Mom's health status

[Lucy]

Hi all,

As many of you know, we've been having a difficult time maintaining Mom's blood pressure with the P.D./Shy Dragers (Muliple Systems Atrophy).

Long story short, I've had to call 911 three times in little over a week. First time she fell when I was in the bathroom and didn't have anyone to help me get her off the floor (EMS has what they call an "Assist program" to help with things like that.) Second time, she was having chest pain, and was admitted to the telemetry unit via the ER. She had just seen the cardiologist a few days before in his office to discuss how we might medically manage the hypotensive episodes.

In the hospital, after the customary three blood draws, the results showed no signs of her having had a heart attack. Since then, Mom has had an ultrasound of the heart, so I imagine that when we go in tomorrow, the doc will let us know the results of that, plus discuss the pros and cons of going ahead with a nuclear stress test. Mom may not want to do it, and the real reason we'd be doing it anyway would be to decide which medication would be the safest to use to keep her BP high enough upon sitting and standing.

If in fact, she has occlusion somewhere, we certainly wouldn't want to keep managing her by constricting her vessels further.
On the other hand, if she doesn't have any major occlusion, it might be preferrable to continue with the med she's on with or without the other option which is fluronef (sp). If she's occluded significantly, then we'd probably be stuck with just the fluronef with me constantly looking for signs of congestive failure which I can easily do.

I know that if she's really badly occluded that the possibility is always there that the stress test might push her over the edge, but of course, nothing would be done to revive her at this point in her disease, so we'd lose her there at the hospital most likely. Theoretically, they're supposed to be able to stop the test if there are any significant PVC's, but like I say, you never know what's going to happen.

If everything comes out ok, one of our options which might help with quality of life would be to give her a sort of baseline dose of floronef (sp) and a smaller amount of the vasoconstrictor at to be determined later intervals. This can be determined from her blood pressure readings throughout the day.

I just have this feeling that the end is near, but mostly I fear HOW it will end -- will she have pain, etc. I know that it won't all hit me until it happens.

Oh, and the third call was for another assist. She fell trying to get from the bed into her wheelchair at bedside. Now she's got so many bruises from lab visits, hospital/ER, and falls, and I'd had her skin looking so nice before. Makes me sad just to look at her just getting more and more fragile.

Also, she's actually wanting to go now which is a pretty good sign that she will be going home soon.

Just wanted my friends to know what's happening here. Thanks for listening. Wish I had more time to read all the other posts.
Sure hope everyone is ok.

Yours, Luce

[starfire]

Luce,
I'm for you both. I know it's probably time for her go on to a better place but I know it will hurt you all the same, even though you are prepared. At least as prepared as a person gets.

You have been such a wonderful daughter and caretaker. I know you will have no regrets.

Love, Shirley

[harvest_table]

Luce,

Were keeping you all in our prayers during this difficult time. Hang in, we love you.

Joanna

[MaggieRedwings]

Luce,

Your mom and you are both in my prayers and I know it will be hard when she does go home but she will be in a much better place. It must be so hard to be in a situation that just does ot seem to get better and the end is what one has to look forward to. Be proud that you are doing everythig you can for her and I am sure she feels your love.

Love, Maggie

[Mars]

It takes a strong person to take care of a loved one like you are doing Luce. I know inside you are crying but keeping that strong face for your mom.

We are here for you whenever you need us. Don't forget to stop and take care of yourself!

Thinking of you,
Margie

[Lucy]

Hi all,

At the cardio doc's office today, we decided to go ahead and try the medical route to see if eliminating the nose diving blood pressures when Mom gets up in the morning would also eliminate the chest pain episodes.

Once she's able to maintain adequate pressure, if she STILL has the pains, we may go ahead with the nuclear stress test, particularly if this new medication works well enough that we can add something to help her with the side effects of her PD med which contributes to BP's dropping. It could be that the PD medication WAS still helping her after all, even though she's been on it for so long now. Sooo, if we put her back on a little more of the PD medication, and add something to reverse the side effects of hallucinations/delusions they it will take more of the fluronef to maintain the pressure.

We know what we're doing, honestly we do! Ha! At any rate, we're taking a very conservative approach, at least for the time being. Any more drastic measures would be designed to prevent pain as far as the heart is concerned. At the very most, this would include angioplasty. The other day, her heart ultrasound was better than the one she had a couple of years ago.
Just taking things a day at a time now.

New neighbors next door have their parents moved in with them here, I think. His dad is a physicial at Methodist Hospital in N.O., and was working in that hospital for five days.

They had criminals all around them, FBI, and all kinds of stuff according to another neighbor down the street who's apparently from there as well, and knew all about it.

Anyway, neighbor said that his dad's office had the roof torn off of it, but their house was ok. His sister wasn't so fortunate as that family lost everything, but they're staying in Atlanta. Don't think she's planning on moving back to N.O., but just stay where she is.

Friend of his from down the street told me that he was housing a family with them for a while. Actually, I'd guessed why they were there -- three generations of them I would've guessed.

I discovered recently that N.O.'s channel 6 was being broadcast from Houston, both in Houston for the people who need it, and in La. some place for those who need information. Best way to describe it is that it's like the programming was right after 9/11.

Like this station as it's more complete, and get to hear various people involved in things with more footage, and best of all, things are recorded and replayed in context.

Gotta go. Sleepy again.
Yours, Luce

[starfire]

Being so far removed from the issues makes my opinion virtually worthless, but I do believe you are doing the right thing taking a conservative approach. She doesn't need to go through any more than what is necessary at this point. Actually that's probably true at any age, come to to think of it.

Thanks for the update. on both subjects.

Love, Shirley

[Geri]

Luce,

I admire you very much. I think of you and your mom every day, and you are always in my prayers. You were a big comfort to me when our Sydney was so sick, and it helped to know that you had put her on so many prayer chains. You will be happy to know that she is in shcool, and completely cancer free.

You should be a very proud daughter for the good care that you gave your uncle, and that you now give to your mom.

Love and hugs,

Geri