I'm Curious

[Chris]

I don't know if I would call a Fistula ugly compared to a graft. A graft is far uglier to me than the fistula I have. The fistula was never noticable to the public (it is in my wrist area), but my graft in the same arm is an eye sore that draws attention, not to mention itches almost 365 days a year where the tubing is closest to the skin. This darn thing starts at my inner elbow, curves around my bicep, and then under my arm. Ohh do I hate the feel of this thing even though it did work for dialysis.

[IUNurse]

People who are started emergently don't get to hear about options!  There really is no excuse for it unless you have NEVER seen a nephrologist and you NEVER knew you had CKD.  In my area, we will go over to the hospital and talk with patients there if we have to.  But people are still missed! 

[MIbarra]

I do not consider any fistual ugly.  It preserved my life for 2 years before I got my transplant.

[Ken Shelmerdine]

In Indiana where I work, it is our goal to teach you about dialysis before you need it.  That doesn't mean that we are reaching everyone, but we are truly trying to catch you before you start.  Even if you chose hemodialysis, if we catch you in time you can have a fistula in and ready when it is time to start and then you can avoid the permcath!
I imagine that is the goal around the country, but some areas are doing better than others!

This is pretty much what happened to me. My GFR had been going steadily downward for years but the odd thing was that other parts of kidney function were at 100% and still are, namely full urine output (although it contained very little in the way of toxins) so I didn't have any problems with fluid build up and haemoglobin level remained high.

These are two of the most debilitating factors usually present in kidney failure and I was not effected by them  so I felt why the hell should I go on any kind of dialysis when I don't feel ill and am able to get on with my life normally.

Eventually though they convinced me that in the long term dialysis would be essential because even though my body was coping with unfiltered wastes it would eventually take its toll.

I was given the choice of Haemo or PD.  I think if I had been a younger man I would have gone for haemo. My male libido in those days wouldn't have taken kindly to a piece of tubing stuck out of my gut! That would really have gone down well with the ladies wouldn't it!

I am 60 now, have been on pd for 2 years and couldn't care less what sticks out of my gut as long as it don't hurt me. Lol. So I chose PD.

It was all non emergency because I was feeling well. They booked me in for catheter surgery and six weeks after the surgery I started a weeks training on both the cycler and manual. Following that week my cycler was delivered to my hame and I started PD.

I still wonder why the hell I should be doing this when I feel just as healthy as I've always felt but the blood tests don't lie and thats the only reason I'm still doing it.

[Treasure]

Good question, peleroja!  I was not on the same page as my nephrologist, when it came to the start of dialysis-- and my communication skills were to blame. I did not make it absolutely clear that I did not want to go on dialysis, but wanted to pursue a living-donor transplant first. We had talked about the transplant, but only in the most remote way. We hadn't discussed that the transplant would take many months of prep. And we hadn't discussed at what point I might have to go on dialysis if the transplant was delayed.

I was not given a choice of modalities, when the time for dialysis snuck up on me. I believe that my doctor's vested interest in the center he owns had a lot to do with it. When  I brought up home dialysis, a couple of weeks after I started dialysis, he acted as if that choice was some voodoo ritual in some primitive village. Since he wasn't cooperative, I moved on to a home dialysis-friendly doctor and center and have since tried PD, NxStage and the Allient. Those three options weren't a perfect fit for me, but I'm glad that participation in the various, associated trials fed data to the researchers and  will pave the way for better-suited others to have these options.

I want to hear about your presternal catheter and PD.  When I tried PD before I was leaky, and recently, my surgeon mentioned some wackadoodle procedure to scoot my lungs out of the way so that if I leak, I could still breathe (insanity, IMHO).  But someone else brought up the presternal catheter option and thought that might give me PD access without the effusion problems.

[Cincygrandma]

Been on hemo now for 8 mos. using a low arm (wrist) fistula, created 11 mos. before starting hemo.  It's not too ugly, just bruised and has depressions from the needle sticks.  I alternate from none or practically no pain, to extreme pain.  Only the most experienced techs can successfully cannulate me.  Recently I was asked to consider button hole.  When I didn't hear anything for a few days,  I asked and was told no one was available to establish them. Then, would I do my own needles?....Noooo!  Then suggested I see a movie on PD and consider it.  I did seriously think about it.  I read as much as I could, including on IHD.  A few days ago I suffered thru another horrible cannulation, & was told I should get a catheter and give my arm a rest.  I felt so bad and was so upset into the next day, I called my tx coordinator.  I told her what was going on and explained that I knew that even though my surgeon and some of the better techs thought my fistula was doing great (as long as the cannulations were done right), I believed the center didn't want to deal with my access.  I wanted to discuss the PD and potential effects on a transplant with her.  She told me they do tx on PD patients, but there's always danger of infection with any catheter and 5-6 years is average time length for PD.
While I pray I'll have a tx before then, I know it may not happen.  Then I'd be back on hemo, possibly with scarring & other complications.  I've also always had a weight issue and believe I'd put on add'l wt that could prevent my transplant.  My 6 year old special needs grandson also is in my care, and don't believe I could do PD with him in the house.  (That's why I don't get much online time lately.....school summer vacation!)  My center operates both the hemo and PD, so don't think they care who does what...just what's easier for them.  I do believe they are pushing it more lately as I hear of more switching to it.  I have never had to have a catheter, and as much as I hate the hemo, I'm afraid to chance the PD.  I thought I would have a living donor last year, but my sister and daughter were both positive crossmatches....so am not real optimistic about how long I'll have to continue on hemo.  I guess I'm still puzzled though whether PD is considered a permanent treatment process or temporary.  I just don't think there's enough information or education on these subjects, especially when you don't always know all the questions.  Anyway, I hope you have great success with your PD and I'll be watching for further information on this subject.

[jbeany]

My doc was strongly against my doing PD, because I'm a brittle diabetic.  I was also already overweight, and it's very typical for diabetics to gain or at the very least, find it even harder to lose weight on PD.  I wanted to lose weight to get a transplant, so that didn't sound like a good option to me.  I did in-center hemo for 9 months, all the while kicking and screaming for my center to start offering home hemo on NxStage.  They didn't offer any home hemo options at all when I started. It worked, as more and more of the patients at my center learned about the NxStage and expressed an interest.  I've been on NxStage now for a year.  I've got crappy veins, so I've had multiple graft surgeries and more fistulagrams than I can count.  My next choice when my current pitiful left arm graft dies is either my dominant right arm or a permacath in my chest.  So far, my poor, abused upper arm graft is chugging slowly along, though.

[Rerun]

I'm finally back online!!    

I'm glad I remembered my password to IHD!  

OK, back on topic.  Dialysis was a surprise to me also.  The way I understood PD was it was a bag in your stomach and I said no.  But 4 months later I switched to PD.  Then I received a transplant. It lasted 17 years and when it failed there was too much scar tissue for PD again.  I'm now doing in-center Nocturnal Hemodialysis and it suites me very well.  I refuse to say I love it because I hate dialysis, but if I got to do it I may as well get 8 hours for the same stick and sleep through it.

[jbeany]

I  I refuse to say I love it because I hate dialysis, but if I got to do it I may as well get 8 hours for the same stick and sleep through it.

Welcome back, Rerun!  Good to see your smiling face again!

I don't necessarily love it or hate it.  I don't love doing the laundry, either, but then again I wouldn't like never having clean clothes.  Some things are just chores you have to do - that's how I think of it most of the time.

[okarol]

  hi Rerun!

[peleroja]

I was also already overweight, and it's very typical for diabetics to gain or at the very least, find it even harder to lose weight on PD. 

lol, don't I know it.  When I asked about a transplant they told me I had to have a BMI of 35 and I was about 46-47 or so.  So, knowing that my body absorbs about 1000 calories from the dextrose every day, I began to limit my calories to 900-1000 and use my stationary bike.  In the beginning I only did 30-40 minutes a day, 10 minutes at a time, and now I'm up to 80 minutes a day, still 10 minutes at a time, and I have successfully lost 27 pounds towards my goal.  It ain't easy but it is definitely doable!

[MiSSis]

My kidneys first failed in 1979 when I was 23.  I was diagnosed with Lupus in 1977 and had been going to a local Internist for 2 yrs..  I asked for a referral to the Univ. of Ia and was reading my chart on the drive there when I read that I had "possible kidney involvement".  Nothing had ever been mentioned to me about this.  My appointment with Ia. City was in Sept. 1978 and by March '79, I had complete kidney failure.  In that time, no one had ever mentioned the possibility of kidney failure or the possible need for dialysis in the future.  They tried to avoid dialysis by giving me massive doses of steroids but of course, all this did was allow me to gain tons of fluid weight over the next 6 weeks (I was in the hospital the whole time.)  Finally they performed emergency PD and put a shunt in my lower right ankle for hemo.  Without ever really understanding what was going on (I was so sick they got my then husband's permission to perform the surgery on me as they felt I wasn't capable of making decisions at that time), I had surgery for a fistula in my right wrist.  As soon as I came out of surgery, I was complaining because I knew I didn't want to use my arms for dialysis.  Within a month I had a gortex graft placed in my left thigh and I used that for 14 months prior to receiving my first transplant from my twin brother in May '80.  I hated hemodialysis.  The dializers were so huge back then and so much blood was being removed from my body at any one time that I constantly bottomed out.  Every single time!!!  I'd work 1/2 day that morning, drive myself to treatment, start to get massive headache and start puking about 2 hours into the treatment, then my husband would have to come and pick me up, take me home, pour me into bed when I would continue to be sick for the rest of the night.  Next day, get up go to work.  Day after ... repeat day 1.  And on and on.  It was awful.  My transplant lasted 3 1/2 years and was in a slow decline when I developed double pneumonia.  While in the hospital for that, the doctor came in and told me my transplant was gone.  I knew that I definitely didn't want to hemo again so I asked about PD.  Home PD had not been an option when my kidneys first failed.  It was only done in a hospital setting but by the time my transplant failed, home PD was available and I would be able to do it alone, without a partner as I was now single and living alone.  I did PD from Nov' 83 to Dec '87 when I received my 2nd transplant.  When it failed after 16 years there was no question in my mind on which type of dialysis I would chose again. PD works very well for me.  I love the freedom I get in having my days free and also having some leeway on when I start my treatment each night.  I also was never very good at the dietary and fluid restrictions on hemo and find these much more manageable on PD.  My catheter has never been a problem for any "activities" I've wanted to do.  My husband and I have found that there are many hours left during the day and evening when I'm not physically hooked up to my machine and my catheter is safely secured beneath a gauze dressing where it's not in the way.  If things changed and I found that PD wasn't an option any longer, I definitely be asking about NX stage.  Even though my center currently does not offer home hemo, the docs there are pretty receptive to new ideas and suggestions.  I don't think I could ever stick myself but I'm certain my husband would be able to assist in that for me.

[MyRenalRomance]

Prior to my recent transplant (5 weeks ago), I was on both hemo and peritoneal dialysis.

I chose hemodialysis as a first option.  I chose in-center hemo because I liked the fact that I would go to a center where trained professionals would be in charge of my dialysis.  My schedule was T/TH/SAT, so I liked having M/W/F as days off. I was on in-center hemo from May thru October 2007.

3/30/07  Arterial vascular fistula in right arm (which failed due to extremely small veins)
5/4/07    Tesio catheter inserted and first hemodialysis performed in hospital
6/25/07  Angioplasty in right arm (which failed also)
7/9/07    Revsion of fistula in right arm (which failed also)

Peritoneal dialysis (done at home) was the next option due to failed fistulas. Tesio catheter was always meant to be temporary.

10/12/07 Peritoneal dialysis catheter inserted
Began peritoneal dialysis on October 31, 2007

12-17-07  Stood in line for 4 hours to meet a SJ Sharks hockey player at a signing.  Started leaking dialysis fluid when I got home.  1500 ml was too much pressure for my body to withstand under these circumstances.

Needed to go back to hemodialysis until my body healed. At this time, my doctor informed me that the nighttime cycler was my last option.

1/18/08  First night using Baxter Home Choice nighttime cycler.

3/12/08  Removal of Tesio catheter due to success of nighttime cycler use.

6/20/08  Received kidney transplant.  My donor was my brother.

When I first visited my vascular surgeon to discuss my AV fistula surgery, he told me that he, personally, would choose peritoneal dialysis.  He said he would want to be in complete control of his dialysis from controlling the cleanliness of his surroundings (home) to being in complete control of proper procedure/hygeine.
At the time, I did not have the self-confidence to choose this option comfortably.

Hemo made me extremely tired and wiped out on dialysis days.  However, I really enjoyed my days off.

When I needed to go on peritoneal dialysis, I learned the procedure very easily, and did not mind the 4 exchanges I needed to do daily.  It just became a part of my daily routine.  And no icky side effects! Except for the eventual leakage.

When I needed to switch to the nighttime cycler, I learned that procedure very easily, as well. I liked that I could stay "dry" all day, and sleep while my machine did all the work! 

Personally, my Nighttime Cycler worked the best for me.
My dialysis needed to be 9 hours nightly.  So, if I hooked up by 10 pm, I was finished by 7 am, and ready to start my day after unhooking!  I could hook up later in the evening on the weekends b/c I could stay hooked up longer on weekend mornings.  Also, if I wanted to be out late on a week night (Sharks hockey games!), I would just ask my older daughter to drive her sister to school the next morning.  The flexibility was wonderful.