Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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/ Polycystic Kidney Disease (PKD) Support Group

Really need help and input!

norma67
norma67
Most of you probably won't remember my sister, but she has PKD, has survived peritoneal cancer as Helen has done, survived lung cancer, you name it, she has survived it. NOW, she has fallen and broken her wrist, naturally the arm where her fistula is located and it wasn't a clean break either, a nasty one! Sigh.... So they couldn't put a hard cast on as then they couldn't reach her fistula to have dialysis done, so were forced I to just putting a soft cast on. At dialysis today she was crying in pain and all they will give her is one percoset!! They took the soft cast off and her circulation was being cut off and so swollen that I couldn't believe my eyes! She cannot have any surgery because of her lungs, she still has tubing in there and is also on oxygen 24/7' she would not survive. My question to any of you out there is this. Do you know of anything that could be done to help her? She has survived so many things in her life that I find it hard to believe that she is going to die of a broken wrist!!! She has to be dialized 3 times a week, other wise is in pretty fair condition even living by herself and taking care of herself, up to this point anyway! The docs are throwing their hands up, but they don't know who her sister is!! That would be ME! I saved my husband by getting on the Internet and writing to every famous hospital that would read my letters. I do not give up easily!! I plan on doing the same for my sister! There has to be an answer! Thanks so much for reading my letter,

Lots of love,
Norma ...
deleted_user
deleted_user
what about a chest catheter, I am amazed they haven't suggested it. they could do the surgery as emergency and by the time her wrist is healed go back to fistula. why have they not tried this? I am angry just thinking about it.
they could also dialyze her through the femoral artery in her groin, it is not a pleasant procedure.
I also used to do dialysis with a woman who had a fistula in her leg, she wore skirts and they curtained her for insertion and removal of needles.
norma67
norma67
Helen, I don't know!! I do know that she can't be put asleep because of her lungs, she wouldn't survive any surgery! BUT, she already has a chest catheter in, not functional, but it's there from something or another way back in the beginning!, I can't remember now, but believe me I will find out!!! Thank you sooooo much!! I will keep you informed! Love, Norma ...
deleted_user
deleted_user
What if they don't put her completely under? Like laughing gas or something. Not sure if that's an option. I mean, if they can do it for removing wisdom teeth with our mouths being so sensitive. I'm sure it wouldn't be pleasant, but neither is her current situation.
CHeatherS
CHeatherS
Gosh, beyond what has already been suggested, I sure don't know what to say. There has to be SOMETHING they can do. Surely something like this has happened before a doctors were able to come up with a solution!
Chewitt
Chewitt
Hi Norma,

I don't really know anything about the dialysis aspect of this, but people do have emergency dialysis, so it must be possible to set up a temporary means of dialysing your sister while the arm is sorted out. I saw a guy on TV having his badly broken wrist bones manipulated back into place with just his arm being numbed. Can the wrist be pinned? Splinted without a full cast? A back slab (my son had this for a broken elbow, but he was only 6 and he couldn't keep still so they had to put a full cast on. It might work for an adult, though.). There is also laser treatment which is used on sports people to speed up healing of broken bones. There must be a multitude of ways around this. What is wrong with those doctors?! If you can't sort them out Norma, can you find another doctor elsewhere to have a look at your sister? Perhaps her current doctor just has no ability to problem solve.

Good luck, and let us know how things go.

Chewitt
norma67
norma67
Good morning everyone and thank you so much for all of your suggestions! I think chewitt has hit the nail on the head when saying her doctor has no ability to problem solve! My sister has a port in her chest that was used for her chemo. I don't know if that is a suitable site, but I don't know why not! We will find out today. Yes Helen you are so right on about everything! The docs in this area are limited at best. If the solution is not obvious then they throw up their hands! Remember when I took Jim to NYU in NY city? He got the very best care within two days of my initial email! It's unbelieveable how stupid some doctors can be! Donna's daughter put a call in to the doctor last night, I will keep you informed about what happens! I knew I could count on you guys and I was right! Thank you all once again!

Lots of love,
Norma ...
deleted_user
deleted_user
chest catheters don't last forever but maybe tubes could be replaced with new ones under local anesthesia. I am still angry that the doctors can't figure something out when we have possible remedies with no medical training. let's get sis better, prayers for her booboo and a solution to the dialysis prolem.
deleted_user
deleted_user
I was wondering the same thing as spiderwoman. why not use a chest catheter (a.k.a. central line). my husband is about to start dialysis and they are starting his with a chest catheter because they are hoping it will be relatively short term (less than a year). his mom dialysed with a chest catheter for almost 5 years. They are not designed for long term, but my understanding is that it would definitely be long enough to give the wrist time to heal.

has she had any other accesses before or just the fistula? with such a complex break I'm wondering if maybe they need to discuss the options of what the priority is - save the fistula or focus on healing the arm properly and if the fistula is damaged in the process, start a new fistula in the other arm. it's never ideal to have to start new accesses but that arm is really important for her - what if one day she needs to use a walker, but can't because her arm hasn't healed properly.

my mother in law (on dialysis 20 years) has broken numerous bones and it is harder for them to heal that for someone who isn't on dialysis. she has also had multiple access points through all of that - no access will last forever and there are lots of other spots they can use if they need to.

wishing your sister speedy healing and hoping the doctors get creative to maximize her healing and minimize her pain along the way.
norma67
norma67
Well, here is the deal. The docs say that they cannot do anymore surgery on her! End of story. No twilight sleep, nothing! She will not live through anymore surgery. Her lungs will not tolerate it, after the lung cancer. That's it. She is really depressed and sad. I have tried to get her kids to go out of this area, but she says no. They gave her a script for percoset, one every 6 hrs....:(. She is in excruciating pain ... All she has gone through for this, a broken wrist...

Love,
Norma ..
Chewitt
Chewitt
Norma, I understand that your sister cannot have any more surgery, but does this mean that the wrist can't be fixed? Take a look at this

http://bigdandme.wordpress.com/tag/dialysing-broken-arm/

I don't know whether it will be of any help, but I thout it might be worth a try. There are numerous websites detailing how to cope with dialysis and a broken arm/wrist. Perhaps there is something that the doctors have neglected?

Take care Norma,

Chewitt
norma67
norma67
Thanks chewitt, that certainly was interesting! The doctors final word is that no type of surgery, twilit or otherwise shall be done. More than likely, she will not survive due to her lung issues. She is really discouraged and in a lot of pain. I am afraid this one is going to get her. They have increased the percoset to one every six hrs., but it bearly touches her and more is out of the question! Her body can't tolerate more. I will talk to her doctor a out the website chewitt put on here, that would help somehow! She has nothing on her arm at this point! I don't have any faith in the doctors on this area but it's out of my hands. Thank you all for your concern, I will always remember this!

Lots of love,
Norma ...