What can I expect in the future?

[Aaron_b]

Hey guys. I thought I would get some input on what may be in store for my future. Now would be a good time to get your crystal ball from the shoebox under the couch.

(First, I should mention that my valve problem wasn't caught in a routine exam and I didn't get it taken care of before damage was done to the heart, I had moderate/severe symptoms for several years before I saw a doc about it)

I am 8 weeks out of surgery and I am in limbo as to what I should be expecting. No one mentioned any damage to the heart prior to my valve surgery and I was too ignorant to get my records and research everything myself. The news that all is not well was broken to me by the cardiologist that discharged me after surgery. He indicated that my heart was "weak" and that I "may" see improvement over time. Here is the info he was referring to from my TEE and cardiac catheterization:

LVEDD: 73mm
LVESD: 52mm
LVPWD:13mm

From the cardiac cath: "moderate generalized hypokinesis of the left ventricle"

From the TEE: "The left ventricle is enlarged with evidence of volume overload" "Overall, left ventricular function appeared to be moderately depressed globally" "Estimated ejection fraction 35%"

I pretty much understand what all of that means after reading this site. What I am unclear about is whether I can expect any improvement. I wasn't informed about this stuff before the surgery so I expected to be as good as new afterwards since I am 31 years old and should have recovered quickly. I know that the enlargement has a good chance of some reversal but much of what I read on the subject indicates that it is unlikely to lead to an increase of cardiac output. I wouldn't think an EF of 35% would cause me so many problems but it sure seems to be kicking my butt... unless there is more to it that I don't understand.

My current cardiologist is having me enroll in cardiac rehab and said that I may see improvement over time. She didn't seem enthusiastic about it and I couldn't get any specific answer to what kind of improvements I would see. Also the improvements she hopes for seem to be on a long time scale. 6 months, 1 year, 2 years... who knows?

My problem is that I am still pretty fatigued and have no stamina. On the few occasions that I wake up and feel energetic, I'll "crash" by midday after doing a few simple errands. Today I tried to force myself to stay out in the heat and handle a few chores but after 30 minutes I simply couldn't breathe.

I was fully expecting to be back at work by now but I'm an a/c technician. If I can't take 30 minutes in our early summer heat, how will I handle a typical 10+ hour day?

Any insight here? Have any of you encountered similar circumstances where you can offer likely outcomes to my recovery?

 

[WayneGM]

I went back to an office job at 12 weeks and found it very tough so at 8 weeks I'm not surprised you're still struggling with fatigue. It was over a year before I had my normal stamina back.

 

[Cooker]

As to the future.....who knows?...everyone is different... I had my AVR before any damage or symptoms....I asked before surgery would I feel as good as I do now?...Responce....go garrantees....I might feel better, the same or not as good....but I needed a new valve.

Give it time...As Wayne said....it takes time....8 weeks is way soon to be making judgments on the extent of your recovery....wishing you the best.

 

[Karlynn]

Part of me is wondering if your cardio is painting a bleak picture because she doesn't want you coming back and asking why you aren't an Olympic athlete (an overexageration for descriptive purposes).

I have to believe that you will see improvement. Because your valve is fixed, your heart is no longer under the strain that it was. How much improvement? It really is a wait and see kind of thing. It took me a LONG time to recover. Some people bounce back pretty quickly. I was at the other end of that spectrum.

 

[DebbyA]

I think 8 weeks is too early to expect all-day stamina for hard work. If you have blood pressure medication that affects your heart rate, that may also interfere with your ability to handle heat and humidity.

An observation merely is that many of us performed very well with valve problems before surgery, so even if your heart is not perfect, it may not be as limiting as you fear.

It sounds like the echo and TEE results you quote are PRE-surgery. When is a post-surgery echo scheduled?

Rehab is a great idea. There's another thread currently on that.

 

[ALCapshaw2]

I am 8 weeks out of surgery and I am in limbo as to what I should be expecting. No one mentioned any damage to the heart prior to my valve surgery and I was too ignorant to get my records and research everything myself. The news that all is not well was broken to me by the cardiologist that discharged me after surgery. He indicated that my heart was "weak" and that I "may" see improvement over time. Here is the info he was referring to from my TEE and cardiac catheterization:

LVEDD: 73mm
LVESD: 52mm
LVPWD:13mm

From the cardiac cath: "moderate generalized hypokinesis of the left ventricle"

From the TEE: "The left ventricle is enlarged with evidence of volume overload" "Overall, left ventricular function appeared to be moderately depressed globally" "Estimated ejection fraction 35%"

I pretty much understand what all of that means after reading this site. What I am unclear about is whether I can expect any improvement. I wasn't informed about this stuff before the surgery so I expected to be as good as new afterwards since I am 31 years old and should have recovered quickly. I know that the enlargement has a good chance of some reversal but much of what I read on the subject indicates that it is unlikely to lead to an increase of cardiac output. I wouldn't think an EF of 35% would cause me so many problems but it sure seems to be kicking my butt... unless there is more to it that I don't understand.

My current cardiologist is having me enroll in cardiac rehab and said that I may see improvement over time. She didn't seem enthusiastic about it and I couldn't get any specific answer to what kind of improvements I would see. Also the improvements she hopes for seem to be on a long time scale. 6 months, 1 year, 2 years... who knows?

My problem is that I am still pretty fatigued and have no stamina. On the few occasions that I wake up and feel energetic, I'll "crash" by midday after doing a few simple errands. Today I tried to force myself to stay out in the heat and handle a few chores but after 30 minutes I simply couldn't breathe.

I was fully expecting to be back at work by now but I'm an a/c technician. If I can't take 30 minutes in our early summer heat, how will I handle a typical 10+ hour day?

Any insight here? Have any of you encountered similar circumstances where you can offer likely outcomes to my recovery?

Your understanding, and the Doc's prognostications, seem to be on track for a 'sub-optimal' recovery, which MANY of us faced.

I confess that I would sometimes get a "little Blue" after reading of the miraculous recoveries of the younger, more athletic types. Mine was anything but.

The Good News was that I was making progress, it was just much S L O W E R than I would have liked. After 18 months, I finally reached my Maximum Surgical Benefit and was able to push mow 2 acres (at 45 to 90 minutes per day) and Hand Saw (Bow Saw) Large Tree Limbs.

I concur with the recommendation for Cardiac Rehabilitation. MANY of us found that Very Helpful in our recoveries. I think it is impossible to know or predict how much 'reshaping' your enlarged heart will realize. All you can do is go through the process (rehab and gradual improvement through programmed exercise).

Bottom Line: Exercise when you feel up to it and Rest when your body tells you to. DO NOT PUSH yourself too hard.

Only TIME will tell, and it can be agonizingly SLOW.
It beats the alternative!

Keep the Faith.

'AL Capshaw'

 

[Ross]

Mine was left alone to long and I have irreversible damage. I'm lucky to even be here at this moment much less tomorrow or the next day.

We are all different, which is to say, no one can really tell you what the final outcome will be. Yours looks a little bleak, but I've seen people snap back over time, though I'm not one of them.

 

[perrypiratesdad]

At 8 weeks, I too was still quite tired and had many worries too. As others have said, give it time. I remember still being tired at times for almost a year, but it all came back together for the most part. Medications may be playing a role in some of your tiredness (heck, I just got off the Beta Blockers a few months ago and I had my surgery back in 1997).

Most of all, just stay positive and gradually try to work yourself up to stamina. It doesn't all happen at once. I remember at 8 weeks walking the mall with my wife and being exhausted. The point is though I kept working at it and with time, I was out walking my wife.

You can do it, and we will be there for you for support and encouragement!

 

[dick0236]

DITTO, DITTO, DITTO to what Perrypiratesdad just posted. Right now you have both the physical discomfort/weakness and the emotional(what have I done?) problem at work. Stay POSITIVE.

 

[Lisa in Katy]

I had enlargement for 22 years before my surgery and my heart size has returned to normal. I don't know about hypokinesis, and it's been so long since I saw pre-op echos that I don't remember what they said. Maybe I will request my chart at my annual visit just for grins. It's amazing how much I've learned since my surgery 10 years ago, both from this group and the miracle of the internet. Unfortunately, before my surgery, I was left pretty much at the mercy of the doctors. Fortunately, I had good ones.

Just be patient and keep a positive attitude. Working in the New Orleans heat will probably be more than you can handle for a while. Do you have any other options, at least for this summer?

 

[Aaron_b]

To answer the $64,000 question, those are pre-surgery test results. I had another echo done recently (6 weeks post surgery) and I'll get a copy of that as soon as it's ready. The cardio went over the results with me but when I asked about getting a copy, they weren't transcribed yet.

From what I was told, there wasn't any real change between pre and post surgery echo results.

I'm sure it may seem a bit foolish to be expecting so much at 8 weeks but I had high hopes for my recovery. I went in for surgery on a Monday, by Wednesday I was walking a considerable amount and on Thurs/Fri I was in shorts/t-shirt/tennis shoes and I was zipping around the cardiac floor so quickly that the only thing that would indicate that I was a patient was the pillow I was carrying.

A steady improvement continued until about the 4th week after surgery when one day a setback hit me like a hammer. I woke up feeling unusually fatigued, I had frequent pvc's at about every 3rd or 4th beat. (I had them before the surgery but not at all afterwards). When I weighed myself that morning I had gained 4 lbs since the day before and I gained another 4 lbs over the next 24 hours. I also began having occasional difficulty breathing and my old friend Mr. Dizziness came to visit me again.

That's basically where I stand now. The weight thing has been controlled with lasix, but the rest is pretty much the same.

As far as wanting to get back to work, it's as much a psychological thing as it is a financial necessity. I really need to prove to myself that I can go back to work. Until I do, it's hard to make long term plans for the future when I don't even know if I'll be broke by the end of the year and fighting off creditors with a stick.

 

[ALCapshaw2]

Your concern over being able to return to a physically demanding job is certainly understandable.

It sounds like your Doc's are doing everything they can to help your recovery (i.e. lasix to drain off excess fluid).

Nancy and her husband Joe (now deceased from NON-cardiac issues), kept a daily Log of his Weight (w/o clothes, after voiding, every morning). He was also on an almost NO Salt Diet (home made bread, etc).

Hopefully you can get by with daily monitoring and a Low Salt Diet. You may also want to have your blood checked for electrolytes and signs of anemia.

Beyond that, exercise, diet, pray, and cross your fingers that your energy will come back in time.

After 12 weeks, your sternum should be completely healed and that alone will give you a boost in available energy.

I KNOW it's hard to be patient but that's the way of recovery for many of us. Try to take solace from small gains that at least you are headed in the right direction. Remember, there will be good days and not so good days. As long as you can see improvement on a weekly basis, you are making good progress.

Best Wishes,

'AL Capshaw'

 

[CHDDoug]

Be patient with your recovery. 8 weeks is a little early to be expecting much physically. I'm now almost 4 months post op and still don't have my stamina back. I did feel better once my sternum healed because I was back lifting light weights (one of the loves of my life). I'm 34 yo and was in pretty decent shape going in. I lost about 15 lbs post surgery, but have since put most back on. Even at 4 months post op, I get tired doing physical labor (I actually over-did it this past weekend trying to do decorative concrete for 12 hours...pretty stupid). I bounced back the next day and was fine. My point is...it takes a while to get your stamina back and I'm still not there at 4 months. Be patient and don't overdo it...it's not a good feeling.

Hang in there!

 

[briansmom]

My son was 16 and even though I was told that he would need a heart transplant, I was still really hopeful that he would fully recover because of his age. Well, he didn't, but he is still alive and he does still have his own heart (these alone are true miracles). His EF is about 40-45 now. As it stands now, he will never be able to work full time, especially at a physical job. However, he is young and stupid (as all of us were) and he hasn't embraced the physical rehab and eating right challenge. He still thinks it will magically get better. Rehab CAN help, but yes it is a SLOW process in someone in your condition. So, I say get to it. You can live a long, healthy life with a low EF, but you won't be super athletic. At 8 weeks post surgery I would think that you will hopefully see an increase in your EF of 5-10% over the next few months and rehab can also increase it another good 5%. That would put you at darn near normal, so don't give up - just be patient.

 

[Ana]

As everyone has stated, 8 weeks out is too early to determine whether or not your heart muscle will bounce back after being blown out of shape for years.

My husband's surgeon stated that it takes about three months post surgery for the heart muscle to just recover from the surgery itself. His cardiologist stated that it would take four to six months for my husband to recover to the point he was at (stamina-wise) just prior to surgery. We were flabbergasted because he was in really crappy shape at that time - we just assumed because we never thought to ask, that the heart would heal in sync with his sternum. But no, the cracking and popping of his rib cage has stopped and yet he is still limited to about 50 minutes of mild aerobic exercise a day. And his pre-surgery EF was ~40%. His next echo is scheduled for the Ninth and hopefully we will see an increase.

I would be assume you are still on meds - either a beta blocker or ACE inhibitor? That will lower your blood pressure and in turn affect your stamina. Carl was on warfarin and amiodarone for three months post-surgery and it really affected his energy levels. He could not believe the difference after going off those two meds. He IS in cardiac rehab and believes it made a huge difference in his recovery.

He also had an interesting problem with edema and weight gain. He gained twenty pounds of fluid in the two weeks after surgery even while on 80 mg of Lasix a day. The RNs were stumped, but his kidneys were fine. The surgeon solved the problem when he was doing his daily visit and said a lack of protein could be the problem. I calculated his average daily protein intake (he lost his appetite after the OHS) and found it hovering around 35mg which is half of what a healthy male adult should have on a daily basis. I picked up some egg-white protein mix and brewer's yeast and boosted his intake to 90-100mg a day and it was like turning on a faucet. He lost his water weight in a week on 40mg of Lasix a day.

Sooooo....lots of possibilities and hope for your situation. And, even if your EF doesn't improve much, your quality of life doesn't have to suffer. Carl's cardiologist told us of a patient he had (lumberjack) with an EF of 20% and still able to work with proper med management. So please don't despair.

Take care.

 

[ctyguy]

Hang in there.....Im about 3 1/2 months now and am still not 100% either. I was all gung-ho at 8 weeks because I could run more than a few minutes (slow pace) and not get pain in my chest. That is what took me to the cardiologist to begin with. I'd run 2 or 3 minutes at 5 mph and I would get chest pain and SOB. Now Im running several times a week and lifting weights again but I can tell that all is still not quite right. I've still got digestive issues, my INR is all over the place, and Im still taking Tylenol PMs to help me get to sleep at night. My stomach is gurgling up a storm as I type this and a trip to the bathroom, again, is probably within the hour.

Everyone heals differently, other than my Aortic valve I was in very good shape going into surgery. In my post-op notes the surgeon basically listed everything else out as normal. The fact that I can do most things physically probably has something to do with that. But under the covers things are still a work in progress. I know its hard to be patient, especially when your accustomed to doing certain things but the fact that you had damage to your heart probably means its simply going to take longer to heal.

 

[aussigal]

I remember taking much longer to feel somewhat normal again compared to those who had surgery at the same time as me. I put it all down to the serious complications I had. It took me a good 6 months before I could see that I was recovering. 2 years on and I feel totally recovered. Most of us do get back to normal again. That often-said phrase "give it time" is really the answer...

 

[cday]

4 to 6 months for my M-I-L

4 to 6 months for my M-I-L

I just asked my 75 yo mother-in-law about her recovery -- it was pretty rough -- she remembers that literally one day she woke up and felt much better. It was 4 to 6 months after her Mitral valve repair w/ full stero.

A friend let us know that even after he returned to work (he's a CPA) he could only last until about 2:00 for a while. Would your employer allow you to come in a couple of hours 3 days a week -- when you are up to that?

 

[Philip B]

Bouncing Back

Bouncing Back

As others have mentioned, recovery and rehab are really an individual thing. I don't consider myself young or athletic, but I managed to bounce back pretty fast. Unfortuantely,the recovery process is so individual that no accurate "poster child" for what everyone should expect with regards to recovery is available. There are too many individual factors involved.

The best advice has already been given...be patient and keep working at it. The importance of continuing to work at it cannot, in my opinion, be overstated. If you overdo, your body will get your attention quickly.

-Philip

 

[Aaron_b]

Everyone, I appreciate all the replies. Ana, the thing about the lumberjack is the kind of stuff I want to hear.

Cday, I doubt I would be up to even partial work days at the moment but even if I were, there is a problem. I was laid off the day after I informed human resources about my need for surgery and the fact that I would be out for an extended period. To go back to work, I would have to interview for another job and I would probably have to pass a physical. (those seem to be standard these days) In any case, I am in the unfortunate position of needing to be at 100% in order to get back to work.

I should be starting cardiac rehab soon and I have set a personal deadline of 6 weeks before I have to make some hard decisions such as changing career paths or applying for disability. (both are easier said than done) I don't want to wait for checks to start bouncing before I do something proactive.