Hellow. Call me Hana. I’m 16. Even when I’m still a kid, I knew there’s something wrong with me for the fact that my right is bigger than left but never get the idea that it is a serious one. I got my first operation when I was 3 for the idea that I have a hemangioma below my knee and thought that the doctors can remove a mass but got shocked bec. it was blood that greeted them when they open it up. But they did remove a ‘little’ mass. Not as big as they expected. And it turns out well. But the ‘swelling’ occurs again weeks after.
Then 2010(?) came. The swelling below my knee is already out of hand. It’s too big (maybe because of over playing) and it pains a lot. Someone recommended my parents to visit a hospital that is connected to my condition and there, we learned I have an avm. After my first embolization they told us to come back but a lack of money hold us back to return.
Everything is fine months and years after but then suddenly wounds just pop out. And they said it’s because of poor blood circulation. And when everything is starting to get worse again, we came back. 2013(?). Had another 2 sessions of embolization. (The enlargement below my knee is still there). Until the doctors introduced us to the surgeons. But they said they should study it first 'cause it’s a rare one. They said they will call us if there’s an update but until now 2017, we got none.
It’s not only my AVM that makes our head aches but the wounds occuring because of it making me hard to walk and they even suggested the part with a lot of wounds will be amputated. But my parents disagreed. We tried naturopathy. during that Im bedridden. It worked. My wounds healed after one month. But when my medicines run out, it starts to wound again. The explanation is that, wounds will keep on coming back if the ‘real’ problem inside can’t be fixed. So the problem is really my avm in the first place.
As of now. I have a fistula. Aneurysms. So on. After my last visit at a hospital (not the one where I got embolized) they have a theory that my avm already spread and I already have a problem here at my stomach, and it’s deadly. That amputation is not a good option already.
But suggested some procedure to help my condition to get a little better but you can see at the face of the other doctors that they are puzzled and amazed with my condition. I understand that 'cause it is a rare one. But they need a new angiogram.(bec the old one is when i was 9yrs old) That we should go back to my ‘original’ hospital (where I got embolized) far away from home and even suggested that it is better if I will be operated on that hospital. And they told me to avoid physical activities. Don’t get my foot getting punch or hit at something. Avoid accidents. And my biggest opponent is heart failure. When I heard that word I was like “Seriously? It already came to that point?”
But now. I don’t know already. It’s just so complicated. Im at home right now absent for more than a month, can’t go to school because of these wounds. My mom talked to me if I want to, we will go back in that hospital on summer. That would be next year. But got somewhat scared. I don’t know. It feels like it will be useless or something. I really don’t know what to think. Getting a little scared for what will happen today, tomorrow and so on.
But the good news is that. Im a happy person atleast. Which makes living despite of my avm a lighter one. Because for me, I need to help myself when it comes to ‘emotional pain’. Like there’s more to life. This is not the end. He has a plan and whatever that plan is, I will accept it.
This is my story—though not all stated ofcourse bec. it will take forever. Hahaha. As of now, I’m a vegan to somehow help and clean my blood etc. Wish us all well. And merry xmas.