Heart Transplant: Experiencing Cardiac Allograft Vasculopathy (CAV)

Posted by gk3399 @gk3399, Dec 3, 2019

I was just determined to be in initial stages of CAV – Cardiac Allograft Vasculopathy. Are there others in this group who have this condition?

@gk3399, I want to welcome you to the transplant group. I am a liver/kidney transplant recipient and a volunteer with no medical background. I am not familiar with CAV – Cardiac Allograft Vasculopathy. When I looked it up, I read that it can develops after a heart transplant. I would like to bring some members into this conversation.
@glinda, @danab, @estrada53, @fatherscaregiver, @dennisprater, @amynewheart, @mlee1969, @gbcapecod What do you know about CAV – Cardiac Allograft Vasculopathy?

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Hi and welcome to Connect, i am not familiar with this condition I am 2 years post transplant and had to look it up myself so my transplant team has not mentioned this condition to me but i hope the best for you and im here for any other questions you may have.

Dana

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@gk3399 Hi there! I am nearly three years out from my transplant and am always concerned about what can occur in my newly acquired heart and the rest of my body, so I appreciate you bringing this condition to our attention. I had not heard about CAV. Did the doctors or medical personnel explain the diagnosis to you? If it is a developing condition, what are your options for treating it? I hope you continue to post here. My best to you.

Ellen

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I also was diagnosed with CAV, at my one-year tests. It’s scary because my understanding is there isn’t much you can do about it other than wait and hope it doesn’t progress. Sometimes it doesn’t. Sometimes there’s a low level found and it just stays there and doesn’t cause problems … that’s what I’m hoping for! I was switched from Cellcept to Zortress (everolimus), which supposedly helps stall (and possibly even reverse) the progression. I asked my doctor if there was anything else I could do and she said stay healthy – eat (the usual) healthful foods and exercise, etc. I asked about supplements and she said the only one that might help is fish oil, but having said that, that’s only if I’m not eating fatty fish, which provides the same thing.

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@gbcapecod

I also was diagnosed with CAV, at my one-year tests. It’s scary because my understanding is there isn’t much you can do about it other than wait and hope it doesn’t progress. Sometimes it doesn’t. Sometimes there’s a low level found and it just stays there and doesn’t cause problems … that’s what I’m hoping for! I was switched from Cellcept to Zortress (everolimus), which supposedly helps stall (and possibly even reverse) the progression. I asked my doctor if there was anything else I could do and she said stay healthy – eat (the usual) healthful foods and exercise, etc. I asked about supplements and she said the only one that might help is fish oil, but having said that, that’s only if I’m not eating fatty fish, which provides the same thing.

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@gbcapecod, I'm not a heart transplant recipient; I'm liver and kidney transplant recipient. Every year at my annual evaluation, there are labs and protocol tests scheduled to keep check on my liver and kidney. On a side note, I had a progressive liver disease that could return and it would show up in my bile ducts and my labs. The procedures are, I'm sure, different for a heart transplant. What kind of test was given, or how did the doctor discover the CAV? How will they keep it monitored? Will you experience any telltale symptoms?

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@rosemarya

@gbcapecod, I'm not a heart transplant recipient; I'm liver and kidney transplant recipient. Every year at my annual evaluation, there are labs and protocol tests scheduled to keep check on my liver and kidney. On a side note, I had a progressive liver disease that could return and it would show up in my bile ducts and my labs. The procedures are, I'm sure, different for a heart transplant. What kind of test was given, or how did the doctor discover the CAV? How will they keep it monitored? Will you experience any telltale symptoms?

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Cardiac allograft vasculopathy (CAV) is a coronary artery disease, but unlike the common type where plaque clogs the arteries, in this case the lining of the blood vessels starts to thicken and close in. CAV is discovered and monitored with coronary angiography (left heart catheterization), sometimes with the addition of an IVUS (intravascular ultrasound) catheter, usually annually or semi-annually. According to the International Society for Heart and Lung Transplantation, about one-third of patients will be diagnosed with CAV within the first five years after heart transplant. Who gets it is not well understood, but probably often has to do with conditions during surgery (including such things as how quickly the heart perfuses) and might be exacerbated by post-transplant conditions such as rejection or certain infections, such as CMV – that is, mostly things you can't do anything about other than trying to stay healthy. Because the heart is deneverated (nerves cut) at transplant, there is no pain or symptoms, so (gulp!) it presents as silent myocardial ischemia (blockage of blood flow to the heart) leading to heart failure or sudden death. Treatment options are limited. The first step is a change in medications, because some (like everolimus) can help stop the progression. Depending on where in the blood vessel it occurs, it can occasionally be treated with stents or bypass grafting, but if it progresses, generally the only cure is a new heart transplant. Scary stuff, but it doesn't progress in everyone (sometimes even reverses and goes away), and can be monitored at annual check-ups to make sure all stays well. That's always the hope!

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