Not how things were supposed to go.

[helkat22]

Ugh. So my mom was living independently until 2/10/16. She could still VERY SLOWLY walk with a wheeled walker around her house. Then she got sick...couldn't keep anything down, couldn't really get out of bed. Took her to ER. Admitted with UTI.
Developed a junky cough 3-4 days into her stay. Then sent to acute rehab (5 days after admission) to see if she could gain a little strength back and get back to baseline (level before UTI). She arrived at rehab around 7pm and had a heart attack at 3am. Sent to ICU. Refused cardiac catheterization (she'd rather die of a heart attack than suffer with ALS).
Now she's on hospice in hospital and her breathing sucks (on January 18th her neurologist commented on how great her breathing was at 127% predicted value). She has a cough that's so junky yet she can't bring it up. Today they said she qualifies for BiPAP. I think they'll end up discharging her tomorrow and she'll end up going to a skilled nursing facility (not on hospice) to see if there's anything they can do to get her a little stronger (though I'm not hopeful). I don't think she's coming home
Seriously...a heart attack on top of ALS?? WTF??

 

[gooseberry]

It wouldnt be unheard of because if she is having breathing issues, her pulse can go up. This isq how my husband was dwiagnosed. He is on a beta blocker to bring his 130 pulse down to 95 to 100.

I am so sorry this is happening with your mom. I hope you, and your mom can find some peace.

 

[helkat22]

Ugh. Her breathing was great. Up until a day or two before the heart attack. I can't imagine that it would decline so rapidly, but who knows.

 

[lgelb]

Sorry to hear about your Mom, Helga. She could have thrown a clot (or multiple clots) that affected her breathing, as a precursor to the MI. I take it acute HF was ruled out?

Steph, curious why Steve is on a beta instead of a calcium channel blocker? With respiratory issues, CCBs are more often used, unless he's on a super low dose.

Here's hoping for a better week to come.

 

[helkat22]

I don't know if acute heart failure was ruled out...not sure what difference it would make. She never had heart issue previously, but I am thinking that the heartburn which she had be complaining of for the last twi months (and I was attributing to a weakened diaphragm) was really her heart all along.
She complained of chest pain/heartburn at the first hospital but they never did an ECG.
She did have an episode of VTach later the same day as the STEMI, and they now have her on amiodarone and a nitro patch.

 

[gooseberry]

Laurie, I say beta blocker generically. He takes carvedilol at 12.5 mg 2x a day.

 

[lgelb]

Yes, carvedilol is a beta blocker, not a CCB like diltiazem.

 

[tdamess]

wishing her the best

 

[GilWest]

I ,too, would wholeheartedly recommend a heart attack death to ALS death...