The Waiting Game…

Cindy, our transplant coordinator emailed us on Tuesday.  She said that Dr. Berg, the liver doctor, agreed that Anya is definitely going to need a double lung retransplant and a liver transplant. We were kinda holding out hope that Anya wasn’t going to need the liver transplant, but the CT scan of her liver confirmed that the liver would probably not be able to endure the rigors of the double lung retransplant.  Ugghhh…

The good news is that we now know what needs to be done.  The bad news is that the multiple organ transplant is going to be a lot more difficult to perform, which increases the risks of the operation.  With that said, if I had to pick someone to face this fight, Anya would be that person, as she is one of the strongest people that I know.  She is a fighter.

The waiting game continues.  Dr. Berg and the lung team are going to meet in the next week or two to go over this complex transplant.  There is a chance that they will not take this on.  We’ve done everything possible on our side to give them no reason to not take this on, so we are hoping for the best.  We’ll know more in a week or two.

Re-transplant evaluation….continued

On Wednesday, April 16, we headed back down to Durham for Thursday’s appointment with Dr. Carl Berg, the head of Duke’s liver department.  Crazy to think that in a little over a month, we’ve been to Durham and back three times, but such is the case when you’re looking for solutions on how to save your life!  Unlike our last visit at the end of March for the week-long evaluation, this trip was quick and (literally) painless.

Our appointment was scheduled for 10:30 yesterday morning, and by 10:35, we were already in a room.  Dr. Berg came in shortly after, greeting us with a cheerful handshake.  He asked several questions about the condition of my liver leading up to my first transplant.  From what I recall, I had a liver biopsy in either 2007 or 2008, and at that time the liver specialist claimed I was the first case of cystic fibrosis induced liver disease that he had seen. However, and from my perspective, the damage was minimal, deeming me eligible for my first transplant.

Fast forward six years, and the story is a little different.  This time around, not only are my lungs in need of replacement, but my liver may be, too.  Periodic lab work over the years has shown elevated liver function that was typically the result of taking anti-fungal medications like voriconazale or posaconazole.  Once discontinued, my liver enzyme levels would return to normal within a week or so.  But since my last hospital stay in November of 2013, my LFTs have remained elevated.  Though Dr. Berg stated yesterday that the levels are “not off the charts,” they are of high enough concern that Duke is taking a very close look at my liver’s physiology to determine just how damaged it is and if a re-transplant of the lungs is at all possible without transplanting the liver.  In addition to the biopsy Duke performed on March 25th, yesterday Dr. Berg ordered a liver CT with contrast to help him and his team make that determination.

We should know more in a couple of weeks.

Double Lung Transplant – Eligibility

As soon as Anya was diagnosed with chronic rejection (Bronchiolitis Obliterans Syndrome) in July 2012, we made an appointment down to Duke University Medical Center to see if there was anything they could do to help, or even get the process started for retransplantation.  We had read about Campath and RAT-G as treatment options for chronic rejection, so we wanted to see if they could perhaps give Anya this treatment.

At that time, the only thing that we really knew about chronic rejection was that there was no known cure.  However, with that said, we found documented transplant patients that have been in chronic rejection for over ten years.  The idea was to slow it’s progression with treatment.

After going through the week long Duke evaluation in July 2012, the pulmonary doctor told us that he didn’t think Campath was a good idea, since the stats on Campath were still debatable.  We agreed, so he sent us home.  The Duke team decided that Anya was not eligible for retransplant yet.

So, what makes a transplant patient eligible for retransplant?  Or even a first time transplant patient eligible for their first transplant?  Well, that’s a tough question, since there are many diseases associated with the lungs.  I can only speak to Cystic Fibrosis and our experience with the retransplant process.

In July 2012, Anya’s FEV1 was around 38%.  She had dropped from 100% in November 2011 to the 38% roughly 8 months later.  From what I understand, the FEV1 is just one of the measurements that Duke uses to determine whether a patient is eligible for transplant or not.  Below 30% FEV1 is the rough number that makes someone eligible.

Another measurement that Duke uses was something called the DLCO (carbon monoxide diffusion capacity).  I don’t know what Anya’s DLCO was in July 2012, but in March 2014, it was roughly 53%.  Based on this document online, Anya’s DLCO was in the moderate range:

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I think anything above 50% and the patient’s 5 year survival rate is greatly diminished.  If your DLCO is in the mild range, then it also hinders your transplant eligibility.

Another eligibility factor is the type of disease in the patient.  I met a few pulmonary fibrosis patients while at Duke, and their disease was progressing so fast that they didn’t think that they were going to be eligible for a transplant.

And the last requirement that I know about is age.  I was told that patients over the age of 65 were not eligible for a double lung transplant.  I don’t know how accurate this is because the former Vice President, Dick Cheney, received a heart transplant at the age of 71.  However, I did read something recently about Duke accepting “select” patients over the age of 65, even over 70 years old.

Most of the stuff above is stuff that I picked up from the Doctors at Duke.  I don’t think that there are any definitive numbers for transplant eligibility, just guidelines.  Obviously, a lot has to do with the current health of the patient, and whether or not the doctors think that the patient will be able to survive the transplant.

The best thing to do is to schedule an appointment with one of the big Lung transplant centers around the country.  I’ve gathered some information about transplant eligibility across the different lung transplant centers in the United States:

Not all centers are the same, but at Duke, it was a week long evaluation.  Then, the following Tuesday, they contact you and tell you if you meet the eligibility requirements or not.