Follow Up

Well, obviously, since I haven’t posted in awhile, that either means I’m really ill and can’t do it, or I’m feeling pretty darn good and don’t have much to report. I’m happy to say, it’s the latter. Until now.

I have finally started to make some arrangements for my 2-year follow-up. Since Dr. Kwan has left the area, and I’ve only heard rumors about a recent hiring in MA, I contacted his old office and was told he had referred me to Dr. D’Angelo, the neurosurgeon who attended to me first at Maine Medical in Portland. In fact, I saw Dr. D’Angelo more than I did Dr. Kwan…he was also the one who gave me my “walking papers” when I was finally released. He sure made me smile THAT day!

Anyway, I have just an appointment to see Dr. D’Angelo in Scarborough, Maine on Sept. 8th where he will then determine the next course of action. Either an MRI or an angiogram and then to determine WHERE all this will be done. I’m hoping it can all be done here in Maine, but we’ll see.

Neurosurgery and Spine Associates

Of course the last couple of weeks I’ve been having headaches, but I think it’s more due to starting to work harder on the catalog and the natural stress that puts on my brain. It’s hard work to think! LOL I find my eyes are very tired at the end of the day…but I have to drive that 30 miles home, so no resting until then. I need to make myself get up from my desk and rest my eyes and brain for 15 minutes in the morning and afternoon. I remember I did that a lot last year….I guess I still need to do it.

I’m already nervous about ANY testing being done, but it probably won’t come for a couple of months yet. I’m glad I’m going to meet with Dr. D’Angelo though. He’s highly regarded in the area and I have great trust in him. He was brutally honest to me in the hospital, and I appreciated that. He didn’t sugar coat the seriousness of my situation and how he really didn’t want to operate on that area of the brain and was very hopeful that Dr. Kwan would come in and do the coiling….I am too.

Things are moving ahead, so I’m glad something has been taken care of. I’m still not happy about no interventional radiologist in Maine though.

Struggling

I am hoping that other survivors will read this post and understand what I’m going through…no one else seems to know.

Last Friday I learned that Dr. Kwan, the man whose handy-work is in my brain, whose hands God guided to very likely save my life, who is the only Dr. who does what he does in the state of Maine….no longer practices medicine. I haven’t officially been informed, but a fellow patient of Dr. Kwan’s heard it from his office.

This is very scary and concerning. If something were to happen to my coiling…I’d have to go to Boston probably. Not that I don’t think they’re qualified, but it wouldn’t be the man I trusted and looked to to help me and guide me. He’s one of my “support team” as my therapist says. Also, since I don’t know WHY he isn’t practicing medicine, I’m a little concerned about the work he did on my brain! How could I not be?

Well, he’s the third of my “support team” to leave me in the last 3/4 of a year. My OBGYN and my neurologist left the state. So now, not only do I have to find two new people to trust, but probably one of the most important people, is gone. I’m very scared.

Add to all of that… I learn on Tuesday that my job is being changed at work.

So, is it any wonder I’m stressed? Is it any wonder I’m so freaking scared about my future, not only at work, but for my health? And now I can’t even get a note from my Dr. who did the coiling to say I need to take some breaks at work. Lovely.

I’m hoping someone out there will understand. My therapist is on vacation and others just don’t seem to get it. I’m really, really, struggling with all of this and there are no easy answers.

Dr. Kwan Be Gone

I received a disturbing email from my friend, and fellow annie survivor, Julie, about the miracle man who performed our coiling procedures.

Apparently, he is no longer at Maine Med, or moved to Mass General, or was fired…..we don’t know yet. I dread finding another Dr. I’m so tired of having to go through my history with so many doctors and I trusted Dr. Kwan very much.

I asked Julie to let me know when she found out more.

Walk For Thought

I had a Dr’s appointment today and the word “Brain” caught my eye on a brochure in the waiting room so I grabbed one. It was a brochure to advertise the Walk For Thought on March 22nd to support the Brain Injury Association of Maine. Something about it just struck me and I wanted to participate in some way.

Well, I had 50 minutes to wait for the Dr., so I decided I’d take the plunge and register for the walk. It’s a 3-5 miles course. I’m not sure I can do the whole thing, at least not without some breaks, but I’m willing to give it a shot to support the kind of programs the the BIAM offer because my recovery could have turned out very different and both Dave and I could have been in great need of their services.

I registered, then sent out some emails to get donations for my walk. I was amazed at the instant generosity by my co-workers. One co-worker reminded me her father had suffered a ruptured brain aneurysm 11 years ago. He’s very different, but he’s alive and is still here for her…others have not been so lucky…so I walk!

I also walk for my cousin Jennifer.