Give it to someone who will get a lifetime from it!

[stringbandbeth]

I'm annoyed and sad. The Yale transplant team is calling again trying to put Bear on the transplant list again. He has explained to them over and over that there is an 85% chance that he would lose a new graft within the first year. He only qualifies for a Hep C kidney. The Hep C genotype he has is the rarest one and he doesn't want 2 strains of hep! He cannot be treated for it (interferon almost killed him) . If he goes on the transplant drugs he will end up loosing his liver. The Sarcoidosis is now in his heart also....So thanks but please save the kidneys for someone  who's life would actually be improved by it.    His Neph's/ cardiologists/ and all the other fancy Yale Docs think He made the right decision and that his long term prognosis is actually a lot better on Home Hemo.   It almost makes me angry that the Transplant team insists on making him justify his medical decisions every 6 moths or so ! they have his records and they Know he is not going to get better. Next time the calls come in I'm going to get on the line and give them a earful. Making him go over it again and again is almost emotionally abusive.   
             Sorry...thats my rant for the week.

[MooseMom]

Do you think it might be an idea to call them NOW and ask them to not call again, that if your husband changes his mind, he'll let them know?  And then follow up with a letter so that you will have something in writing outlining details of your phone conversation.  There is no need to subject yourselves to this if you can stop it now.

[lmunchkin]

Beth, it is so hard to watch our loved ones go through all this crap! I got you there, gal.  The sad thing is, there is not a darn thing we can do about it. All we can do is try to see them through this the best we can.  Yes, we do get aggravated sometimes cause it is all placed on our shoulders because of this disease.  They didn't ask for this and neither did we, but sometimes it just gets so dad blame hard to juggle.

I will tell you that John the past 2 years has settled in nicely since doing NxStage.  It can be overwhelming, but when I look back, it has gotten better for not only him, but me too.  Im just too determined to not let this affect our lifes.  And more importantly, I rely heavily on my faith.  That is a huge thing with me.  Sometimes Im so exhausted that I could collapse, but I pick myself up and start the next day energized.  What happened yesterday is just that, "Yesterday".  Its done & gone!

I know you love your husband.  You are still with him through all his trials and you are to be commended. This is not easy for us spouses & at times can be so difficult!  But we love our men unconditionally.  They were not this way when we married them and this unfortunately has changed their lives too!  I just look at my husband, and I think back to the good times we had.  We have a good marriage and we are so Blessed.  I could not imagine leaving him.  I know if it were me, he wouldnt leave!  The bond is too strong!

I guess I got off course here, but just want you to know, You are not alone here!  And I will keep you & Bear in my thoughts & prayers!  Hope things at least settle down a bit for you both.  Of course, the Doctors arent no help either, grrrrh!

God Bless,
lmunchkin

P.S. I read your other thread about getting pay for what we do for our loved ones.  You are right, we are doing all things necessary, but not
       the pay.  But at least we are at home and spending time with them, and sometimes, that is more than enough pay!  Time is so precious
       and we need to embrace it.  Take care Beth, I know this is a hard thing you are going through.  Just hang in there dear!