This ain't no blog, but had to share - still recovering, more slowly than I'd hoped

[cherrytwist]

eh, nobody cares

 

[lxskllr]

Didn't know you weren't well. All the best for a continued full recovery :^)

 

[Freshgeardude]

glad to hear you are ok, but all this before 40? damn



jw, are you overweight?

 

[MagnusTheBrewer]

Way to go! Keep after that PT. Don't sit around the house. Keep up the good work.

 

[cherrytwist]

glad to hear you are ok, but all this before 40? damn



jw, are you overweight?

I have a genetic disorder, Marfan Syndrome (nmf.org).

First aortic dissection was at age 29, scored a new synthetic aortic valve and graft of upper aortic arch. This happened on Dec 31, 1999.

I always make the joke I wasn't Y2K compliant.

 

[nanette1985]

Congrats and best wishes. Healing can have its ups and downs but hopefully you'll have more of the ups. Yay for finally going home.

 

[Malak]

Yeah I'm pretty sure I have Marfan.

 

[zanejohnson]

Good to have you back, hope you feel better real soon

 

[Freshgeardude]

I have a genetic disorder, Marfan Syndrome (nmf.org).

First aortic dissection was at age 29, scored a new synthetic aortic valve and graft of upper aortic arch. This happened on Dec 31, 1999.

I always make the joke I wasn't Y2K compliant.

ouch. That sucks man


I hope you have a quick recovery and a long life ahead

 

[SandEagle]

all the best, twistedcherry.

 

[Kadarin]

Best wishes and best of luck to you.

 

[KK]

good luck. was that the same thing that Tred Barta had?

 

[zinfamous]

good luck with your recovery, OP, and try to stay active.

Are you double-jointed?

 

[x26]

Going home tomorrow after 17 days of hospitalization and inpatient physical rehab.

Started with (2nd) aortic dissection and a minor "spinal stroke". Ending with me able to walk with a one point cane after a week of inpatient PT. I worked hard at it and take pride in that. My initial discharge date was 6/11. Now I'm leaving 3 days before my 40th birthday.

Looking forward to waking up next to my wife and cats instead of a vampire with a needle wanting another vial of blood (@ 2am, no less).

So I've got a gimpy leg, outpatient PT and several weeks for my dissection to heal. This I can live with. Plus no work for about 3 weeks or so.

Feels good to be alive and kicking.

Best Wishes!!
Getting well ain't easy...Seems like you are doing a Great Job.

 

[lupi]

another reason why hopefully gene therapy won't be much further out.

 

[Malak]

good luck. was that the same thing that Tred Barta had?

It appears he had a rare blood cancer. Marfan affects the connective tissue in the body. It can make you real flexible but weakens everything, including the heart. It is a difficult condition to live with. After a few injuries, I have fallen out of shape. Just recently started trying to get back in shape but have to pop pain meds before working out.

 

[Mr. Pedantic]

Best wishes OP. Would you mind telling me what meds you're taking and giving a few more details about the stroke?

It appears he had a rare blood cancer. Marfan affects the connective tissue in the body. It can make you real flexible but weakens everything, including the heart. It is a difficult condition to live with. After a few injuries, I have fallen out of shape. Just recently started trying to get back in shape but have to pop pain meds before working out.

The ironic thing is that Marfans tend to be tall and thin, so they make good basketball players. And because it damages the heart, and because of the stress put on the heart during exercise (which Marfans tend to do more of) a not uncommon first 'symptom' for people who have connective tissue disorders (not just Marfan) is death. They basically just collapse during or after exercise and die.

 

[Malak]

The ironic thing is that Marfans tend to be tall and thin, so they make good basketball players. And because it damages the heart, and because of the stress put on the heart during exercise (which Marfans tend to do more of) a not uncommon first 'symptom' for people who have connective tissue disorders (not just Marfan) is death. They basically just collapse during or after exercise and die.

Well most people don't consider they might have a deadly condition and a physical won't show things like Marfan.

 

[cherrytwist]

Home for a couple of days now and getting acclimated to RL once again.

@ Mr. Pedantic: Been meaning to PM you, been busy.

@ zinfamous: I wish.

Famous Marfanites:

Abraham Lincoln (this is incorrect, makes me question the others)
Vincent Schiavelli, actor
Jonathan Larson, Tony Award-winning playwright (Rent)
Flo Hyman, captain, U.S. Olympic Volleyball team, 1984 (silver medalist)
Chris Patton, college basketball player (University of Maryland)
Akhenaten, Egyptian pharaoh, who was possibly the father of King Tutankhamun
Charles de Gaulle
Sergei Rachmaninoff
Niccolò Paganini
Mary Queen of Scots
John Tavener, composer
Pauline de Rothschild, fashion designer, writer, tastemaker
(possibly) Johnny Appleseed
(possibly) Peter Crouch, England and Liverpool footballer
(possibly) Kermit L. Hall, noted legal history scholar and university president
Joey Ramone, singer

Read more at http://www.wrongdiagnosis.com/m/marfan_syndrome/wiki.htm?ktrack=kcplink

 

[skyking]

You've had some other episodes of note in the last few years, If I recall correctly.
Glad you are home and feeling better.

 

[cherrytwist]

You've had some other episodes of note in the last few years, If I recall correctly.
Glad you are home and feeling better.

Actually got a call from the agency that follows up with victims of violent crimes just the other day. Another court date is set in August to determine if my case will go to trial. He's got a ton of charges on a bunch of different crimes, so he's going away for a long time.

Wife organized a get together for my 40th b-day yesterday. I overdid it a little bit (too active, sore all over) and am really feeling it today.

I'm a very lucky man, in more ways than I can express and feeling very grateful today.

This is becoming too blog-like and uncomfortable so I'm gonna stop here.

Thanks again for everyone's supportive comments.

 

[dmcowen674]

Wow, never had heard of that. Learn all kinds of things here still.

Best wishes on speedy recovery

 

[cherrytwist]

update