Rejected from Duke

Never in a million years did I think that Duke would reject Anya for a second transplant because she DIDN’T NEED a liver transplant.  If anything, I figured they’d reject us because she NEEDED a liver transplant.  Anyways, here is the official letter that they sent us:

duke-letter

 

 

I think they’re still worried about the liver pressures being outside of their normal range.  Anya’s measured Hepatic Venous Pressure Gradient (HVPG) range is 6-7 mm Hg; normal is 1-5 mm Hg; full blown portal hypertension (indicative of cirrhosis) is anything greater than or equal to 10 mm Hg.  Anya’s liver is normal enough to not need a liver transplant, but not quite good enough to go through a 2nd lung transplant without also a liver transplant.  At least, that’s what the Duke lung surgeon believes, even though the Duke liver surgeon believes the opposite.  Unfortunately, the Duke lung surgeon makes the final decision, since he’s the one doing the procedure, so he won out.

Another thing that scared them is that Anya’s first liver biopsy, performed down at Duke in March 2014, showed that her HVPG was 16 mm Hg.  In addition, in the liver biopsy itself, “the bridging fibrotic bands focally exhibit nodular contour, suspicious for cirrhosis.”  These two things scared them enough that they’re unwilling to do second transplant on Anya without also doing a liver transplant, which she does not need.


 

So, here we are now.  Anya’s still in the hospital getting treated for a lung infection.  We’re going on #Day15 now.  We should have the results of the bronchoscopy culture by tomorrow, which will tell the doctors the type of mycobacterium that they need to treat.  Right now, they’re giving Anya a few antibiotics that treats all of the types, but they’d like to alter the regimen to only treat the specific mycobacterium that she’s growing in her lungs.  We’ll know the results by tomorrow, and then they’ll alter her meds accordingly.

 

Anya’s doing pretty good.  She’s still in isolation because one of the strains of mycobacterium is Tuberculosis (even though there’s a 0.01% chance of it being that strain), they need to follow the proper protocols until they can officially rule out TB.  Isolation just means that she can’t leave the room without a mask, and anybody entering the room needs to wear a mask.  She’s been in isolation since last Friday.


 

So, what’s next?  Well, the good people over at Duke referred us over to Cleveland Clinic and University of Pittsburgh Medical Center (UPMC).  These two hospitals are not as active as Duke in performing lung transplants, but they are a close second.  I don’t know if we’ll have to go through the full evaluation at these two places, but I think at the very least, they will want to meet with Anya before making any decisions.  These places normally work pretty fast with evaluations, so I imagine that we’ll get a call some time over the next week, and maybe schedule a visit within a month.  That’s my hope, at least.

First things first though, I guess…Anya needs to be released from the hospital.  In addition, she’ll probably need to be on IV antibiotics for several more weeks while at home.

 

9 thoughts on “Rejected from Duke

  1. Leslie Hoover says:

    I still want to yell curse words and say “I never liked Duke” but that would be juvenile. So I’ll remain dignified and say “poop on Duke!” We are all pulling for you! Prayers and hugs!

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