Don't know what to think

[pistoltart]

Hi All....

My name is Pam but my user name is 'pistoltart'.....I am posting for my husband....He is the one is dire need of a kidney....In the last couple weeks he has been thru the mill.....He is on the list and has been called 31 times and still no kidney...the doctor has tried to keep him off dialysis hoping for a kidney to come thru but at last decided to put a fistula in....which is no where near mature....I had to rush him in the hospital last sunday and he was in A-Fib and they gave him 'comadin'....(hate it)....well it cost him a kidney because he got a call for a kidney and couldn't use it because already the kidney was out of the body too long and it would have taken at least 8 more hours to reverse it  when they found out he was on comodine....so it was a no go....we were crushed....they did give the kidney to another patient and I pray all is well with that person...I immediatley told them...'no more comodine'.....the rate for a stroke is 5%....so why wouldn't we take the 95 percent side....I am furiuos

Now here is my question...I THINK he is ready for dialysis and since they won't be able to use the fistula yet...I am so frightened for them to go thre the neck....has anyone had this...please let me know how it is and is it soo painful....he is home now but very letargic...can't sleep...out of breath mostly at night and just a mess....The doctor said he will know when he is ready for emergency dialysis and will know when to come in....do any of you agree....thanks so much for any input you can give.....sorry I haven't been here ...I am a computer illiterate and couldn't find you guys till now....If any one would please want to talk to me to ease my mind...my addy is pistoltart@hotmail.com
thank you so much and best wishes to everyone....this is a nightmare...

hugs....Pam



Edited: Moved to "Introduce Yourself" - okarol/admin

[okarol]

 
My daughter started dialysis in the hospital when she was 18 years old, on an emergency basis. The radiology dept. had her take a valium, then the anesthesiologist gave her a short term knock out, forgetting medication (I forget what it's called.) They inserted the tube in her chest and she was awake about 20 minutes later. It didn't hurt and it worked right away. She had it 6 months before her fistula was mature enough to take needles. Removing the tube was uneventful.
Personally, I think it's a bad idea to wait until it's an emergency. I would visit your local dialysis center, see what it's like, get the chest catheter and get him healthy so he will be ready when the kidney comes. I also think it's really important to pay attention to symptoms more that numbers, but that's my opinion. He sounds more than ready.
31 calls for a kidney?? That has got to be a record. Does he have high antibodies that would rule out donors? Has he had a lot of transfusions?
Come back and let us know how it's going please.

okarol/admin

[pistoltart]

Thank you so much for your reply....I am thinking the same thing....the way he now...he is in no shape for surgery....he has a cardio app. tomorrow and I will tell him what's going on...I told my husband....he will NOT be feeling any better unless it is a kidney or dialysis so he better make up his mind....the fact is...he is scared to death of D.....I am going to talk him into dialysis and try to admit him tomorrow....thanks so much for your information....and best wishes to your daughter...

hugs..
Pam

[gothiclovemonkey]

im 26 been on dialysis since 07, my dr never warned me about anything,not even telling me about dialysis or fistulas, one day im admitted, getting a fistula and a neck cath (which isnt as bad as they seem to be) and starting dialysis right away.
its not as scary once u get used to the idea... try to get some anxiety pills. they help sometimes it is scary but after a while it gets to be routine

[cookie2008]

If I was in the state your husband is in I would want to start dialysis, he will feel alot better, there is really nothing to be afraid of, see if he can talk to a dialysis paient at the center he will be going to if they will allow it. 

[Bajanne]

Welcome to our community!   You will find a great deal of information, support and encouragement here.  You have found yourself a new family   
I myself had to have a temporary catheter because my GFR was falling too quickly.   I asked them not to put it too high on my neck since I was teaching high school at the time and didn't want my students to think that their teacher was the Bride of Frankenstein!  Your husband will feel much better when he gets those toxins removed from his body.  One advantage of the catheter is that you get to leave as soon as dialysis is finished (with the fistula and graft you have to wait until the bleeding stops).  Two disadvantages are that (1) you have to be very careful about infection, and (2) you have to be very still during the treatment as the machine beeps for the slightest move!  The nurses/techs are super careful with catheters. 
Please let us know how he is doing.




Bajanne, Moderator

[Desert Dancer]

Hi, Pistoltart -

I just had a temporary catheter put in on August 22nd, so it's been less than a month for me. The surgery itself was nothing (twilight sedation) and they started dialysis the very same day. It was a bit painful, especially where they tunneled it under the skin, but it hurt a little less every day and it wasn't anything a Percocet couldn't handle. I had my fistula created the same hospital stay to get it started as quickly as possible since, as you know, they take time to mature. I'm very surprised your husband's nephrologist was not more proactive in getting a fistula created for your husband; it sounds like it should have been done a year ago.

Using the catheter is nothing at all; the lines screw right on and then you just sit there for a few hours. No needles, no fuss. But your husband will have to work on getting his fistula matured because it's a bad idea to leave a catheter in for very long - they are prone to infections. He'll need to be very careful to keep it dry and clean. With mine I use a BioPatch (antibiotic-infused disk) with a Tegaderm dressing; I had to supply these myself and demand my catheter be dressed this way, but I think it's well worth it to avoid infection.

Every day your husband delays dialysis the toxins are causing more damage to his body. It sounds to me like it's time for him to get this started. It isn't the end of the world, even though I know it feels that way.

Sending all good thoughts your way...

[Teepo18]

Hey,

Im 21.....ok i tell a lie im 22 starting yesterday lol and ive had a cath in my chest since february and it really is nothing. I was scared to death before hand because i was a 'crash course' patient, everything happened so fast and unexpected but really once it was in after a few weeks i never knew it was there. Not having a fistula either - good god they would have to tie me down and force it on me BLAH no idea how people can have them lol(im so vein >.<) but yeah tell him now to worry about it, it will be ok

[The Lady]

Hi All....

My name is Pam but my user name is 'pistoltart'.....I am posting for my husband....He is the one is dire need of a kidney....In the last couple weeks he has been thru the mill.....He is on the list and has been called 31 times and still no kidney...the doctor has tried to keep him off dialysis hoping for a kidney to come thru but at last decided to put a fistula in....which is no where near mature....I had to rush him in the hospital last sunday and he was in A-Fib and they gave him 'comadin'....(hate it)....well it cost him a kidney because he got a call for a kidney and couldn't use it because already the kidney was out of the body too long and it would have taken at least 8 more hours to reverse it  when they found out he was on comodine....so it was a no go....we were crushed....they did give the kidney to another patient and I pray all is well with that person...I immediatley told them...'no more comodine'.....the rate for a stroke is 5%....so why wouldn't we take the 95 percent side....I am furiuos

I am shocked they put him on Coumadin. Did they know he was on a transplant list? If he is in need of a blood thinner he should be on something like Lovonox...it's a low molecular weight heparin and naturally clears the body in 6-12 hours....but it can be very quickly reversed in an emergency. You should ask your doctor about it in case he needs ongoing therapy or has another emergency.