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.

8 thoughts on “Re-transplant evaluation….continued

  1. Connie McConnell says:

    Dear Anya,
    Your mom and I have been co-workers and friends for many years. She just sent me a message asking me to read your blog. I am sorry that you are once again in need of a transplant. I know that you are a fighter, with amazing strength of spirit. I know you are surrounded by a family that believes in you and loves you with all of their hearts. I know there are many people, many of us you do not know, who are cheering for you. I want you to know that I will keep you in my prayers and close to my heart.
    God bless you Anya and know that you are loved by many.
    Connie

  2. Patrick Shaw says:

    Anya,
    I am so sorry that you need to go through this again. Please know that you will be in our prayers along with our church. Miracles can happen and they do everyday, even if God uses doctors to do it. May God bless you and your family during this process. You have always been a strong lady. I will continue to follow this blog.

    God bless,

    Jimmy

  3. Anya, I am so sorry that have to face all this again, but I know how strong your spirit is and that counts for a lot. Please know that I have you in my prayers continually. Bless you and Mike and your family. Hang tough and know that you have so many people who have you in their hearts and prayers. Love, Sis

  4. Janet Reed says:

    Hi Anya – This is Janet Reed and I have meant to contact you so many times….I live in Woodsfield and have kind of kept up with you from your cousin(?) Merna Betinger. Mike Stoeffel (your second grade teacher?) and I have also discussed you . Ears been burning? – all good. Anyway, we have a lot in common – Cf, graduated from Marietta w/ an education degree, cheered, double-ling transplant. (Mine was 8/10/2002 at The Cleveland Clinic)
    I am so sorry that you are experiencing BOS. Even though I don’t know you, you have been in my prayers many times and I will certainly put you back on my daily prayer list. Keep the faith – stay strong – do whatever it takes! Breathing is a good gig! Would love to hear from you. reedcurves@frontier.com

  5. Susan Spencer says:

    Anya,
    I’m so sorry to learn that you are going through all of this. Thoughts and prayers for you and all your family (especially your Mom).
    Susan Spencer

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