Tx multilisting

[Naynay99]

Hey. So I had a transplant evaluation about a month ago at a second transplant center.  Contacted them today bc I hadn’t heard anything.  The tx coordinator responded back, saying that I was listed but that they were waiting for insurance approval to activate me.  Which sounds like I’m not really on their list yet?  Idk.  She said I would get a letter in the mail soon. 

I have an evaluation at a third tx center in 2 weeks.  I’m multi listing bc my kidney dr told me to, and I’m sure it does up my chances of getting a call a little bit, but it is a PIA dealing with all these hospitals.   If it was more feasible I would list somewhere far away like FLA, where the wait is shorter, but that could get complicated and expensive, so I am sticking with the Tri state area.   I know just getting on the list is a feat in itself, and that I should be grateful I have that privelege. I need to focus on staying as healthy as possible while waiting for a transplant.  But it is hard to stay positive.  Lately the whole thing is feeling a bit futile and exhausting.   

When my original tx center approved me and I got the letter that I was officially active on ther list, I felt excited and relieved.  Now I just feel dread at having to do this whole evaluation all over again.  And it will be a year in April at my first center so I will have to repeat this crap all over again.  Ugh.  I kind of wish I could just hire somebody else to set up all these tests and appts- I need a personal assistant to keep this all straight!!  especially bc my memory is crap lately. 

Anyway I think I am just whining a bit here of frustration.  I suppose dealing with this stuff is keeping me distracted from obsessing about impending dialysis.   I see my dr in 2 weeks and I know he will want to talk about getting an access.  I still haven’t figured out iif I can manage doing PD or not.  I did look at dialysis centers near me and there is one that does nocturnal hemo dialysis, 9 pm to 5 am 3 x a week or something like that.  I can’t inagine that I would get much actual sleep, but having extended sessions would probably be a little gentler on the body and maybe I wouldn’t feel like crap afterwards.   Idk.  That is a long time to be attached to a machine tho.   I just need to find a modality that will allow me to keep working.

So I got off topic a bit there.   My mom wondered if u are listed at more than one hospital , if they don’t try as hard to find u a kidney.  I don’t think that’s true?  The list doesn’t work like that.  But idk.  I do feel like my primary tx center coordinator was pretty disappointed when I lost my potential live donor, but not sure if that is bc I am losing out or that they are losing out on charging for 2 surgeries.  Maybe that’s too cynical a view.
Anyway, mutilisting is not for the weak!
thanks for letting me vent.  Take it easy.

[Cupcake]

I don't think there is much testing at the one year listing follow up-maybe just a lab or two. Can't remember anything else.

I definitely don't think that transplant centers slack off if you are multi-listed. They are competing for the opportunity to transplant someone, and otherwise healthy young patients make their success rates look great. UNOS manages the distribution so there is no funny business. At least that I thought was the case! Good luck.

[Simon Dog]

The only test I had to have redone during my 6.25 years on the list was the cardiac stress test.

[Naynay99]

Oh that’s good news- I was worried they would make me redo all the tests every year!
And I’m sure u r probably right that they don’t hold multilisting against you,
I think I’m just really tired.  When all i want to do is work and then sleep, all these extra appointments and phone calls and monthly blood samples and crap can seem like more than I can deal with.   

I actually sort of hope I get my tx at this second hospital I am trying to list at- it’s the same surgeon who did my first tx and he sure did give me a good kidney the firsts time around.   But I am sure they r all good and that my nephrologist knows what he’s talking about if he recommended me to list at all 3 hospitals.   
I’m currwhtly dealing with my insurance company which is a whole another set of woes.  Ah welll.
Overall I guess I’m doing okay.  Hanging out steady at a at gfr of 16, hoping to keep it there for a while still. 

Have a good week.  Take care.