A few weeks ago my 67 yo husband was taken to the hospital. Initially they said it was pneumonia but upon release they said he had heart failure and referred him to a cardiologist asap. In less that two days, he was back in the hospital, turns out he was overmedicated on bp pills. BP was 61 / 43 when they got to the ER. (Two different hospitals as the ambulance crew that came and got him the second time thought he was having a stroke and the first hospital's machine was down.) Thirty-six hours and he was back home.
He saw the cardiologist a few days later, agreed to do the procedures required for the surgical team to evaluate whether he was able to have the surgery. Found out that he has left and right side heart failure, needs a valve replaced (has for years and has always refused it) plus ongoing afib and some other surgical interventions were also discussed.
He saw his pcp the next day, was all agreeable to the upcoming procedures. So glad they have to give a visit summary or I wouldn't have it in writing that he was positive with the pcp about getting this done.
The next day they called to schedule the procedures and he said he never agreed to any procedures. I told him he'd signed papers, so then I read them to him, and he said that there was no way he would have ever agreed to that.
On Sunday 3/14, he told me to stop pushing him about getting surgery (I purposely had not said a word) because there is "no way anyone is sticking anything up my veins or cutting me open." I told him I agreed and then . . . I told him about the two different dementia diagnoses that had been given to my daughter and I about him 2017. I told him that I was mad that no doctor ever sat down, looked him in the face, and told him these things. I'm mad that he hasn't even seen his neurologist in over a year, she should be dealing with this, not me. And then I put it bluntly -- Maybe it is God's mercy to take him sooner because of his heart than to have him in Memory Care later with a good heart. When I told him all this, he did not get upset (totally out of character) but was actually relieved and said that knowing about the dementia diagnoses actually made sense to him and answered some nagging questions he's had. So we're good there.
He has also refused to follow up with the "heart failure clinic" that is offered by the local hospital. He says he doesn't need monitored, just let whatever happens happen. Okay, so that is fine for him, he is a controlling man and no one is going to make him do something he doesn't want to do, but . . . and now I am finally at my question:
What about me? (That sounds so selfish.) I need answers. I need to know what the future looks like. I need to know -- are we talking months or are we talking years? If he's giving up, is it worth worrying about his salt intake and his fluid intake or just let him have what he wants and avoid the tension? What are things going to look like as this progresses? When does he go to the hospital and when do I say no? (He is "no CPR, no feeding tubes, no vent, or other life-sustaining measures" on paper.) Do we ask for palliative care? Or home health services? Or hospice?
I've been reading the articles here about heart failure and it is all a bit overwhelming. As far as I can tell (because no one has told me) he is in Stage 3 (or C, depending on what you read). What is the prognosis for that?
I think that you should refrain from encouraging him to have heart surgery. At this age this complicated surgery OFTEN goes wrong, and as a cardiology nurse for many years I can assure you of that. Clots are often a complication as they struggle to give and control blood thinners; there can be hemorrhages in brain. There can be strokes. And death or debility can come rather than valve replacement. If your husband has atrial fib there is more wrong with the heart than the valve so that the "electrical signally for a beat" (as an easy way to explain) is not functioning well as well as the mechanicals within the heart. Ablation sometimes works for this, and much LESS OFTEN than they will suggest to you it does.
With Palliative care the heart failure will be treated with diuretics to help manage fluids in lungs, in peripheral areas. This will require testing to make certain that potassium (which is washed away with diuretics and which is crucial to life) levels remain stable. Other testing would not be done. Your husband should explain to his MDs that risk of surgery is worse to his mind than allowing things to proceed as they will.
Heart failure means essentially a failing pump. Failure of left heart would mean difficulty in clearing fluids from lungs, more dangerous than right heart failure which will result in some abdominal congestion, swelling, and pitting edema in the feet and legs. Some people get what we call "Flash Pulmonary Edema" which can hit lungs quickly and severely.
Hospice isn't called for. People can manage heart failure for some time with medication and blood monitoring. But Palliative care seems to be where he is at. Do discuss with him if this is his final choice; then see a good cardiologist and get your staging information, and the way forward.
I am very sorry for this diagnosis. It is dire indeed. Informing yourself with internet on what to expect and what the diagnosis means is a good thing, but once you know the basics, stop scaring yourself to death with it. Some people manage with medications well.
Learn to do blood pressure at home. One of the most common admissions on our floor was plummeting BP. Because it is measured in MD office it is abnormally high; they give medications and it goes low low at home and the patient is down on the floor with their first trip up to the bathroom.
I wish you good luck in managing all this. If you have read "complications with valve replacement" you will see many; they may make you feel somewhat better about your husband's choices. While at 67 he sure is younger than we would want him to be, but I would, were I you, honor his decision, give him time to think, and discuss honestly what his choices mean for you both. Try to take this a day at a time. Don't let doctors rush you out the door; don't let doctors bully you. Despite their sometimes wrong ideas that they are God, they honestly aren't. Remember that much depends on the specialist you visit. As my Dad used to say "Surgeons cut cut cut cut." That's the facts. It is what they do. A good cardiologist will help you and your husband manage the facts of his condition.
I surely do wish you the best.
If he weren't your husband but you had all the information about a person that you have about him, using your best judgement, would you say that that person is competent to make these decisions, or not really?
Are you able to put searching questions to the cardiologist, such as what estimate of quality of life would be reasonable if your husband were to go ahead with the recommended treatment?
I think you're right not to confront your husband with these issues yourself, but there remains the question of whether you want to lean on his clinicians to do so. Thinking it through: I am the PCP. My patient appears to understand the plan and to agree to it. Next day, my clerk tells me, he states he never agreed to any such thing. What do I do? Do I ask him to come back to my office and clarify his wishes? Do I take his bare word for it? Or what?
I'm so sorry you're having to wrestle with this (and with your hands tied, what's more). It seems terribly unfair.
But I don't think it's possible to get the answer wrong, or right; you just have to do your best with what's available. My Dad dropped dead at 71 from myocardial infarction (classic heart attack). My mother was diagnosed with LV cardiomyopathy (classic heart failure) in 1995, and died in 2015 at the age of 90. Even if there had been any choice about it for either of them, and having been down both roads, I still couldn't say which fate was preferable.
A bit overwhelming, indeed. Hugs to you.
https://heart-failure.net/forums/
but there are several others. Although the focus is understandably on positive treatments I'm sure there will be many there who have the kind of answers you are seeking.
My MIL recently had her aortic valve done in a minimally invasive procedure at 91 and is doing great.
My question to the doctor is what happens if the valve doesn't get replaced. For my Dad, he would have died. I think at this point ur husband is with it enough to know what goes into having this surgery. What you need to do is worry about your future. Make sure everything is in order. That you are taken care of.
I think maybe "submitting" in this situation means doing nothing and letting nature take its course.
It would, however, be a shame to suffer death from CHF without hospice. My mom's pulmonologist warned me about that. Morphine is a great blessing in the end.
Or perhaps he wants to suffer. There are those from the old "Hellfire and damnation school" who feel that way.
You might bring that up for conversation, how much does he want to suffer in the end, and would he like to be connected to hospice.
Does he have someone else he'd rather act as medical POA?
A few years ago, my husband would walk 18 and even occasionally 27 holes of golf every day (course is 2.4 miles from our house, small easy course). Two years ago, the course manager started to see a decline in him and gave him a cart free for the second half of 2019. (Well, he actually told him to either use the cart or don't come back!) Last year he needed to use the cart daily and seldom golfed more than nine holes. By October he was too tired to even go over for nine holes (and his golf buddies didn't want to golf with him any more because he was so slow).
I have definitely watched this active person become inactive. I suspected heart failure last summer when I saw his game didn't pick up as he got into the season like it usually does, his energy level was so low, and he began huffing and puffing. But neither his pcp nor cardiologist pursued it when he off-handedly mentioned that he was short of breath. If he didn't take it seriously, why would they? Maybe I should have said, "Yeah, you can't make it from the living to the bathroom without being out of breath."
I don't want to see this go on for years and I'm pretty sure my dh doesn't want that either. His brother died last March and all he has talked about since then is "going home to be with his real family again."
If your husband is willing to make positive changes he can and will recover
In medical terms 65 to 75 is 'young old age'..so he is not as 'old' as you imagine.
However, the body is a self healing miracle.
You might consider Dr Christophers Hawthorn Syrup to strengthen his heart. Cayenne pepper...and drinking & cooking with only distilled water
2 tablespoons cold pressed wheat germ oil x 2 times daily
You can find the products on Amazon
Read about by googling Benefits of...Despite drug company owned websites claims of side effects...there are no side effects when foods are used in their 'wholesome form"
goggle "hawthorn for heart disease dr christopher legacy"
You will find extensive knowledge there for each of the foods I suggested
I have seen people who had been advised they would die very rapidly unless they had eg. pacemaker, extensive by pass etc
They are now healthy productive citizens. Nature will take care of the problems
If the person is willing.
Keep your head up
Like Barb said, you need to speak with DH's doctors about the questions you have and about his prognosis w/o medical intervention. The questions you have about salt intake & fluid intake are valid; if he's refusing treatment, why bother worrying about those things, even if it hastens his demise. If he's strong willed and has dementia, he's unlikely to follow YOUR dietary instructions ANYWAY, let's face it. So get all the 411 you possibly can from his cardiologist, and go from there.
Wishing you the best of luck with a difficult situation. Sending you a hug and a prayer for strength, too.
If you are, you can certainly call the cardiologist and ask all these questions.
Does your husband allow you to accompany him to doctor visits? It certainly sounds as though he needs the support.
I don't think you sound selfish at all. And yes, I would ask about hospice and palliative care eligibility.
If I contact the nurse or cardiologist, it is behind my husband's back. I have to use the portal and fortunately he doesn't know how to use it. I was thinking about attempting to reach the nurse that called yesterday via the portal today.
I do go to all his appointments with him and we often come away having heard things very differently. I appreciate the summaries that doctors now provide after an appointment (although I have had to question what's there a few times).