - Fistula First

Pay attention to the slide presentation as well. It gives different sucess levels in different countries... Unfortunately, American is last.

Hope this helps....
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The Lady
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« Reply #2 on: January 20, 2013, 04:09:19 PM »

Yep.

I'm 39 and my only option is catheters...and there are only so many places you can put those. There is no way of knowing how long the blood vessels will last as catheters tend to need replacing every few months or so. Sometimes as little as a week if things so wrong.

Fistula didn't work. Graft didn't work. They believe I have some sort of clotting disorder as both clotted before I ever used them. I've had clots in my lungs since I was 29 and am on oxygen 24/7 and am overweight, so I am not a candidate for transplant.

Scary. I could run out of options before being all that old.

So, I am going to try PD next. I am hoping I can do well on it and buy a lot of time. Let my current catheter site heal and rest up and if I am lucky i could get many years on PD before needing Hemo again...and maybe there will be new and better options for access by then.

Any chance you could do PD?
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Rerun
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« Reply #3 on: January 21, 2013, 09:01:59 AM »

Come on transplant......   :pray;
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geoffcamp
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« Reply #4 on: January 21, 2013, 10:13:46 AM »

Oh yea!!  I've been there done that for last 5 years!!  I have had a perm cath for 3years now. Have had at least 15 surgeries and a few different types of accesses but EVERYTHING clots. Now there are no options left on my arms. They want to do a femoral access and I said hell no!  So they are looking into a graft or fistula right in my chest. But I keep telling them I am not going thru all this crap again until they figure out why I'm clotting!!  There has been no good clear reason found or given to me why all these accesses I've had have clotted. But I understand man!  I've had plenty tried and been in more times than I can count for de-clotting or cleaning out the accesses I've had!  The cath runs great, I'm told its not as good as a fistula or graft but mine seems to go well. I've had it moved from one side of my chest to the other a few times and have had small controllable infections but it her than that it keeps me going!!  I'm careful with the dressings on my cath, I buy special water proof bandages so I can take a shower or jump in the pool once and a while. But I've been thru the ringer like you with access issues. There was one great solution that might work for you, it's called a HERO graft. It's kind of a hybrid of a cath and a graft. You might want to ask about it. Let me know if you want more info on it. Good luck if all else fails the perm cath seems to work well at least for me but requires you to take control and care for it. It's a process cleaning and keeping it sterile but with the water or off bandages I just redo the dressing every time I take a shower or get sweaty from working outside around the house or exercise. I make sure if I get it wet I immediately clean and put on a new dressing.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
Rain
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« Reply #5 on: February 07, 2013, 09:42:11 AM »

sorry for not responding sooner.  I got put on blood thinner because a clot caused by perma cath is blocking blood flow to my arm.  So all fistuals or grafts are out at this time.   If my perma cath goes it all clots and i am down the my legs.. and i am only 29 arg.
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1988  Diagnosed with reflux and kidney damage
2006-  Diagnosed with Renal Failure and start dialysis in centre with catheter
2007- Fistula created and in centre hemo with fistula
2012- Fistula clotted and central line inserted
May 2014- Received Kidney from deceased donor
geoffcamp
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« Reply #6 on: February 07, 2013, 02:11:59 PM »

sorry for not responding sooner.  I got put on blood thinner because a clot caused by perma cath is blocking blood flow to my arm.  So all fistuals or grafts are out at this time.   If my perma cath goes it all clots and i am down the my legs.. and i am only 29 arg.

Feel for you man!!  I'm down to the legs too and doing EVERYTHING to avoid it!!
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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