For My Mother

[emmyvera]

Hello. This information concerns my mother who is 64 years old.

About 2 months ago my mother had a heart attack. She was in the hospital for over a week. They sent her home on meds. A week later my dad took her back to ER because she said something wasn't right and she felt horrible. They then concluded she had congestive heart failure and needed a pacemaker for one side of the heart and meds for the other side of the heart. She also had over a pint of fluid in her lungs, which they removed.

For the last month she has been home until yesterday. At home she was at rest almost the entire day and sleeping. I know she was tired from all the tests and restless sleep in the hospital. Since she's been home, I've noticed she is eating less, more picky about food, easily anxious and is losing weight, she doesn't do any activities and sits upright in the chair.

Her symptoms include: Terrible cough, has trouble walking, is up at night coughing and has to have head elevated. Constipation, loss of appetite, nausea. Edema in her legs and the fluid in her lungs. She also seems easily confused and not her normal "sharp-minded" self.

I am very concerned. My dad is taking care of her and trying to stay positive and we are visiting every weekend. She had a dizzy spell the other day and she asked dad to take her back to the hospital. My mother doesn't like to be there and wouldn't ask to go unless she felt really bad.

I talked to her last night (she has been admitted again) and she said she was tired and they had her on oxygen but she had shortness of breath. The doctors said they were going to take more fluid out the lung that they found on a scan. They concluded her dizziness was a result of an A-Fib. So know they have doubled her heart meds.

My concern is that no one is staging the heart failure (which I believe it is) and they just give her a new med and send her home. We demanded yesterday that we receive a cardio-healthy diet routine so we could at least help her eat the right things to give her energy. I feel that the doctors aren't giving any outlook good or bad and just keep saying "I don't know". When I mention the CHF again, mom and dad act like they don't remember the doctors saying that. As my parents have been through so much I know it easy to get confused.

She has a lung doctor and a heart doctor. The heart doctor said a week ago that the pacemaker was great and tests came out good. The lung doctor keeps giving her new stuff for her cough. Last week it was antibiotic for the cough, this week he said he wanted to give her asthma meds. They keep giving her something new each week for each symptom.

What my husband and I want to know is: What is really going on here? Is she in bad shape so they just keep subsiding the symptoms to make her comfortable or do they really know how they can help treat her heart so she has some time left with us? I am very sadden and would like to have more information. But the doctors are literally saying - they don't know.

Thanks for any help :)

[emmyvera]

Thanks!

Mom had more fluid from her lungs removed yesterday. They said there was more than last time even. They are going to try different treatment and meds. They said she might come home today. She is so strong and staying so upbeat.

Will be good to see her this weekend!

[ChatterAlly]

Posting in here is never a problem for any of us.  We are here to offer support.  Please, feel free to post in here or send me a message any time.  Take care, Ally

[emmyvera]

Also, I just found a link between what you mentioned and the Coxsackie Virus! Which they mentioned she had a few weeks ago. The doctor said he would check again in a couple weeks to see if the levels were still high. He wouldn't make any direct links yet until he saw the test results. And now she is already back in the hospital. I sure hope they check. I think that is another piece of the puzzle. Sorry I keep posting but with me not  being there I feel like I'm totally out of the loop.

Thanks!

[emmyvera]

Thank you so very much for responding. You wouldn't believe how much I appreciate it.

I did read what you suggested and did some research on hypertrophic cardiomyopathy. And it definitely a possibility BECAUSE.... the doctors have said from day one that her heart is rigid and/or stiff. And that was causing most of her condition. I had just failed to mention that earlier.

I'd be interested to find out what exactly they are calling this and if it is a cardiomyopathy.

I do know also that they said she had NO blockage at the time of her heart attack and all the normal scans/tests checked out good. So that is another factor. She also has little history of family heart problems and never drank or smoke... Just interesting factors I think.

The one rare point in all of this that I hadn't gotten to up above (I must apologize...there is so much information lately it gets complicated)..... is that in the 1980's my mother was a cancer patient of Hodgkin's Lymphoma and was obviously a survivor. A doctor at her hospital actually suggested about 6 weeks ago that her stiffness of her heart could be from the radiation she had in the 80's. From what I have found on through research is that she isn't the only one out there. There are other people who 20-30 years down the road have heart trouble stemming from the radiation. She signed a release at that time as well that agreed to the treatment with the understanding of what could happen decades later.

It will be most important to find out what the cause is so I may find out if there is any hereditary factors.

Thanks so much!

[ChatterAlly]

Hello there.  I am sorry you are going through all of this.  I was thinking that by what you are describing, I have to wonder if the doctors feel this is a form of cardiomyopathy or not.
I am certainly in no way able to give any diagnosis, but would like for you to do some research on this.  Here is a link to one of medhelp's posters I think you might benefit from reading.  

http://www.medhelp.org/posts/Heart-Disease/Hypertrophic-Cardiomyopthy--with-A-Fib-and-PVCs/show/1320590

Take care, Ally