a question about fatigue

[Jim_Bowker]

I've been diagnosed with moderate to severe (or severe to quite severe) AI for ten years. For much of this time, I've fatigued easily and often needed more sleep than somone my age should (I'm currently 38). I've tended to need 10 hours of sleep a night, and I sometimes need naps; I fatigue rapidly with much exertion.

More recently, I've experienced slight shortness of breath with almost any exercise, and some very mild chest pains. My cardiologists (I'm in the midst of receiving a second opinion) are divided as to whether my most recent symptoms are at all cardiac-related, but both doctors seem to put off my fatigue (or much of my fatigue) to other causes (as yet unidentified--but not for lack of my trying).

With that all said, I'm wondering if others diagnosed with AI here have suffered from fatigue. Not knowing if my fatigue is so easily attributable to my AI leaves me wondering if valve-replacement surgery (which has not been recommended yet--although I have a new echo in a coupla weeks that may reveal some change in my heart functioning) might have any positive impact on what--for me--has been the most difficult thing to deal with with respect to my AI--my fatigue (which I STILL believe is likely to be largely related to my AI).

I'm wondering what anyone here can share concerning their experiences ...

 

[KristyW]

Welcome Jim

Welcome Jim

Hi Jim,

Welcome to our forum. I find it interesting that your cardiologists have dismissed your fatigue. The first question my cardio asks me each time I see him is, "Do you tire easily?"

I just had Aortic Valve Replacement last week due to moderate Aortic Stenosis and Moderately Severe Aortic Insufficiency. My Cardio agonized for a year about whether or not to have the surgery done because I was basically asymptomatic. If I'd have given him a list of symtoms like you just listed, he'd have had me in for AVR in a heartbeat.

Get that second opinion, and maybe a 3rd! Remember, the more symptoms you have, the greater the chance that you're doing damage to the heart muscle.

Kristy

 

[martha]

Hi Jim,

I agree with kristy, my AVR was done on 12-15-00. All the time my cardio would ask me how my energy level was. Was I sleeping more.

Get more opinions and don't fool around. As been proven in this group the longer you wait the more damage can happen.

My cardio wanted to wait. I asked him why he was waiting. His comment was that I was not showing enough symptoms. Well after reading what this group had to say I pushed my doc to push this along. Good thing that surgeon told my mother that the valve was not good. I've since changed cardios. This one took care of me in the hospital. He is wonderful, and on the ticket. Good luck... martha

 

[Nancy]

Hi Jim

Hi Jim

Hi Jim-

My husband is the patient here. He's going in for this third heart surgery on July 18.

Maybe you're like him. He hates to complain. He was a super athlete earlier in his life and I think a lot of the training and conditioning is to "suck it up" and play through the pain. Consequently he has a hard time getting into how he really feels and into talking about symptoms.

I watch him like a hawk and make sure that I point out to him just how bad things have gotten. And then I harp on him to make sure he tells the doctors what's really going on. He pooh-poohs everything that I say to him and doesn't really do a good job of complaining at the doctors office. So---I go with him.

As we all know , we women have no problem yakking and complaining.

I tell it like it is and make sure that it's understood, because so far his doctors are all men, and I love them dearly, but they might process things the same way Joe does. .

So in my little humorous way I'm trying to tell you that you're not complaining enough. If that's hard for you, bring someone who really knows how to complain.

If it isn't acted upon, then find another doctor.

You've got to get the help that you need. Better health is available. Sounds like you've gone on way too long.

Best wishes,

Nancy

 

[Bill Hall]

Jim - Welcome to this web site. It sounds like your symptoms are changing rapidly. One of my cardiologists told me that my valve would degrade quickly once the symptoms appeared. I would probably check yours out soon. My own situation turned out completely different than what I was told. I never really had symptoms, so they waited a long, long time. Hope this helps.

 

[Susan in FL]

Gosh, Jim, I would be concerned that the doctor wasn't concerned about fatigue. I had AVR in February of 1999 (hard to believe that long ago) and was asymptomatic for the most part. However, I was more concerned about surgery "later" --ie putting my life on hold for up to 5-6 years waiting for a series of symptoms! So doctor did a heart cath and found that I was right--it was already time AND I had no blockages either Waiting could have seriously affected the outcome. As it was, everything went great. I am the proud owner of a shiny St. Judes and take the coumadin. Good luck, but fatigue is an issue! Susan in FL

 

[hensylee]

Write down a list to take with you, with EVERY SYMPTOM on it. If you don't get answers to every question or get put off til another day, find a new dr. My friend Dr Rich over in about.com tells it like it is, as the others above have done. He always tells us to get another opinion and then another, if needed.

 

[ALCapshaw]

Hi Jim,

You might want to ask if a TEE (TransEsophagael Echogram) would be a good idea. That test puts an ultrasonic transducer down your esophagus right next to your heart and gives a much better picture than an external echo.

When symptoms appear, you definitely want to get checked out because the risk of sudden death in the next two years is greatly increased based on my reading.

'AL'

 

[Lisa in Katy]

For 22 years, including the month I was in the hospital with Rheumatic Fever, my Cardiologists always asked how I was feeling. My reply was always "Fine". I was getting more tired over time, but I was also getting older, and had two young children, and worked full-time, etc., etc. Finally, the Ultrasound Tech and I were talking about the "right time" for surgery. He said two key indicators for fatigue are sex and steps. If you are getting more tired in these activities than in the past, it could indicate that the time has come. In other words, look at your fatigue during normal activities (assuming sex is a normal part of your life!) and not during more strenuous activities.

I agree with Nancy that doctors don't always hear the more subtle complaints. I was once told that I was the healthiest looking and acting sick person around, because even though I am a woman, I tend to hide my discomfort. Sometimes you just have to suck it up, and tell your doctor in straightforward terms exactly how you are feeling!

 

[FredH]

Get New Doc

Get New Doc

Hi Jim,
I have two cardiologists and both say how you feel is as important as the numbers. I had the same problem with fatigue but everything else looked ok. Then I started having the same exact symptoms you have described. That is shortness of breath and slight chest discomfort. I went in for a check up and found that all at once things had gotten much worse. I would take these symptoms very seriously and get that echo as soon as possible. If you wait too long heart damage could occur. As others have said you may need a third opinion. Good luck and Keep us informed.

 

[Mara]

Jim-
I have had AI/AS since birth. As almost everyone on here knows my surgery is set for 7-12! My only major complaint is fatigue. I am 33, sleep about 10 hours a night and by 2pm I am ready for a nap. Some days I feel as if I could sleep all day.
In March, my doc finally saw what he was looking for on the echo, and noted that the murmur had changed in the last 18 months. My increased fatigue was a very relevant factor.
I would be concerned that your doc is not taking you seriously, or that you are not impressing upon him just how tired you feel.
Sounds to me like a second, third and fourth opinion might serve you well.

If you are ready for the surgery, just think about how un-tired you'll be when it is all over. I am looking forward to that part!
Big trip to Disney World planned for next Spring, so I gotta be ready for all the rides!
-Mara

 

[fdegranville]

Dear Jim,

I also have 3+ AI and mitral stenosis. I was diagnosed 20 years ago and have not had valve replacement. Being tired ALL the time goes with the territory. I was told I just had to live with it. It was extremely difficult when my two boys were young.

You can have severe AI, without any reduction in systolic function (up until a certain point), but once they see progressive enlargement of the LV and/or wall motion abnormalities, that is when they recommend surgery. Maybe you need more investigational studies, like a TEE or cath. I would think with severe AI and syptoms they would automatically send you for those tests.

I wish I had more helpful advice, good luck,
Francesca

 

[Zazzy]

You need another opinion..... fatigue plays an important role in measuring your heart health. I suffer from fatigue, but I have leukemia in addition to the heart probs. Mix the two together and WOW.... get off the couch???? No way!!!!

Really, I'm better now... had a blood transfusion a few weeks ago and it did wonders for the leukemia and the fatigue.

Just remember... you are a heart patient... allow yourself to slow down a little!

Take care,
Zazzy

 

[PhilCraun]

Numbers vs Symptoms

Numbers vs Symptoms

I had a couple echos that showed no progression of my bicuspid aortic stenosis, but when I mentioned to my cardio that I was getting more out of breath and the chest discomfort was more often and pronounced that it had been, he immediately scheduled me for a cath. My point is, the way you feel IS as important as what the tests show.
Best of luck and may God be with you.

 

[Jim_Bowker]

WOW! I don't have Internet access at home (despite being an educational technologist--could be my need to be offline in my downtime), but after not having checked this forum for 5 days, I was amazed to find such a tremendous (and tremendously helpful) set of responses--I didn't even finish reading them yet, in the short time I have today to be online today, but I will ...

Thanks for all of the info; I've been feeling somewhat powerless in the face of the doctors I've seen who want to write off my fatigue as depression. Hearing from all of you reinforces the great need to listen to my body and not take chances.

I have an echo planned for next week, but I will go armed with all of what folks have shared here.

Thank you ...

 

[NancyMVP]

a question about fatigue

I'm going through a similiar situation only my problem is my mitral valve.
Like today I went shopping at a clothing store. I was there approximately 15 minutes I was looking though a rack of shorts looking for my size. I felt like I was going to break out in a sweat and I had this urge to leave.
I also mentioned symptoms to my doctor back in November 2000. I my left shoulder/back was hurting and he insisted it wasn't heart related. At the same time I was in the hospital with a TIA they did a TTE test which shows the back of the heart. Its a bit uncomfortable. I was sent home with baby aspirin. I ended up going back to the hospital because they didn't answer my questions and I had a dalium stress test. Its amazing how they don't explain unless you ask. When I saw the words severe regurgitation on the reports and looked it up on the internet I almost cracked up... I'm learning much more from this forum then I did from my doctor.
Good luck, Nancy

 

[Jean]

Jim

Jim

I don't have much different to say, but just wanted to ditto the concern for really checking this out much more fully than your doc seems willing to do. In August of '99, my family doctor kept telling me that my symptoms were just my asthma acting up. After two changes in inhalers, I said NO, this is either lung cancer or my valve has bit the dust...shortness of breath was one of the signs they told me to watch for way back in the '70's when they first found my bicuspid aortic valve. I demanded he refer me to a cardiologist which he did right away. I saw the cardio on Friday, he gave me diuretics and a pill to make my heart pump stronger. He said I was in congestive heart failure and had me come in Saturday morning...he later told me he thought he would have to put me in the hospital then, but was surprised how much better I way in the am. He then did an echo and it was obvious it was my heart valve.

I had my homograft put in 1-21-00 and since the third day when I started walking a lot, I have continued to marvel at how GOOD I feel. I think I was hampered by this valve for a LONG time and just didn't know it. I sure will be ready when this one starts wearing out if it does.

Good luck and keep in touch an awful lot of good people here are very good at helping out with intelligent information.