Questions

[LizAnn]

Good Morning everyone.

I am also a member on the FB page, but because my reciepent is also on FB, I would rather ask you here then there.  My reciepent Jeff, has been waiting for a very long time. We meet through my boyfriend and as in my intro here we are. I know how excited he is to finally have his life back. But my question is this... how do I or can I curb his enthusiasm some. We have had intial blood work and tissue sameple. I still have to have MRI, chest xrays.... all the other things done yet to even see if my kidney is suitable for transplant. We also have his health to consider to. He has gone from 3 dialysis appt a week to 4. He just was in the hospital for water retention in his lungs...  So, here it is.  We still don't know all the answers right now. Again, I KNOW how much this means to him, but he is posting on FB about getting his life back and its going to be soon and has even went and mentioned that its just a matter of picking a surgery date. As I said, I haven't even had my testing done yet.

Do I try to reign him in some?  Or do I let him have hope? I would hate for after all this it just doesn't happen and then he is let down. Not one person in his life til now has even offered to have the tissue match done. He has been on the list a long time, and took it upon himself to find a donor.

Any thoughts would be appreciated.


Liz

[bergstromtori]

I would ask your living donor coordinator for help.  My recipient is exactly the opposite.  We are scheduled for Tuesday and he says that he won't believe it until they are asking him to count backwards from 10.

[dodger]

Liz, Does it bother you?  If not, then let him have hope.  If there is a pothole along the way with poor test results, he will have to deal with that then.  But it sounds like he has had some very down events recently.  I cannot imagine living with this disease and go through what they do day by day.  Diet restrictions, fluid restrictions, all the meds they take, being connected to a machine for how many hours a day and how many times a week.  Well actutally I can, my dear deceased MIL did it for 3 years while in her mid 80's.  Still miss her and it has been 5 years.  She was not a candidate for transplant, bad heart. 

Maybe he just really needs this right now.  He may have the cart before the horse, but then, it is his cart, haha.

Please do talk with your co-ordinator and your appointed advocate to get your feelings sorted out about this as well.  It isn't all about the recipient, you are the one that will make it happen, but, be sure you are truly ready to make the life commitment that follows donation.

[Fr Pat]

     There are probably a lot of different opinions on this, with vey good reasons. But I would tend to suggest that it is wise to make sure he knows that this is hopeful, but NOT a sure thing. A number of things can still happen that would prevent the transplant (or you could just change your mind.) And some transplants fail immediately or in a short time. It is good that he is encouraged now, but if he is counting on this as a sure thing his disappointment IF it fails might be even more devastating.
    best wishes,
       Fr. Pat

[Scott337]

Liz,

I am guessing your potential recipient is simply not aware of how this is affecting you and that although you are a willing and hopeful potential donor, you tend to be a bit more conservative and cautious personality and would prefer he not advertise in such a way on social media or public forums.   Making him aware of your wishes may take care of the issue and I agree with other advice provided relative to it being important to affirm with him that this is cause to be HOPEFUL, just not over confident at this point. 

I hope all works out for you and your potential recipient and thank you for considering such a selfless gift of life for someone else.  My prayers for a positive outcome friend!

Scott   

[LizAnn]

Thanks everyone,
   I know this is a very big deal and he has been waiting a long time. I in no way want to burst his hopes....  somedays reading his posts about this journey make me laugh... he threatens to lock me in a freezer to keep me fresh...  but then I get strawberry icecream too. He talks about how he is gonna have what he calls his "Liz traits" and he is gonna want to pluck his eyebrows and spoon with my man...  I have no problems with him posting his comments,  I do my best to say things like, "well, we still have this to do now" or even "have to wait and see how all the tests look"  I even ask him reguarly if his doctors think he is healthy enough.  Anything just to try and keep us all grounded.

Your remark Fr Pat  "but if he is counting on this as a sure thing his disappointment IF it fails might be even more devastating"  is what I worry about for him.   

[lawphi]

The increase in dialysis treatments is actually good for your recipient.  He will be in far better shape to receive a kidney.

Emotionally, it was so important to me to know that there was a shot at my husband getting a kidney.  All recipients are warned of potential issues that can develop during testing.