Nervous

[FindingNeverland]

I have kidney failure for the second time, I spent the first week of 2010 in the hospital because my transplanted kidney has now failed. I had an emergency catheter placed because I was in such a critical state but my doctors insist I get a fistula. I'm only 26, I'm concerned about having this thing for rest of my life. I'm also nervous about the surgery as I'm only getting local anesthesia. And the thought of having to be poked by needles, twice, each time I go in worries me as well. 

[MooseMom]

Oh boy, do I understand this!  I'm having my fistula created Monday, and the idea of having that thing on my arm the rest of my life is a nightmare, and I'm a LOT older than you are.  It's a constant, visual reminder of what's happened to you, and I don't like constant, visual reminders.

I'll be getting a local anesthetic, too, because I don't metabolize general anesthetic very well, it seems.  The surgeon talked about sedating me and using a nerve block in my shoulder, and I'm not crazy about that, either.  I'm not real sure what's going to happen...this is all going so quickly!

I marvel at how the people on this board just seem to get used to it all...the needles, etc.  But they do.  I've read about buttonholes, and this might be the way to go for you.  I'm certainly going to try it when the time comes.

There are a lot of people here who can help you with your concerns.  Are you going to try for a second transplant?

[monrein]

My first fistula (I was 26 at the time) clotted off a year after my first transplant FM, and I'd used it very successfully for 5 years.  It's now about a six inch long flat scar on my forearm.  It's noticeable but not awful.  My second one is in the upper arm and is still going strong.  I don't like the look of it but I actually hope it keeps going in case this second transplant fails (it's now been a year) and I need a fistula then I don't have to mess with another vein.  A fistula is much better than a chest catheter, in terms of infection and all that, but I do understand your concern about the looks of it.

I found everything hard and overwhelming at first too but I did make my peace with the whole process...including the machine whose nickname was "Little Leech" or "Petite Sangsue" in French.  I even learned to like my fistula and I still like feeling it buzz.  At night I like the sound it makes, the ocean in my elbow.  It's sort of like how I've come to appreciate my horribly knocked knees...they allow me to walk.  Good looking they're not but, like my fistula I can cover them up and no one's the wiser.  Function over form I guess is one of the ways I cope.

I hope IHD can help you feel a little less nervous and please ask any specifics you want. 

[FindingNeverland]

The constant visual reminder doesn't bother me so much but I'm not exactly happy about it either. My surgeon talked about the same thing, sedating me and using a nerve block in my shoulder. I would really love to know how it turns out and I hope you do well with it. I've read about buttonholes and the ladder technique, not sure how I feel about piercing the same area over and over again, I feel I would prefer the ladder technique. Yes, I am going to try for a second transplant.   

[galvo]

Being worried about the whole rotten thing is par for the course. If you weren't worried, apprehensive and, sometimes, downright scared, you'd be eligible for admission to the funny farm. But, it's great that you've come here to express your feelings. You are amongst people who do know what you're going through, and who will be very supportive towards you. I am only a relative newcomer to dialysis, and this forum is what keeps me sane (relatively).

And a big .

[MooseMom]

The constant visual reminder doesn't bother me so much but I'm not exactly happy about it either. My surgeon talked about the same thing, sedating me and using a nerve block in my shoulder. I would really love to know how it turns out and I hope you do well with it. I've read about buttonholes and the ladder technique, not sure how I feel about piercing the same area over and over again, I feel I would prefer the ladder technique. Yes, I am going to try for a second transplant.

I'll probably come to IHD and blather all about my surgery on Tuesday, so I'll let you know how it goes.  Actually, the surgery nurse at the hospital just called me to get pre-op info.  She asked if I had had problems with anesthesia in the past, and I told her I had.  When I had surgery in 2008, I apparently had trouble metabolizing the drugs, and the antidotes didn't work well.  Once I was awake the next day, I asked to have a report on what happened, and I have it in my files.  I told the nurse I'd bring a copy of it on Monday.
I imagine that you will be able to decide which technique works best for you after having the chance to try both.  It's hard to know what you want right now.

[KICKSTART]

Isnt it strange its standard procedure over here to do a fistula with just a 'local'. Although not the best idea , i suppose recovery time is instant (not being knocked out!) I can understand you worries totally as i have a line in my neck and have all this to go as well ! I have found actually talking to other patients at the unit about how bad it is helps me and i watch as they are needled (partly to see the expression on their faces!) I think the men are the worst  ( i just hope you are female? ) Men cant handle pain like women ..hehe !

[monrein]

I had my fistula done with sedation and a local.  Full blown anesthesia really isn't needed and holds more risks than benefits for "minor" procedures and in the world of surgery a fistula is relatively minor.  Doesn't feel that way to us I know but there it is.  I tried to stay awake to watch but fell asleep and didn't feel anything. 

[kellyt]

I had the "margarita", as they called it, and a nerve block.  I don't remember a thing about my first fistua (wrist), but the doctor told my husband I was alert the whole time.  Now my 2nd fistula, done one month later cause the wrist didn't take, I was in and out and I could hear them and talk a little.  We had rock music and everything.  Just like on TV.

[sullidog]

I am 26 and had my first fistula, well it was the graft and it lasted 6 months. The needles I just got use to cold turkey and sadation well they give me local and a little bit of general.
Troy

[RichardMEL]

I had a general for my surgery - thank God - I'm a wimp!

As for the needling during the sessions - this was a bit of a fear for me too when I started - like I said I'm a wimp/wuss, so the thought of the needles freaks me out. What I do thus is I don't look when they're doing it and I think about something else (like the IHD girls  ). Truth is that as the fistula matures and gets more use it also (generally) gets less sensitive so most times the needles don't hurt going in - it's just a bit of pressure. Mostly. Sometimes it hurts, but usually it's nothing. I don't really worry about it these days - but I still don't look!!!!

[MooseMom]

I didn't mean to imply that general anesthesia is the norm.  According to my surgeon, it is done on an out-patient basis, but I never got the impression that it would be done with just a "local".  But perhaps I am misunderstanding the term.  I was told that I would be sedated and would have a nerve block.  I don't care as long as I don't feel anything.

I hate general anesthesia with an unbounded passion.  When I sleep, I have extremely vivid dreams that often pack quite the emotional wallop.  Sometimes I feel psychologically wrung out upon awakening.  It's not always pleasant, but at least I know I am alive.  Whenever I come out of general anesthetic, it's like a light switch has flipped on.  Out of nothing comes reality, hard and fast.  I do not dream, so it feels like death to me.  I hate it. It just creeps me out.

[okarol]

Hi FindingNeverland. My daughter's transplanted kidney is failing and she is 24 years old. She had 3 years on hemo, then 3 great years with the transplant. We are now exploring her fistula options as her original fistula clotted on the day of her transplant. I know she's also nervous and dreading what lies ahead. I hope the vascular surgeon can do a good job for you, and you'll have a good strong fistula for as long as you need it. It's tough to go through these things so young, but as you'll see on this forum, there are some really inspiring people who have been through a great deal during their lives with kidney disease, and they can share their experience and hope with you.

[Stoday]

My fistula surgery was done with an arm block and NO sedation. Somewhat uncomfortable whilst they were injecting the block. It had to go in just the right four spots, so they poked around with a needle that was wired to an electric shocking device. In the right position, it made my fingers twitch. Took them half an hour to sort it.

Couldn't feel a thing during the operation, other than a bit of discomfort in the ass after a couple of hours. I was fully conscious and chatted with the nurses throughout.

Really, there's nothing to worry about.

[peleroja]

No one can "insist" you get a fistula.  As the patient you always have right of refusal, up to and including dialysis.  I never wanted a fistula and still don't have one.  That is my choice.  Others think it should be fistula first.  You have the right to make up your own mind.

[FindingNeverland]

It's very reassuring to read others experiences, thank you for sharing. I've always been one to let my nerves get the best of me, I'll be fine as long as I don't know what's going on during the procedure. Usually needles don't bother me, I think it's just the size of the needles that worry me and that they have to use two of them.


Personally I'm on the fence about getting a fistula. My doctor insists because my catheter right now is in my groin because they couldn't get one in my neck/shoulder area were they usually put them so they're worried about infection as the risk can be greater in this location and I would prefer not to have this thing in my groin the whole time because it's a big inconvenience.   

[Zog]

Sorry you have a groin catheter, that doesn't sound at all bearable.

You have a high chance of sepsis with any catheter.  My wife almost died from sepsis from her chest catheter exchange.  Catheters kill.  Look at any study.  If you must use one, learn to clean it, do your own dressings and look into ethanol flushes to kill any bacteria and periodic TPA injections to break down fibrin.

You are way too young to not get a fistula.  If you plan on sticking around another 50+ years or at least till your next transplant, you need to get one and a good one.  My wife is on her second fistula.  She had her first ligated because we thought her transplant was going to last for years because it was doing so well.  We were worried about carpel tunnel and left heart ventricle issues when we had it ligated.  I think we would have kept it if we knew she was going to need it again so soon (1 year later). 

If you don't like huge scars and you aren't doing your own sticking, try to learn to stick your own buttonholes.  The ladder method may leave a long wide scar on your arm over time especially if someone different is sticking it every other time.  My wife has an 8 inch long scar from the ladder chain technique on her forearm where her first fistula was.  She is doing her own ladder sticking now and has two one inch long scars on her bicep.  She can't do buttonholes with her stents, but we would if we could.

Fistulas are better period.  Get one and take care of it.  It is as valuable to you as any other vital organ in your body.  If you are worried about how it looks to others, wear 3/4 length or long sleeves. 

Don't get a chest catheter if you don't like having scars and infections on your breasts, don't like sticking tubes in your bra, and do like taking regular showers, wearing a bikini top, and going swimming.

I am sorry if I sound blunt, but not getting a fistula is living in denial of your condition IMHO.  After having to live through my wife almost dying from her catheter I can't say much good of them except as a temporary access with a pretty good flow rate.  If your fistula doesn't work out and you have to get a graft it is still better than a catheter.  If the idea of a fistula really bothers you, look into PD.  It is great for young beginning dialyzors.  My wife hooked herself up to her PD machine every night when she was 14.  Although with PD you have titanium ports which you can bend the rules and swim with.

The block is a very effective procedure.  I haven't heard any complaints from my wife during the 4 times her arm has been blocked for various fistula ligation, creation and stent insertion surgeries.  The only complication my wife ever had from fistula surgery was during the ligation of her first one when the surgeon cut part of a nerve to her thumb.  It actually grew back after 4 months.

Scars are just something you have to get used to if you want to live.  My wife has a scar on her leg from the site they took a vein to make her first fistula. Five large scars on her abdomen from various kidney transplants and removals (she is lucky she still has her belly button), one C section scar, 2 fistula scar areas, scars on her chest and neck from 4 different catheters, 3 PD port scars, many needle scars on her arms, and the most recent scar across her neck from a parathyroidectomy.  There isn't a way around the scars.  They are like tattoos, stripes or merit badges.  I don't notice them anymore honestly.  My wife is only 28.

Good luck!  JUST DO IT!

[KICKSTART]

No one can "insist" you get a fistula.  As the patient you always have right of refusal, up to and including dialysis.  I never wanted a fistula and still don't have one.  That is my choice.  Others think it should be fistula first.  You have the right to make up your own mind.

 

Yes but you are on PD , what are you going to do when that stops working?  Mine has and now im facing a fistula , when it comes to Hemo you wont have a choice!

[HackerYacker]

Hey. I've been on dialysis (again) for two years now. I am now 24, I got my fistula when I was 22, and I had my first transplant when I was 16. The first time I had dialysis, I had a chest cathedar for about 5 months, but only because I took care of it, and I had a transplant set up very quickly. I only have medicaid coverage and they seemed to cover all the costs that were needed for the fistula. I know it might make you nervous but it really isn't too bad once you get used to it. You can ask for some ointment to help numb the skin, and after a couple months, you should be about used to the sticks. I agree that the fistula is your best route if you don't want problems and infections. And if your nerve's get too bad, ask the doctor for something. They had to give me diazepam for the first couple of weeks when I started using my fistula, I'm a nervous wreck.

[FindingNeverland]

Well I'm definitely getting a fistula, I had vein mapping done Monday now I'm just waiting for them to call to schedule the appointment. Scars really don't bother me, I've accumulated many in the twenty years I've spent in and out of the hospital, as long as they don't goof up my tattoos I'll be happy. The only reason I'm on the fence is because we already have a matched donor, we just have to wait six months for my compliance contract to end, but of course I know there's no guarantee behind it, so I know should just do it anyway. I've done peritoneal dialysis before and I rather not go back to it.

[Zog]

My wife used her last catheter (the one that got infected) for about a year.  I can see more reasons why you are nervous now.  You are going to have to get a fistula someday, I just don't know if it would be worth it if you know you are getting a transplant in 6 months.

If you do get a fistula it might not have much time to mature and get huge before you get a transplant depending on how well it works.  They do get a little smaller once you stop using them, but not much.  Everyone is different.  If you get a good transplant your new fistula may clot off or cause you trouble before you get another chance to use it.

[FindingNeverland]

Well six months plus the time it will take to re-evaluate my donor but they said that wouldn't be but another couple months. My doctor has been pushing the subject since I was in the hospital in January and the staff at my dialysis center have all been encouraging me about it. They say it will give me better dialysis treatment and should help with fluid because we've been having a hard time getting it off and I'm all for that. Plus the sooner I can be rid of this catheter in my groin the better. It's just the feeling of I'm 'darned' if I do and 'darned' if I don't, I guess I'm expecting the worse when I really shouldn't be, basically why I came here, heh.

[Zog]

You should probably go ahead and get one if your flow rate with a catheter is bad.  My wife's flow rate is worse with her fistula (370 ml/min) than it was with her RIJ catheter (500 ml/min)--go figure.

The surgery isn't that bad... it is more the getting used to this buzzing thing on your arm, finding clothes to hide it and/or explaining it to people.   Although some fistulas actually don't turn out that big--you never know.

[*kana*]

I do cardiac echo's/Tee's and commonly see infections on those chest caths, so getting a fistula isn't a question for me.  If you get a staph infection in your heart you will need your valve replaced, if you live through the infection that is. 

I'm going on the 17th for an eval for a fistula so I completely understand your fears.   

[FindingNeverland]

My flow rate isn't good with my catheter right now and I have a lot of trouble with cramping. Infection is another concern and probably the biggest reason why I do want to have a fistula.


I definitely feel less in the dark since I've posted here, thank you everyone for your input.