These last couple of months have been long ones to say the very least. On Tuesday, October 6, 2015 my grandfather passed away. This was very unexpected for all of us, and we were all very upset by it to say the least. This meant me getting in the car and driving 4 hours to be there with my mother and my siblings who also took the trip to be there. Jay-Are and Bug stayed home so that they could maintain some semblance of normality for her. Jay-Are also needed to rest up some as Thursday, October 8 he was scheduled to have his pulmonary AVM's embolized (plugged). By Wednesday evening I was back home after a very emotionally draining
couple of days, ready (or as ready as we could be) for Thursday morning
and Jay-Are's procedure.
Around 40% of people with HHT have AVMs in their lungs (these are known as pulmonary AVM's or PAVM for short). PAVMs, are at risk of rupturing if
blood volume increases for any reason. This can be life-threatening as you can essentially bleed out. There are also additional concerns with untreated PAVM's. In a normal lung, your arteries get smaller and smaller as they go deeper into your lung, and at the ends there are capillaries that join the arteries and veins. Capillaries have many important functions like gathering oxygen from the blood as well as filtering out things like blood clots, bacteria and air bubbles. In people with PAVM's the capillaries are missing and the artery connects directly to the vein, meaning there is a higher risk of blood clots and bacteria getting to the brain which can then cause a stroke or a brain abscess. The good thing is that, PAVMs are almost always easily treatable. Bug had a similar procedure done in June for her PAVM, so we knew what to expect.
On Thursday, we had to be there by 6am, so that meant getting up and around about 4:30am or so in order to get everyone ready and out the door. Bug and I dropped Jay-Are off at the hospital and in an attempt to get her to sleep a little more before school we went back home. Needless to say, she did not go back to sleep...go figure. Off to school we went and on with our day, waiting and waiting for news of Jay-Are's status. By noon I had picked Bug up from preschool and still hadn't heard anything from the hospital, so we headed on over!
When we got to the hospital we checked in to the waiting room only to find out that Jay-Are was STILL in the procedure. It had been 4 hours at that point, so naturally I was a little concerned, but the nurses told me he was doing well, so Bug and I decided to go wander around the hospital while we waited. About another 30 minutes or so and we got called back up to the waiting room to wait to hear from the surgeon.
The surgeon that conducted the embolization was the same one that had done Bug's, so we already knew he would do a good job. When he came in to meet with us he let us know that the procedure had gone well, it just took a lot longer than he had originally anticipated. Basically you can't really tell how long it will take or how easy it will be to get to the PAVM's until you get in there. Jay-Are had 2 large PAVM's that needed to be plugged, the first one took almost 4 hours to get to as they had to try a few different routes to get to it. The second one took about 15 min as it was a straight shot.
After a short stay and some rest by the next day he was doing well and ready to go home! For the most part everything has been going great since then, unfortunately Jay-Are's O2 stats didn't go up as much as Bug's did, but still all seems to be well. Since then we have been back to see the Pulmonary specialist and for now we are set!
For more information about Pulmonary AVM's and HHT: http://curehht.org/about-hht/symptoms/
