Questions to Ask About Heart Failure

[KimC]

Hi,

I don't have high BP, severe aortic valve disease and have never suffered a heart attack yet my cardio put me on an ACE-inhibitor and I feel less symptomatic. In fact, the change is dramatic, i.e., no chest pain or sweating with palpitations at night. I'm also breathing more freely. Given my most recent cath results, it's possible that I'm experiencing diasystolic failure vs. systolic. (My EF is 50%).

Although I don't like to make assumptions, I'm convinced that I'm in early heart failure as I have experienced progressively worsening symptoms. My primary care doc mentioned this possibility to me a few weeks ago but said it was only his conjecture and that a cardio should confirm.

I meet with my doc again tomorrow to discuss my upcoming cath, and would like your input on what kind of questions I should ask. (I'm way over my head here). Some thoughts are staging, etc. Please include any Web sites that you think are most informative.

If I am in heart failure, then I will push for the most agressive care to prolong my quality of life.

Please help if you can provide advice, info, personal experiences, etc. For those of you in our community who have CHF, did you notice a difference after taking an ACE?

Thanks as always,

 

[Nancy]

Kim-

Heart failure is quite controllable. Joe's had it for so many years, I can't even remember when he didn't have it. He's been in all four stages of it too. So people can and do live for a long, long time with it. BUT--you have to have excellent care and a cardiologist who is aggressive with it, and is willing to speak with you about it any time you call, or can have someone on staff, a NP or PA speak with you AND, the most important thing, do something about it.

Joe has had to call his cardiologist's office very frequently. They have been just super. They respond within a couple of hours, he can get a same day appt. if it is necessary, and they know when to increase his diuretic and when to pull back on it. They also are not shy about admitting him into the hospital if he needs IV diuretics.

He has at least monthly blood-work to check just about everything, including kidneys. It's usually the complete metabolic profile. He has to have it anyway for one of his other drugs.

His diet is extremely low in sodium because he can go into kidney failure easily, since he has to be on a rather large dose of Lasix. Keeping his sodium low also keeps the Lasix dose as low as possible for him so his kidneys aren't stressed.

Joe weighs himself every day at the same time w/o clothing. If he has gained 2-3 pounds in a day, he calls his cardiologist for instructions. So he rarely gets too far above his desired weight. That's been very important in the management of his CHF.

There have been times in the past when he wasn't so well managed that his weight has gone up by 20 pounds or more, all of it fluid. I'm sure he'd tell you that he was also not the most compliant patient when all this was going on, younger and foolisher (is that a word?)

He's made a lot of sacrifices to keep his health, but we've had some mighty hard lessons to learn along the way, none of which I would want him to repeat.

Some of the ways the doctor can check a patient for CHF is by listening for crackles (fluid sounds) in the lungs, palpating the belly to check for fluid accumulation there and checking the extremities for edema. There is also a BNP test that can be done. These are all in coordination with the patient's symptoms, SOB, trouble sleeping lying down w/o lots of pillows, dizziness, faintness, fatigue, and sudden weight gain.

Here's a website which is an excellent resource. It is owned by a fellow who has CHF. I learned a great deal there. If you start with the Manual, you will get a good idea of the entire process.

http://www.chfpatients.com/index.html

Anyone with CHF can do a lot to help the condition, but it also needs proper medications and enough of them to get the job done. Can't stress enough that careful cardiac care is so important.

You can ask your doctor what signs you should be looking for, and at what point and with what symptoms he/she would like to have you call. You can also ask what they will do if you should have to call after hours, and if someone will be covering for them if they are not available. There have been times in the past when the doctor had to call in a script and I had to go to the all night pharmacy to get some additional diuretics.

Remember this a controllable condition, and that even if someone is in Stage 4, there is help available. Joe's been there and done that. It wasn't easy at that stage and it took a long time to get him straightened out.

Most people will not get to that point. But Joe's uncontrolled pulmonary hypertension combined with his CHF (which was not being managed well at all at that time) got him into Stage 4 rapidly.

He's been very stable for more than 2 years now, and is probably in Stage 1, or less.

I am sure you will never get to the point that Joe has.Just make sure you have a good rapport with your card.

 

[KimC]

Nancy, there's a special place in heaven for you. Thank you ... I would hug you if I could!

Many blessings,