My Divination Card, Pride Before The Fall

Meh I never liked divination casino anyways.
R.I.P 4.B.
such a cool story!
thanks for sharing your story! take care and enjoy the game!
I wish you all the best with your continued recoveries.

One of the coolest guys I know has Marfan Syndrome. He does show the typical signs, but doesn't let it mess with his personality. He listens to awesome music, and he plays this game. He is an inspiration, as I'm sure you are as well.


-VG-
Invited to Beta 2012-03-18 / Supporter since 2012-04-08
An update on my health status:

Due to my dissection, I’ve developed two aortic aneurysms. One of them has reached the size where they start recommending surgery. In January I’ll know for certain how urgent it is, I’m doing another CT scan to verify its size and check if it’s continued growing.

Thank you everyone for your kind thoughts here, they’ve brought a smile to my face many a time through my health struggles. It’s been a hard ongoing battle; I’m at over 200 medical appointments for this year alone. Path of Exile has been one of the few hobbies I still get to indulge in with my medical restrictions, and some days it’s one of the few things that can cheer me up and get my mind off things.

Here’s to making it to the inevitable 4.0, and I hope that if I do have to have surgery that my cwdt-ic setup fires properly.
Hang in there, exile.
Good luck Freykin, hoping for the best outcome for you.
~ Adapt, Improvise and Overcome
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freykin wrote:
along with having Marfan Syndrome.

I too have it. That makes two of us!

tl;dr:
Diagnosed at birth. Had several heart/lung/eye/other surgeries, dissections, aneurysms, etc. spent 61 days in the hospital (one long visit) in 2015 due to my entire aorta dissecting, and then some. Leading to kidney failure (it's 'better' now. but borderline. 40% functional) and all that fun stuff.

I've also been given a 'heroic' amount of fentanyl :D


Best wishes, it'll all be fine. some changes might be made, but it's manageable
rawr. fear me.
Last edited by tidbit on Nov 3, 2017, 1:35:04 PM
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freykin wrote:
An update on my health status:

....
Here’s to making it to the inevitable 4.0, and I hope that if I do have to have surgery that my cwdt-ic setup fires properly.


Glad you can keep a good sense of humor and positive attitude through all of this! Be sure you are at maximum Endurance Charges first though! :)

Wow, Tidbit, when in 2015? We might’ve fissected at the same tome, for me it was April 21st and 22nd; first during heart surgery and then it continued th following day. I didn’t have it quite as bad, I was in the hospital for only 3-4 weeks. Probably because I was already at one when it happened, so I immediately got care.

Thank you so much for sharing with me here. It really means a lot to me and hearing about another’s struggles and successes with this is helpful. I’m relativrly lucky on my dissection; the only thing on my false lumen of inportance is one kidney, and it’s still relatively normal (it’s shrunk to 90% of its original size). I’d be getting my deescending thoracic aorta replaced, along with them attempting to repair some of the dissection at the same time.

If yiu don’t mind me asking, is it hereditary or a unique mutation for you? In my case I’m a unique mutation; I had no idea until I was 31. My family has always been tall, nearsighted, and had a family history of scoliosis, so nothung seemed out if the ordinary.
I never was given fentanyl, as far as I know; morphine and codeine mainly, and some hydrocodone a year later for recovering from an appendectomy, which felt like a cakewalk in comparison to everything else.

Are you by any chance British? I started using Best Wishes to sign my emails after my time in London as it stuck with me, and I don’t think I’ve seen a different region use that yet.

wde97, sometimes humor’s all you have :). If I can morbidly joke about it it helps some, because it’s one of those laugh or cry situations at how absurd it all is. I’m planning to spec into juggernaut beforehand for that chance for full endurance charges beforehand! (by which I mean do my best at cardiac rehab to keep my circulatory system as strong as possible)

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