Asking for advice about getting a fistula

[Jonndad]

I have been on in center hemo for only two months.  It hasn't gone that bad.  I have a  tunnel chest  catheter.  The staff are all pushing me to make up my mind to get a fistula or a PD catheter.  I haven't made up my mind yet and I may not make up my mind for another 6 months or so because I have to move to a better place to live before I would consider PD.  The tunnel chest catheter has worked out fine for me so far.  One guy at my center has had his for two years because he doesn't like needles and apparently, the patient can refuse to get a fistula if he chooses and the staff HAS to use the catheter.  Now, I have read a lot about this.  I have read about the dangers of infection with a chest catheter and how serious that can be.  But I've also read on this board so MANY, MANY problems with fistulas.  i.e., clotting, hematomas, anyurisms, blood flow, etc. etc. etc.  Why would I want to get a fistula  only to have problem after  problem come up.  Should I just refuse the fistula and tell them I will take my chances with the chest catheter?  I don't know what to do.  AND I've read that the fistula is hard on your heart.  Any advice you might give me would be greatly appreciated.  A few other notes.  My  KT/V is 1.5 and I think I would like to stay on in-center hemo as opposed to hemo because once it's done it's DONE and I can go live my life.  Thank you in advance - John

[MooseMom]

Jonndad, please keep in mind that on forums like this, people don't usually post about how fabulously well their fistulas are working.  People post here to describe problems they are having and are asking for advice or are searching for information.

I've had my fistula for 2 and a half years and had no problems with the surgery.  Now, I never had to use my fistula, so perhaps I am not qualified to comment, but every medical person who has ever seen my fistula has described it as "fantastic".

Yes, you can refuse a fistula, and it is entirely possible to have a tunnel cath for years and never have a problem.  But if you DO have a problem, it can be much more serious than a problem you may have with a fistula.

Home hemo is generally easier on a fistula because 1, you are self-cannulating, thus reducing the risk of hematomas and aneuryms and 2, you are dialyzing at a slower speed which will of course reduces stress on the fistula.  But since you are wanting to continue in-center, perhaps you can learn to self cannulate.

Statistically, the use of an AV fistula is the safest way to go.  But the truth is that any form of access poses certain risks and dangers.  With PD, you run the risk of peritonitis (my cousin nearly died of that).  All forms of access need "refurbishing" from time to time.

If you don't have to decide this moment, keep educating yourself and talking to people.  You have the right to use whichever kind of access you want, and once you decide, if that doesn't work, you can always change your mind.

Good luck!

[Jonndad]

Thank you for that advice MooseMom.  You know you're right about my "perception" problem.  People who post here oftentimes are doing so because of a problem and I guess that skews the perception that all fistulas cause continual problems.  It seems to me, after only two months on dialysis, that EACH modality has a thousand good things about it and a thousand bad things about it.  There is no clear cut winner it seems to me and it is taking me a lot of studying, reading and talking to people to come to decision about modality.  But it seems to me, even if I go PD that sooner or later I will have to have a fistula anyway because if there is a problem with PD, how would I dialysize?  Would I always come in and get another chest catheter? I'm not even sure I would  want that.  The part of me that is afraid to get the fistula is saying "the common sense thing to do is to go ahead and get it for my own safety and so the medical staff willl quit bothering me."  Considering a transplant, if I am qualified is 5 to 7 years away here in Colorado I would most likely have to have  a fistula in someday regardless, right?  John

[MooseMom]

Jonndad, you are right in that there are pros and cons to each modality.  My neph had suggested PD, but after reading that it would mean that I would no longer be able to go swimming, which is the one thing that relaxes me, I decided against it.  I felt that I had already given up so much to CKD that I refused to give up one more source of pleasure.  Ultimately you have to decide which modality better suits how you want to live your life.  Plus, I'm only 5'2", and the idea of so much fluid in my belly made me imagine being something of a walking apple.

If you do decide to get a fistula, you MUST find the BEST vascular surgeon in your area.  My mother went to a VS associated with her clinic, and it was a disaster.  So she had to use a catheter for 18 months.  She never had a problem.  Finally, one of the clinic nurses whispered to her not to go to that VS anymore but to, instead, find a better one.  It was all profit-driven...the vascular surgeon being a part of the dialysis clinic's practice.  She ended up going to one of the top VS in the city, and the result was that despite her age (77) and her small veins, she got a superb fistula that never gave her a problem during her remaining years on dialysis.  So, your surgeon will be of paramount importance in obtaining a long-lasting fistula.

Yes, considering the wait time in your area, I would not be surprised if you would one day find it best to have a fistula.  If you go on PD and something happens where you need a different modality for a while, you'd have another catheter inserted until a longer term solution is found.

Don't let anyone rush you into making up your mind.

[Mr Pink]

I've been visiting the chair for nearly four months now, having started with a chest catheter, which will hopefully be removed in the next few weeks. My fistula is in its third week of use, and seems to be going well. In terms of a personal choice (which it is), having a fistula was a no-brainer for me. Be damned if I'm having a PD drain coming out of my stomach. Can't go swimming with one of those. Can't really do a few things I still like doing with one of those. In terms of problems that might occur, that could happen either way. I guess it really comes down to a lifestyle choice. I'm pretty happy with the choice I've made... thus far. Good luck.

[Jonndad]

Thank you for that input.  PD sounds so, ugh.  I'm in my fifties but I am dating and I like to swim.  I also have worked very hard to get to a normal weight and stay in shape.  The thought of gaining a bunch of weight because of the glucose water is not appealing to me.  Plus, I can imaging the havoc it plays with diabetic blood sugars.

[Henry P Snicklesnorter]

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[natnnnat]

I've also read on this board so MANY, MANY problems with fistulas.  i.e., clotting, hematomas, anyurisms, blood flow, etc. etc. etc.  Why would I want to get a fistula  only to have problem after  problem come up.

I have an impression that people write about their problems more than they write at times when all is going well.  So while its true that there are lots of stories here about problems with fistulas, that might not reflect the norm with fistulas or your experiences.   You might have a fine fistula that stands you in good stead for many years.

[cattlekid]

Okay, here's the deal.  I was in the same place you were.....I fought my staff tooth and nail on the fistula.  I saw a bunch of awful arms in the center, aneurysms galore, people with arms black and blue from the elbow to the shoulder.  One lady would cry and scream every time they came near her with a needle.  Now, I have no sort of needle phobia but I didn't want any part of that garbage.  I had live donors being tested and I didn't want disfiguring surgery if I could get away with it.

Well, turns out that all of my live donors crapped out.  So I really had to get a fistula.  I had the vein mapping done at the access center, got two referrals for vascular surgeons, talked with my doctors about who was better and went for it. 

Why did I finally consent to the fistula?  Because I knew I was starting home hemo.  The home hemo clinic allowed me to start with the catheter while they waited for my fistula to mature.  The home hemo nurse established my buttonholes and she and I are the only two people who have ever cannulated my fistula.  Even when I am in the hospital, I still cannulate myself.  I've been told by multiple doctors that my fistula is "fantastic" and the only things you see are the two buttonholes, and four small scars from the fistula creation (I scar easily, and they used surgical glue instead of stitches - it looks like the incisions were made by drunk monkeys). 

My advice to you?  Get the fistula - I had a staph infection in my catheter at the very end, and it wasn't fun.  Insist on buttonholes, don't let them give you a line of BS about infection.  Investigate self-cannulation, so that you are the only one cannulating your fistula even if you stay in-center.  Don't let them bully you into using sharps, that's where you get a much larger chance of aneurysms, infiltrations and the like.

[geoffcamp]

Forgive me if I'm repeating others, I only read your post. Here is my experience and thoughts. I have been on dialysis about 15 years now. I have been told and I have experienced that the best possible access for hemodialysis is a fistula. It allows more blood flow for a more though cleaning of your blood in a shorter time. Grafts are next for the same reasons just not quite as good as fistulas. Now here is my personal experience. I have had A LOT and I mean A LOT of clotting issues. Every fistula, graft and some new hybrids (HERO access) have ALL clotted. 15 plus surgeries plus uncountable amount of times at interventional radiology getting the unclotted with stints balloons etc.  so I personally have been using a cath for about 3 years now. I did have to increase my dialysis time from 3 1/2 hours to 4 to get similar clearances as the other accesses but it works great and NO CLOTTING ISSUES!!  However, you will get an infection if you have a cath in for a long period of time. It's unavoidable!!  I'm very very careful about cleaning applying new dressings and I have found a great water proof dressing that I can shower with and even occasionally go swimming in the pool with BUT as soon as I get out of the shower or pool I thoughly clean my site and apply a new dressing. My doctors really tried to push a femoral fistula or graft but no way I'm getting that work done so close to the boys!!  LOL. plus there is still no guarantee it will not clot on me!  I have for YEARS now been trying to get them to figure out a concrete reason as to why all these accesses are clotting. None yet! 

As for PD. When I first started dialysis I did PD and I hated it. All night every night 10 hours hooked up to the machine plus one exchange during the day. It may have gotten better since I did it almost 15 years ago, I sure hope so!!  My life style and schedule just didn't work with PD. I never sleep more than 5-7hours a night so I was stuck for a few hours teathered to that machine just waiting to finish. And the exchange during the day was crazy!!!  And with a PD cath you WILL eventually get an infection too. Again if you have a PD cath for any amount of time it's unavoidable. But for me going into a center for hemodialysis works great. Nothing to set up professional staff there to take care of things and I just chill for a couple of hours 3 times a week. I do a 3rd shift which means I usually get there around 5pm get out before 10pm and go home to sleep it off and wake up feeling great. That is just my experience your may be different. I hope this gives you some insight as you make the decisions that fit you best and good luck to you!!  Feel free to shoot me an email or repost any additional questions I will be happy to share my experience with you.

You should know everyone has their own opinion on this!  Especially about PD vs. Hemodialysis. It's a highly charged subject!!  Some people LOVE PD. some don't. And there a million pros and cons for both!!  So be sure to make up your own mind. As your just starting it can't hurt to try both!  A PD cath can be removed if you feel it's not for you!

Good luck making up your mind and keep on getting as much info as you can. The more you learn the better decisions you can make for yourself!  G.

[thegrammalady]

nice to know there is someone else from colorado on the board. i've had 4 cathaters and 3 fistula surgeries in the last 6 years. one of the cathaters actually fell out! tell the staff at the dialysis center to shut up and myob! what you do and when you do it is between you and your doctor and really none of their business. this is your life and they should do it your way or not at all. my doctor has been pushing pd for 6 years even though i've told him no over and over again. i'm also not interested in home hemo. i don't want to stick myself and i'm afraid i'd never leave the house. the center employees get up and go to work, i go to the center 3 times a week, no difference. well not much. there are some good surgeons in the denver area if you decide to have a fistula, pm me and i'll let you know who i used. i never had a hematoma until this last revision and that's because of the direction the fistula had to go. it's been going well for over 2 years. and the bump can be covered by my shirt. no biggie. the thing is be informed. the more you know the better. good luck.