Thursday, January 26, 2012

doctors and hospitals are awesome

Blog, I have something to confess... I've been avoiding you.

Let me explain. I've had a lot going on in my personal life and a few months ago I thought I didn't want to include anything too "heavy" or "serious" on my blog. I wanted it to be a place to put my fun and happy memories, and OK, maybe a few rants (give a girl a break.)

Well, to be honest I fear there has been a lot of heavy and serious things happening in my life. I've tried to convince myself otherwise, but it's time to admit and butt is being kicked.

I've mentioned several times a heart disease that I was diagnosed with in Dec 2005. I've mentioned that my little brother passed away because of said heart disease 2 weeks after my wedding. I've mentioned miracles happening where the doctors have said my heart was normal the diagnosis was removed...and times when doctors told me I still had the disease and it was something that wouldn't go away.

Well this month, this year, 2012...all the wrongs are being righted. All the wrongs have been made right already. This last November Matt and I contacted the HCM (Hypertrophic CardioMyopathy) medical clinic up at Stanford University. They were one of 3 universities that studied the genetic disease I may or may-not have had and after much consideration, something just felt right about Stanford.

The head triage nurse, after talking with me and receiving my past medical history and records, told me, "This isn't official or anything...but I can tell you now, based on this information, we will be recommending you get an ICD." I knew what an ICD was because doctors had mentioned them before and my other little brother and Dad (who also have the disease) got one in 2010. She asked when we wanted an appointment, adding there was a sense of urgency, and I told her January...thinking it'd be easier to enjoy the holidays. HA. Oh, what a hoot.

But January finally came and we made our trip up to Stanford. I did a bunch of tests, met a bunch of new doctors and was told (for the bajillionth time) that I did have HCM and I should get an ICD. I can't emphasize enough how amazing the team is that's working with us, with me. For the first time we understand this disease. For the first time I don't have any questions. They, everything short of literally, rolled out the red carpet for us.

That was January 3rd and 4th. It was 2-12 hour days of tests and appointments. Husband and I were on overload, so when they called at the end of January 4th and said they wanted me to come in for surgery on the 11th...I don't know, maybe it was the shock from 8 years of uncertainty finally being put to rest, or the valium they gave me for the MRI...but we agreed and I was scheduled to have surgery a week later.

Almost 2 weeks after that and here I am! Any fears I may have had about getting an ICD are irrelevant and we're starting not just a new chapter in life, but a new book entirely.

I can't even put into words the emotions that have been surfacing over here. It's definitely been hard and is taking some transitioning. But for the first time I see peace in my husbands eyes. He knows that if he can't be with me, I have a "personal paramedic" (that's what my doctors and nurses call my ICD...they even suggested we name it claiming patients who did are more likely to recover better and more quickly. So yes, we are currently thinking of names! :) Suggestions are welcome.) that's watching out for me. He finally has that security that his wife isn't going to "drop dead" like one doctor put it so elegantly...and that feels great!

So yes, we're starting a new book all together this year. A book that doesn't have fear or doubt. A book that allows me to accept and love this life fully. To get attached and put roots in the ground because I know I'm not going anywhere. A life that holds growth and promise. A life with babies and tons of physical activities (well, tons of safe activities anyway.)


  1. Quit avoiding your blog. Glenna I am so glad you guys are getting things figured out. It sounds like you are in good hands and that your husband is taking good care of you. I'm so sorry you are going through all of this!! Keep us updated. And yes, I caught that little hint towards babies. Feel better, please!