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Smilee91

New member
Joined
Jun 14, 2013
Messages
3
Reason
Loved one DX
Diagnosis
01/2013
Country
US
State
RI
City
Cranston
Hi all

I am new to this site. My husband was officially diagnosed on April 22 2013, however we have known since November 2012.

Anyway my husband wears a brace on his left leg and right leg is deteriorating. Also, his breathing has started to be difficult at night.

130am Wednesday he woke me having chest pains. Long story short he had cardiac catheter today. One artery is completely blocked the others look fine. They could put a balloon to try and open the passage but he refused the treatment. The Dr. Spoke to me and said he understood. I DON'T.

There was a prior forum with other ALS patients that have had a heart attack. Can you please respond and tell me how you or your loved one did after surgery? Either stint or bypass.

Thank you :)
 
Hi
Welcome but so sorry for your husband's diagnoses. I do not have experience with ALS and cardiac procedures. From other non ALS people I would say stent is quite easy comparatively speaking CABG is a tough surgery. Forgive me for saying this but it sounds like your husband's view is he would rather die of a heart attack than ALS? I personally can understand this. I do not have ALS but carry my family gene gene which means I have a 94 percent chance of getting it and I have said I would rather die of anything else ( I may feel differently if faced with a decision like your husband's of course). This must be so hard for you though. I am sure you want to keep him with you as long as you can.

I hope he is feeling better today.
Take care
Nikki
 
I have watched my life deteriorate with this disease for 4 years. I understand how your husband feels. I hope he will talk more to you, and I am sure this is hard on you. I have refused to even be checked for what killed my Mom. This disease sucks and he may not want to be a burden. But I am one now, and I hate it.

Good luck. So sorry you are here with us.
 
Since his ALS diagnosis, we have essentially stopped following my husband's many aneurysms and cardiovascular conditions (he has a genetic disorder as well) since any negative change would technically mandate more major surgery. So I understand your husband's perspective in a nutshell, but I hope he was made aware that stents are no big deal (a far cry from a CABG, for example), often don't last that long anyway and could ease his chest pain, which otherwise will not stabilize.

Something else to consider is that not unblocking the artery will ultimately lead to congestive heart failure, which would only add to the considerable burden of ALS in terms of respiratory issues. If he is already having breathing difficulty at night (is he on BiPAP? he should be), this is not a far-away scenario. Was an echo done? What was his EF? These are answers I would want to know, to evaluate the tradeoff he is being asked to make.
 
it sounds to me that he is choosing a heart attack over ALS--and as a CALS, I understand completely. what is coming with ALS is not a good thing in anyway. The stint is not a big deal though and would inprove his quality of life and decrease chest pain . I think they would also help extend his life. My dad has bypass last year and it was a BIG deal--I would not recommend that for a Pals. that surgery would probably reduce the quality of his life and he might not ever fully recover from it.

You should talk to him about his reasons and what he is thinking. It is not an easy thing he is going thru and trying to decide. Good luck to you guys---
 
@Nikki. Yes I believe he would rather go from the heart attack than from ALS and you are right I am torn. I am angry at him but then feel guilty for being angry! I do not want him to suffer....

@hjindley I do not have the disease but I can tell you I have never thought of my husband as being a burden. I am sure your family feels the same way. But I do understand the thought process of the patient.

@ lgelb he is not yet in Bipap.. I called his Neurologist on Wednesday when he originally checked himself out of the hospital. She called him and set up appointment in JULY with pulmonary. When I went to get him today (discharged) there was a pulmonary there and she had him blowing in a little machine. She was saying normal breath is 3000 for a man his size. He was barely hitting 500 and that was with effort.

@ Barbie. I try to talk to him but it seems everything I bring up is either too difficult for him to deal with or he is just not ready to talk to me. Of course I am probably handling it all wrong! The Dr came to see me and indicated the risk may be greater than the benefit as the artery is totally obstructed. Sent him home with his BP tanking usually normal now 88/56 and a low grade fever. He has been sleeping most of the day and I am a mess!

Did I mention we moved into a new house 3 weeks ago? From a 3 level townhouse to a ranch.

Thank you all for your input it is greatly appreciated. Debbie
 
Hi all. I went back to work yesterday. Jim's breathing was much better throughout the night on Monday. I came home last night and he had passed of a fatal heart attack. Although I am so saddened I don't know where to begin , I am glad he did not suffer through the worst symptoms of this disease. Thank you for your support. God Bless. Debbie
 
Debbie,

I am so sorry. I know the days and weeks ahead will be a struggle. You're in my thoughts and prayers.
 
My sincere sympathies go out to you and your family.

Jim passed the way he wished. Bravely. I hope you get comfort from this.

Wishing you courage in the days ahead.
 
My sincere condolences to you and your loved ones...peace
 
Oh Debbie. I am so sorry. I know you are relieved that he did not suffer over a long period of time, but that must have been very traumatic for you nonetheless. :( I am so very sorry for your loss.

Jamie
 
Very sorry for your loss Debbie, what a shock. I hope you can take some comfort from him having been spared the very worst of this disease. God bless you all.
 
I am so sorry for your loss and for the terrible shock. My prayers are with you. It seems your husband passed as he wished and I hope in time that will comfort you.
Take care
Nikki
 
I am so sorry for your loss. I hope his passing was peaceful, and may your friends and loved ones wrap you warmly.
 
oh no, I am so sorry for your loss. How devastating for you, but at least you know that he chose the path that he took and is at peace now.

I am wishing peace and love on you now...
 
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