While I was gone...

[petey]

Aleta,
Probably as much as anyone around, I understand your disappointment.  We have had 9 friends/family go through the testing process to be a live donor for Marvin.  With each "Sorry, this donor has been ruled out," our hearts sank and our spirits dampened.  It is so very, very hard to take.  (Though none of his "potential" donors changed their minds, it still is a hard pill to swallow when your hopes go up only to come down again.)

If your friend wants to talk to a living donor, feel free to give her my email.  I wouldn't try to convince her to do it, but I could offer first-hand experience of what it's like to be a living donor.  You know me well enough to know that I'd be honest with her.  The whole process is not easy for the donor, but for some (like me), it was a life-changing experience.  Just an option if she has more questions from someone who's been there.

As for you and Carl, try to have hope.  His time will come (maybe not how and when you want it or expect it).  Know that I'm thinking about you and disappointed when you're disappointed, too.  Someone on this thread said that when one door closes another opens, and that's so true -- not only in this situation but in others.  Keep looking for better ways (nocturnal?) and enjoy every day you have with Carl.

...and, as a side note, thank you for what you did for me last month!  You are a true friend, and I will never, never, never, never, never forget that.  I'm here if you need me.

Marsha

[cherpep]

Aleta -

Sorry to hear about your topsy-turvy situation.  Hang in there! 

Regarding nocturnal, I've been doing a lot of thinking about that too.  Right now, our dialysis area is in a nice area in the basement - very comfortable, but I wouldn't want to sleep in the chair all night, every night.   My biggest drawback about doing nocturnal is bringing dialysis upstairs and into the bedroom.  I must admit that I like that the treatment doesn't reach the main living area of our home, and especially the bedroom.  I know that nocturnal has a lot of benefits, but I personally like that when I leave the basement, I leave dialysis.  Where does Carl currently do dialysis?

[Hanify]

Hmmmm, I'd never thought of it that way, but that is so true Cherpep.  However, I think  - I will ask him) that Paul would rather have the machine in the bedroom, and us have more quality time when we are awake.  Mind you, he is a good sleeper, and the PD machine doesn't bother him - so I guess the haemo one won't either - although it looks alike a bit more of a daunting machine eh?
Good thoughts on this thread.

[willowtreewren]

There are several hurdles that we would need to surmount before nocturnal would be a possibility.

In answer to your question about where we do dialysis, Cherpep, we are set up in the very public Den. Carl did not want to be tucked away during those hours... Interesting how folks have different approaches. And they are all valid.

To get to nocturnal we need to get to buttonholes first. This continues to be an issue with Carl, the nurses and the vascular surgeon. Grrrr.

Then we would have to be cleared to do nocturnal with our machine. Several folks are already doing nocturnal with the NxStage, but it is not yet FDA approved for nocturnal, so I imagine our neph would balk.

I'm still hopeful, though. That would return a good portion of the day to normality.

We would need to move our machine into the bedroom. That could be a challenge since our bedroom is not that large. But I'm willing to take on each of these challenges if necessary.

Smile (since the emoticons aren't available today!)

Aleta

[lizabee]

I'm sorry to hear that there are some second thoughts, it's hard not to get your hopes up at the offer.  Good luck, thoughts and prayers, I hope it all works out! 

[willowtreewren]

An official update.

I just heard from our potential donor and she is definitely leaning toward NOT donating. She has been suffering from stress ever since telling us that she was interested.

Carl reminds me that we have things really good. He is SO upbeat about everything. I can't access any smileys with the maintenance going on, but if I could, it would be a thumbs up for Carl.

Aleta