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
aneurysm!

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!