Had Vein Mapping Done

[BASSMAN]

Hello all,

I am more of a lurker and reader than member really but the reality of what is happening to me is slowly soaking in.  I feel somewhat ashamed of that.  It is kind of like taking and not giving back.  I suspect I will post more as I progress to ESRD. 

I had vein mapping done last week and I have a meeting with the surgeon next week and at that time he will schedule me for an AV fistula.  From the opinion of the nurse that did the veinogram,  They will probably be able to use the vein at the wrist of my left arm.

How much longer I have before I have to go on dialysis is still a guess.  I was originally going to do PD,  but I decided that I would rather do hemo.  I don't like the  idea of having the tube hanging out of my belly and carrying 2 plus liters of fluid around.  My neph suggested I get the fistula built and be ready instead of risking the chance of having to have a chest cath.

Anyways that is where I am now.  I have a lot of questions about dialysis and transplants and such.  I don't really know where to start. 

I was wondering,  once you have the fistula built and it matures.  Will it just stay ready for months/years?  I mean, if I don't start dialysis for another year or so, will it last or will having it and not using it  pose any problems with it?

I will ask the surgeon these questions when I meet with him, but I would like to know about your experiences.

Thank you!

[tyefly]

    Hello   Bassman.........  I had my fistula surgery 5 weeks ago  and its still working.....  I don't know when I will be doing dialysis either.....   I guess when the time is right....  I guess for me  its better to have a fistula  than have to go with a catheter... so I guess being ready is a good thing......
   Good luck with your fistula....There is alot of information here regarding fistulas...  and many people here have them......  so your at the right place........

     kathy   

[Rerun]

Bassman, I wish you would reconsider PD.  If you use the cycler at night you don't carry around fluid during the day.  Yes you have a catheter in your abdomen but you tape that down.  You will feel much better and your days are free and your diet is not so strict.  Just think about it.

Once you get your fistula you need to check for the thrill or bruit.  It is a buzz in your arm which is the artery blood rushing through the newly connected vein.  Check for that daily.  If it stops call your vascular surgeon.  It should last but may develop scavenger veins which may need surgical attention.


If you start with PD you can always go to HD if PD doesn't work for you.  Yes, they would then have to put a catheter in your neck and then do the fistula surgery.

With PD you can get closer to dialysis before any surgeries.           

[KICKSTART]

I would also ask you to think about PD , as someone who has done both i can see both sides and would say that if given a chance i would go back to pd like a shot. Even if you do carry the fluid round (not everyone is empty during the day) you get used to it and the catheter is no big deal. Right now i have had to have an emergency tunnel line out in my neck for hemo (my pd stopped working, but only after 4 yrs +) and i find this far more traumatic than my pd catheter. Also you have to ask yourself how much control do you want , will you mind going to hospital every other day. PD is a gentle constant dialysis , whereas i find hemo quite agressive and it leaves you feeling drained. Dont dismiss pd on the cosmetics of it , because it also has plenty of plus 's.

[BASSMAN]

I have given much thought into the PD versus Hemo.  I am in good physical shape and I like to take my shirt off in the summertime.  This may all sound shallow, but I am proud of my body and abs.  The PD belt looks very cumbersome and evidently swimming is a risk for infection.  Something I really enjoy.  I think I can deal with the scars on my arm better than the tube in the gut.  I was think that at least you have 4 days of the week when you are not required to have treatment.  I think I can deal with the diet part of hemo but the fluid restriction does scare me.  I try to limit fluids right now because I build up fluid already if I drink to much.  I have been taking diuretics for years now.

Thanks for your feed back, but I have made my decision to go with hemo.  I may regret it, who knows.  I certainly don't but it seems right for me after careful consideration.

[billybags]

Bassman, I would also consider PD. My husband has been on emergency Hemo for 5 weeks due to having his tube out through getting e-coli. He has really suffered, tired, breathless, dry cough. He can not wait to get a replacement tube put back in. To-day he went for a pre op to have it replaced and they said he was not well enough at the moment, could be another month before they consider it again. He is not doing very well on Hemo, not dialysing enough, bloods are not good, they say it takes awhile. A long while to get right. With PD, ok you get the tube, it does seem strange at first but you get use to it. It is a much gentler way to dialysis, and as the others say a over night machine is brilliant. Dont want to influence you, but have another think about it, sort out the pro's and cons. Do you have the time to sit in a unit doing Hemo for, I know they say 4 hours 3 times aweek but take into count the traveling to the unit, the waiting to get set up, the traveling home, the tiredness. I would say my husband is on the go for about 7 hours and we only live 10 minutes away from the unit. Good luck with what ever you choose to do.

[willowtreewren]

Hi, Bassman.
I totally understand about the PD catheter. My husband chose HD for that reason alone! He doesn't like anything touching his skin, not even watches. He couldn't abide the thought of the catheter. He does HD at home and is the picture of health, no dietary restrictions, even. Do you have PKD with residual urine output?

At any rate, his fistula was created in August of 2007 and he did not start dialysis until June of 2008. That lovely fistula was just waiting to be used and in good mature shape.

Keep asking questions. There is much to learn.

Aleta

[Rerun]

Sounds like you have thought about it and made a decision.  That is taking control of your life and that is a good thing.

Best of luck.                         

[iketchum]

I had a fistula in my lower arm at first. The veins and arteries are smaller than in the upper arm and the connection made too sharp a turn at the wrist. When I had too low blood pressure the fistula quit. They tried angeoplasty and only used it once and it failed again. I had to have a second fistula put in in my upper arm, this one works much better, better blood flow. I would ask your dr. which would be better for you. Good luck.

[willowtreewren]

It is better to start in the lower arm first since an upper arm fistula precludes going to a lower arm fistula. Keep as many options open as possible.

And TAKE CARE of the fistula. It is your life line.

Aleta

[Sunny]

I understand your decision to do hemo instead of PD.
Once you learn hemo in center, you always have the option of tryng home-hemo.
Hope the mapping went well and that you are a good candidate for an A/V Fistula (lower arm).

[Meinuk]

I had my fistula placed 18 months before I needed it and it is still going strong now 4 1/2 years later - even after my transplant.  You are being proactive in your health by being prepared for the worst, yet still optimistic.  There is still time before you are tied to any machines.

Making a choice about which therapy to do is a very personal decision.  If viable for you, PD will always be an option should you decide that Hemo isn't your cup of tea.  Having access ready to start is a luxury when the time comes (A fistula is always good insurance, PD or no PD).  And as far as transplant, that too is a very personal decision.

Do what is best for you and your lifestyle.  Put yourself first, ask all the questions that you need to ask, but remember to enjoy every day that you are alive.  It is a gift.  For me, being sick was a reminder to love people more deeply & appreciate things that sometimes I never really appreciated. (all between bouts of nausea, and feeling kind of crappy and being in a foul mood - I am no PollyAnna)

Mostly, being in CKD 4, about to transition to CKD 5, is a sick & scary time.  You are facing so many hurdles.  Some days you are exhausted by the race, and other days your are reminded of the inner strength that you have to have just to be able to keep on running.  IHD is here to hopefully make that race a bit easier, sometimes funnier, and here for you when you fall down, to cheer you on, and encourage you to get back on track.  But here at IHD, we aren't on the sidelines cheering, we're running right alongside you.  It is our race too.

[Hanify]

Good on you for being so proactive.  I agree with Kickstart and Rerun, and have also done in centre as well as PD and love the PD (comparatively).  I asked at my unit the other day about getting a fistula and they said it would sit there unused for ages - as long as you needed.  So don't worry about that.  I believe the nightstage home haemo is excellent - so aim for that if you can.  I can understand the thing about wanting to swim.  I have this stupid thing where the fact that I can't go in a hotpool (with Richardmel) really really bugs me.  I know other people think that is very strange, and that other things should bug me more but it REALLY does.  So you are right to go with what you feel.  Just don't be afraid to change later if you hate the in centre.

[Rerun]

It is better to start in the lower arm first since an upper arm fistula precludes going to a lower arm fistula. Keep as many options open as possible.

And TAKE CARE of the fistula. It is your life line.

Aleta

If you start with the upper arm you lose any chance with that lower arm.  I read that somewhere...

[BASSMAN]

Thank you for your replies!  A lot of good information!

[BASSMAN]

Just an update.  I had pre-op done today.  That consisted of a chest x-ray, EKG and a long list of health related questions.  My surgery is scheduled for Sept. 24.

Does anyone know what the percentages are on fistula failures versus success.  If it does not develop do they try to fix it or do they just move to the next spot on your arm?

Thank you in advance!

[kitkatz]

More surgery depends on how well your fistula develops. Some are redone to bring them closer to the surface, others need redoing because they closed off.

[RightSide]

Hi, Bassman.
I totally understand about the PD catheter. My husband chose HD for that reason alone! He doesn't like anything touching his skin, not even watches. He couldn't abide the thought of the catheter.

I'm the same way.

I just cannot abide having a tube sticking out of my body.

But beyond that, "catheter" ==> "infection."  It is INEVITABLE that one's catheter will become infected eventually, despite his best precautions.  I don't EVER want peritonitis, and I don't EVER want endocarditis.

That's why I'm trying so hard to get an AV fistula (four surgeries, three failures, one iffy).

[Hanify]

Hey Bassman did you know you are famous?  There's a Swedish 'house' performer doing really well called Bassman lol.

[BASSMAN]

Ha Ha!

I originally chose this name many years ago when I was an avid bass fisherman.  Bass boat and all.  Now I go by BASSMAN as in bass guitar, as I am learning to play bass guitar.  So I went from BASSMAN to BASSMAN.