Introduction of Fluter

[Fluter]

I am new and I need a lot of help---soon!  I’m starting to panic!  I’m supposed to have a fistula put in in 2 weeks.  Let me explain the background . . .I am a 66 year-old woman.  I have been diabetic for 30 years.  My diabetes was so bad that in 1999 my doctor wanted to amputate both legs.  I had all kinds of broken bones  in my feet and was in 14 different casts and just as many boots, special shoes, etc..  I was also obese and over 100 lbs. overweight.  I heard about Carnie Wilson’s gastric bypass surgery and did some research on it.  I live in Kansas City and no doctor in KC would even look at me and they all thought I was crazy.  Long story short---I went to the same doctor that Carnie did in San Diego and had the bypass surgery.  Three days later, I was no longer diabetic and off all meds and insulin.  My feet didn’t get better, but they stopped getting worse.  I walk with a cane---but I walk!  I lost 123 lbs. and have kept over 100 lbs. off.  My other problems were gall bladder (had that out), thyroid (had that out), I broke my hip and had a hip replacement, broke my arm and nose, had surgery for a detached retina, had a stent put in a heart artery, had surgery for a hole in my heart, I have GERD, have frequent and probably nonstop urinary tract infections, had a hysterectomy and bladder lift, had cataract surgery, had multiple foot surgeries, recently had CDIF, and a couple of months ago found out that I had stage 5 kidney failure.  I think I’m over the denial and anger part of all this, so now I have to get down to business.  And that’s where I need advice.  My nephrologist sent me to DaVita to talk to the people there.  I was so pissed because the nurse I spoke to told me I was going to have “fun” there!  She showed me the dialysis room---and that wasn’t my idea of fun.  People were all over the place, hooked up to machines---and no one looked like they were having fun!   I asked my doc what type of dialysis would be best for me and he said “peritoneal”.  I started to do some research myself and I really don’t think I’m a good candidate for that---what with all of the scar tissue I probably have, constant UTI infections and CDIF.  I need an antibiotic to cure the UTI, but that gives me CDIF, and that starts the vicious cycle.  I started hearing about NxStage on this site and it seems like the best choice for me.  But when I asked the doc about it---he never heard of it!!! How is that possible?  He’s been a nephrologist for years---doesn’t anybody in KC use NxStage?  When I told him that is what I wanted, he investigated and told me I could get training from Davita for NxStage (more “fun”, no doubt).  Since then, my daughter told me she wants to give me one of her kidneys.  While I was deeply touched, I’m not about to take one of her kidneys.  She is not in the best of health herself.  I went to the KU hospital to see about getting on a transplant list, and the doctor there said I would have to go there a few times before they even put me on the list.  So now I’m scheduled to have the fistula put in and I have a severe rash all over my arms and back.  My dermatologist doesn’t know what it is---could be from the kidneys, could be from a gluten allergy, but I don’t know yet.  I don’t see how they are going to put a fistula in an arm that is full of inflammation, scabs, and itch!  I need some help from you guys!  You’ve all been there and you are the only ones who will understand how I feel.  My husband gets grossed out when I try to talk about fistulas and other parts of the process, so while he tells me he will give me support, I’m not going to count on him too much.  What do I do?  What do you think about NxStage? And what about button holes?  And what else do I need to know or ask?  Now I'm starting to second-guess myself and think maybe I should try the peritoeal. Any and all help will be greatly appreciated.  I'm so confused.  Thank you in advance! 

[Angiepkd]

Wow! You are one tough lady!  This site has helped me so much with my decision making process.  I am a 44 year old mom of two grown boys and have Polycystic Kidney disease.  I was put on the preemptive transplant list 2years ago and found out I had cervical cancer during my testing.  A few months ago my kidneys reached the point of no return, and I started home hemo training with NxStage.  I wasn't a good candidate for peritoneal due to many previous abdominal surgeries and my gigantic kidneys.  Long story short, I have been using NxStage at home for 2 months and I really like it.  It gives me flexibility with my schedule and was very easy to learn, even putting in my own needles.  I am working on my second set of button holes, which I am told will prolong the life of my fistula.  I take care of my treatment myself, but do have my husband here to help if needed.  Search the message boards for questions you may have, or ask on your own post.  You will get so many experienced answers!  If I hadn't found this site to research, I wouldn't have known what questions to ask my doc and training nurse.  I went through DaVita, and have been very happy with my treatment.  My nurse is wonderful and checks in with me every week.  Hope you find the answers you need!

[MooseMom]

Oh my, you've been through the wars!

You mention that you are going to have a fistula created two weeks from now.  Did you have your veins mapped?  Where will your fistula be?

There are many fans of NxStage on this site, and there is a NxStage online forum.  I don't know the web address, but I'm sure someone here will tell you.

Two websites that are terrific...

www.kidneyschool.org

Click onto "learning modules", and you'll learn a lot.  It's made specifically for those who are just learning about dialysis.

www.homedialysis.org

People on this site are very well informed and very compassionate.  You will get a lot of information here.  If you have specific questions (which you do), consider posting them in specific forums, and then you'll get more specific advice/information.

Welcome to IHD!

[boswife]

wow flutter! and    Im 62 and wife of man on Dialysis.  We are some of the 'fans' of the NxStage.  Been having lots of "fun"  hahaha with it for 2 1/2 years    Its a great modality, but   I would think that if you could do paratoniel  (sP)and do well with it,, thats a great way to start.  Wishen you lots of luck and hope all goes smooth for you... 

[jjneyjr]

Hi,
The rash and itching can be due to too high phosphorus especially if you find that the rash is showing up in splotches. The nephrologist will perscribe phosphate binders and that will solve the rash and the itch along with eating a restricted diet (makes the diabetic diet look like a smorgasbord). What I learned today is that TUMS does the same trick as the expensive binders and will help to bind the excess phosphorus. Just chew 2 before meals but check with your doctor first.
Here is a good read to bring you up to speed

http://www.therenalnetwork.org/resources/resources/NewPatientManual.pdf

Good luck with all that fun you speak of and of course welcome to IHD

Cheers,

[MaryD]

I'm a 70 year old woman, living gloriously alone, and I do PD.  I have had a Cesarean, and a small bowel ressection (and just this week a hernia repair).  It might be suitable for you but you've been through much more that I have.  I really appreciate the freedon it gives me.  NXstage would probably give you as much freedom, and from what I've read here is much better for you than in-centre dialysis.  Congratulations on you weight loss and your conquering of diabetes

 

[papacat]

Welcome Fluter,
I am a 67 year old man doing PD for only 4 months. I do not have any HD experience, at least not yet. You really have had a tough time. I have found answers on this forum and I am sure you will too. My wife nearly passed out when she saw my PD exit site for the first time!

papacat

[iKAZ3D]

Just saying, I live in Lee's Summit, MO

[Riki]

I started out on PD as a child.  It was great.  No need for needles, except for bloodwork, and I was able to go to school with my friends, and very few people know what was going on with me.  I started again on PD in 2004 after my second transplant konked out, and I had no need for a fistula until, well, I needed one in 2009.  Ultimately, the choice is yours.  I was able to work full time on PD, where I'd never been able to do that now, on in centre HD.  I have found that I do much better on HD now, with regards to fluid removal.

I'm with Moosemom.  KidneySchool is awesome when you're just learning.  It'll definitely help you make the best decision for you.