HHT with PAVMs and liver AVMs (needing transplant)

Welcome & Help New Member Introductions
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Hi all, I couldn’t find many threads related to liver AVMs but thought I would share my experience, sorry in advance for the waffling.

I’m 29 years old and got diagnosed with HHT in my teens due to my terrible nosebleeds and because I have a family history on my fathers side (I don’t have have much contact and support from them as my dad left when I was young).

I had a couple of tests after my diagnosis but I was told that it was low chance I’d have AVMs, in retrospect I don’t think the doctors I saw were clued up enough to make that assumption. But anyhow I had a fairly normal pregnancy when I was 21, but it was my second pregnancy when I was 27 that things got worse. I was was extremely anemic borderline needing a blood transfusion, blood pressure was low, out if breath, swollen and I kept being sick, all the time. All appeared to be fairly normal pregnancy symptoms but then they said my heart was failing, I had an echo bubble study and ct scans, showed I had lung avms and liver AVMs.

I needed a c section at 29 weeks pregnant. (baby did great after spending 2 months in NICU) I spent 7 months hospitalised and was transferred 150 miles away to hospital specialising in organ transplants. I got told I needed to be assessed for a triple transplant, heart, lungs and liver. This was because the main cause of problems was my liver however they didn’t think my lungs would be strong enough to hold out the operation and they like to transplant lungs and hearts as a set. I only needed a liver transplant in the end (I had some lung AVMs embolized making them strong enough to get through the assessment) but the wait for the organ was horrible, I was waiting for some else to die so I could live and time was running out and I had liver abscesses that were on the verge of bursting. The worst part was that I might not of even made the cut for the transplant list as they only do it if the expected survival rate is high and although there have been transplants for this reason, they are rare so they are unsure of the outcome.

Luckily I had no major problems and going through the transplant is way better than the alternative. It all feels like an awful dream now.

Thank you for listening to my story. I have an appointment with a HHT centre of excellence soon so looking forward to that and I hope to ask about anywhere else I should be checked for AVMs. I think waiting for symptoms approach is too little to late, you think something like this will never happen to you and it’s just nosebleeds the next moment your life is turned upside down.

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Alicja,

Welcome! Wow! You have been through a LOT. I agree the advice on likelihood of AVMs being low was misguided.

We have very few HHT and PAVM members but do join the @PulmonaryHeartHHT group and you guys can learn stuff from each other.

It would be very helpful to HHT members to know about any HHT centre of excellence so do share any details of that and do tell us how you get on. Thank you for joining and helping others!

Very best wishes

Richard

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Hi Richard,
I joined the PAVM group.
I don’t understand how to see posts from others or if I am supposed to message the individuals?
Thank you,
Robin

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Once you’ve joined one of the “specialist” groups, you will get notifications when another group member creates a new Topic. If you then correspond in that topic, you get updates in that topic. Otherwise, you’ll just get the first post notification. I’ve only set this notification behaviour in the more specialist groups. I’ve not set it in the Brain groups as I think it would inundate people.

If you use an at-tag, for example if we had a group called @Comedians, then members would get notified of that Post. This behaviour works for all groups but should be used wisely, as it can become annoying. If this starts to cause an issue for you, you can leave a group. If someone regularly writes to all members of a group using this method, I, as a moderator, will step in and may remove groups or remove people from groups.

If you were a member of the PulmonaryHeartHHT group before I made my post above, you should have been notified of my post. Do tell me if it works! Do tell me if it doesn’t! I’m a Brain member, so I don’t know if it works!

To see the whole conversation, follow the Visit Topic link in your email.

Best wishes,

Richard

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I joined the group after your first message. I haven’t received any notifications as of yet.
Great work, Mr. Moderator. That title should be a Superhero title.
Robin
:joy::+1:t2::wink:

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Ok. I’ve looked and the notifications appear when you click on you icon or “avatar”, in your case, the blue R on the right hand side of the green banner across the page. Click on that and there are a number of notifications you’ve not seen or read.

I’m not sure it sends an email for @ group mention. Whether the system sendso you an email when there is an @ yourname mention, is a setting under preferences > email.

… so it about half works…

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Thanks