At my wits end

[ODAT]

I just found out last night that when my sister (from florida) took my mom to the vascular surgeon, he told them that without dialysis my mom had 6 months, and with dialysis 2 years. I am calling her neph tomorrow to ask him a few questions. 1. Does the vascular surgeon have a right and the knowledge to say this? 2. Does the neph agree? 3. What happens if my mom starts dialysis and then stops, will that lessen her time?

I am beside myself. We thought it was going to be an uneventful visit prior to her fistula surgery (7/30). I would have gone if I had known this conversation was going to emerge. What I do know is that from most everyone here, no one can tell how long.

[kellyt]

Sorry I don't have an answer for you, but that does seem like a strange statement.  I agree that when doctors do give time limits on patients they are guessing at best and just "preparing" you and/or the family.

I have no idea why the vascular surgeon would even comment on something like this, especially if that's all he is to her is the surgeon who puts in her fistula.  Very odd.  Definitely talk to her Neph and see if he has the same "opinion" as the surgeon.  You would think he would have said something by now to the family.

I'm so sorry!  Hang in there for your Mother!   

[PD Wife]

That was a terrible thing for the surgeon to say.  From everything I've heard and learned there's absolutely no way to predict like that.  Personally I'd be looking for another surgeon!  Or at least forbid him to talk that way in front of your mother.  I've had it about up to here with doctors!

[flip]

Sounds familiar. My first nephrologist told me that I would live less than 6 months without dialysis. I actually started dialysis 8 months later and my numbers were basically the same and I didn't feel any worse.

[ODAT]

Sorry just found out some new info: this is like whisper this to the person next to you and see what you come up with at the end. From my talk with my brother last night the 6 months came into play in that if she didn't do dialysis she would have 6 months to live NOT that she would need to start dialysis in 6 months. My sister said that the surgeon left the room to talk to Dahaan and my sister is the one who asked him the survivial rate. That's when vas doc said she will start in 6 months and have a 50 / 50 chance of surviving two years. Even though he did talk to the neph and that's what the neph said, just don't want to believe that. I might have mentioned in another post that my uncle (dad's brother) refuses to do dialysis. Hope mom doesnt' go that route, but...her ultimate decision. Plan is still to get access on 7/30.

This is indeed a treacherous road we are on and mom is the driver. Having all the cards on the table is only fair to mom in making this decision. I was going to ask Dahaan also, what if mom starts dialysis and refuses to continue at some point, that would shorten her time even more? I'm thinking it would.

thanks for the hugs!

[kellyt]

 

[Mimi]

Odat, you know, of course, that you cannot always believe everything that Drs say, especially when he is
not specialized in the field.  My PP told me to stay off dialysis for as long as possible and when I did start, it
was possible to come off of D if my numbers got better.  She said many people don't stay on the machine
full time.  They go on stay awhile, get better, and come off awhile.  When their numbers drop again they go
back on. I am 74 and none of my Drs. have ventured to say I had a particular amount of time to live.
I will live till the good Lord calls me home and so will your Mom.

Love, Mimi

[Sluff]

No one has a crystal ball Odat, just try to enjoy whatever time you have with your Mother whether it's 2 days, 2 weeks, 2 months, 2 years or 2 decades. No one gets out of this world alive. I wouldn't focus on that as much as I would just try to make the best of the time you have. 

[ODAT]

Mimi, I hadn't thought that she might be able to go off for a while. Guess we won't know til she starts. I know mom will live until it's her time, but don't want her to make wrong decision on what doctors are telling her. I am less concerned that no one really knows the time and more concerned that the doctors are telling her a timeframe. I'm calling neph in a little while.