Diagnosed with PAVM and feel lost!

Hi all

I am new to this site, I have been trying to read as much as I can regarding PAVM (avm of lungs) and HHT but still feel lost.

I was diagnosed May 2017 but doctors still need to confirm whether or not I have HHT. However my paternal Grandma, my dad, brother and sister all have had nosebleeds since I can remember. My sister also was diagnosed with a PAVM December 2017 and had her embolization done.

I need to know if I get my PAVM treated are there any chances of it coming back somewhere else in my body or in lungs.

I am scared and have stopped living basically and have accepted that I am not normal or same as everyone else. even though people are going through worst situations but finding something with one’s own self really messes up everything in life, at least in my case!

Thanks for taking the time to read.

P

Hi,

@Kate_R had a PAVM and is in NZ if I remember rightly.

Kate, any experience you can share?

Richard

Thought no 2…

HHT brings with it a tendency to have multiple AVMs in certain organs. However, if you have one in your lung and get it fixed, I don’t believe it would reappear somewhere else: it’s not like squeezing a balloon. However, if you have HIT, and it sounds very likely from the information you’ve shared, then it is possible that you may have AVMs in other places as well.

I’ve joined you into the @PulmonaryHeartHHT group, so other members of the group who are active on the site can perhaps contribute.

HHT is a difficult condition to have but you are not alone here.

Hope this helps,

Richard

Hi - and thanks for referring me Richard.

I had a PAVM without HHT so I’m not sure how much help I can be. From your family history does sound as if HHT might be a factor for you, although as you say it hasn’t been confirmed. My AVM was large and complex and removed by surgery (lobectomy) rather than embolization as it was thought that embolization would not be effective. They performed an angiogram which looked for AVMs in other parts of my body (particularly brain) and found nothing.

It’s important that you get it treated. They are dangerous to leave - and as Richard says, the treatment itself doesn’t cause additional AVMs to appear - but it’s worth having further investigations to check for other ones if you haven’t already done that.

It does feel a little lonely to be a person with a rare condition - when I was diagnosed I think I was one of two people in our whole country of 4.5 million with a PAVM! The other thing that I found frustrating was that most medical professionals know little about AVMs in general and even less about PAVMs in particular - so on some occasions they were poorly prepared for me and at other times I was educating them. It’s really important that you learn as much as you can about PAVMs, seek clarity from your doctors and second opinions where necessary.

And try to stop them from panicking when they find your oxygen sats are lower than average!!! :slight_smile:

If you get it treated I’m sure you will start to feel happier and more in control. Maybe think of it as taking control of your AVM rather than letting it control you.

I wish you all the best. Please reply to this or message me if there is anything I can support you with.

Kia kaha (“be strong” in Maori)

Kate

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Thanks so much Richard & Kate.

It has almost been a year since I was first diagnosed and the doctors still have no idea what needs to be done next. The PAVM that I have is quite large and the wait to see a specialist under public health system in Australia is crazy long.

I am seeing a heamotologist in April and he will be referring me to a genetic specialist and then they will figure out what they can do for me. Meanwhile I am stressing out and losing my sleep. Anyways I have a had a brain MRI and they couldn’t find anything there but I am not sure if I can develop one in my brain later on.

Thanks Richard for referring me to PulmonaryHeart HHT, it really helps when people like yourself and Kate take time out of their lives to care and share their knowledge to make people like me feel better:smile:

Kate, I will try to stay strong but there are times when I completely lose hope and feel isolated but I will keep going.

Thanks guys
P

Our pleasure!

Do you think the Aus health service guys could consult Kate’s doc re you? Might be worth getting details swapped. You’re both pretty rare and Aus and NZ are not so far apart.

Richard

Hi P,
I had a PAVM rupture during labour last year, you probably read my story…
I had a genetic test which came back a fortnight ago confirming I have HHT… Since then my eldest daughter who is 4 is now showing the same symptoms I had growing up. So although what I went through was horrific we now know and the correct treatment can be given to my girls if need be. I was in a really bad place after the birth of my daughter and a long stay in Intensive care. I had all my PAVMs embolised. I feel good now considering… Try not to stress too much and put any more stress on your body. Good luck. I’m happy to talk if you want to.

Tash

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Thanks for your response Richard & Tash

Richard, thats a great idea! I will have to get doctor’s details off Kate and ask my doctor if he is happy to speak with Kate’s doctor.

Tash, I am so sorry to hear that your daughter is showing the symptoms and that you were tested positive for HHT. But sound like a very strong person and mommy and its so good to get to know people like you. I am newlywed and since finding out about my rare condition I feel very low all the time and I am so scared of falling pregnent. I will have to get PAVM coiled before I plan my pregnancy anyways but still I have lost my mojo for absolutely everything. I feel like a faulty piece and I have so much anger. Sorry I am venting non stop but no one seems to get what I am going through and I have always been a very sensitive person.

P

Do find out Kate’s doctors’ names. I’m sure it would be better to have the docs swap details and have your op in Australia but New Zealand is a beautiful place… it could be you have a bit of a holiday in NZ courtesy of the health service!

Tash’s story is horrific but by golly she is strong! It is definitely important to have your PAVM sorted pre childbirth, or have a section rather than go through delivery.

Tash, I’m sorry you got an HHT diagnosis and about your daughter but it sounds like you look upon it as something you can deal with, which is great. It is equally interesting that you had signs as a child: what sort of signs are there?

I’m glad you three have managed to meet through here.

Very best wishes

Richard