Hey everyone. I’ve shared my story a while ago, and ever since then my symptoms have gotten worse. O2 levels were sitting at around 60 and I couldn’t walk or stand for more than 10 seconds at a time without exhausting myself.
Late September I was officially put on the lung transplant registry in Ontario. November 27th I was called in at 10am as there were lung’s available.
On the morning of the 28th the surgery began. The surgery lasted 8 hours, was extremely successful and there were no complications. I was in the icu for 12 days, and am expected to be discharged by mid-end of next week. Oxygen levels are resting at 95, I can walk, eat, and soon enough will be able to exercise fairly normally.
We received pictures of the old lungs and I still can’t comprehend the sheer amount of avms I could see. I understand that hht is rare, avms in the lungs are rare, and that out of all the patients with pavms I was of the sickest, but if anyone here has a bad case of avms in their lungs, there is lots of hope. As scared as I was going into this, it ended up going greatly, and was much less painful than I imagined. To anyone who needs/will need a transplant due to hht, there’s nothing to be scared of, and you will be ok.
I’m expected to make a full recovery within a couple months, and can finally be normal.
I fully hope this helps someone, and thanks for reading.
That is awesome to hear! Made my day for sure, and wishing you all the continued success. _lease let us know your first time in the gym, huge milestone. But, take it careful!
For those who haven’t considered being a donor, please get on the registry in your province, state, country…my donor card is in my wallet!
Take Care,
John
Hi Toaster, That’s wonderful news. Best wishes, Greg
Wow! Wow! Wow!
That is quite the big operation and fantastic news! I think after the mad, scary time you’ve had you deserve the best possible outcome. I hope everything continues to go exactly the right way.
As they say in the perfume adverts…
YOU’RE WORTH IT.
Well done! 
Richard
During an annual checkup a doctor noticed my lips were blue, so he checked my o2 stats and I was in the high 80s, so I went to a cardiologist, who referred me to the children’s hospital, they did a couple ct scans of the chest with contrast, and saw hundreds of them. They really only found out about the avms and hht with the ct scans.