How do you measure improvement in CHF?

My husband is young (37) and was hospitalized a month ago with congestive heart failure, they think caused by a virus (because they can't find any other cause).  His EF was an alarming 10% at its worst in the hospital, measured by echo.  He had a heart cath a week after he got out of the hospital and they estimated his EF at 15-20%.  

He is feeling VERY good now that he has been home and on medication (off work) for a month:  he can walk (and do some jogging) for 5k, walk up flights of stairs and carry our 5 year old son without getting winded, etc etc.  The problem is, we are terrified of that ominous 10% number and we keep getting dire statistics about what that means.  We have our first appointment with the Heart Failure program at the Univ of MIchigan on Monday, but they are not repeating the echo to see if there has been any improvement.  From what I understand, it is too soon to do a repeat echo?

So my basic question is:  what measurables/indicators can we go on (other than EF) to see if he is improving?  He is very scared that despite all the work he's been doing he is going to end up on the transplant list and that his heart isn't going to improve.  I am scared of that too.  But if they aren't going to give us anything to go on, how is he supposed to go on with life not knowing if he is truly improving?

Any guidance would be greatly appreciated.

Erin

[tickertock]

The best news is his lack of symptoms regardless of his EF numbers, this bears a much better prognosis overall from what I gather, hope he continues to improve. Good luck.

[ed34]

Very good question. Low EF in some people with normal arteries, can feel better than people with normal EF and partial blockages. It is important to remember that medication is helping a lot with symptoms. When I stopped my beta blockers, it amazed me how different I felt. They really keep the heart relaxed. When I came off them, it felt like my heart was going to pop out of my chest for a few days. The heart does take a while to recover, months and it is not an overnight thing. EF is a very good way to establish the condition of the heart because it basically says how efficiently it is working. It does require other important data of course, such as EKG traces and the volumes/thickness's of the heart anatomy. To put it into perspective, I had 3 instances of MI, had a 5% feed to the left side of my heart, yet my EF was 55-60%. EKG looked good, volumes/thickness's normal, yet I felt like cra*. Gentle exercise such as walking or swimming are very good for recovery.
What you don't want to be doing is heavy exercise, such as lifting large objects because you don't want the heart compensating by growing larger. You also don't want the muscle thickening around the damaged area of the heart. So gentle is the key. I would ask for an echo 6 months from the cath treatment. It is also important to ensure blood pressure is kept under control. Personally I think there's a bit of a way to go yet, patience is a virtue. The important thing is that it is improving.

[ed34]

sorry, i meant 6 months from last echo, not cath treatment :(

[mickaye]

Keep us updated on how he is doing.  My husband also feels fine, a little weight loss.  He is scheduled for a cardioversion 5/20 he is still in afib.  They told me nothing will begin to show progess until this is under control.  Sending you good vibes!!

[eperdu]

Thanks - that is helpful!  Would love to hear from the docs on here though.

He had his appointment today - she basically said no more testing (other than the CPX exercise test he will have later this week) until a repeat echo in 6 months.  So Ed, you were right!  :)

She was more optimistic than the other docs that have talked to us.  She even told us about a patient she has with a sustained 8% EF that bikes 100 miles several times a week!  She said that guy would outlive her because he is so healthy.

I'm glad she ordered the CPX test - she said that will give her a good baseline by which to measure his improvement over the next few months.  

[ed34]

I know someone who had EF 13-29 and went up to 59%. So it just goes to show you and it's very difficult to predict how well an individual will recover.

[Cleveland Clinic]

It sounds as if he has a very good and compensated heart function. HE will do best to stay on the medications prescribed thus far and engage in light aerobic activity, and limit isometric exercise to light weights. This condition may have resolved and his ejection fraction may improve so that he may never have symptoms of CHF. On the other hand it may progress over the course of months to years where his ability to exert himself may become limited. IT is difficult to predict who will progress and who will not, but a good measure to follow is his exertional ability, and not to focus too much on the number given by the ejection fraction.

[eperdu]

Thank you for the response!  That is very encouraging.  He has a CPX test (to measure V02 Max) scheduled tomorrow.

It's just very hard to NOT focus on that ominous EF number, when doctors give us grim statistics.  We are trying to focus on just what his heart failure doc has said (which is basically what you said), which is to focus on things other than the EF.  That will take some getting used to, but we are working on it!

One follow up question:  did any of the exercise that I mentioned in the original post seem excessive?  His HR is still fast (resting in the low 90s), and when he exercises he keeps it up around 145-150, sometimes even 160.  Is that ok?

[eperdu]

Oh, just got a call from the nurse about my husband's bloodwork that was drawn on Monday.  Among other things, she said his BNP looked great - it was 22!  From what she said, anything below 100 is normal and indicates that no heart failure is present.

Is that true?  What does this mean?  I'm thinking it must mean something good...

[ed34]

A BNP test is a valuable guide to Doctors in determining the likelihood of heart failure. Basically when the left side of the heart squeezes to pump blood around the body, it will excrete chemicals into the blood if it's struggling to do this job. It tells the body to create more blood. So the left side of the heart plays a big role in how much blood we hold in our body. Now, the left side of the heart can also have problems when moving back into its relaxed state, after squeezing. If there are problems here, then more chemicals are released. So raised BNP can mean problems with the heart when contracting or relaxing. A level of 22 if pretty damn good. A BNP is a better indicator or heart failure than an echo. As for the heart rate, I would not go too mad.
Use this formula......MHR = 206.3 - (0.711 × Age)
so 206.3 - (.711 x 37) = 180 max
If he is on a beta blocker, reduce this by 30, so 150 max

[eperdu]

Thanks Ed!  Now here's another one:

My husband had a VO2 Max test done this morning and his "score" was 28.5.  The technician seemed very impressed with this, as he was in the hospital with an EF of 10% 4 weeks ago.  But as he is looking up charts on VO2 Max results online he is finding that this score is actually in the poor range (he is a 37 year old)...so can someone provide some insight on what this really means?  We are very confused...

[ed34]

for someone who had an EF of 10% such a short time ago, 28 is much better than you would expect. Perhaps you are being a little bit impatient. His heart is not going to heal that quick, it will take months. Everything will start to improve and don't compare his results to 'normal' because his heart has suffered. Just give it time and don't get scared over it. The technician was obviously expecting a lower number, so take this as a very good sign, not a bad one :)

Did he find the VO2 test hard work? I've heard even athletes have a tough time pushing their body to their VO2 max.

[eperdu]

I wasn't in the room when he had the VO2Max test, but from his description it was hard work.  He said his legs turned to jello and he had to stop

I know it's a good sign...my husband just has a way of finding something negative in every tidbit of good news ;)