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Non Compaction cardioMyopathy (NCM)

This topic can be found at:
https://sigforum.com/eve/forums/a/tpc/f/320601935/m/3760090674

October 31, 2020, 08:41 AM
TMats
Non Compaction cardioMyopathy (NCM)
I guess, one big advantage to living in the Bay area is a wealth of world-class docs and medical research institutions. Best to you.


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despite them
October 31, 2020, 09:10 AM
Oz_Shadow
A life vest is an external defibrillator. Not sure what all is on it.
October 31, 2020, 09:20 AM
kkina
quote:
Originally posted by Oz_Shadow:
A life vest is an external defibrillator. Not sure what all is on it.

Oh I see. No, I somehow don’t feel like I even need one.



ACCU-STRUT FOR MINI-14
"Pen & Sword as one."
October 31, 2020, 09:24 AM
kkina
quote:
Originally posted by just1tym:
Kevin, I wish you well and a healthy road to recovery ahead, God Bless my friend.

Thank you, Sir. I know you and The Fuzz are pulling for me.



ACCU-STRUT FOR MINI-14
"Pen & Sword as one."
October 31, 2020, 11:28 AM
mike28w
If I were going to have a pacer "installed"....;- )) I would make sure to ask the cardiologist to avoid my shooting shoulder. JMO...mike
October 31, 2020, 02:31 PM
tleddy
quote:
Originally posted by mike28w:
If I were going to have a pacer "installed"....;- )) I would make sure to ask the cardiologist to avoid my shooting shoulder. JMO...mike


Great advice... I did that!


No quarter
.308/.223
October 31, 2020, 05:01 PM
kkina
quote:
Originally posted by TMats:
I guess, one big advantage to living in the Bay area is a wealth of world-class docs and medical research institutions. Best to you.

Yes, indeed. I have availed myself of excellent service from UCSF and Stanford. There is no finer medical talent in the world. I am working out of the mid peninsula for the current usual health crap medical issues, as my mother is a retired RN from Mills-Peninsula. I am currently being treated by some of the finest heart specialists around.



ACCU-STRUT FOR MINI-14
"Pen & Sword as one."
October 31, 2020, 05:20 PM
6guns
Glad they figured it out. I'm sure 11 days in the hospital was concerning to say the least.

Get well and hoping for a complete a speedy recovery!




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November 04, 2020, 11:08 AM
kkina
H2oys’ thread thread on his own current medsitrep inspired me to do some silver-lining obervations…

I’m well past crisis and rehabbing at my parents' home. More than strong enough to have declined skilled nursing home and even home health care. I'll just do 'er myself, galdarnitt (currently walking 3-5000 steps/day per orders). The only sticker so far is my right hand is still pretty much useless (the severe edema impinged some deep gout I didn't even know I had).

Kidneys are healthy and fully-functioning.

Correcting the severe weight gain (albeit water weight) has taken me from a stratospheric 200 lb down to a flat 140 lb- my ideal weight, a number I haven’t seen since high school (or was it grammar school?).

By a strange coincidence, my primary cardiologist’s husband is a dermatologist who believes he can get my approval for a cutting-edge eczema treatment. Dupixent is an injection every 2 weeks that has been changing the lives of eczema sufferers. Would also allow me to get off the Prednisone that may have caused or exacerbated the heart problem in the first place. The only real drawback is the cost- $3,000 a shot, every 2 weeks. I should get the results of my application by next week. This would be life-changing (I have severe atopic dermatitis).

Finally, and I’m not sure if this is really a silver lining yet, but it might be- this could be the point where I go onto permanent disability. 62 and in questionable health is not the best profile for running a company, even one that is a labor of love. No idea what the disposition of Accu-strut would be- sell, restructure,…?

Thanks for reading this far.

This message has been edited. Last edited by: kkina,



ACCU-STRUT FOR MINI-14
"Pen & Sword as one."
November 04, 2020, 05:30 PM
Green Highlander
I was diagnosed with Dilated Cardiomyopathy (DCM) back in 2001 at age 33. My EF was 15% and has now stabilized between 20-25. It will require you to make changes but you can still live a full and rewarding life. Treatments and medications have come a long way in the last 20 years. Do not blow off the recommendation for an ICD. Mine has saved my life on multiple occasions when I have suffered ventricular tachycardia storms. Feel free to drop me a pm and we can connect. I will be happy to talk with you about living with cardiomyopathy.


"You know, Scotland has its own martial arts. Yeah, it's called Fuck You. It's mostly just head butting and then kicking people when they're on the ground." - Charlie MacKenzie (Mike Myers in "So I Married an Axe Murderer")