Tuesday, November 16, 2010

The Beginning Of My Journey Into Disability & New Life Lessons

On May 7th I was putting my paint gear in my 

car to go work, and I started to feel like something
was wrong, and I quickly put all my gear away
and drove to a local friends house, and she
asked me if I wanted her to call 911, and I
said yes, and thats the last thing I remember
for 2.5 weeks...

Apparently I was taken by ambulance to the local
hospital, and my freind and girlfriend saw me there, 
and told me I was screaming about the pain I was in, 
and how I didn't want to die...I dont remember a thing!

After strapping me down and taking X-rays of me, 
it was determined that I had a "Aortic Dissection", 
or a burst aneurysm, and that they would send the 
x-rays to Baystate Hospital in Springfield MA, approx 
40 mins away, and the heart surgery team headed by
Dr Joseph Flack, (the best) would be ready for me there....

After 14 hours of surgery, I was put in a coma,
and woke up in the ICU two weeks later with pneumonia, 
hand tremors from lack of oxygen to the brain, and they 
replaced my aortic arch, which had split and burst...and they
fixed my Mitral valve while they were in there as well.

...and I also had a blood parasite called Serratia,
which required me to stay in the hospital for 30 days to get 
an antibiotic....I stayed in the hospital altogether 50 days!

After I went home for two months, I had developed
pain in my lower back, and after another CAT Scan,
I was told I had to go right in and go through my
left side ribs, and replace more aorta with plastic pipe...
apparently my aorta below the second repair had 
enlarged too rapidly, and it had to be replaced 
before it burst as well

Another 15 hours of surgery.....

After 7 days I went home, only to wait another two months
finally going to rehab, and couldnt keep my left foot in
the bike stirrup, I called the nurse over to help me, and
when I spoke to her the left side of my mouth was drooping,
and my speech was slurred....

Before I knew it I was strapped into a gurney and off
to the emergency room, for a series of tests which revealed
that my brain remained healthy, that I had a slight stroke called
a TIA, or a Transient Ischemic Attack

That was another night ambulanced to Springfield....luckily the
cardiac rehab was on the same floor as the ER at Franklin !

Now, a week later, I find out at the cardiologist that my
aorta has swollen again below the second repair.....another

Its because I have connective tissue disease, (like Marfans but not
Marfans) and its congenital. The arteries swell and weaken because 
of high blood pressure.

You know....even though I'm home all week, Ive been getting out
every Thursday night and practicing in the band I'm in, slowly
but surely I'm still playing music....as a matter of fact the local
musicians around here held a benefit for me...

Id been in all 4 bands one way or another that played that day...

My car is off the road, and they come and get my amp for me
to carry it to the gig....but luckily I'm still able to play music,
the love of my life.....

Ive applied for SSI, and am getting state aid, though paltry,
not enough to live on at all...

I just cant imagine more pain, just as this is finally subsiding,
more hospital, more needles, and more crying for 2 to 4 weeks
of post op depression.....Im seeing a counselor to process all
that Ive been through..

Hopefully, this blog will be a repository of  hope, life lessons, 
and sharing with others who have similar experiences, especially 
those with heart and connective tissue disease...although I 
want to hear from anybody that is suffering, to share my 
consolation and encouragement along the way!


  1. Wow dude, I can not imagine what you have been through. My sister-in-law had a burst aneurysm in her brain and it has just been a year and a month ago that she went through all that. She lost about 6 months that she can not remember.

    She had surgery after having a stroke and they gave her a 10% chance of making it. She made it but by the time she got home she had MRSA and they had to do another brain surgery to get out all the infection. She is now on SSI. It has been really hard for her and for us, her family, to watch a proud and beautiful woman be reduced to almost infant status. But she is getting better and regaining her life inch by inch.

    I am glad you have music to help heal you. Music is magical like that I think.

  2. i had been throught that experiences from family, always keep happy not easy unless you find out the answers from battles deep inside of you, i wish you can find answers from speech arranged to books, cause i did,have a peace mind always my friend, sorry i gotta off line soon, things have to check, thanks for props&i share your articles to FB.

  3. http://www.facebook.com/teresa.shiao find me on FB &I really hope you could free your mind& be happy, try to read articales of Osho, we all have lessions to learn in this life,Chinese believe there's after life& i did had experiences. Be happy my friend

  4. There are two things that brought me out of my depression after losing my mother, being diagnosed with MS and losing everything to Hurricane Katrina (as in a three yr period) ... blogging & music. I hope they give you the same release, healing & support they gifted me.

    Know that I'm on your side. I'm sending warm & caring thoughts your way. ღ

  5. To you Friday,...My heart goes out to you, I can't imagine the devastation you've lived through, only to Smile and Live beyond it....I'm listening to the Joni you sent me as I write this....My Loving Consolation and Soothing to you for any pain you have felt or still remember, You are A Champion...Thanks sooo much for your sharing and kind spirit...Steve

    To You MeetGhostInMyLife: Thanks again for your caring and kindness...I appreciate it...and I will look for Osho....Thanks to you for the props at Blip!! :)

    To Liberality: I appreciate you sharing that about your Sister-In-Law...It must be hard for the family, I know from losing both my parents...I'm grateful for the supportive friendships that I've gained at Blip...Music is Definitely My Queen!

  6. (((( sƃnɥ )))) ,ǝɟıl ɟo ,ʇsɐuɯʎƃ, ʍollǝɟ ɹǝɥʇouɐ ~~~ ǝʌǝʇs noʎ ƃuıʇǝǝɯ ǝɔıu os ( ؛ ¡spuɐʇspɐǝɥ op oʇ uɹɐǝl ˙˙˙pɐǝɥ ɹnoʎ uo noʎ suɹnʇ plɹoʍ ǝɥʇ uǝɥʍ ˙˙˙˙