My 83 year old mother recently started weekly Bumex IV infusions to take off excess fluid in hopes of preventing another massive fluid overload and subsequent hospitalization. The cardiologist also increased her daily Toresemide rx to 40mg 2x daily.
Once a week IV infusion wasn't doing anything, so Mom just started a 2x per week schedule.
Mom's cardiology APN said Mom is still Stage C CHF, but she's "real close" to end stage, however Mom's a "fighter" with no intent of "giving up."
In the meantime, she has progressed to CKD IV as kidney function decreases. And then there's her diabetes, high blood pressure, high cholesterol, etc. to manage.
So, all that said, end stage CHF is coming, but of course, no one can forecast when.
I know some of you had parents or spouses with end stage HF. Will you please share your experience?
The biggest difference between the two stories is that, where Daughter's dad's cardiologist spoke to them about letting dad stop treatment and go into hospice, my mom's cardiologist tried all sorts of treatments to extend my mother's life - if you could call how she was existing a life - because he didn't want to seem to be "giving up" on her. I finally had to ask him point blank "don't you think it's time we had a conversation about hospice ?" to which he hemmed and hawed but finally admitted that there was no treatment short of a heart transplant that would magically give her back any sort of quality of life. She began hospice very shortly thereafter.
My mother, too, was tired of fighting it. She was not afraid of dying, but she wanted that death to be as comfortable as it could be made, and hospice ensured that. She lasted 8 weeks before she died; she was "transitioning" for 4 days in total, with the first 24 hours being somewhat responsive, but then the last 72 hours unconscious. But we were able to keep her home and comfortable and in the end, even though it was hard to watch, I am very glad we were able to provide a peaceful passing to her.
I will say that the decline at the very end was quick, she went from a relatively "stable" baseline to gasping for breath in a period of about 20 minutes. I am so very grateful that hospice was already on board and I had all of the medication I needed, because this happened on a Sunday afternoon and if I hadn't had access to the EOL medications it would have been a call to an ambulance and a trip to the ER, which my mom wanted to avoid at almost any cost.
In fact, the hardest part for me of the entire journey was to NOT call 911 when my mom was at the end. It took all of my willpower to tell myself that this was what my mom wanted, and I was in total agreement with that decision. But it was still so against what my mind deemed as acceptable behavior - someone clearly needs help that is not within my power to give, so I should call someone who is capable to give the help needed. I struggled with that somewhat after my mom died. It helped very much coming here. I was eventually able to embrace the idea that my inactions didn't kill my mother, the heart failure did.
I sincerely hope at some point you can get hospice on board for mom, to make her passing as peaceful as possible. But in the end, it is your mom's decision and the best you can do is support her as much as you can live with. I know how much it sucks, but please remember you're not alone in this, and many of us have been through what you're going through, and we understand.
I understand what you mean about hospice as well. We had hospice for my dad, and he too took a turn on a Sunday. Then a rough Monday and he passed early on a Tuesday, in his home, in his own bed, just the way he wanted.
Mom is willing to try anything the cardiologist suggests at this point, which is her choice. Her kidneys are also failing though, so she needs a blood panel with each IV infusion to monitor kidney function.
My mom had a summer like that in 2024. She was using a walker, had a three week hospital stay, followed by a three week rehab stint using a wheelchair, and is still in the wheelchair.
There's little to say here other than what your doctor said.
I think that you said in the past that her heart failure doesn't come with a whole lot of breathlessness; that she is able to breath without sitting up, and she doesn't go into what we discussed last time, the "flash pulmonary edema" which occurs quickly and without warning and can result in death. You said her fluid is more in the periphery and now abdominal if I recall.
We are now, however looking at hypertension and at kidney problems. These are the major systems, the heart, lungs and kidneys and there is lots of interplay going on with the hypertension.
Only your doctor, your MOM'S doctor, knows her case. And they have told you that you are close to end stage. For myself, needing a lot of intravenous medications and hospitalizations for that was indicative of end stage, but you will also have the "numbers" with ejection fractions and so on.
I am unclear here what you are asking really. But I would discuss with mom if she is or is not willing to go through dialysis if it comes to that. There is fighting and then there is torture. Fighting to stay is one thing, but when staying is without quality of life? Well, that is--as so often we discussed here with you--Mom's decision while she's able to make it.
There are many on this site I would imagine who have dealt with heart failure. I dealt with it daily as a part of my job. What I can say is that no two patients I EVER had were mirrors of one another. Each person is absolutely individual in how they process and tolerate meds and treatments. What one person here experiences will not give you much of an idea to go on.
This is basically down to one day at a time now, and of making time left the best quality you are able to.
My heart goes out to you.
Mom does also have a HFpEF diagnosis.
Last summer she was hospitalized three times for massive fluid overload and pleural effusion. She had a thoracentesis around a dozen times--each time pulling off around 1 liter of fluid. Sometimes 1 liter off the left side and greater than 1 liter off the right side at the same time. She was also on O2 because otherwise, she ran at around 85 % saturation.
She got off the O2 last fall and hasn't needed it since then.
This year is all about fluid buildup in feet, legs, and abdomen, however she does not report shortness of breath.
My AG access is spotty so I'm typing fast before I get flagged as "Spam Content" and locked out again..
The end came very fast. I noticed when she was in her summer clothes that she lost an incredible amount of weight. Her upper arms were skeletal. She also developed purple blotches on them.
she said her stomach hurt and she couldn’t eat anything. The NH said she was now at end stage CHF and suggested hospice which we did. She needed pain meds and was given Ativan for anxiety.
She began seeing people who were not there who were singing to her. It took about two weeks from her being on hospice until she died. At the end she had a large oxygen mask, not the cannula she had been using. She was given morphine and died. It was a peaceful end.
good luck!