As I have searched this support group, I have not seen a lot of info regarding lung AVM. I wanted to share my story with everyone to possibly help those with lung AVMs.
A year ago today, I went under the knife. I did not go under the knife for cosmetic reasons but for a more frightening reason a lung mass. In March 2010, I went to the emergency room for abdominal pain. Although the pain went away, the CT scan revealed abnormalities to my lung. I was to follow up with my doctor and have a full chest CT scan. I met with my doctor who assured me that it was probably nothing, but ordered the chest CT scan nonetheless. This CT scan revealed the same lung abnormalities and a mass about the size of a fifty-cent piece in my lung. I’ll be honest I was scared. I thought the worst thing immediately – Cancer. I kept envisioning myself dying and leaving my husband all alone.
I made an appointment with a pulmonologist at the Mayo Clinic in Jacksonville, Florida. I was happy that such a great hospital was located in my town. I met with the pulmonologist who assured me it was not cancer, but probably something fungal since I have had bronchitis and pneumonia several time throughout my life. He scheduled a bronchoscope the next day.
The bronchoscope procedure was not too bad. They numbed my throat and stuck a tube down it with a camera to view the mass and take a biopsy. During the procedure the mass appeared to be surrounded by inflamed blood vessels so they could not take a biopsy. Instead they swabbed the mass and waited for cultures to grow.
I had to wait several months before learning that the results were inconclusive. This left me with several options. I met with an infectious disease specialist the Doctor House of Mayo Clinic and the pulmonologist. Their thoughts were to wait and see if the mass grew or meet with a cardiothoracic surgeon to have a lung biopsy. J and I decided we would meet with the surgeon and make a decision after that. After meeting with Dr. Richard Agnew, we decided that the surgery was the best option. We would learn what the mass was and I would not be so stressed any more. There was still a concern with the surgery 1) it was surgery which brings a lot of risk and 2) I could lose a portion or my entire right lung depending on the type of mass.
On the day of the surgery, July 23, 2010 my husband, mom, dad, step mom, and aunt arrived at Mayo Clinic for the surgery. The nurse took me back for the surgery prep alone. As I sat waiting for the iv and epidural, I started to get scared. What if I didn’t make it out of the surgery? Had I said my proper goodbyes? Was I happy with my life?
Luckily, I made it out of the surgery just fine (I guess you realized that). The mass was removed and I got to keep my entire lung! That was a shocker. I was diagnosed with arteriovenous malformation (AV Malformation). I spent 6 days in the hospital recovering and another month and half really healing.
I was left with a 7-inch scar on my back and a scar on my stomach from the chest tube. I use to be the girl who got bronchitis 3 or 4 times a year and this year I never got it. I am the healthiest I have ever been.