Atrial Septa, how long do you think she has to live?

SWright2,
It sounds like you want a "timeline" or a "date" so you can be there when your mom passes.
That's a loving thought.

But, since you work full time and you sleep (hopefully) 8 hours a night, possibly commute an hour a day, make stops after work, etc., you may have only 6 hours a day to be with her. You can't guarantee that she'll pass during your "free" time.

No one can give you an exact time when your mom may die. You could take time off work now and she could live many more months or longer.

As a nurse, I've had patients that seemed to wait until all the family members went home or stepped out, to pass on. I believe some people just don't want to burden their loved ones with watching them die. My dad did that.

Please don't feel guilty if she passes without you there. She knows you love her. If she believes in an afterlife, chances are she's at peace with transitioning from this life to the next.

Enjoy every moment you have with her. That's what counts.

It doesn't sound like she's near the end if she's still walking (even though she has exertional shortness of breath). The human body adapts to many illnesses and lung disease is one of them. Filling up with fluid is a problem. Too many diuretics can "wash out" too much potassium. Vicious cycle.

When the time comes, I hope you'll consider hospice. They can be of great help to both you and your mom. They will provide a hospital bed, commode, suction machine, oxygen, order meds to help her breathing, etc. It's a free service through Medicare. After her passing, they offer grief counseling for a year afterwards (free).
Please be sure to understand that hospice is for the last part of life. They don't do curative treatments or procedures. They will have to discharge her if she goes to the hospital EXCEPT for comfort measures. (If the fluid causes pain, and draining it would relieve the pain, then it's covered.

I'm sorry you're in such an anxious state. Do you have a therapist you can talk to? It often helps as you have to take one day at a time.

Swright, my mom had very similar issues. She had a stroke and lived in a NH for 4 1/2 years. We did two lung taps, after which the pulmonologist said to me "stop poking holes in your mother".

 We opted at that point for palliative care, meaning that we were just going to treat symptoms and not try to cure anything. No more ER or hospital visits, just comfort care. Eventually, mom fell in the NH and broke her wrist. For whatever reason, she simply gave up at that point and never got out of bed. She developed pneumonia, which we treated, but she did not rally.

At that point, we brought in hospice who treated her pain (it was hard to tell if it was physical or psychic, just horrible grimacing ) with low doses of morphine. She passed very peacefully.

But 4 1/2 years!

BarbBrooklyn - yes she has along with pulmonary hypertension. She is on oxygen 24/7 at a level 3. Now she is starting to breath heavy when she walks from one place to another and sits down for "2 min to catch her breath".
I just wondered if she will go peacefully in her sleep or if she will be in pain for a long time before she slips away. I don't want her to go alone in her bed so I wondered what the final stages might be so I can be there. I work full time so I would have to take a leave of absence to be with her. I don't know if she will have sudden cardiac arrest or will slowly stop breathing. I have asked two separate cardiologists and they just say well, she's lived this long.
I just don't want her to be alone. She has dementia and does not think anything is wrong with her - says she is in perfect health.

Has she been diagnosed with congestive heart failure?

There is a limit to how much Lasix a person can tolerate, but it might be worth asking if the doctor would consider trying another diuretic instead. Some people get better results from the alternatives.

I think the point about this defect is that it really *isn't* an issue. It's just been there, forever, making no appreciable difference.

But on the point of how worrying and sad it is to accompany a loved one through heart disease, yes, lots of experience and please accept lots of hugs from me. Wishing you peace of mind and your mother all comfort.

I think you all said what the doctor said when I asked - She's lived for 86 years with this hole and who knew she had it until now and no one knows how much longer she has. He does not know how long. He said he would not increase her lasix bc that will cause other issues. She goes to the cardiologist every 3 mo and they take her blood pressure and that's it. She's been in the hospital twice in the last 3 years to take fluid out (thorancentisis). She was in the hospital in Dec and now her feet are swelling again.
I just thought someone on here would have some experience with this type of heart issue.

Only her doctor can give you a meaningful answer to that, and he may not be able to predict how much time she has left.

From her meds, it sounds like she has some cardiac issues which may be related. I would talk to her doctor to get a better understanding of what is happening and lies ahead. I understand this may have been a shock to you.((((((hugs)))))

It sounds as though "leave well enough alone" is the best advice I can give.
She is 86, had this from birth, and is frail.
Even if the surgery could be done there would be a long recovery period which would be very taxing for her and some other complication could take her life.
Try to stop worrying about when Mom is going to die and enjoy whatever time she has left

That's what I was going to say, Mac! - how long to live? Well, a minimum of 86 years, apparently.

SWright, I'm sorry - I don't mean to sound as if this isn't something to be taken seriously, and the worry must be very difficult for you. But I completely agree that the important thing to do is to understand as much as possible about your mother's chronic heart condition. As she is taking Lasix (a diuretic, to reduce fluid overload) and Eliquis (to stop her blood forming dangerous clots) has she been being treated for atrial fibrillation and/or heart failure and/or some kind of valve problem for some time?

I'm just wondering if she recently had an echocardiogram and the physiologist said "oo look! A septal defect, who knew?" or something like that?

The point is, that this malformation has been there as long as your mother has and she never needed to know about it. Ask her cardiologist if it might have any implications for her care going forward, but it doesn't seem likely that it would if it never has before.

Atrial Septal Defect (ASD or "a hole in the heart"). Did you ask her cardiologist about the prognosis? It really depends on many factors that only her doctor is privy to.

Look ASD up on a reputable site like Mayo Clinic so that you'll understand better and can ask better questions. Then call the doctor.