Is CHF back???

[Gnusgal]

It's been years since I've been in active CHF. As a matter of fact, I don't really even remember it, to be honest. But I know I've been treated for it. I've had swelling in my feet and fingers before, and have been on lasix a number of times. However, after my surgery for the ovarian cyst in January I was very light headed and we finally figured out that I was dehydrated, so I was taken off the lasix. Everything has been fine for the last several months, and I put off my 1 year post-op follow up because it didn't seem urgent. I finally called two weeks ago and made an appt. just to get it done before school starts up again. Well, a few days after I made that appt. I started noticing a few things. I went to a friend's appartment on the second floor and noticed I was VERY short of breath for quite awhile afterwards. Then I started realizing that my ankles and fingers were feeling a little bit puffy, but most of all my abdomen. Now, as far as I can remember, I have never retained water in my abdomen. I had originally thought I was just gaining weight from being lazy this summer and not being active enough. But I'm really starting to wonder if the weight I've put on is actually water weight. I've also had the feeling that my food is backing up in my esophogas, if that makes sense. I've been having little bouts of reflux at random times (like at the mall, shopping) and after I eat I feel like I need to burp or throw up to ease the pressure in my abdomen. When I started to notice these things I decided I might as well wait until my appt. since it was only two days away. However, the morning of my appt. the card's office called and canceled because the echo tech had called in sick. So I rescheduled for tomorrow. I'm really starting to worry myself now. I know I will get answers tomorrow at my appt. but does this sound like I might be back in CHF? And what can this mean for my heart valve? Why would this be happening when I seemed to be doing so well for so long?

Anyway, I'm not looking for real answers, since I'll be talking to my card about all this tomorrow. I'm just trying to "get it all out" because it's been eating me up inside. I haven't said anything to my husband, and I'm not sure why. I guess I'm hoping I'm wrong. I suppose I should talk to him about it tonight, just in case I am right, though. I don't think he'd be happy with me if he found out I've been keeping this from him.

Thanks for being here.

 

[Nancy]

Hi Niki-

It sounds as if it could be a bout of CHF, but let your cardiologist have a go at it tomorrow.

Don't get panicky. Joe's had CHF for many, many years. It comes and goes. It can be managed quite well. Diuretics and a low salt diet can keep it under control. If this is what you have, your doctor just has to find the right level of diuretics for you that your body is comfortable with and will make your symptoms gone.

There is a now a lab test for CHF, it is the BNP. Sometimes people can get misdiagnosed with bronchitis and other things, but this test can now tell what is really happening.

Joe also retains fluid in his abdomen, as well as his lungs, legs and feet.

What he does is what most doctors tell their patients. Weigh yourself each day, at the same time, in the morning w/o clothing. He keeps a daily log of his weight along with his temperature. Any weight gain of 3 pounds in a day, or 5 pounds over a couple of days, will cause a call to the cardiologist. They will either up his Lasix, or add Zaroxolyn for a couple of days, and that usually takes care of the situation.

I use no sodium in cooking and keep him VERY los sodium, even baking his bread w/o salt. But his case is severe and has been life-threatening in the past.

If it's what you have, your doc will get you going on the right meds.

Best wishes and take care.

 

[Ross]

It sounds like it, but it could be something else completely different. It's really hard to say. It's best left to the pros and try to stop worrying about it.

Not alot of help am I? Sorry. It really could be anything.

 

[nadi]

I am sorry you are having these problems, but its good your appt. is tomorrow. I don't know if it's CHF or not but it sounds like what I had before surgery and what I am starting to have again.

I hope you get your answers.

Take care,
Nadine

P.S. I'd tell the hubby, if he is anything like mine he will be upset that you didn't talk to him about it before now.

 

[Gnusgal]

Thanks Nancy and Ross for your quick replies. I figure I'm pretty sure about my self-diagnosis, but I will leave it up to my card to say for sure. I know it's managable with meds, but I had such high hopes of having a heart healthy year! So far this calandar year I've only had problems with an ovarian cyst, and nothing really heart-wise. I thought maybe, just maybe, this would be THE year. But alas, it seems that hope is futile. I just wish I could go one bloody year without having to worry over this stuff. Guess that will never happen...

Thanks again, guys.

 

[Gnusgal]

Thanks, Nadine. I did talk to my hubby right after I finished my post. He figures I'm probably right about my diagnosis, and doesn't seem overly concerned (he's busy taming a bantha in Star Wars Galaxies right now). I know I tend to worry over things more than I should and will try to calm myself down tonight. Nothing can be changed by worrying between now and my appt.

Thanks,

 

[Nancy]

Niki-

Please let us know how things turn out.

 

[Gnusgal]

Nancy, I certainly will. You guys are my extended family. I couldn't leave you in the dark...

 

[Nancy]

I forgot to mention that in the past, Joe's thoat has been distended as well, and he has had that choking sensation. As a matter of fact, there was just a thread started by taranjit on that very subject.

I did respond to that as well, but please keep in mind that Joe's CHF is very serious, and has been terrible in the past.

I hate to scare people, but in ordered to help, sometimes I have to talk about difficult issues.

You'll be just fine, I'm sure.

 

[Gnusgal]

Nancy, I actually read that thread just before I posted. I was already feeling like CHF must be what I was experiencing, after reading more about the subject on a CHF website, but the choking thing is kinda what cinched it for me. I hadn't thought it had anything to do with it at first, but it makes sense. I read something on that CHF website that the lining of the stomach can retain fluid and therefore feel more full and make eating difficult.

And don't worry about scaring me. I can do that just fine on my own. I don't need other people's help.

 

[Nancy]

Just remember everything is fixable. You just have to stay on top of it all, which is no easy task.

 

[Gnusgal]

I know, that is what I keep telling myself. But my family has what we like to call the "worry gene" (this goes hand in hand with the "Gilly guilt gene") and no matter how I try to rationalize things I cannot help but worry.

Actually, at this moment I'm worrying over what my card is going to say to me when I see her. She'll probably "yell" at me for not calling her as soon as I suspected soemthing. She's somewhat like a mother hen to me. She "yelled" at me for not calling her about my ovarian cyst. I told her I didn't really think it was her field, but her reply was that she could have worried for me, which is EXACTLY what my mother says when I don't tell her things right away. Which reminds me, I guess I'd better call my mom and tell her in the morning so she doesn't yell at me too... Boy, you try to keep the worrying to yourself, and everyone complains....

 

[Nancy]

Don't worry about anyone else, just worry about you. They can all take care of themselves.

Tomorrow, you can just hand over your worry to your card.

Have a good night's sleep. Help is on the way.

 

[ccrawford]

Hey Niki - Can't help you a bit with diagnostics, - just wanted to wish you well and hope you have an uneventful visit to your cardio. I bet she'll get you back in shape pretty quickly and then we'll see nothing but smiles. Let us know how it goes.

 

[fyrfytr]

Hey Niki,
Just wanted to let you know that you are in our prayers and hope that everything turns out OK. Take Care
Dave

_________________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[sylviayasgur]

hey niki!
just wondering if you ever got a hold of your cardio and what they said about your symptoms.
my dad went through that about 6 months ago, swollen ankles, hands, s.o.b. and chf.
he was given lasix and was some time after that.
please let us know what the doc said.
be well, sylvia

 

[Gnusgal]

Well, I saw my card today. And she has a theory, and I'm willing to agree with her. She thinks that perhaps all the hormonal problems I've been having the past few months (I talked about that in another post last week I think) I am retaining fluid due to THAT, and that is causing my heart to have to work harder, and giving me the shortness of breath and other symptoms. The reason she's going with that theory is because my heart sounds fine, and from what they could tell on the echo it looks okay too. However, it is getting very difficult to get accurate readings on my echos with all the scar tissue and the reflection off the mechanical valve that she wants to get a better look at things with a MUGA scan. I had one about 5 months before my valve surgery, so she's hoping to compare the two results. She went ahead and ordered some blood work and started me on lasix. My MUGA scan is first thing in the morning (7 am). Fortunately, this time they have said they will NOT be using my juggular vein for the scan (last time the people doing it did, and I was not happy). Anyway, right now it is a matter of wait and see. Hopefully the lasix will start working it's magic.

Thanks everyone for your thoughts, prayers, and encouragement. I just hope that whatever is going on can be fixed SOON. I'm tired of all my clothes feeling a size or two too small...

 

[nadi]

Good Luck

Good Luck

I'm going to be nosy what is a MUGA?
Good luck on you test in the morning.

Take care,

 

[Gnusgal]

I don't remember what the initials stand for, but essentially they take some blood, tag it with some sort of radiation or something, then send it back through your body, watching where it goes through a cat-scan type machine. It should give a better overall picture of my ventricular function than the echo did. Apparently my windows are all kinds of messed up from the VR surgery. When the tech did the test she told my card that the function seemed to have deteriated since the last time, but my card said it didn't look as bad as she had feared. But that leads me to believe that it must be SOMEWHAT bad, or she wouldn't be saying "as bad," right? I promise not to worry, I promise not to worry, I promise not to worry.... Think it will work?

Seriously, though, I hope the MUGA scan gives us the answers we want (that I'm doing just fine!).

I'll write all about it tomorrow. Thanks all!

 

[Jean]

Niki...hoping for good reports from your test for you. Hang in there. I know it is disheartening to have set backs. I remember how devastated I was with my second cancer diagnosis. But after the tears, curses, and rage, I picked up my war gear and did battle and defeated it again....you'll do ok!