timeline of symptoms presented & surgery?

[bethanne]

How long after the onset of symptoms beyond fatigue before you had your valve replacement?

Last week when I was feeling so bad that finally, went to my PCP she gave me an antibiotic and a diuretic and a script for a chest x-ray. It wasn't until 4 days later when I could see the veins on the top of my foot that I realized how much swelling I had had with my feet. That reality really hit hard! I did make it down to methodist to get my chest x-ray done today. The reality of the real soon possibility of VR has been a wake up call. On one hand I have felt more and more tired but on the other hand I have been making excuses for everything.

Although the swelling in my foot is down, I am still retaining fluids, hands, face & abdomen causing discomfort and stomach pains
I did not have the pains that I had had 10 days ago when I walked today, but I did walk at a reduced pace. (Looking back that was probably related to the swelling) and getting from the parking garage to radiology was quite a walk . I was very winded and had to take a rest on the way back. (stairs, etc.) I am wondering how much i should be doing?

It will probably take 2 days for the results (chest x-ray to be sent to my doctor and then if they say what i think they will say , then sent to my cardio. My 6 month echo is scheduled for the 26th with cardio visit march 3rd. I am wondering if I should have that moved up? I guess my cardio will call if the x-ray calls for it.

I have observed many posts where some of you have mentioned that once symptoms have presented themselves it wasn't long before you had surgery. I am curious to what you consider the significant symptom and the timeline to surgery?

What do y'all think?

 

[Nancy]

Hi Bethanne-

If you are experiencing such congestive heart failure symptoms with all of the fluid retention, you should be calling your cardiologist immediately. You really need to get rid of a lot of fluid fast. Once it starts to impede your breathing then it's time to call the cardiologist. So call tomorrow. Only your cardiologist will be able to tell if this is a CHF flare-up and can be dealt with or whether this means surgery is warranted.

Do not wait to call the cardiologist, and if at any time you aren't feeling well, please go immediately to the ER and have someone else drive you.

Sometimes they can give you extra diuretics like your PCP did, but other times you will need IV diuretics in the hospital. They work much faster and more completely.

You mentioned pain when walking, do you have a rash or anything like that on your feet or legs? Joe has had fluid retention so badly that it causes a condition called cellulitis which is a skin and tissue infection and requires antibiotics. Your doctor gave you those I see, but anyway, call your cardiologist with all due speed.

 

[Abbanabba]

Hi Bethanne,

I started noticing symptoms about 2 years ago now; I couldn't walk as far without getting sort of breath, was feeling more fatigued, was getting occassional numbness in my fingers and toes. I originally got tested for all sorts of other things because I never considered my heart the problem - mainly, I think, because I was never advised what to be on the lookout for.

Anyway, I eventually made it to my cardio who suggested I get my replacement within the next 12 months. I decided on November last year, but when I consulted with my surgeon in September, he seemed to think I could wait another 12-18 months (.."follow up with your cardio in 6-8 months to see how things are looking"..).

Things have now gotten to the point where I'm on disability because I can't even handle a desk job any more (..and this summer heat is killing me..). I'm going in to see my cardio this Friday to insist on getting a surgery date.

Unfortunately, my heart is already permanently enlarged (..always has been..), so I don't know if this has had any bearing on how long they are letting things go. I know there are people (..like Deb..) who are pretty asymptomatic right up until they go in for surgery.

I guess all we can do is put our faith in the professionals and get a second opinion if we're not convinced we're getting the right answers (..although this has been a bit hard for me since there is only 1 cardiothoracic surgeon (that I'm aware of) in my state!..).

Cheers
Anna : )

 

[bethanne]

Nancy -
Looking back I do believe that the leg pain was caused from lack of oxegenated (sp?) blood supply. As I decreased the pace the pain subsided...

On sunday, I was pretty upset when I realized that my feet had been so swollen the previous week. My pcp did not even ask to look at my feet or inquire. But I was the one who did not get the chest x-ray right away. That is this denial thing, I was glad the dr. was non-chalant so I could pretend it was just a bug.

I am going to call today, and get my echo moved up.

Finances are an issue for us right now, and that is part of why I was so hesitant to go to er because when you mention heart condition they tend to be very aggressive and admit 24 hours.

We have been on a cobra plan, and just got approved for a group policy Feb 1st for our business. I am concerned about coverage, my husband believes there may be an exclusion for coverage for 1st 6months with pre-existing conditions. I think this is the old way insurance companies did things, but I am going to look into this today....

I have been restricting salt and really watching what I eat, but I am wondering about drinking fluids, should I be watching this as well? I will call my pcp today too!

Thanks for the support!
Beth

 

[bethanne]

anna,
I hear you! It is so frustrating.... It was just last august that my cardiologist said my numbers were good and that I should look elsewhere for my fatigue issues.

My gyn (October) said all my hormone levels looked great....

The holidays were so hard this year. I was so exhausted. Both of my sisters were diagnosed with Hoshimoto disease this past year (auto immune disorder that attacts the thyroid) so I went to my pcp to explore thyroid issues (december) and those tests came back clear. She said you need to talk to your cardiologist regarding the fatigue issues.

It is the merrygoround syndrome, but I am the one getting dizzy... It has been an eye opener to find this site. Knowledge has given me the courage to be bolder and ask more questions...

I hope you get resolution soon!

beth

 

[Nancy]

Hi beth-

Finances can be such a BIG problem, especially when you have a serious condition. The ER certainly is aggressive when it comes to heart problems, with good reason. Heart problems can kill people. They have to check things out and keep people safe.

Letting CHF symptoms go without getting cardiologiy input can be dangerous. While I understand your financial situation, I am also concerned about your life. CHF isn't something that one should ignore. It can and has worsened for people suddenly, especially when they start to exhibit symptoms such as you have. I just can't say, let it go. I'll always say go and talk to the experts and get immediate help. I've seen too much with Joe, He has had some very sudden problems.

Being safe is always the best way, even if it's a pain in the behind.

 

[Raverlaw]

Bethanne,

The symptoms you mention could definitely be CHF and I agree with Nancy and the others about seeing your cardiologist right away.

My SOB really started about two years ago, but I never connected it with my murmur until my PCP mentioned it at a physical in October. Since my stress echo in November and the cath in December, I have noticed my SOB getting worse; and NO it is not just my imagination! In addition, I've started to have irregular heartbeats when I'm tired or stressed. The tingling in my left arm doesn't occur any more, but I think that's because I'm not exercising at all except for a slow half mile walk every evening on level ground.

I'm now at the point where I would probably go to my PCP and ask why I'm so tired and SOB all of the time, but I'm glad he caught it last year and got me in the pipeline for surgery.
Don't wait!

 

[Harpoon]

Like Nancy said, if you're experiencing severe signs of CHF like that, extensive swelling (edema) in your ankles and such you need to let your cardiologist know right away.

Are the leg pains like cramps or just a general aching kind of thing? Poor circulation (heart related) can soemtimes cause your legs to ache. mine did that on occasssion.

if you're on heavy diuretics you could be losing needed potassium and that would cause cramps in your legs and possibly other areas. I used to get a WICKED cramp in my right calve from a lack of potassium. It would wake me up at night, sometimes screaming a bit and I have a pretty high tolerance for pain (the nurses yelled at me more than once about that one, not complaining when I should have been.)

I've found the fastest remedy was to eat or drink somehting high in potassium like a glass of orange juice (check the labels, some have more potassium than others, some brands of OJ have NONE!) or eating something like a banana or dried apricots.


If you're retaining so much water you might want to look at your diet some. Talk with your doctor about it but a fluid restriction might be in order as well as reducing the amount of sodium you take in. Check out the recipe section here for a lo of good stuff or go to a site like Amazon.com for heart healthy, low sodium cookbooks. Good stuff.


I got "sick" about 2 years before I had my vr. It started innocently enough with a cough that got bad enough to give me a hernia. in trying to treat the cough I had a chest x-ray which showed an enlarged heart and that lead to an echo which showed a problem with part of the mustard repair to my heart so I went on lisinorpil to try and close up the leak. Later that summer my wife and I noticed edema in my ankles and my cardiologist put me on lasix and spironolactone. That fall we found the leak in the valve and as winter set in I was sent off to Cleveland after having some terrible coughing fits that lead to vomitting for a heart transplant evaluation. They found the leak was much worse and the valve was deteriorating and scheduled me for surgery to repair or replace the valve. Through theis whole period i gradually felt worse and worse but it was a slow process and I really didn't feel "terrible" until the last two months before surgery. I had lost my voice, was coughing incessantly, I could barely function, had trouble sleeping. I still had a strong appetite but a lot of things would make me sick. I walked into the Cleveland Clinic in stage four heart failure, liver failure, kidney failure, and barely alive, though no one knew all that until after they had the results from some of the pre-operative testing they had done. By this point I was already on life-support in a PICU...

About two and a half years from the point the cough first started. That first summer after the cough started I was asymptomatic. Everything went away for the whole summer which threw everyone off. It all came back about mid-way through the Fall with a vengence.


I guess everyone's case is different. I had a lot of "pre-exsisting conditions" that didn't help matters. I have a congenital heart defect which was corrected through surgery as an infant. I lived a fairly heart healthy life until I was about 28 when the cough started... I had a VERY rough time in Cleveland with the heart valve replacement and a fairly long recovery period after that, but now I'm about 90% of where I was before the cough showed up.

Ideally, as soon as they know there's something wrong they should act to correct it, surgically if neccesary. I don't think surgeons like to wait very long when they know there's a problem that they can fix. The sooner the better really.

I had to wait as long as I did once they decided what to do surgically because Dr. Mee's schedule is pretty booked all the time and there just wasn't any way to get scheduled before I did. I waited about 2 months from the time a diagnosis was made and mode of treatment was decided on and the actual surgery.

 

[bethanne]

waiting for test results....

I requested an echo sooner than Feb.26. on Wednesday and was able to get in the next day, yesterday, so now is the waiting time from the cardio. My six month appt is for March 3rd. I am assuming my dr. will call me before then. I will give him a few days, then I will call. My husband did go today, for the first time, and I think it was an eye opener for him. The technician was very thorough and asked me alot of questions regarding my symptoms. Once of which was "Have you had a cold recently?" What is that about? Well it is no use speculating. I am just trying to watch my salt intake, and other diet issues, (thanks to the suggestions mentioned above) and trying to listen to my body when it is saying rest! rest! rest!

My chest x-ray report came back today, but the (pcp) dr.s office would not give me the info from the report because my dr. was off today. What is frustrating is that when I talked to her thursday @ 5:30 (she did not have the results) I explained that I was very concerned over my symptoms and wanted to know if they were related to my heart issues or is something else going on and I did not want to go the weekend without knowing. She said she would have the girls (nurses?) give me acall on Friday with the info. On Friday, today, I called and the nurse said they had the results but that Bonnie said to leave them on her desk and she would call me on Monday. I said that was not our conversation, please have one of the drs there call me with the report. Of course, it didn't happen.

At this point I had thinking I should of gone to the ER in my crisis moment, at least I would have some answers by now!

It will be interesting to see if my primary care physician and my cardio opinions are similiar or different with the separate tests. I didn't purpose that at the time but it could work to my advantage.

I think I will put my energies into changing how I cook, etc. at least those are things I can control.

thanks for listening, beth

 

[Joe Parker]

Your heart, expecially your left ventricle can only expand so much, this is called the Frank-Starling mechanism. However, stretched too far and it won't return to normal size.
In your case the sooner you get your valve replaced the better since you want your heart to remodel back to size. That way you don't end up in congestive heart failure and a new valve for the rest of your life.
The newer theory amongst cardiologists is that when symptoms become subtle irregardless that the fact your heart may not be enlarged enough, to go in and do it. You have a healthier outcome.
In my case I had some very mild swelling and was becoming more fatigued. Although I had a great ejection fraction still and my heart was not enlarged significantly it was time. My cardiologist and the surgeon agreed.
Women of childbearing age planning to have children still should not get a mechanical valve because of the increased risk of clots or excessive bleeding during labor. They recommend a tissue valve in this case.
Go get it done, ASAP

Joe Parker
AVR 01/21/2004
St. Jude Mechanical Valve 27mm
Mt. Diablo Hospital
Concord, California

 

[bethanne]

thanks joe for your post.

I am curious. What were your measurements at time of surgery?

bethanne

 

[Joe Parker]

I had a 64% ejection fraction at the time of surgery.


Joe Parker
AVR 01/21/2004
St. Jude Mechanical Valve 27mm
Mt. Diablo Hospital
Concord, CA