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Author Topic: Tx multilisting  (Read 929 times)
Naynay99
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« on: January 21, 2019, 02:55:47 PM »

Hey. So I had a transplant evaluation about a month ago at a second transplant center.  Contacted them today bc I hadnít 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 Iím 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.  Iím multi listing bc my kidney dr told me to, and Iím 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 havenít 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 canít inagine that I would get much actual sleep, but having extended sessions would probably be a little gentler on the body and maybe I wouldnít 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 donít try as hard to find u a kidney.  I donít think thatís true?  The list doesnít 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 thatís too cynical a view.
Anyway, mutilisting is not for the weak!
thanks for letting me vent.  Take it easy.
« Last Edit: January 21, 2019, 03:02:03 PM by Naynay99 » Logged
Cupcake
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a good year for Chevys

« Reply #1 on: January 21, 2019, 04:41:49 PM »

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.
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PD for 2 years then living donor transplant October 2018.
Simon Dog
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« Reply #2 on: January 21, 2019, 07:40:50 PM »

The only test I had to have redone during my 6.25 years on the list was the cardiac stress test.
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Naynay99
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« Reply #3 on: January 22, 2019, 10:00:08 AM »

Oh thatís good news- I was worried they would make me redo all the tests every year!
And Iím sure u r probably right that they donít hold multilisting against you,
I think Iím 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- itís 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 heís talking about if he recommended me to list at all 3 hospitals.   
Iím currwhtly dealing with my insurance company which is a whole another set of woes.  Ah welll.
Overall I guess Iím 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.
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