Getting Listed?

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5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 12/19/2008 9:53 AM (GMT -7)   
Yesterday my friend, Mary went for an appointment with the transplant doctor.   Here is what he said:   There's no point putting you on the transplant list now with the holidays and anyway, once we do you will probably get a liver within a month because of your blood type.  
 
Here's the background as I see it.  Last summer she went through all of the testing to be listed.   In August she met with the "team" on a Thursday and was told everything was "a go."   They said they would call her on Friday with her MELD score.   They never called and the following week she continued to call the transplant clinic but no calls were returned.   Her medicaid benefits had been stopped we found out because she had been put on SSI  and that she would have to reapply for medicaid.   No one ever confirmed that at the hospital, University of VA Medical Center.   The finance person at UVA explained to her about the medicaid coverage once she finally got hold of him.   She reapplied and is back on a different medicaid plan.  
 
Four months have gone by since that appointment in August.   At that time the transplant dr. told her it would only be about a 6 week wait once she was listed.   Now he says it's a month.   HOWEVER....   no one is talking meld scores.    What is going on?   He told her he would schedule a sonogram for January (I'm not sure why) and to come back in March.    Does this make sense?   She is not married but has lived with her boyfriend for 14 years.   He went with her but is not sure what questions to ask and how to be a good advocate for her.   He is overwhelmed by the care she needs and just trying to maintain himself.  
 
I feel like she is being strung along.   Why would they do a sonogram?   Would that be to look for cancer?   I get the feeling they are leading her on until finally her health is too compromised to receive a transplant.   They were so accommodating all summer and UVA's foundation paid for those tests.   In July she was told that if she passed all tests, she could possibly receive a transplant by October.   That came and went.   She was dealing with getting her medicaid reinstated and the transplant team was no longer responsive to her inquiries.   She's never been listed and is getting these vague answers about how it will all go now.     Does anyone have any idea if this sounds like we are on track?    I am so confused.   Her health continues to deteriorate much like what I've read about here.   It is so hard to watch and be part of.   Thanks for listening.   This forum has been a true godsend to me.  
 
Joan 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/19/2008 1:28 PM (GMT -7)   

Joan, I hope I'm wrong but it sounds to me like it's all financial.  You said that your friend is again on Medicaid, but a different type.  From research I did online yesterday, only regular Medicaid will pay for a transplant, as of July '99.  She needs to see if she can switch to regular Medicaid.  Also, to follow up with the foundation and see if they are on board with helping financially.  I get help from a charity fund at Mayo, but have to reapply every year.  If they plan to do a scan, an MRI or CT scan with contrast would make a lot more sense than a sonogram/ultrasound.  Are you sure you have the right info on what they plan to do in Jan.?  A scan will tell them a lot about her liver's current condition and also if there is cancer.  An ultrasound is more low-tech and can denote masses and other changes, but is not the scan of choice when a person gets to the point of being a transplant candidate, or has/has had cancer...but is much cheaper than the others.

I hope this info helps.  There is some sense to what they said about the holidays.  There's not much regular staff around during the holidays, and unless it's literally a life or death emergency, I don't recommend surgery at that time.  I don't like the gap between the scan and her being seen again, but I know that most transplant centers don't work as quickly and efficiently as Mayo (which has me seeing my hepatologist 4 hours after I have my bloodwork and scans.)

You are such a good friend to be trying to help her.



Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll

Post Edited (hep93) : 12/20/2008 1:09:39 PM (GMT-7)


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 12/20/2008 12:47 PM (GMT -7)   

Dear Connie,

Thanks for your post.   I am trying to be proactive, but not alarmist.   Her information the other day bothered me and your thoughts give a little more concrete to my mix of confusion.   More later.  

Thank you again.

 

Joan

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