Soooooo tired

[Phil]

Hi All,

I just want to vent a little about being so tired. I feel exhausted so often - to the point where it's hard keeping my head upright. I'm managing to continue working, but it's such an effort. Last time my valve was replaced really quickly as I blacked out at gym (flew off the back of the treadmill in front of the Pilates class - pretty uncool). This time I feel as if I'm inching closer to surgery each day and getting worn out in the process. (I'm in the moderate to severe range and was told surgery will be most likely this year). My next echo and surgeon appointment is in April, where I hope the numbers will have worsened to the point where surgery will need to occur real soon. I fear, though, he may say the numbers aren't bad enough and I'll have to continue on for many more months like this. I don't often let on to friends how I'm really feeling, as I think it sounds a bit pathetic to say I feel really tired, but it feels like such hard work at the moment. Do others understand this and how did you get through it?

Cheers.


Phil.

 

[Julian]

Hi All,

I just want to vent a little about being so tired. I feel exhausted so often - to the point where it's hard keeping my head upright. I'm managing to continue working, but it's such an effort. Last time my valve was replaced really quickly as I blacked out at gym (flew off the back of the treadmill in front of the Pilates class - pretty uncool). This time I feel as if I'm inching closer to surgery each day and getting worn out in the process. (I'm in the moderate to severe range and was told surgery will be most likely this year). My next echo and surgeon appointment is in April, where I hope the numbers will have worsened to the point where surgery will need to occur real soon. I fear, though, he may say the numbers aren't bad enough and I'll have to continue on for many more months like this. I don't often let on to friends how I'm really feeling, as I think it sounds a bit pathetic to say I feel really tired, but it feels like such hard work at the moment. Do others understand this and how did you get through it?

Cheers.


Phil.

Ah Phil, I'm sorry you are feeling this. I to felt like this for years and it got worse and worse each year that went by. It got to a point to where I knew something had to be seriously wrong because I got tired of trudging through everyday. Once it was determined by doctors that I couldn't go on much longer we set a date for surgery. It couldn't come fast enough the was a tough 3 weeks of waiting. I'm convinced now that I only had 1-3 months to live. Part was wanting it to be over already the other part was wishing the date never needed to come because after all it is open heart surgery and it's life changed, some for the better and some for the worse.

I'm also the type that doesn't like to complain and for 2 years after it was determined I needed surgery I ignored the symptoms until I couldn't breath. The doctor was right, I would tell him when I was ready, boy was I ready. If your feeling this bad Phil you have to do what it takes to let the doctors know you need this surgery sooner than later. If your symptoms are because of your heart its truly playing Russian roulette everyday that goes by.

Just know that I've been where your at and I understand exactly what your going through. The only thing that helped me through was Jesus Christ, my family and friends. If you have kids and wife they are great motivation to live on and get better, I don't have a wife and kids but take any motivation you can get.

 

[Julian]

On a side note I need to proofread my post before posting LOL.

 

[Ovie]

I hear ya. I go in for surgery on the 23rd, it's mind blowing that in the last 2 months things have changed so much. I was feeling some symptoms last couple months of last year, but nothing crazy, and now these last 2 weeks have been a real struggle, alot of fatigue, out of breath, just feeling down over all. I too understand how you feel about telling friends or even family. Mine tend to think I'm just wining, that's why I can always count on this site, because people do care.

Hope your ok from the treadmill spill, those things are deadly when your conscious, passed out is bad news.

Hope everything gets settled sooner than later for you. Good luck.

 

[epstns]

Phil,
The steadily worsening fatigue was the only real "symptom" I had of my worsening stenosis. Although my echo measurements were "fair" at severe stenosis, I could still push through the day and even go to the gym after a 10+ hour work day. But after that - crash! I was virtually useless after work and exercise. It got to the point that I could feel my life closing in on me, and that's when I told my cardio that we needed to talk about scheduling surgery.

It sounds like you're at that point. Will NHS consider scheduling surgery when you feel you need it, or do they require their statistics to be met?

 

[sarahsunshine]

Not sure if you want to do this, but the big thing that convinced Skyler’s surgeon that NOW was the time, was that they put him on a modified stress test (stationary bike and made him breathe through a thing to measure oxygen and C02. The upshot was that he couldn’t even get up to the heart rate that they had targeted to start the test!

The thing was, his echos came back fine, but as soon as you made him do any exercise (walk down the hall, climb stairs), there wasn’t enough blood flow.

I would seriously talk to the doctor and say exactly what you are feeling, and that considering the steep slide in quality of life, you are ready for surgery now.

And don’t be like my husband and just “nod and smile”, even when the doctor isn’t making sense with your symptoms. Advocate for yourself and ask all those questions that need to be asked! If he doesn't know the answer, ask him who does and when he'll find out for you!

 

[Mentu]

Hi, Phil. You are definitely not alone in the way you are feeling. Before my cardio recognized that my valve had changed for the worse, I was already becoming a slug. My feet felt heavy. At the end of every day, I fell into bed but it didn't seem to help all that much no matter how many hours of sleep I got. This only got worse during the weeks before surgery. I, too, would urge you to speak with your cardiologist and emphasize how this is effecting your life. Possibly, you could request an earlier date than April for your next review. Take care.

Larry

 

[Mileena46]

I was in total denial about my symptoms. I was still telling everyone I had none, and in the mornings getting up to go to work...sitting on the side of the bed thinking I just couldn't do it that day. I was getting out of breath going up stairs or walking any distance....but was fine other wise. I had people call me on the phone and comment about how I sounded out of breath and I would lie and tell them I was cleaning or lifting something heavy. Why? I don't know. I wanted to hide it as long as possible. Looking back on it now, I can see that made no sense. I progressed to the point that I couldn't take even 2 or 3 steps without fighting to breath and even then when I finally called my Cardio...I told his nurse that I was fine sitting down. I kept telling myself it was just part of getting older and excess weight, not getting enough sleep.....but the truth is...once you cannot walk and breathe at the same time something is really wrong. Sadly, these symptoms were the very ones that my doctor had told me to watch for, and if I had any I needed to see him. I was also in a constant state of dizziness...my world was never right. Woke up several times in the middle of the night in total rotational vertigo that can be quite frightening. Even then I made an appointment with an ENT instead of my cardio because I just didnt want to face the truth. It finally came to a head for me when I got so out of breath I could no longer function....it was so worrisome I was neglecting anything that caused me to get up because I couldn't breath when I did. My heart was also jumping in my chest so bad it was a constant worry. Finally went in and found out I was in A-Fib with a sitting HR that would jump to 290 BPM at times. I didn't even worry about the surgery (which was set for just a few days and I didn't leave the hospital), I was so tired all I wanted to do was rest. I was just so relieved that I could rest!!

Don't ignore your symptoms. Talk to your doctor. I was lucky. I had been in A-Fib for so long I had developed a blood clot in my heart. I realize now how dangerous it was......it won't hurt to call and have it checked out....better to be safe than sorry.

Mileena

 

[Sarah_Louise]

Phil, this also sounds like me, i'm waiting to have funding aproved then i will be admitted to have my pulmonary valve done, i'm sooo tired, have no energy, and constantly breathless-even when i'm doing simple tasks, which is very annoying!!
Hope your okay, and you get what you want in April,
Thinking of you,
Sarah xxxx

 

[Phil]

Hi All,

Thanks very much for the time you have taken to respond. It's been so nice being heard by people who 'get it'. I most probably will bring my check up appointment forward. I'm seeing my local GP next week where I'll get him to listen to my chest and seek his advice about having the echo done earlier. Again, thanks very much for your support.

All the best.


Phil.

 

[catwoman]

Phil:

Speed up your appointment, get that surgery scheduled PDQ.
Like you, my father-in-law passed out before his first MVR; he had been adapting to his declining energy level w/out going to a Dr. He hated Drs. This was within the year before I met & married my husband (we married about 3 months after our first date). He was pretty good about going for annual rechecks at first, then stopped (it was about a 130-mile round trip).
By the time his porcine MV had failed, so had his AV and he needed his aorta rebuilt and 4 bypasses. He was carrying at least 20 pounds of extra fluid because he was in congestive heart failure. Was in the hospital at least 1 week pre-op to get the fluid off.
So ... do not wait until April. It sounds as though you may need surgery before then.
Good luck!

 

[bradvo]

I can tell ya feeling fatigue and tired all the time was my motivation on getting thru the surgery process. I felt this way for what seemed forever before someone finally told me what was wrong. This was in a way a very special day with a scary twist to it . I knew I was going to feel a whole lot better when it was over and I do.
Just keep that in mind Phil, your gonna get fixed then watch out .

My wife has told me numerous times I should have had the surgery years ago...LOL

 

[DavesMom]

Hi Phil,

Like Steve, a worsening fatigue was the only reason I went to a doctor. It got so bad that I would go into one of my fellow teacher's room after school and just pace while we yakked. It was the only thing that made me feel better.

When I finally DID see the doc (OK, I stupidly hadn't seen him for years), he sent me immediately to a cardio and my valve was so bad that it was replaced three months later. They also repaired an aneurysm.

I hope your doctor really listens to the symptoms you're having and place more importance on them than on your numbers.

By the way, Steve - I find your comment about crashing after work/exercise interesting. I do walk/exercise every day but find that immediately after I'm done I want to fall asleep. Seriously. I exercise and then if I sit down I'm out in less than five minutes. Always wondered why that happens - I exercise at a gentle pace. My echo is always fine but I do have another aneurysm. I wonder if it's somehow related to the aneurysm I now have. Does anyone else go through this?

Best wishes, Phil, and hope everyone's well.

Cheers!