Not quite what I was hoping for. . .

[epstns]

I've been sort of in "read-only" mode here for a couple of weeks, partly because we were out of town for a week, and partly because I was waiting for the evaluation of my annual echo. Well, I met with my cardio yesterday afternoon, and I'm not really happy with the situation.

Nothing immediately threatening, but my stenosis has progressed from "moderate" to "moderate to severe." I knew something was up when the echo tech was a little bit less talkative than usual, but pushed it to the back of my mind. I also have noted that this winter I seem to have less "reserve energy" for heavy work. I still jog my usual routine, but I have less energy left afterwards. I guess I've been warned by my body, and the doc confirmed it. He acknowledged the progression, but he also reminded me that this is just one of numerous echo's and may be a flawed reading. We discussed the fact that this progression is just what we expected, over-all. He clearly stated, though, that he does not feel that my valve is yet ripe for replacement. His current guesstimate is "probably in the 2 to 4 year time frame." Although I'm usually a hopeless optimist, this time I am trying to prepare myself for the shorter end of the range, realizing that as AS progresses, the rate of progression increases.

No new restrictions, as I'm still largely asymptomatic. My only symptom is the reduced energy, which is not one of the "cardinal" symptoms that would indicate surgery. I'm just a bit bummed out that it feels like my world is shrinking (I have less energy to do the things I like), but it isn't yet near the time to get it fixed.

Sorry to vent. . . let's get on with life!

 

[Ross]

Ah Steve, it's just life reminding you that sooner or later it has to be dealt with. I'd say you've done well thus far avoiding surgery. Now it sounds like the time is really drawing near. You know you have the best team here pulling for ya.

 

[epstns]

Thanks, Ross. I know I can always count on you to help keep things in perspective. I guess what is getting me down is the feeling that my quality of life is beginning to decline, but it has not yet reached the point where they feel it is time to replace the valve. I am probably subconsciously afraid of how bad things may need to get before they will move on to surgery. Of course right now things aren't anywhere near that point -- I'm still "fully functional." Things just aren't as much fun as they used to be, and I'm afraid of the downward slide so many others have been forced to experience before the surgeons are called in. It is a fine line between accepting the likely degradation of things, versus demanding "early" intervention. I should probably take things a few months at a time and see if (well, not really "if" as much as "when") I feel I should press for replacement. At least it seems that I have some time to get everything ready at work and home. . .

 

[Ross]

If your left Vent starts enlarging beyond normal limits, move on it. I don't want to see you end up like me or others that never make it back to normal.

 

[LUVMyBirman]

Hi Steve,

Keep that positive attitude going! Good news is....it's not time to move forward.

Also, thinking back to some of my own tests...and depending upon whom is reading them, etc. Accuracy is not 100% on the echo. That being said, if your card thought you were needing intervention I am certain he would have sent you for a cath.

Hang in there my friend.

Looking forward to our spring gathering!

 

[KimC]

Zen and the Art of Dealing with Heart Disease

Zen and the Art of Dealing with Heart Disease

Steve,

I was a runner for 20 years with an avg. heart rate of 42. I ate Wheaties for breakfast and believed I would be an athelete until I drifted away into Neverland at age 99.

I entered that box of insidious "debilitation" about two years ago. I was such a control-freak that I went from doctor to doctor, looking for a benign diagnosis, although I had been told that I have ischemic heart disease. Why me? This was not my dream of life.

At some point, I decided to accept the cards that were dealt to me, and live with the unknowns, (although I'm still pushing for the root cause of the ischemia ... doctors don't completely understand pregnancy-induced heart disease).

I walk instead of run. I delegate some things instead of doing everything perfectly. I'm not in control but I have free will to choose how I want to live my life as it is. I try not to think as my "self" as deteriorating, but rather evolving spiritually.

Reinvent who "you" are, tweak your dream of life, and you'll live more peacefully and productively.

Best,

 

[inlaguna]

Hello Steve,

I had similar feelings. I always thought what would it be like if I had a normal performing valve etc.....

Despite that I did what I could do in terms of exercise. I went from being able to run, to being able to run after three days rest, to walking at a fast pace and so on.......I just adjusted. But I continued to do something which I think is important. Exercise in any form will help you deal with this both mentally and physically. Do it if you can. I have found now after repair I have gone through a reverse process: walking, to running a few days, to running almost daily.

I think you see the underlying theme here in many of these posts. Your ability to adapt plays a key role in the entire process.

Keep a close eye on things and have many discussions with your docs regarding timing. As Ross had mentioned, it is a delicate balance between your own semi-functional version of a valve and the man made alternatives. When your heart starts to enlarge ever so slightly that is a very important sign to move. That is what happened with me.

41 years in waiting and it was finally time.

Dan

 

[Nancy]

Steve-

As others have said, echoes aren't as accurate as anyone would like and are subjective with the skill of the tech and also what the doctor ordered to be part of the echo.

You are still almost asymptomatic, even though you see a diminution in your energy levels.

Sounds like your cardiologist is going to keep a close eye on things, and he knows that there appears to be a downward trend.

Judging from what Joe has had to go through before being recommended for surgery, you have a while to go yet. Maybe it's time to get a little notebook and start to write down what you are feeling so you can keep track of things at home, yourself. That will help your cardiologist as well, when you bring it in to discuss your problem.

 

[JimChicago]

I'd like to echo what the others have said about echo test being at times somewhat subjective in interpretation and accuracy. Also I think all of face to some extent a dimunition in what we're physically capable as we get a year older each year. Also various medications side effects can also cause a dimunition of what we can do - like how the statins can be associated with muscle weakness at times.

For me - I'm in no hurry to get echo tests myself since I feel OK and wouldn't want some idiosyncracy of the test to raise flags - I guess one has tro deal with some uncertainty whether they get the tests or not - I mean conversely if they said you passed the test with flying colors - wouldn't there still be a possibility there was a problem the test didn't detect?

I would think that with listening to the heart and perhaps an ecg that they could tell quite a bit about heart function.

 

[tobagotwo]

This isn't the fun part, Steve.

I remember it, and it can feel depressing at times. So much better to be in the Long Term waiting room or on the other side of the surgery. You have a while to go, yet.

You know that we'll be walking through this with you all the way.

Best wishes,

 

[epstns]

I am reading the trend in all of your responses (and sincere thanks to each of you for taking the time to help). Yes, we are watching all of the LV measurements, and so far although there has been some enlargement it is still within the normal range -- albeit getting toward the upper end thereof. If it continues to grow and for some reason the cardio and the other doc who interprets the echo both miss it, I will be sure to ask regarding its significance.

Nancy, I've been keeping a journal since all of this began with diagnosis about two and a half years ago. That helps me maintain mental "balance" and also helps me to objectively track changes. Memory can become vague, my written notes remain clear years later. I can clearly tell if I used to be able to do something but can no longer do it. Not much of that yet, fortunately.

I can accept the fact that in addition to the valve disease, I am aging -- hopefully gracefully at that. I just have a difficult time accepting the fact that I will sometime get to a place where I must begin to adjust my life to the disease, and that time period during which the adjustments exist may be prolonged. I guess I just hate having to give up my "younger" lifestyle, in spite of the fact that I am "approaching middle age" (at 57).

I don't feel bad -- just tired more often than before. I'll adjust and get used to my current and changing abilities, but it will take a while.

 

[oscarboy]

I was 17 years old when my first replaced valve starting going down hill. I had never quite achieved the level of energy that I had prior to my first MVR (at 12 yrs old), but I was comfortable that I wasn't going to be a long distance runner..as long as I could still play tennis & dance at my high shool dances. My quality of life declined slowly but surely, to the point that walking and talking became strenuous; and I couldn't sleep without propped pillows. I remember being more afraid of the prospect of another surgery than of my compromised health, so I hid many of my early symptoms of decline from my parents. At my last visit to the cardiologist prior to being admitted, the echo somehow didn't indicate the level of concern I knew my body was telling me. I recall like it was yesterday telling him, in response to his suggestion of the next appointment being a week out, that I couldn't go home and seriously didn't think I was going to make it another week. His next question was "What did you have for breakfast" and I was off to the cath. lab. The next day I was in emergency surgery & the only reason I wasn't in that day is because they had to try to get as much fluid out of me as they could given the state of my heart & the risk it posed in a 2nd valve replacement surgery. My surgeon noted in his surgical notes that mine was the most deteriorated post op. valve he had ever seen - one of my leaflettes was completely calcified. I don't know why I'm going into all of this, except to say that I was a smalltown kid without the kind of network available through forums like these & my family trusted the doctors to tell us when the time was right. Had they waited another week, I know I wouldn't be here today. I wish you the best Steve, and I'm thankful you have this resource for support.

Shelly from MN

 

[bvdr]

Hi Steve,

And here I was hoping you would be the exception and not show any deterioration for many more years to come. . I am so sorry things may be starting to change, Steve. Are you on annual or every 6 months echoes?

 

[Mary]

Steve,
You were smart to keep the journal. It's hard for me to accurately compare the amount of difference I feel since the first diagnosis. I've used the number of laps I swim as my gauge, but it would have been better if I had recorded the dates and numbers.

 

[MichyB]

I remember when I first came on here you were among the first to welcome me to the waiting room. The only thing I can say other than it ain't surgery till it's surgery is that you have done such a commendable job in keeping in shape up till now and in maintaining positive that these can only serve to help you in the event that it does come to surgery ... Keep posting.

M

 

[EVELYN]

Hi Steve

Glad you're keeping on top of it. Keep that journal up. Personally, I think being tired and not having the energy you once had IS a symptom.....I wish we had realized it when Tyce had it. Our cardio, too, said....."well, two years." Two years turned into 6 months and he went into afib. From that point on it was 1 month till surgery. Tyce also was NOT able to sleep.....something that went on for two weeks; his color wasn't great either, but that was hindsight. PLEASE keep a record of anything that "feels" different. I will put you in my prayers......and hopefully it will be a LONG time before you have to have surgery.

Evelyn

 

[Marguerite53]

Glad you posted ....

Glad you posted ....

Hi Steve! I am in the waiting room too. I was really feeling the emotional pressure of the waiting (with moderate stenosis) and my last visit with the cardio (mid december) was fraught with emotion. She was concerned that I relax about my condition. (I've got 2 kids graduating in May/June, college and high school). I was afraid the joy might get compromised. She assured me that we would have plenty of time. Not to worry. Then she said something that has become like a mantra for me. "You're way too healthy to be thinking about surgery right now". For some reason, that just sounded great and I have worked hard to take it to heart and relax.

I'm running out the door, so I'll come back to you later. Your attitude is very good. Just hoping this would help you abit. Perhaps it is quite true of you right now, too. You're just still too healthy to think about it.

Hang in there.

Marguerite

 

[RunMartin]

Hi Steve,

I know the feeling of being told that "things are changing". It was over a year ago that I found out the dimensions of my heart were changing. I probably thought (or hoped) that I would never need surgery. I am presently waiting for the results of an MRI scan on my ascending aorta. If it is the same size as indicated by my recent echo then it is time for surgery. It was a bit of a shock to be told that the aorta was also also enlarging but the other dimensions were the same (this was 6 weeks ago) but after reading posts by people on this forum the worry seems to have subsided. I think what this forum gives me is a way to live for today and not to project too far into the future.

It is good to hear you are still running. As far as energy levels are concerned after running, I have had times over the years when I have thought things were getting worse. But because I was regularly competing and training with other people I could also see that they were also slowing down slightly, and they also have days when they feel tired (its called ageing!).

All the best.

Martin

 

[epstns]

Well, Betty, I am still on annual echos, so I guess that means the cardio doesn't expect any drastic change for a year or so. Of course, we always have that final comment "If anything changes for you, call me. . . " just in case.

I'm trying to get used to the fact that things are beginning to change "now" rather than "some time in the future." Once I get used to that, I'll get back to enjoying life as it is, and finding ways to cope with the changes my valve requires. In the meantime, I'm keeping the same running routine, measuring my time, distance, heart rate and weight, and watching for further changes. Hope it stays where it is for another couple of years. Cardio thinks it could.

 

[Jim]

Hey Steve. I seem to be in a similar situation as you. Part of me would like to get it done now and get it out of the way while another part of me would like to just wait for the next echo. My report showed a dramatic decrease in valve size while the LV is still in normal range;however, on the large end. I had a new technichian and there were a couple of readings that were susceptible for error and it makes be question whether the decrease in valve size is accurate. I see the Cardiologist in March and will get the verdict at that time.

I turn 40 this month and am beginning to accept that an upcoming AVR is going to be just another bump in the road of life. I'm encouraged from others on this site at how well they have adapted and in many cases, feel much better after they had surgery. My energy level has decreased over the past 4 years since being diagnosed. I remember I used to be able to ski 1000 vertical feet w/out having to stop. Next week, I go on a ski vacation and I will be happy to be able to ski 200 feet w/out having to catch my breath.

The idea of surgery is quite scary at times and dealing w/ the unknown of what your life will be like after surgery is just as frightning. Hang in there and keep up the posititve attitude.

Jim