Aging and bad connective tissue

[Maryka]

My dear friend Carol who I met through the National Marfan Foundation and who is the survivor of the dissection of an undiagnosed aortic aneurysm, now is having little bleeds in her brain--mini strokes. Her whole life, lived carefully to prevent repeats of aortic aneurysms, is now unravelling. A decade younger than others with this situation, she may now have to live in assisted living for the rest of her life. I am so sad! Connective tissue problems (as Ross tells us) can never be counted out for some of us.

(By the way, Carol is another one of the "borderline" Marfan cases, like me--narrow jaw, longish fingers, but otherwise not Marfan-looking at all.)

 

[Lynlw]

I'm sorry to hear this. Stories like this make me very sad.

 

[briansmom]

I am so sorry to hear that. The cousin of one of my employees died last year from Marfans. He had previously had the aortic dissection that was repaired but started having dissections elsewhere in his body. As far as I know that is either the loews-dietz or ehlers-danlos version of Marfan. Like you guys Brian does not have all of the markers of marfan just long arms, tall and thin, oh and the aortic dissection thing...

 

[Maryka]

Thanks for the two of you who responded. I guess no one wants to hear scary news. Not me. But I did tell my daughter to watch me for signs of mini-strokes because one of the symptoms of mini-strokes is NO MEMORY of them and denial they ever happened.

BTW, Carol has always had good heart valves, unlike me who had a bicuspid aortic valve as well as the aneurysm. These things are so variable and unpredictable!

 

[Lynlw]

Thanks for the two of you who responded. I guess no one wants to hear scary news. Not me. But I did tell my daughter to watch me for signs of mini-strokes because one of the symptoms of mini-strokes is NO MEMORY of them and denial they ever happened.

BTW, Carol has always had good heart valves, unlike me who had a bicuspid aortic valve as well as the aneurysm. These things are so variable and unpredictable!

Week ends are pretty slow, and I'm not sure if everyione reads this forum

 

[zipper2]

Ohhh Maryka i will keep you all in my prayers Carole your good friend also
So sad this is happening and thanks for letting us share Carole in our
prayers,keep us posted on any news

 

[Cozycat]

Maryka, my thoughts are with you. When you have a special friend that you are so connected with, whatever they go through you go through. As we well know, there are no guarantees with life and bad things happen to good people all the time, so enjoy the moments as they happen.

My prayers will be with Carol that the mini strokes will not increase and that whatever living arrangements she will need will be agreeable with her. Peace and love flowing to you both.

Midge

 

[skeptic49]

So sorry to read about Carol. The CTD problem can be just the worst. Those of us who are Marfan-ish with BAV/aneurysms and other Marfan-like symptoms or characteristics (I have a few like arched palate, crowded teeth, nearsightedness) never really know what to expect, I guess.

Jim

 

[Ross]

I'm also sorry to hear the news about her. I wish I had answers, but I do not. I know I display many of the same internal misgivings, but Marfans has been ruled out. My tissue is trash and so far, I make little sense to the Doctors. All I know is, as I get older, things are getting worse. I do know that not a day goes by anymore that I don't think about what the future holds. I certainly do not want to be a burden on my family any more then I already am, but I do not want to be in any care facility either.

 

[COLLEEN S]

Mary,
So sorry to hear of your friend's health. I too am a CTD patient. Just sad, sad news. Praying.

 

[aussigal]

Sorry to hear your friend is suffering from CTD troubles...it makes us feel old before our time...I hope someday they find something other than early diagnostics to help us out...

 

[tobagotwo]

Thanks for the two of you who responded. I guess no one wants to hear scary news.

Maryka, I think it's that those of us who don't have have connective tissue disease feel guilty, especially as there is no glib advice available to give someone who is living the bad end of the nightmare.

And those who do, see themselves, although your friend is a severe case. Commenting on it makes it more real.

While you may feel that you haven't received too much in the way of responses, don't feel that what you posted has gone unread and unnoticed, nor particularly that it hasn't affected people.

I am sorry to hear what your friend is going through, especially knowing how it affects her family and friends as well. I hope she has some good recovery time to share before her issues overtake her.

Best wishes,

 

[Maryka]

Wow! I thought this tread was ka-put but there were all of your responses today!

Carol is in a new "temporary" assisted living situation. At least the new place does not have her wearing an ankle bracelet alarm! She is supposed to be evaluated by two psychiatrists in the next couple of weeks. She thinks once she does this she will be allowed to go home. Most of us think these evaluations will slam the door on her ever moving home (alone). I am getting used to the idea of her never moving home again.

Thanks for all of your responses! Very few books are covering this potential problem of former-aortic-aneurysm people getting tiny aneurysms in their brains as they age. (I hit the bookstores today and could find only one book that enen mentioned "hemoragic strokes" vs. the more common blood-clot strokes.)

Best wishes to all of you who have or will visit this thread!