What Causes Fluctuations In Ejection Fraction Values?

Question : Dear Dr. Iliri,
It is XXXX again, after nearly a month- a long time for me to not ask you a question. It has been now nearly a month since my last echo, so the doubts start setting in very strongly at this point and I become tempted to visit the ER for reassurance. Also, during this journey of OCD and PTSD, I have actually 3 doctors that I have been seeing regularly, which allows me more testing. I know this must all stop in order for me to live normally again.

I want to thank you so much, for all the help you have provided over the last year. I believe I have very good doctors now, but generally appointments are very brief and I am treated as someone who doesn't really need to be seeing a cardiologist. It is confusing to me as I am told I do need the testing every six months, but am also told that I have nothing to worry about. Will I ever be free and not need testing? Will I ever be normal?

You have made me think a lot, and when I consider when I was diagnosed, in October 2014, I had felt very ill for about a week, but I believed it was an allergy to the cough medication Tessalon (benzonatate). I went to the cardiologist because I would have intermittent episodes of not being able to walk for more than a block before feeling like the wind was knocked out of me and having bronchospasms and needing to sit. I could not walk even a single flight of steps without stopping and resting. It was frightening but I believed it was the Tessalon. I guess I will never know for sure if the my Tessalon allergy played a role in worsening my arrhythmia\heart function or if it was coincidental. So my diagnosis and treatment of cardiomyopathy began at the same time I stopped taking the Tessalon and I felt better right away.

When I think back, I know now that for at least three months before taking Tessalon I had been a little tired, had a cough, and constant PVCs. While not extreme, I noticed that hills were hard for me to walk up, and I thought it was stress as I was taking care of my child, working full-time, and taking care of both my disabled parents.

Once I was diagnosed, I was told I was "well-compensated" and "asymptomatic". I looked normal and felt "almost" normal. I was given lisinopril and carvedilol but never a diuretic. My doctors believed I did show signs of CHF, but my ProBNP (I learned later) was over 8000 and I was still coughing. I didn't appear to have peripheral edema, no pitting, but after my ablation my shins, which had been shiny and tight, became immediately soft and lost their sheen.

Sorry to go on and on- I actually do have a question, which is this: how could I have been so sick, with EF 25, and told I had limited time, would need a heart transplant, would not survive long, etc... and yet also told I was well-compensated and doing well, all things considered? I was told most in my condition would not have been able to walk or function normally. Once the Tessalon was stopped, I felt quite normal. So my worry is this- couldn't I once again be sick, have a weakened heart, and yet have doctors think that I am okay as I don't look visibly edematous or am not noticeably out of breath? It is why I am so addicted to the echoes- two ER doctors released me and said I had allergies when I actually had cardiomyopathy as I wasn't given echo until I requested one from a cardiologist at his practice. How can I trust that I don't need an echo to know that I am ok?

Second question- I am a member of a heart-disease community (I should stop reading it, I know) and people with idiopathic dilated cardiomyopathy frequently report very fluctuating EFs. They seem to go from 25 to 50 t0 55, back down to 30. It is what makes me think that heart function is so variable. Of course I don't see their echo reports, only the EF numbers we are always so fixated on. Is this variability likely because they still have "active" cardiomyopathy, with enlargement and other issues and they are on medication? Occasionally someone will report that they have normal EF again, but they are never deemed cured, or taken off medications. Is PVC-induced CM different? Am I truly cured?

I know I have to trust my doctors and you. I have to realize there is more than ejection fraction and my doctors are following me closely. I have to stop trying to check my pulse pressure (sometimes it feels so faint and I'm sure I'm dying even though I feel utterly normal) and checking fluids, especially, but I feel like I have to be on high alert as things could change at any moment, as it seems to, for most people with DCM. I feel tomorrow if I visit ER, maybe I'm in heart failure, with EF 25 again.

Sorry, these questions are not focused, but I guess I just want to know how I am different from those with DCM who have recovered normal EF and yet are not considered cured. I have been off all medication now for 5 months, am exercising every day, and have great energy, but I am afraid every day.

Thank you, Dr. Iliri. You have helped me so much. Only with your help have I been able to survive over the last year.

Many many thanks,

XXXX

Thank you so much Dr Iliri. So in my case of pvc-induced cardiomyopathy- I very suddenly developed PVCs, in high number- when my illness developed would it have happened slowly or would my EF had dropped quickly? I developed PVCs in May 2014, and by August 2014 I had some orthopnea although I didn't know what It was and thought it was just allergies causing discomfort when lying down.

Is the edema in heart failure directly related to fluid consumption/retention/lowered urine output or is it a more complicated process? I never noticed lowered urine while sick but I never paid attention. I wish desperately I could simply forget again.

I guess I am trying to figure out if I could possibly fall ill again and somehow miss the signs, as I did last time. I wish I had felt worse than I did, but I was living my life wirh mild symptoms which seemed like stress.

Thank you Dr Iliri. Your help is what gets me through many days. 3 1/2 weeks since last echo and of course I am worrying that there have been negative changes.

Many thanks,
XXXX

Thank you dr iliri. I tell myself after each echo
that I will stop being so anxious but I find that even one month after my last echo I am worrying that EF 64 is significantly lower than 70 in February. I wait in agony for next echo and fear <55.

So my measuring fluids and riduculously putting my feet up after drinking is doing nothing? If i drank and movef normally my kidney function would be the same? I fear if I stop these rituals I will immediately go into heart failure. I know I cannot go to ER every week so I must learn to live again.

My PVCs have not returned and I have no symptoms other than worry always of fluid retention but no visibl

edema. I would definitely have signs such as shortness of breath or fatigue if I were having a relapse?

Thank you so much.
XXXX

Thank you so much, Dr. Iliri. I wish all my doctors here had believed in PVC-induced cardiomyopathy as the doctor I speak of so much who was so obsessed with fluid told me that my theory based on research was that PVCs could have caused my heart problems, he said it was a fairy tale. Even my current doctor, who originally diagnosed me and did my most recent echoes didnt think it was likely that my PVCs alone caused my cardiomyopathy until my echo three weeks after ablation was completely normal. He was shocked and says I am one of his top 3 cases in terms of recovering so quickly from what he called a "dire" condition.

Would you think it was predictable that someone with 65,000 PVCs a day would get cardiomyopathy? Would 50% PVC burden make sense to you to cause EF 25? I am just so shocked now that I walked around for months with the constant PVCs and then eventually signs of heart failure but never imagined I could be seriously ill. But I never felt sick enough to need to stop work or even skip going to the gym or play with my son. Without having adverse reaction to medication, I probably would have just had cardiac arrest without knowing I was sick.

I am trying to remind myself that I did know that I was having PVCs. I am telling myself that you have said without a reason, I would not just spontaneously go into heart failure.

For me, it feels like I just went into heart failure with no signs and no symptoms and no cause so that's why I am so scared, especially of fluid. But I have to keep reminding myself that I had a cause which is now cured.

Is that right? One doesn't float in and out of heart failure for no reason? Without ablation, my heart would not have returned to normal size with normal valves and EF? Are people with DCM from other causes(other than arrhythmia) ever cured and taken off medication?

Thank you so much, Dr Iliri. Despite my continued questions and need for constant reassurance I am getting much better. If only I could forget about fluids, I would be happy.

Thank you again,
XXXX