Please Help CHF

[emmyvera]

Hello,
I am seeking information about my mother's health. To make a very long (2 month) story short. ... My mother has
symptoms of CHF. She has shortness of breath, terrible cough (never smoked), edema of legs and ankles, fluid in her lungs (drained twice), little appetite, lately confusion, doesn't sleep, anxious, extremely tired, etc.

Heart attack, 2 months ago. Fluid drained from lungs twice. Pacemaker put in a month ago, meds for the other side of the heart as well. This week back in hospital with A-Fib. She is on all the meds that I can find that are related to CHF. They won't tell her that is what it is and now they are trying another round of new treatment and meds.

Here is my question.... Is she stage 4? Because they are trying to track why this is all happening (which I think I've researched with them saying she had high levels of the Coxsackie Virus a month ago and they said her heart is rigid and stiff. So I think this has led to her CHF symptoms but they don't want to tell her that and worry her.

I want to know if she is stage 4 and how long is left. I hate to be morbidly candid, but she is the most important person to me and I live 2 hours away. So they more I know about being with her, the better.

Are they just keeping symptoms at bay and trying to treat best they can in hopes they can hold out her life? How long is left? I am worried, because they aren't informing us on the severity and I NEED to know. I am an only child and if she is going to pass, I WANT to be there as much as possible.

Any help and guidance is greatly appreciated.
Thank You

[gmachris518]

I can't say whether her stroke could have been prevented if they had checked her pacemaker, or not.  However, if they were that careless about her pacemaker, then one could assume that they were careless about other things too, and therefore, perhaps the stroke could have been prevented.  

You will never hear any of the above from the mouth of medical person, though.  They stick together like glue and won't point the finger of blame at anyone in their field.  

[emmyvera]

Well, we are back with no so good news. The last 3 weeks or so have been good news and great doctors visits. So they have said.

Then Friday night she had a stroke. She is in a different hospital - thank goodness! Her stroke was mild, but she has much therapy to do. All the cardiologists and neurologists are checking her out and her pacemaker was finally monitored (FOR THE VERY FIRST TIME)... so when they checked it.. they found that she has had many afibs and we were all in shock. as her cardiologist closer to home never checked her pacemaker! Now she had a stroke and her whole world is upside down. They want to do a MRI of the brain, but can't because of the pacemaker. Neuro. said she will most likely put on Coumadin, ONLY IF they make sure she has no swelling/bleeding in her brain. At least the new hospital knows what to do. I just hope all this isn't a horrible set back that could have been prevented.

My question is:
Could the stroke have been prevented if they would have had checked / hooked up her pacemaker to be monitored? Does anyone know this answer?

[grungema3]

Me and you both! As I have said many times on this site, if you live in the UK they don't even tell you your blood group, never mind details of what's wrong!
You have to play the game of being stupid because they are the omnipotent medics and you are the lowly patient, relative.
anyway, take heart! (sorry , unintentional pun).
My mum has all that and much more. Angina 60s, quad bypass 70s, in and out of hosp with hf + pulmonary hypertension.
she has just been discharged from another spell in hospital, Fluid overload, too frail to operate on leaky valves. she's sleeping in the same room as I'm typing this - aged 90!
We have had countless frights with her and every time we ask it's "It could be tomorrow, next month or years"
What we did was to make an appointment with the consultant cardiologist. A doctor friend (someone on this site could probably help) told us exactly what to ask, what they could do, and what was the prognosis.
If your mum is young enough ask if there is any surgery which could improve her situation.
If not, as with my mum, there are so many drugs which help but the most important thing is to watch for any swelling. Feet, ankles, fingers, face, tummy. Don't wait for an appointment with the doctor. We take her straight to hospital and they deal with it before it gets too bad.
I just think they don't know re. your mum's prognosis as she is at the moment. Theyve got to stabalise her on the right meds + monitor her actual heart.
I would make the appointment, copy the post you wrote and tell her doctor that you were so desperate for some answers that you posted the question on here.
In this Country they have to tell next of kin what to expect, and the patient themselves. I don't know the rules in the US.
Remember, you've had such a terrible shock with your Mum so you will be feeling over-anxious anway. From my own mother's experience i can tell you that CHF can be lived with and the patient can have a good quality of life. Mum is very frail now but 2 years ago she was dancing at my daughter's wedding!
Take Care and Good Luck

[gmachris518]

Again, I can only speak from my own experience, but last week I went to see a new cardiologist because I was having problems with, what seemed to be, heart attack pain.  After reading my chart, he strongly suggested a defibulator for me(not the first time I've heard this), saying that I could suffer from sudden death syndrome.  He is the first cardiologist to come out and say something like that to me, and it was a bit of a shock, even though I knew from my own research how ill I really am.

I don't know what your mother's situation is, and whether her doctor is just trying to save her from worrying, or  they just don't know. But I do know that I've had CHF for almost 4 years, and with diet, excercise, and medication, I do pretty good, most of the time.  It's a full time job to do everything I need to, to survive, perhaps the doctors don't want to discourage me, I don't know, but I do know that they withheld the information from me until last week, and I'm not sure if that's a good thing or not.  So, I imagine your right about your mother's doctor, and that they are trying to save her from worrying, but I don't think it's fair.

I hope the best for your mother and you.

[emmyvera]

Thank you so much for your response! Since they took out the fluid she has had a GREAT weekend and in wonderful spirits! Hopefully, the new treatment and meds will make a great difference and she will work through this.

She is so positive and strong and that is half of it. It's a roller coaster ride, but right now we are on the up and up.

Thanks again,

[gmachris518]

I can only speak from my own experience, but I'm stage 4 heart failure and there is a lot that can be done to help if the doctors are cardiologists.  My EF is 20-30, and my heart is enlarged and weak from a super virus about 3 1/2 years ago.  It left me with a heart and kidneys that struggle constantly to keep me alive.

CHF won't necessarily kill a person, but some of the smyptoms, such as fluid in the lungs, might.

In any event there is no way of knowing how long your mother has, or whether she might actually get better.   It's up to her, her doctor and the Maker.

I hope the best for her......