Newly involved with renal failure - need lots of help

[Donald1425]

Around Memorial Day I started taking an antibiotic for a UTI, took it for three days and thought I had the flu, made it to work the day after Memorial not feeling well, stayed home on Wednesday and Thursday heaving and such, completely dehydrated, Friday morning I had family take me to the hospital, they cleaned me out and hydrated me. For a few days they thought everything was broken, kidneys, pancreas, heart, etc. it was insane. The nephrologist determined it was acute renal failure and I still don't know root cause. After six days I was sent home, 2.5 dialysis treatments in the hospital and now 3X per week at a dialysis facility. I don't feel any different between treatments, although key lab work metrics show BUN and 67 and creatinine whatever at 9.6 - far from the normal numbers I had in January of BUN 16 and creatine ratio or whatever it's called of 1.2, on the very edge of the high side. The dialysis folks are pushy and not very empathetic. They keep pushing for the fistula and I understand the point about infection and access, however the central catheter is working fine and I am not in favor of the garden hose under the skin look. I am refusing to do the fistula until I see more lab results and a biopsy. The catheter is working fine. If they continue to push I will have to fire them and seek treatment elsewhere. I am 55 years old and prior to the illness all my other woes were under complete control, diabetes and hypertension, and my cholesterol and triglycerides were better than ever. There is speculation that the meds I was taking pushed the kidneys over the edge when a urologist prescribed an antibiotic. I still don't know. I feel like dialysis is a prison sentence, my yearly trip to Europe canceled or at least on hold, no more long weekend trips, etc. The only part of the treatment is seeing all the others in the chairs with these horrible garden hose arms. I asked my doctor to give me the prognosis in three terms, worst case, best case and most likely. The most likely case was dialysis for a month or two and the kidneys would recover. I produce between 2 and 3 liters of urine every day, so something is working. I don't know how to cope with how depressed I feel seeing everyone else with the fistulas and thinking I may have to go down that road too. How long does it take to develop the garden hose? What causes the garden hose - why does no one mention that during the process? The needles they use in the fistula are huge! I am not into pain. I am not signing the ESRD paperwork until after the biopsy - if then. It sounds so final. If the kidneys are toast then I will go the transplant route - or at least try - maybe a live donor, many friends and family have offered.  I need to know more about this disease, and what is the best way to proceed, I am hoping this site will provide information and education to help guide my future actions. Any comments, help, suggestions are most welcome. Thanks.

[okarol]

  Hi Donald,
Welcome. I know all of this is tough, especially when it happens so suddenly, as it did when my daughter started dialysis at 18 years old. Talk about stress! You can continue to use the chest catheter, and if you have acute kidney damage, it may recover over time. If it doesn't, and is chronic, then you have the choice of peritoneal dialysis as well as hemodialysis.  PD might be a better choice. For now just focus on getting regular treatments , and don't let them push you around. It's good to learn all you can, but try not to project too far ahead because it is pretty overwhelming. I hope we can be some support for you, there are some wonderful people here with tons of experience.
Thanks for joining us!
 
okarol/admin

[Riki]

I agree with okarol.  Ask about peritoneal dialysis.  It is easier on the kidneys, and the catheter is a little easier to hide than the fistula in the arm or the central line in the chest.  You do PD at home, at night while you sleep.  Everything is done to your own schedule.  There is risk of infection, but if you are diligent with the protocols, you should have no problems.  The only reason I'm not on PD anymore myself, is because a nurse didn't follow proper protocals, and I got an infection that did a huge amount of damage.  I wasn't diligent enough.

Don't think you can't travel on dialysis, because you can!  It takes a bit more planning, but it's totally doable.  I live in Prince Edward Island, Canada, and I go to New York City at least once a year to visit friends.  I went 3 times on PD, and twice while on Hemo.  On PD, you just have all the supplies you need sent to where you're going, and if you're on the cycler, you can take it as carry on.  It fits under the seat.  If you're on Hemo you just have to find a centre that will take you.  You may have to pay out of pocket for treatment, however.  The centre that I go to in Manhattan, I pay $400US per treatment, and I'm reimbursed when I get home.

Even though it feels it sometimes, dialysis isn't a prison or a death sentence.  You can still do most of the stuff you want to do, it just takes a bit more planning than it did before.

[Donald1425]

Thanks for the reply. I normally take a week long trip to Germany every year, at least I used to, the closest dialysis place I found via Google was like 8 hours from where I stay in Germany, I can't imagine a 16 hour drive, back and forth and a 4 hour treatment 3X a week - hardly makes the trip worth taking - and never mind I don't rent a car in Germany, just take a train to my destination. I can certainly understand being able to take domestic trips, like the one I have to take to Chicago in October...

Thanks for the info, I'll be reading probably everything on this site over time. My central catheter is not bothering me, but not being able to use my pool is somewhat annoying, but the fistula garden hose look does nothing for me, physically or mentally. Today I get some lab work back and I pray it will show signs of improvement. Thanks again!

[dialysismomma]

Hello and 
I am so sorry that the people at your center are so unfeeling about your situation. Try to explain to them that you need time to think and you will give them your decision when you are ready and that they need to back off. I can not say I know how you feel since I am not on dialysis but I am engaged to someone who was already on dialysis when we met, but I do know a lot about dialysis since I have been a tech for almost 10 years. As far as what the garden hose..lol under the skin is... there are to different types of access there is a fistula and a graft. I will explain both.

The fistula is where they go in your arm and find a suitable vein and artery then they but a small slit in each one and sew it together to make a larger vessel, what makes it so big is what your are thinking right now I am sure. Well there are a couple of reasons it gets so big one which by the way is a good thing. One it gets big because of the pressure created when it get exercised and when you get cannulated with the needles it creates more pressure because of the blood being put back in.
The graft is when they go in your arm and attach a synthetic tube under your skin called gortex, They again attach one end to a vein and one side to an artery. The graft does not get big like the fistula because it is synthetic tube.

Now you may ask which is better.. a fistula is better because it is natural and not synthetic/
I hope this helps you some, Also if you have any questions feel free to ask and I will try to explain the best i can

good luck Dialysis momma

[Dianejt]

Hi Donald  to IHD. It is a scary road that we are all on. My Hubbys new to dialysis also & it sure is a change in life style. Keep reading & educating yourself on this site. Have you thought of doing Nxstage at home? We are planning on training at the end of September. It is home dialysis & it is portable so travel is possible. Best wishes, Diane

[natnnnat]

Hi Donald,
Bill Peckham is a traveller on dialysis, he's currently canoeing on a river somewhere, or some such craziness.
check out
http://www.billpeckham.com/from_the_sharp_end_of_the/travel/index.html
and more specifically
http://www.billpeckham.com/from_the_sharp_end_of_the/2010/01/travel-on-dialysis-is-something-you-can-do.html

I hear that PD is easier to travel with, though Bill was on HD the whole time I think...?

[RichardMEL]

Donald, firstly - welcome, or should that be Wilkommen? (I think I have the spelling wrong. oops!  ).

What I find interesting, and you toucheon a bit in your intro, is that you've got acute renal failure. From everything I understand it is far far more common from acute renal failure, which can often be caused by bad dehydration, incidently, to reverse and the kidneys to recover. With that in mind, I totally support your reluctance to go down any more permanent route in terms of access until you have a better idea what the deal is - and sounds like you're getting, or pushing for, a biopsy. The doc even suggested the most likely thing was that your kidneys would recover, so I am a bit surprised at being pushed at this point.

Perhaps it is just the usual thing for that dialysis unit, or most of them - I mean let's face it for every acute kidney failure patient, who may recover function, they see they'd see 100+ chronics like me who definitely DO need the garden hose under the skin look (love the description!  ). It absolutely is true that the fistula is the best form of access and all that.

For now though I would definitely stick to your guns till you have a clearer idea of what you're dealing with. If, however, biopsy or other tests show that recovery of function isn't so likely, then you really do seriously need to consider a proper form of access, or to go with PD as a modality (lots of info here on PD, even though I've never done it myself).

It's great you're here and hopefully this isn't the horror for you that it could be. Hopefully you can recover some function and enjoy a Steinlager in a beer hall (and have one for me!  ). If not, we're here to help any way we can.

 

RichardMEL, Moderator

[edersham]

Donald,

I totally agree with okarol about the catheter I had one for 3 months before transplant and was constantly hounded by the dialysis clinic manager about a fistula. They worry about their infection stats. My Neph supported me because she knew there was a good chance of a transplant soon. She said the cath was good for up to six months and if need be I could replace it. I know someone who was on D with a cath for 2 years before transplant w/o any infections. It's all dependent on the clinic being fanatic about hygiene and you too between treatments. From what I saw with fistulas during the three months I know I will never have one. Good luck and please visit the transplant stories section here and get to work on that transplant if that's your desire.

Ed

[Riki]

I had my central line, or as you all call it, catheter for about a year and a half.  I got it because I had a horrible bout of peritonitis and had to have my PD catheter removed till the infection was gone.  Unfortunately, the infection caused too much damage to go back on PD.  Once I knew this, I went ahead with getting the fistula.  I had no want to keep the central line, because I desperately missed showering.  It took 7 months from surgery to have the fistula put in to having the line removed.

I know my kidneys aren't coming back.  I doubt there's much left of them after 20 years. *L*  For me, the fistula was the logical choice, but the central line was used for 16 months, so it can last much longer than 6 months.

[jg]

Donald:

I ended up in hospital with kidney failure in 2006 in western Canada.
Like you I started with a permacath.  They let me decide whether to go on pd or have a fistula,
on my time schedule.  Get as much support as possible to make the best decision  as
new medical info on your kidneys  is found out. Even if you need to switch providers.
With the catheter working  and peeing so much (2 to 3 liters - thats about my yearly output  ),
you are doing ok physically.

globaldialysis.com  says they have a list of 15000 dialysis centers.

 
 Jeff

[sullidog]

I too ended up in the hospital in May of 2009. I was given 3 months for my kidneys to recover, they never did so that's when we decided for the fistula accept I have a graft which is an artifical vaine because my vaines would not support a fistula. My center did not push me nor did my doctor.
Troy