Left Pulmonary AVM Ruptured during Labour

Hi everyone my name’s Tash I’m a 31 year old Wife Mother to 2 beautiful girls 4 & 3months and caregiver. So here’s my story… On the 1st June 2017 I went into labour with my daughter, I had just began to push when i started getting terrible chest pains… I recall saying I’m having a heart attack. The midwife tried to reassure me that I was fine and to carry on pushing. I couldn’t. The pain was terrible, i couldn’t breathe and started to panic. Saying I’m going to die I’m going to die. Tell my family I love them. It was meant to be the best experience of my life bringing my beautiful girl into the world. But instead I ended up fighting for my life.
When they eventually listened to me. I recall having a room full of Drs nurses midwives all talking at once and I didn’t know what was happening. Still in labour I was having chest x-rays and examinations. Next thing I know I’ve had an epidural and I’m being assisted with forceps to help deliver my baby girl. They showed her to me before rushing her off in a ventilator to NICU as they were concerned about the lack of oxygen to her brain… I was taken for a CT scan which showed a left PAVM that had ruptured causing my chest cavity to fill 3 quarters with blood and my lung to collapse.Whilst led in recovery a plan was being put in place for me to travel an hour to another hospital where an interventional radiologist could operate. Unbenown to me though my family had been told to get photos of me with my baby as they didn’t think I’d make it. I was shown my baby on a little tv screen in NICU and it was agreed I would be taken past to see her on my way to the ambulance.
So I had the operation. It was successful in stopping the bleed but they found 2 more on the opposite lung. I spent 4 weeks in Intensive Care having more operations on the opposite PAVMs so they didn’t rupture. 4 chest drains to remove the blood which didn’t work. I was transferred to another hospital to have a vacuum suction in my chest to remove rest of blood. But then they found a massive pulmonary Embolism on right lung so the operation was very dangerous. This time I knew I had to say my goodbyes. And the thought of never seeing my babys grow up broke me… So it was the worst experience of my life. But I had to fight to get through it. I had a newborn baby that needed me. And another daughter and husband. That’s what got me through everyday. I’ve been home 2 and a half months now. I’m back to everyday life but it’s hard. I’m still in alot of pain and get tired quickly but I push through. Still back and forth to the hospitals and now they want to test me for HHT. I hope to God I don’t have this as it’s hereditary and I can’t bare the thought of my girls having to go through any of this. I’m so scared everyday. When I get a pain or if I feel unwell… I know I need counselling. I don’t think I will ever live the way I did before this happened. I’ve just got to be here for my girls. Thanks for reading. Sorry if I went on.

Oh my goodness you poor thing that sounds so scary -!! Thank God they finally listened!

From my experiences and reading about others , it seems as if health care professionals always want to automatically assume it can’t be something rare or different so they want to brush it off. Drives you crazy. I’m glad you are still here and made it!

I’m glad you are here too, and the doctors finally listened to you. You went through so much in such a short time. After going through all this you won’t ever be quite the same again, but you’ve found an inner strength you didn’t know you had before. It keeps you going for your girls, your family, for yourself.

Being here is kind of like a form of counseling, we’ve all been there in one form or another, so we understand. You can vent, lean on us, ask questions (there is no such thing as a stupid question except the one that isn’t asked), it’s okay. It’s also okay to be a bit scared, after going through all that you did who wouldn’t be? I know I would. Research, learn about your conditions, how they’re managed and treated…knowledge can be a very powerful weapon against fear. It’s the unknown that’s worse, at least it is for me.

I know it’s scary. Thank you. Sorry still getting used to this site. Thank you both for your comments. Can I ask have you both been diagnosed also?

Tasha,

Oh my goodness! That is one hell of an experience!

I think I admitted you to the community last month and added you to the PAVM group but your bio didn’t give as much of your story as this!! I think you’ve done fantastically well to get through all that – fantastically well done!

I hope the hospitals can sort you out so youre more comfortable… and that you get a negative on the HHT!

Very, very best wishes!

Richard

Hi Richard,

Thanks for the admission.
I was told by everyone whilst in the hospital this is the first case they have ever seen. I had to sign a disclaimer as I agreed for them to write it up in the medical books with images.
Good news I had a chest x-ray today and my left lung is looking loads better. But they have now found a heart murmur so I need to have tests done for this now too…
I’m just so thankful that I’m here… If this didn’t happen whilst I was in hospital in labour… There is no doubting I wouldn’t be here today to tell my story.

Hi Tasha

My heart goes out to you. I had a large PAVM in my right lung and had some dramatic experiences but nothing compared to yours. I was one of (I think) two people in our whole little country of 4 million who had been diagnosed with PAVM at that time. I had the interesting experience of repeatedly having to explain to uncomprehending medical staff what was wrong with me.

If it’s any consolation, there are very good tools for managing and treating PAVM and now that the immediate emergency is over I’m sure they will get on to that. My PAVM was discrete but too large to embolise, so they surgically removed the offending part of my lung. So now I’m PAVM free, but I stay in contact with this community in the hope that I can offer some support and the benefit of what I learned through my own experience.

With multiple PAVMs in both lungs a different treatment will be necessary. I admire your determination to keep going for your family.

Best wishes, Kate

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Tash: First I’d like to welcome you to our support group. Secondly, reading your story makes me know once again, that there is a God! I pray that your recovery is successful so that you can continue to be the mother your 2 girls need and deserve. You have been through a lot! My heart goes out to you and your family. Wishing you all the best.

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Thank you for your kind words Sharon.
There definately is a God and they were watching over me that day and alot of days after too. I hope this continues for me on my road to recovery and on the day of all my tests.x

I have since been diagnosed with HHT.

Tasha,

Couple of thoughts, if I may…

  1. To quote Hugh Grant in Four Weddings… “B**ger”.
  2. I think you’re such a fighter, you’ll get through this pretty good. I can’t believe what you’ve managed to do. I think you’re amazing.

I wouldn’t mind you telling me what the HHT test is… is it just a gene pattern that they know what it is? Is it an autosomal dominant thing, or what? It could be really helpful to understand a bit about it.

Many thanks… and very very best wishes.

Richard