Starting soon and very scared.....

[hillary]

Hi all...my name is Hillary.  I just had my surgery yesterday to create the fistula...so I guess I will start hemodialysis as soon as it it healed.   I have been procrastinating about this for over a year, but I know I can't any longer.  I have been so terrified. I don't know what to expect, except that I know my life will drastically change.  For a long time I had decided not to go with dialysis and just "die with dignity" for lack of a better term.  I still feel like I'm going against what I really want to do and that I am doing it only because I feel pushed by my family and friends. I feel resentful instead of feeling grateful to be loved.  I know this is very f-cked up. But I'm just so scared.

[MooseMom]

Geez, this is the fourth time I've written this, and I'm running out of time, so forgive my brevity.

It is understandable to be scared.  Everyone is.  Starting dialysis is a huge thing, and we all have felt that fear.  Read through the posts on this forum, and you'll see what I mean.  I'm well known for spilling my guts and spreading my terror all over the place, and I have not been the only one.  I just use a LOT more words!  LOL

Here are some resources for you that I have used myself and think are particularly brilliant for someone just like you...

1.  http://lifeoptions.org/help_book   There is a book called "Help!  I Need Dialysis!"  I have one of the first copies, and it is wonderful.

2.  http://kidneyschool.org/  Kidney school is wonderful, too.  Click onto the modules and follow them when you have the time and inclination.  Not all chapters (modules) will be pertinent to your situation, but most will.

3.  http://homedialysis.org/  This site advocates home dialysis, but there are professionals on the board that will actually respond to your questions about dialysis.  Dr. John Agar, an Australian nephrologist, helps out on the site and is also a co-author of Help! I need dialysis!, and he is so good about giving comprehensive explanations on how dialysis actually works and how it affects the body.

4.  http://www.nocturnaldialysis.org/  This is Dr. Agar's main site.  He focusses mostly on nocturnal home hemo, but he also explains, again, exactly how dialysis works (in Australian football terms, LOL!)

I hope this helps.

[Big E]

Hi Hillary!

I've been doing in-center hemo for 2 and a half years, and honestly it's not that bad. The first few months are the hardest--that's when your body is still adjusting, and even then I was able to lead a pretty normal life. At first the discomfort from having the needles inserted is about like getting your ears pierced, but as your access gets bigger it  hurts less. Some days I don't even feel the needles go in.

Don' t be surprised or panic if your access doesn't work well at first. I had to have a dialysis catheter inserted in my chest for the first 2 months because my access hadn't fully matured. Squeezing a little ball will help your access develop.

Always bring stuff to read or watch or it gets REAL boring. A lot of dialysis units nowadays have wi-fi, so you can bring your laptop, e-reader, whatever.

Just know that you'll have good days and bad days. Watch your potassium/phosphorous levels--it will make a difference in how you feel. Best of luck and DON'T BE SCARED--everything will be OK.

[boswife]

good stuff here already written... Your going to be ok, and when check around here,   You'll see your not the only scard one and hopfully, you'll come to see how it's something you'll adjust to and move on with your life.  Blessings, and best wishes. 

[RichardMEL]

Dear Hillary,

Welcome to IHD!

This is the place to not be cared but to find knowledge and support at this difficult time.

You don't tell us much about your family sistation as in your age, married/single, kids etc... and I only ask not to be nosy but I do think ones personal situation is always very important - specially when discussing issues that you raise as in feeling pressured to do something you do not feel so comfortable with going onto dialysis.

That aside I will say that yes, your lifestyle will change, but the stability of dialysis (once settled) may well help you find a routine that works for you - by no means does doing dialysis have to interfere massively with a work schedule, or spending time with loved ones, or just doing what YOU need to do.

I am glad you are at least giving it a go, after so much time... at least you're going to try and see how you go - and facing the scary unknown like that is very brave.

You don't have to be that afraid though.... you have your support team around you, and you have us for information and support.

Hang in there, and stay in touch with us here as you continue on this road. I hope we can help whatever happens.

[hillary]

Hi,
I had my a/v surgery on Friday, and yesterday I saw my nephr. and he said he thinks the surgery was unsuccessful.  He didnt hear anything with the stethoscope and I know I am supposed to feel a buzzing or something but I have felt nothing.  I go to the follow-up with the surgeon on Thursday. I guess he is going to tell me we have to try again in another spot.   I am beyone disappointed and upset right now.

Someone pointed out that I neglected to share personal info about myself.  I'm 52, I live in Brooklyn, female, married to a great woman for 15 years, no kids - just cats.  My wife is as supportive as humanly possible.  I am lucky in that area.

My health has been bad since 2001 - I had stage III ovarian cancer. Underwent massive amounts of chemo which is what first screwed up my kidneys.  In 2005 I developed diabetes, which of course made the problem much worse.  My doctor classifies me as having chronic renal failure stage 5.  I have other medical problems as well and recently had to give up working.  Until Sept. of this year when I was hospitalized with a kidney obstruction, I worked full time.  Now I watch a lot of HGTV

[RichardMEL]

Thank you for the details Hilary - I didn't mean to sound rude or nosy when I asked.. just more some context I guess.

It's sweet you have cats - they are special family members all the same

I'm really sorry the fistula does not appear to have been formed properly - you should indeed feel a "thrill" or "throb/buzz" at the join as the blood rushes and flows (I was once asked if there was a battery in there doing that lol). I hope they can do something to help with it so that access isn't a total loss.

Is it in your lower arm or upper? if it's the lower they may try and place one in the upper arm near the elbow area, but if the failed one is already in that region they can't go lower alas and may have to try the other arm or somewhere else.

best wishes - it's scary and this stuff just doesn't help. Best wishes for the follow up!

[hillary]

The failed one is already in the crook of my arm a the elbow...so I don't think they can try again in the same arm.  I guess I'll know for sure tomorrow when I see the surgeon. But I definitely need a break after this experience.  I had no idea it would be done under a local with absolutely no sedation.  I have a chronic bladder disease and I was begging for a bedpan and they wouldnt help me. I was in sheer agony (which is what happens if I don't pee as soon as I get the urge). I will be rying a different surgeon and a different hospital.

[MooseMom]

The failed one is already in the crook of my arm a the elbow...so I don't think they can try again in the same arm.  I guess I'll know for sure tomorrow when I see the surgeon. But I definitely need a break after this experience.  I had no idea it would be done under a local with absolutely no sedation.  I have a chronic bladder disease and I was begging for a bedpan and they wouldnt help me. I was in sheer agony (which is what happens if I don't pee as soon as I get the urge). I will be rying a different surgeon and a different hospital.

Oh my God...they should have spoken to you beforehand about sedation/anesthesia!  As I was being prepped for surgery to have my fistula placed, I was told that my surgeon had ordered a "shoulder block", ie, I would be awake but numbed from the shoulder down.  I threw a fit, I'm ashamed to say.  I sobbed that this was the worst day of my whole life and that I didn't want to be awake to remember a single second of it, and I insisted that I wanted general anesthetic.  So they consulted with the surgeon who thankfully relented.  You are the patient and you should have input on as much of all of this as possible.  So, tomorrow when you see the surgeon, discuss this with him, OK?

I'm really sorry that the first attempt was unsuccessful.  Maybe the surgeon will be able to make the fistula work after all.  Let us know after you've seen him tomorrow, OK?  I'll be really interested to hear what he had to say.

[AnnieB]

Good luck with this fistula - I can't even imagine at this point, having to go through surgery twice...I agree with MooseMom, you should tell the surgeon that you want the general anesthesia and if they aren't willing to work with you, find a doctor who will.! 
Anne