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NeedCourage

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Feb 22, 2014
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73
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Lost a loved one
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12/2013
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US
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During physical therapy this week, both therapists were surprised by DH’s BP and pulse. These have been perfectly controlled since a heart attack in 1993 with no ‘events’ since then.
This week both PTs registered pulse in low 30’s … using an oximeter. ALS doc and GP both suggested checking with a cardiologist. I’ve taken it with my fingers and counted for a minute several times and it’s about 60 - more his normal range. There were some skips? that might explain their readings.

Now I can’t help but wonder what is the good of keeping a 78 year old heart ticking (with a possible pacemaker) while rest of body is wasting?
We used to kid each other that maybe, if we were lucky, he would go in a flash from heart failure before the worst of the paralysis hits. Humor can get kind of weird with ALS.

We have not even seen a cardiologist about this (have called for appt) but I was just wondering if anyone out there had faced such a dilemma — one of conflict of interest. We know any heart issues have nothing to do with ALS - just happening concurrently. My sweet husband is being an amazingly graceful example of handling stress under fire - unlike myself. But I know this bothers him. Oh, and to add to my fear, this is how my father died: surgery to repair a heart valve and he died as soon as they started anesthesia. Never had had it before. And it’s the same hospital!

I know I’m jumping the gun since no doc has been seen. So as crazy as it may be, I fear any surgery at this point.

If you are able to post a thought - I’d be ever so grateful. I’m feeling numb and terrified at the same time….

Wishing everyone here blessings and peace.
Nancy
 
The oximeter can give an inaccurate pulse reading for a number of reasons. The skips could certainly explain that.

A pacemaker would not keep him from respiratory failure and that along with malnutrition are the usual issues for PALS
I am not at all convinced a pacer is on your horizon but if I were in the latter stages of ALS I personally would not choose one. Being still early if someone said I needed one today I would have one. But it is surgery which can be dangerous if there is respiratory compromise. But he has not seen a doctor had an EKG or a 24 hour monitor? And this is solely on oximetry? Please don't worry yet
 
Nancy, I know what you mean about the dilemma. Surgeons have to weigh benefits and risks. Will surgery benefit the patient? That's a tough call. Fortunately, I think the surgeon will make that decision clear for you.

Doctors have to play god every day, so they're fairly well versed in how to make those decisions.

If you decide to have surgery, I hope to ease your mind. My mom had multiple heart surgeries and came out better each time.

On the other hand, I think it's a dilemma if a PALS is not allowed to die naturally because the pacemaker and vent is keeping them alive after all other functions have become paralyzed. My PALS, my wife, Krissy, was a doctor and knew these problems well. She decided to have no vent, no PEG, no tubes--just let me go. During the last couple of days when she couldn't breathe well, she preferred morphine instead of oxygen to relieve the air hunger. She died 24 hours after entering the totally locked in state. It was a good, pain free and anxiety free dignified death with no surprises.
 
Not sure how much atrophy there is, but mom's readings are never right on a finger oximeter. We take it on her big toe. I do not understand why they would not have taken his pulse manually if the oximeter read that low of a pulse. If you took it several times and got a rate in the 60's I would think that things are OK.
 
just FYI Mike it is very easy to turn off a pacer at the bedside and is sometimes done near the end of life. The cardiologists can do it if needed
 
just FYI Mike it is very easy to turn off a pacer at the bedside and is sometimes done near the end of life. The cardiologists can do it if needed

Yeah, it was easy to physically do, as you say. The dilemma I refer to is emotional. In my mom's case (CHF and dementia) my sister and I decided to turn off her pacemaker when she was not responding to anyone.


When it's my turn to go, I hope somebody will do the same for me.
 
Nancy,
I agree w/ Gil and all that a single pulse reading on a pulse ox is meaningless (you said BP as well?)-- and you have no symptoms, no readings that call for an appt. Skips? If it were I, I'd let it be. If an EKG shows arrythymia, depending on what it is, they are going to write drugs that can be dicey in their own right, and/or want an echo (which at least isn't hard to do in his case) and then write drugs. If he were symptomatic, maybe that'd be worth it, but ask yourself, what if they said, his valve is failing or he likely has a CA blockage or whatever, and we need to do a cath. What would your/his response be? It sounds like you'd not jump on it. So would it be better to know that ax was in the air as well?

Larry was born with a condition (Marfan syndrome) that affects the heart and vessels -- he had 2 valve/graft replacements and an unoperated type B aortic dissection pre-ALS. Once he was diagnosed, we stopped his CT scans, knowing he had 3 significant aneurysms, one of which was getting close to threshold size, in his disease they tend to rupture, and the only way to address his kind is surgery. We didn't go to cardiology regularly any more, just often enough to get our INR meter for monitoring his warfarin.

Ironically, it's the warfarin that showed us how right we were -- when I had to start crushing it, his INR went out of control long enough for a major bleed and he did spend a hospital night reversing his anticoag and sopping up blood -- the worst hospital night he ever had, and that includes nights with ICU psychosis and others near death. In one of the country's purportedly leading hospitals, with my son and I there and awake all night, he spent the night in his wheelchair because they "couldn't support [allow]" our transfer method, lab techs tried to grab his sublux'd arms, blew out every access point, they didn't see any reason to give him the meds that keep the aneurysms at bay nor for his diabetes (I brought ours, then had to physically confront a nurse who didn't want me giving drugs. Guess who won?). Etc. See, you shouldn't get me started! We left in the morning against advice, as soon as I found out they had over-corrected his INR, leaving him at risk for stroke (he had a couple of those before ALS, too).

Now, that night was worth it -- he lived on for another year and a half. There is a calculus.

Anyway, the point is, we knew in 2009 that Larry wasn't going to have his chest cracked again, he wasn't going to be anywhere out of my sight, it just wasn't happening. That's the decision that I guess you haven't thought about as much, but think about it. Then you can make a joint determination about if/how to follow up now and in the future. If you don't mind an EKG, maybe an echo and then saying "no" to intervention, and would rather know than not, that's one way to go. If you don't want to have to say no, that's another. But if you'll excuse the semi-hijack, this is why _everyone_ with ALS needs to have an advance directive and health care power of attorney done well before you think you need it.

So don't be terrified. Surgery isn't something that's done without permission. You have the right to say yes or no to every test, every intervention. Terror (preferably in measured doses) is for things you can't control. Careful thought is for the things you can. I'd get started on that part, even if your PT had never said a thing, because that's part of the ALS deal. Get the paperwork done if you haven't. Let your cardio know what you decide. Then get back to the life that is.

Hope this helps.

--Laurie
 
Laurie,
Yes, your message helps. The only input that seems to help is from those who are experiencing a similar fate. (Toby has not been out of my sight, with a couple of exceptions for 18 months. I can't seem to leave him...) I liked your choice of 'semi-hijack'. You help so many with your knowledge and experience.

Atsugi - you always seem to be available for us all. Thank you.

Nikki - Bingo, right on. Haven't even seen another doc yet. Thanks for assuring me that now is NOT the time to worry.

Gilwest - I was very suspicious of oximeter readings and now more than ever. Appreciate your comment.


THANK YOU all very much.
Love to everyone,

Nancy
 
My wife had paroxysmal (occasional) atrial fibrillation for years. It was nearly impossible to find an oximeter that could keep up with her heartbeat--she would jump to 200, then miss a bunch of beats. I always took her pulse manually.

Once, she was in the hospital for an unrelated procedure, when her afib cut in and her pulse topped 250. CODE BLUE! The interns went crazy and she had to talk them down, explaining that this wasn't all that unusual...

Her Afib has now gone permanent and we found an oximeter that works, but yeah, don't trust them.
 
Thank you, Dusty7 - I feel so much more relaxed about the whole situation -
at least for now.
:)
 
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