3 month echo: good news and bad news

[realkarl]

After a week of waiting, I finally had my cardiologist appointment to discuss the 3 month echocardiogram results. The really good news is that both valves have only trace leakage, no more than what is expected. The bad news is that the EF has not improved at all since the 3 week echo. It's still the same at 41% (calculated), and the LV size is the same, just slightly above normal, but much improved since before surgery. This despite me having exercised almost every day. Well, that part makes sense, since my cardio says LV function does not really improve much with exercise, and is likely to stay at the same reduced level. Exercise capacity has improved in that period, due to other factors improving, for instance red blood cell count. It hasn't improved too much recently though, and I still have not even caught up to where I was right before surgery, and very far away from where I was a year before surgery. So I am disappointed about that part, and really wish I had been advised to have surgery as soon as I was diagnosed. Maybe my LV function would not have been as reduced now.

I have increased Carvedilol to 25mg x 2, since that could potentially improve LV function somewhat more over time. Another suggestion made by the cardiologist is a pacemaker to bypass a Left Bundle Branch Block problem (cardiac resynchronization pacing). It may increase the heart's efficiency.

Karl.

 

[Danny]

Karl, glad to hear the good news, but sorry for the bad news. What are your feelings about the pacemaker?

 

[ALCapshaw2]

Has your Cardiologist (or Surgeon) ever mentioned anything about CardioMyopathy to you? That is a "stiffening" of the Heart Muscle(s) and is not uncommon following Radiation Therapy.

SLOW and Lengthy recoveries have been mentioned by other Radiation Survivors so there may be hope that your EF will recover S-L-O-W-L-Y. The fact that you are exercising and your body is able to continue to exercise is a GOOD sign. Just Keep it up and TRY to be patient.
(As a fellow Radiation Survivor, I KNOW how that goes!)

'AL C'

p.s. Did you not read all / any of the "Sooner is Better" posts on VR.com? At this point, that is water over the dam. Keep Looking Ahead!

 

[realkarl]

Has your Cardiologist (or Surgeon) ever mentioned anything about CardioMyopathy to you? That is a "stiffening" of the Heart Muscle(s) and is not uncommon following Radiation Therapy.

p.s. Did you not read all / any of the "Sooner is Better" posts on VR.com? At this point, that is water over the dam. Keep Looking Ahead!

No, neither of them have mentioned cardiomyopathy. The surgeon mentioned he saw some, but very limited scarring on my heart muscle, as well as very limited scarring on the chest well, and that the damage to my aortic valve was not very consistent with what he had seen of radiation damage. The artery they took from the chest wall for the bypass was in great shape with no radiation damage. When they did the heart imaging at rest and stress before my surgery, all parts of the heart muscle appeared to be in good shape and receiving enough blood.

I am afraid I never knew about or found VR.com until after I had decided to have surgery.. If my cardiologist had recommended it instead of wait-and-see, I probably would have. In my case, the medication worked "too well". If it hadn't, surgery would have come sooner.. But as you say "Keep looking ahead!".

 

[realkarl]

Karl, glad to hear the good news, but sorry for the bad news. What are your feelings about the pacemaker?

Danny, it's an "assistive" pacemaker, so if it suddenly stops working, my heart will keep beating just fine. Having it implanted will not de-condition my heart in any way. So I will research it further, and probably ask my cardio if they can determine if I am a good candidate for it, if my aerobic capacity does not improve much further by continuing to exercise for a few months.

 

[Debster]

Hey Karl! If you do need the pacer to get your heart in synch...that puppy has done wonders for my mom. She has had it for 3 years and it has really helped her...best wishes to you!! Deb

 

[MaryC]

Karl,
At around 1 month after my MV Repair I had a stress echo and my EF was at 33%. My cardiologist also mentioned a pacemaker if it didn't improve. He put me on what he called a medication cocktail of various meds including Toprol and others I can't remember. It did improve over time and I was back in the normal range at a year.

Chris

 

[realkarl]

Bi-ventricular pacemaker implant scheduled

Bi-ventricular pacemaker implant scheduled

I have learned quite a few new things since I last wrote.

My cardiologist wanted an accurate measurement of the EF, since the echocardiogram calculated EF is quite inaccurate. If the EF < 35%, a combined ICD/Bi-ventricular pacemaker could be the best choice, since patients with such low EF are at a higher risk of potentially dangerous a-fib. So I have scheduled a radionuclide ventriculogram to get this measured.

I was not too enthusiastic about the ICD option, and I found that the internal defibrillator can in rare cases shock you accidentally during sports and exercise... The combined device is also larger than a BiV only device, and I am skinny enough that my cardio said I would definitely notice the larger size. It also has roughly half the lifetime. Besides, I never had, to the best my knowledge, any a-fib episodes before or after surgery. So I have pretty much decided on a bi-ventricular only device, but will still do the radiogram, to have an accurate baseline that the BiV device can hopefully help improve. My cardio also mentioned that if the EF turns out to be in the 30s, it could well improve so much that ICD is not considered useful. If it does not, he said I could upgrade if deemed necessary.

He also wrote, quote: "You are correct that most people that receive these devices have ejection fractions that are very low. But you have all the features of someone who would likely respond given how your echocardiogram looks with the left bundle branch block, your symptoms and decreased ejection fraction, even if it isn't terribly low. There are reports of people with normal ejection fractions having symptoms and responding." I consider this very promising.

The implant procedure is scheduled for Jan 11th 2010. It's outpatient, takes a couple of hours, and I get to go home the same day. I am looking forward to see if it will improve my aerobic capacity and EF, so I can hopefully get somewhat closer to where I was before the symptoms started, about 1 1/2 years ago.

Karl.

 

[Mileena46]

I am pulling for you Karl! I hope you feel better soon!

Mileena

 

[Danny]

Hope everything goes your way Karl, keep us posted.

 

[realkarl]

Thanks, Mileena and Danny, but I should clarify that I feel very good in my day-to-day activities, and low intensity exercise, but I am not close to catching up to where I was. That was the goal of the surgery, both surgeon and cardiologist agreed on that So that's what my cardiologist, whose expertise is just cardiac electrophysiology, is trying to help me achieve. I would like to able to sprint up the same hills I did before, and climb Mt Rainier if I feel like it

I know the potential help from BiV device is only part of the equation, so I will continue to exercise patiently. My aerobic capacity may have plateaued temporarily, but I have so much to catch up in other areas as well (strength, weight training). I have found that the surgery and post-surgery upper body inactivity has weakened me more than I expected.

 

[COLLEEN S]

Great about your non leaky valves, sorry to hear about your low EF. Hope all the things you are trying help you.