Exactly 3 months since myectomy

[progers]

Well guys, its been exactly 3 months since my myectomy. How do I feel? Well, there are some positives and some negatives:

As some of you know, I had cardiac bleeding the day after surgery and had to be rushed back to the operating room to be opened up again and the bleeding stopped. Unfortunately, this not only sent me into a-fib but also made me feel very tired and ill for several weeks.

However, the a-fib was stopped after electric cardioversion, 5 days after it started. Unfortunately, it happened again 7 weeks later, just when I was starting to feel better. This lasted for 4 days; again, I had to be cardioverted.

Some doctors have told me to expect more a-fib, which is bad news since I never had it before sugery. My surgeon, however, reckons its just post-op a-fib. Who knows? Right now I am in sinus rhythm, but have to take the dreaded Amiodarone, which according to one source I read, "is the most toxic drug in medicine".

What about symptoms? Well, my mean resting pressure gradient is down from around 60 to just over 10. The systolic anterior motion (SAM) has gone from severe to "mild residual". This has clearly benefited my heart, because I no longer get chest pain, even after eating a big meal.

However, I still feel slight discomfort in my breathing, sometimes even at rest. I am almost certain this is related to diastolic dysfunction and the resulting left atrial pressures. I am very frustrated at this, because the breathing issue was THE reason I wanted to do a myectomy.

I can only pray that the myectomy will improve my diastolic function, lower left atrial pressure and ultimately, get rid of the breathing discomfort. I've read this is supposed to happen post-myectomy, but that it may take several months to realize the full benefit, as the heart remodels positively. Three months out though, I can't really notice too much of an improvement in this area. Time will tell.............

Well, that's about it for now. Have any of you myectomy veterans had a similar experience, particularly in relation to the breathing issues? Did your dyspnea eventually improve, or did you notice an immediate benefit or none at all?

Perhaps after 6 or 9 months I will report only great news??

For now, take care.

Paul

[jmurray]

Paul,

congratulations on your important anniversary date! I know you have been having a rough time with the Afib, but my impression is that you are not going to let that get you down. Although I know nothing medically about what you have and are going through I am going to sat that you will get through all of this fine. As with the breathing, again, Dr. John thinks that will only improve with time. You really helped me with questions etc before my surgery and I hope I can be good support for you as you continue to progress!

Best Wishes,

John

[Pam Alexson]

Paul,

Continued good thoughts for even more benefits from your myectomy.

Pam

[Tigger1]

Stay positive Paul, things will keep getting better everyday...


Tigger1

[Dorothy]

Exactly 3 months since myectomy

Paul,

I am very glad that you seem to be staying in sinus rhythm. That IS excellent! I am sorry, however, that you feel you are not making progress since your myectomy. Each of us have a different rate of recovery, as you have read in past posts.

I was told, after being in afib on numerous occasions, that I would be on anti-arrhythmic medication for at least six months. If after that time, they would wean me off to see if the afibs returned. If they didn't return, great! If they did, back on the meds, including Warafin. As side effects were worse, the ablations were performed. Please give yourself and your heart that needed time to heal; keeping in mind that setbacks are normal. I feel we should allow for a year of healing. As you are only three months out of myectomy, and the other problems you have encountered, you may just need that additional time.

The search for knowledge and understanding is wonderful. But are you, perhaps, putting more stress on yourself? This has not been a "picnic" for you, by any means. Are you concentrating on the things you can now do (because of the myectomy) and enjoying the accomplishments (gradient decrease and SAM from severe to mild?) Remember, you didn't just have a myectomy. Everything in your chest was disturbed, too.

Even after 4+ years, I still cannot walk up a flight of stairs or go uphill without having to stop and catch my breath. Some days are worse than others. It is partially due to the medications as well as the HCM itself. After all, the myectomy was for the obstruction. That was a success! Learning to deal with other things that pop up with HCM is an on-going educational program.

No lecture, just take the time to feel better. Enjoy that little one, while she is still little. Don't beat yourself up. Sit back, take some time, relax a bit, look around (you might have missed something special) and know we are all here cheering your recovery on and on and on!!

[Pam Alexson]

Paul,

Dorothy is so on the money regarding recovery. I remember fearing and feeling many of the same experiences that you report. It was kind of a let down in that I did expect even though I knew in theory that it was not possible , that all my symptoms would be gone after my myectomy. I searched and searched and researched til I thought sometimes I was really going to worry myself / stress myself into more problems. I finally accepted that this is my life with HCM and there are parts left with me that I wish could have been instantly cured by the myectomy.

My specialists reminded me, without me asking that my heart is now different albeit more like a non- obstructed patients . They now can try different meds that did not work or made my symptoms worse when I had the obstruction. I now realize that I share some of the very same issues that the non- obstructed people experience. I used to think we , the obstructed had it worse, not always so is it? For some of us it is a lot about the stiffness of our hearts.

As more time passes and your heart heals more and settles in , you will know what your baseline is regarding symptoms that can be worked with. When this is evident , there are the meds that can be tweaked , doseage wise and added to and also subtracted from. I think I know right where you are sort of and it is not real comforting to you. More time has to pass. Symtoms however should not get worse , a little better would be good right?

Recently my son did a college paper on coping with chronic illness and he shared it with me. ( I guess I was his inspiration for the paper) The research came from a womans book about how she dealt with MS. I can't remember it all but 2 stages I remember were ;resolution of grief and reconstruction of ones life. Sometimes I slip back into the shock and awe, grief , especially when I read a story from a newbie here. Sometimes I slip back because it is natural to always want more and I re-grieve, then I think about where I have been and where I can now go. I am still reconstructing my small but very significant life and I think we all do that on an ongoing basis as the days change.

You have come a long way from where you started and you are still changing . You will be able to reconstruct better when you know where a consistant constant is.

I am praying for you that the a-fib does not come back and as each day passes you ARE one more day without right?

Like Dorothy, I hope you do not think I am lecturing , just offering my insight and perspective. You do make me want to learn more , you Rob and Fausto have gotten really deep into the a-fib material , I admire your tenacity.

My Best to you ,

Pam

[fausto.freire]

Paul: as you know I do not have any experience with myectomy... perhaps in the future?. Thus, I just want to wish further improvements and, of course, NO AFIB!! Even tough it has been very nice to share experience and knowledge with you (and others, of course) regarding afib.

I have one question. Can you please give more details about the discomfort you feel in breathing,

Fausto

[progers]

Pam and Dorothy,

I really appreciate your comments and think there is a lot of truth in what you say. Please don't worry, I have not taken any of your comments as as though I'm being lectured to. I still hold out hope that my dyspnea will improve. Afterall, the angina certainly has.

I know that it takes up to a year for hypertrophy to reduce throughout the heart following myectomy. There is also a paper which suggests that even though only a couple of grams are removed from the septum in myectomy, the heart continues to lose muscle mass throughout and not just the septum. In fact, the amount of reduciton is up to 15 times that which is actually removed during myectomy. This apparently all has a benficial effect on diastolic function.

As you say, Pam, there are also new drugs which may help, such as Verapamil. This is very beneficial for improving relaxation and reducing breathlessness. This drug can make symptoms worse in obstructed people. However, I'm no longer obstructed, so maybe I will be able to take it????

Fausto, the breathless I feel comes and goes. Sometimes I don't even feel anything. At other times it feels like there is pressure in my throat and lungs. I don't gasp for air or anything, its just a sensation of not breathing easily. Is anyone else familiar with this sensation??

Take care,

Paul

[Pam Alexson]

You are correct Paul . I was not able to tolerate CCB's before myectomy but now tolerate well the addition with my BB. The breathlessness you describe I can also relate to . Sometimes nothing and then other times a simple drink of water has me gasping for air. It varies a lot.

Pam