If you are in or have been through "burnout phase"

[dughr]

Hi Again,

I have been hanging around this site now for about 2 years and have gone through the gammit from diagnosis, drug therapy and ultimately myectomy. I am now in what the doctors call burnout phase ( a nasty description if I may say so). My heart is now responding well to ACE inhibitors in conjuction with Verapamil in controlling my blood pressure, however, I am back to being out of breath pretty much at any level of activity. Even with this happening I do feel pretty good most of the time now.

The question I now have is of people who have been through the burnout phase of this disease or are considered to be in it. I understand an ejection fraction at 40 or lower is often caused by the heart simply wearing out from years of hard work and rigid muscle due to the growth patterns of the muscle fibers. The question is how did or how are your doctors handling it? What can be expected? What can be done to prolong the life of my heart.

Thanks!
Doug

[Reenie]

Re: If you are in or have been through "burnout phase&q

I don't have any answers but I hope someone else will respond soon. Hope you get some real answers soon.

Reenie

[Boz]

Re: If you are in or have been through "burnout phase&q

Hi Doug –
I have been seen by the specialists at NEMC. I have been told that I have HCM (non-obstructive) and all indications point to the fact that I am in “burnout” / ”endstage”. I was hospitalized in May of this year with CHF, am in persistent AFib, now have an ejection fraction that is 40, (was 71 1998), and have seen the MRI evidence of significant scaring – entire septum and much of the left ventricle.

I am still very much in denial – but would wager that anyone on this list that met me today would be very skeptical of the claims listed above. Actually, my wife and I enjoyed a wonderful evening- dinner in the North End with Heartman and his wife just recently. They were in town to see the Dr’s but were able to celebrate their 10th Wedding Anniversary with us. Ask them!

My three children have been thoroughly screened and have been pronounced clear, my brother and sister are healthy, there is no compelling evidence of any cardiomyopathy or sudden death anywhere in the family tree. I am feeling fine and am functioning quite well, so how can this be?

Believe me, I share the same questions and should be asking them of you??

I currently take Lisinopril (ACE inhibitor), Toprol XL (beta blocker), and Verapamil (calcium channel blocker) and think these meds must have something to do with my feeling well. (Scan my earlier posts here and see that I never was a fan of medication – atenolol specifically). In my case, I am just as concerned about the Congestive Heart Failure as I am about the HCM. I watch the sodium intake and weigh myself every morning. I’m also a candidate for stroke because of the AFib and am taking coumadin. I think I'm managing that stuff well, the depressing thoughts come when I start to ponder the term "endstage"

Though I have been looking for excuses, or a way to avoid it, everywhere, it looks like I will be keeping my appointment this coming Monday for a defibrillator implant.

I guess I’m shedding some of the denial, I just don’t know if that is good or bad?

[Glen Beamish]

Re: If you are in or have been through "burnout phase&q

Unfortunately I cannot supply you any answers, but I know the unknown can be very scary, I guess we all go thru that when we are first diagnosed, but I can see where the term end stage would be concerning.
I wish you both good luck and that you find the answers and treatment you need to give you quality life.
Boz good luck on your defib.

[Lisa Salberg]

Re: If you are in or have been through "burnout phase&q

I would like to suggest you talk to your doctors about the use of bi-ventricular pacing -it is use now with significant success in those with EF's in the area of 40 and lower.

What is Bi-Ventricular Pacing?

Bi-Ventricular pacing of the heart means stimulating the left ventricle in addition to the right ventricle and right atrium, with the help of pacemakers. Bi-Ventricular pacing a.k.a cardiac resynchronization therapy (CRT) is a non-pharmacological therapy for patients with chronic heart failure. It was first described in 1994 and soon became the subject of intense interest and investigation due to its prospect of providing benefit to patients with heart failure non responsive to drug therapy.

Biventricular pacing works like a pacemaker. It synchronizes several actions of the heart to:

Coordinate contractions of the left and right ventricles
Reduce the amount of blood flow that leaks through the mitral valve
Decrease the motion of the septal wall that separates the chambers of the heart (This motion can affect how much blood the left ventricle can pump out in a single beat)
The procedure uses a catheter to place electronic leads into the coronary sinus, the right ventricle and the right atrium. (The coronary sinus is a vein channel that leads from the largest of the cardiac veins. It receives most of the blood from the walls of the heart and empties into the right atrium, which is the upper, right chamber of the heart. The right ventricle is the lower, right chamber of the heart.) After the leads are replaced, the catheter is removed.

This procedure has been used in some with end stage/burnt out HCM with success. It is worth discussing with your doctors.

Happy Thanksgiving
Lisa

[dughr]

Re: If you are in or have been through "burnout phase&q

Thanks for that Lisa. I am meeting with Dr. Link in a week or so and I suspect that Drs. Maron and Udelson set that up because the next step for me would be an implant. I have to say I am NOT wanting to get an ICD. I am still on the fence on this issue and have not decided I will get one should that be the recommendation.

Boz, Thanks for your response too. I am surprised we have never chatted before seeing as you are a south Boston area guy. I work in Charlestown and commute in on the pike so I don't get to the south much at all. I too am the only one in my family with the disease. My one brother is clear, my mom won't get screened and my dad passed away 2 years ago so we won't know about him. I understand your state of denial, I have been in that state pretty much the whole time, still am. I would like to wake up one morning and have this all been a bad dream. Anyway, good luck with the implant Monday. I would like to chat more about that and how you came to the conclusion to get one and who was behind the urging.

Glen, Thanks also for the kind words. I will know more in a couple weeks and will update the decisions I have made. Right now I am just having a hard time day to day with the realization that the myectomy didn't get me the 20 years it was supposed to.

Thanks again,
Doug

[Lisa Salberg]

Re: If you are in or have been through "burnout phase&q

Doug - The device I am refereing to is NOT only an ICD and is different than a dual chambered pacer. This device can actually help you maintain your ejection fraction - it is really amazing and I will tell you - while it is not 'medical liturature' it is real...my dad has benefited from his device greatly - I am not sure what would have happened if we did not use this technolgy 3 yrs ago with him... he is doing very well now - Thank God!

take care!
Lisa

[Pam Alexson]

Re: If you are in or have been through "burnout phase&q

Doug ,

You are in my thoughts and prayers and I wish there was more we all could do for you to make this just a bad dream that could go away. Lisa has some very good advise and it sounds very hopefull. Keep your chin up and know that you are thought of daily.
I do hope you get the implant , I personally would feel better that you had one.


Boz , good luck with your implant . I know it will go well and you will have the protection you need.

Hey we Massachusetts Hcm people are growing, too bad it's not the club we had in mind that we would one day all be connected through .

Thoughts and prayers.

Pam

[Boz]

Re: If you are in or have been through "burnout phase&q

The question I continue to have - guess it helps in the denial department - is just how common is HCM diagnosed without genetic confirmation?

Not referring to the actual test of one's genes, but rather to the more realistic look into one's family tree. If no relatives have succumbed or are currently suffering from the disease isn't this relevant? If each of my 3 children (14,16,19 years) have a 50/50 chance of inheriting this problem and none of them currently show any evidence, isn't this relevant to my own diagnosis?

I know that confirmation, or lack of it, isn't going to change the fact that I have an EF of 40, but when you hear that HCM is first and foremost a genetic disease, why are these facts not weighed heavily in the diagnosis?

I actually want to proceed with the genetic testing of my own blood, but it sounds like it is widely frowned upon for reasons that don't make a lot of sense to me. I am told that a YES (positive) answer in the genetic test is 100% reliable, but a NO answer might not necessarily mean NO, it's more like maybe.

[dughr]

Re: If you are in or have been through "burnout phase&a

Hi Boz,

I am the only one in my family and it is possible to have a spontaneous mutation that will cause it so I guess this is what happened in my case. Again, they removed tissue for the myectomy and could confirm HCM with the pathology. If one never has surgery it does leave a question hanging.

[dughr]

Re: If you are in or have been through "burnout phase&q

Hi Lisa,

What exactly is the device called then? What was your dad's EF and what was it after the device went in?


More questions:

Can you feel the thing and where would it go? Will it make it difficult to sleep stomach side down?

How often do the batteries need changing and is this more cutting?

How long is the hospitaal stay to get one?

Thanks!
Doug

[Boz]

Re: If you are in or have been through "burnout phase&q

Doug-

NEMC actually refers to the device on their web site. Sixth paragraph down, talking about heart failure and transplant.

I did inquire about this with the NEMC in September and they didn't give a reason but indicated it was not for me.

[Boz]

Re: If you are in or have been through "burnout phase&q

Doug -
I am aware of the spontaneous mutation possibility and Dr. Udeslson actually told me that it is not "uncommon".

What I am asking / saying is maybe, just maybe, it is actually very common. It seems that within the small sample of the population that participate in discussions on these boards, there are more than a few "club members" that can not point to a any relative that also had the disease.

[dughr]

Re: If you are in or have been through "burnout phase&a

Boz,

I see what you mean. It would be interesting to have a better statistic for how many are spontaneous vs. hereditary. No one has ever brought up the genetic factor to me in terms of identifying the genetic probability of my disease. I have often wondered could my dad have had it and been asymptomatic. Unfortunately, there is no way to test him now.

So you are still on For Monday? How long did they say you will need to stay over? I would be very interested in chatting with you as soon as you feel up to it afterwards.

Doug

[Boz]

Re: If you are in or have been through "burnout phase&q

So you are still on For Monday? How long did they say you will need to stay over? I would be very interested in chatting with you as soon as you feel up to it afterwards.

You must have been talking to my wife - couldn't really answer your question until I got to the hospital and decided. I've been so up in the air about it, and she is ribbing me big time.

I did keep the appointment for the trans-esophageal echo and learned that the clot that took up residence in the left atrial appendage finally disappeared.

I then had a good one on one with Dr. Link. We have postponed the ICD until the 1st of the year. This is not an urgent need situation, but I do have two check marks in the list of 5 risk factors. Random episodes of V-Tach which have been recorded and neutral blood pressure (neither rise nor fall) during stress test.

Since we will be starting Sotol and doing a cardioversion, my stay will be between 5 & 7 days.

I'll be anxious to hear how your own appoinment goes next week. Keep us informed!