Im pregnant with lung PAVM and im terrified:(((


I was diagnosed with a lung AVM in 2005, it was a horrendous experience, almost out of a dream that you would never imagine. It started in jan 05, I remember waking up to go to work, went in the bathroom and suddenly my right arm just flopped to the side and went completely numb, i was terrified. I managed to go into work but the whole day it felt weak and was a struggle. I decided than to go into a&e (im based in UK, London btw) the doctor at the hospital diagnosed me with carpal tunnel syndrome and gave me a wrist support band. So anyways I was using this for some time but my symptoms were not improving, instead it kept getting worse. I started feeling extreme fatigue, some times breathless, lacked in energy, so I decided to pay another trip to the hospital and they did a chest x-ray and the doctor was saying how they x-ray looked abnormal and they could see a black dot and thought it could possibly be pneumonia or tb. I was than referred to the chest clinic where they did further tests but it came negative for tb. The doctor than recommended a CT scan of the lungs and that’s when they discovered I had an AVM in my lung. When the doctor told me this I felt terrified, I had no idea what this meant, the doctor said I would need to be treated for it and it was nothing to worry about. This reassured me only to go onto realise it wasn’t very reassuring as it was something to worry about as the next few months proved. My condition became much more worse, the countless times I went to a&e, only to be told I was ok and came back home feeling even more depressed. It was probably the lowest time in my life, I felt extreme depression, lonely, hurt, angry, lots of emotions mixed into one, I just wanted to feel better, normal. I couldn’t concentrate, my condition was debilitating, I felt disabled, I didn’t like going out, wanted to stay indoors in bed. I was suffering from chronic fatigue, weakness of the muscles, pain in my chest, couldn’t walk much, everything felt a struggle. I was devastated, than one day I suddenly felt very sick than usual, I was gasping for breath, and kept telling my mom I’m going to die call the ambulance quickly, luckily my brotherin-law came to my house and he took me to hospital, this time the doctor took blood from my pulse which was very painful and said my oxygen was very low and they decided to keep me in. By than it was September, I went onto stay in hospital for 3 weeks, they had embolize me twice as they couldn’t do it the first time, I had a coil inserted in my right lung. I had to stay lying flat for 6 hours after the surgery, it felt like my whole life had been turned upside down. After the procedure my oxygen improved dramatically, I came home after a 3 weeks ordeal. So life went on but I was still feeling unwell, I was than referred to another hospital and there they specialize in HHT, the condition that I have, I wish I had just been there from the start as the other hospital were quite clueless on AVM and gave me misleading information. I saw Dr. Shovlin and she is a great doctor, she comforted me loads and her words were very reassuring, she was an expertise in this field. I had to have another embolization as there was still avm left, so I had to stay for 2 nights and get that embolized. After this procedure I did feel better but some time my right lung hurt, and it feels heavy, I can feel something there, I know life may never be the same and my body may never feel the same. So skipping 6 years on im married and expecting my first baby, and I am very scared, I broke down yesterday and cried my heart out, Iv read on several websites that lung AVM during pregnancy can be life threatening, some women have died from it, im soooo scared now and praying nothing happens, its horrible living in constant fear

Hi Rose1983. There is a sub-group here you may wish to join…

Hi Rose how are you doing? My name is Joana and I to have a lung avm...i am 6 weeks pregnant and am so scared myself? Any advise?

Hi, Joana, congratulations on your pregnancy. It is very important that your ob-gyn communicate with your AVM doctor, as your ob-gyn will need to understand how the AVM might affect your pregnancy.

With pavm, there is a moderately increased risk of hemothorax during the second half of the pregnancy. (Hemothorax is blood collecting between the lung and the chest wall.) You will want to learn the symptoms of hemothorax inside and out, so that you can recognize if it is occurring. If there is a plan in place to deal with this, you will feel better and more prepared.

Also, your AVM doctor should weigh in on the decision of natural birth vs. C section, or delivering at 38 weeks instead of 40, or exercising during pregnancy, etc. Planning and preparation can help minimize your risk and make this the best possible experience for you.

info on symptoms of hemothorax:
article with info on pavm and pregnancy:

Rose and Joanna, please be sure to send updates, especially when your children are born. Any information you provide will be much appreciated by other women with AVMs thinking about pregnancy. Best wishes!

Great info DancerMom!

Congrats to both ladies on their pregnancies.

Try to arm yourself with the best info possible, take care and listen to your bodies.

Best wishes,
Ron, KS