More questions

[Mindyt]

Hello Dr. Fett,
I still have a few questions/concerns that I would like to ask for your opinion on. My EF at diagnosis was 30-35%. This was 9 months after my son was born so it doesn't meet the criteria for PPCM. My cardiologist is classifying it as IDCM. Are there any tests to determine whether it is PPCM or IDCM? After 6 months, my EF is 40%. I have made improvements but I am not back to "normal". I have also heard that if it is IDCM that it is very unlikely that I will ever return to normal. This is discouraging to hear as I was under the impression that I could make significant improvements on medication. Can someone with IDCM make improvements like a person with PPCM?
My LV size is considered within the normal range and my heart never showed any signs of enlargement. I never had any fluid in my lungs or other signs of congestive heart failure. Only symptoms were shortness of breath and fatigue. I guess my question is why is my EF still low if all other aspects of my heart appear normal?
I am currently taking Coreg and Cozaar. I still have shortness of breath frequently. I find myself yawning frequently to take in enough air. The yawning is driving me crazy. Could my medications be causing the shortness of breath?
The only tests that I had were an echo at diagnosis and at 6 months and an angiogram shortly after diagnosis. Should I have any other tests? I have heard that a MUGA is more accurate. Should I insist on having this type of test to get a more accurate reading on my EF? I worry that my cardiologist has not done enough adequate testing to determine the exact cause of my cardiomyopathy or my ongoing problems with my shortness of breath.
Any advice you could give would be appreciated. Thank you for all your hard work.
Mindy T.

[jmonte]

Mindy (& Dr. Fett),

I don't mean to intrude on your message to Dr. Fett but I wanted to ask you a question. I , too, didn't meet the criteria for PPCM which worried me about the chance of being "normal" eventually too. I had no symptoms - just fatigue, but who isn't fatigued with a newborn and I couldn't determine "shortness of breath". Can you tell me what your shortness of breath was like? Dr. Fett, is there a standard for determining shortness of breath in people? I used to run competitively so I was used to being in incredible shape. To me, being winded was scary. I would love to know if thre is a benchmark for this symptom. I have had a very hard time trying to figure out if I had this. Thanks so much for your help. By the way, I am currently at 40-45% by echo and 48-50% by MUGA and Cardiac MRI. I was told I have been probably at this level for a long time and it is my "normal". I was told I would only be moderate risk if I got pregnant and because my body tolerated my first preg with no problem, I decided to go for it and am 14 weeks pregnant. Had my first echo two days ago and it is the same as my last one - about 45%. There seem to be more women lately on the board with IDCM- I find it fascinating reading about everyone's different experiences. Good luck finding your answers and write me anytime! Julie

[JAMESFETT]

Thanks, Mindy. I think I can shed some light for you:

1)Too much is unknown about both IDCM and PPCM. The "I" in IDCM stands for "idiopathic" meaning "we just don't know." Thus, we cannot say for sure that IDCM will not improve, but we know PPCM can and does. Reports have come in the medical literature about biopsies of the lining of the heart (endomyocardium) in IDCM patients, finding viral particles, treating with anti-viral medications, and seeing improved function as shown by improved EF. So don't give up about healing. If it is FDCM (Familial DCM), that is hereditary, and while medications will help to give improved EF, there is not a natural healing process that will bring improvement--YET. I say "yet" because there is research on the growth of new heart muscle cells from progenitor blood cells, and if that comes along it may be possible to regenerate new heart muscle cells. Hope and pray. Whether you have IDCM or PPCM there is good evidence to suggest that either may yet improve, and the potential for improvement continues for several years, not just several months.

2)The MUGA is considered by some to be the "gold standard" in determining EF, etc, but I would not be too concerned to seek it out, because the echo EF on a serial basis will tell you all you need to know. It's not worth thousands of $$ to do the MUGA in most cases, because it represents unnecessary duplication.

3)You had an angiogram. I suppose that means you had a heart catheterization. I am trying to encourage cardiologists who need to do a cardiac cath for PPCM patients to do the special studies, including biopsy and PCR technology (which requires NOT to preserve the tissue with formalin, but to preserve by deep freeze at minus 60 C) to identify possible presence of viral particles. It is more than academic to know this, since newer anti-viral treatments are available, and that could give improved LV function, meaning improved EF. It is one of the most important pieces of evidence we are still waiting for in PPCM. Think of it, no one in the world has reported doing this, and the one who does will make a "breakthrough" because then we will know "yes" or "No" concerning viral etiology of PPCM. I wish I could be the one to do this, but I'm not a biopsying cardiologist, so all I can do is be a cheerleader in that directioin.

4)I'm quite sure that the yawning symptom is not related to your heart function. Usually that is a sign of a mild hyperventilation in which a person feels she or he cannot get a satisfactory breath. The hyperventilation drives off the carbon dioxide in the blood and leads to the desire to yawn--but of course that does not fix the problem, it only tends to make it worse. But this mild hyperventilation is not serious, and often when one knows what is happening, fear and stress lessen, and that problem fades away. You may want to talk with your doctor about that.

James

[JAMESFETT]

Julie, there is great variation on the symptom of shortness of breath and the level of LV (left ventricular) function, as manifested by EF. I have seen women with EF of 20 and have remarkable exercise tolerance, but I have also seen women with EF of 40 and have marked shortness of breath on exercise, even some at rest. I wish there were a standard, but it is highly variable from person to person. If you have FDCM (familial) or IDCM (idiopathic) current understandings would say that you have less risk of deteriorating in LV function during this pregnancy than if you have PPCM. Those with a subsequent pregnancy who are at lowest risk are those who have returned to apparent normal function, which I am calling for practical purposes an EF greater than 50. I do not wish to frighten you in any way, but I always tell about PPCM what is the current understanding (from someone who deals with scores of PPCM patients), so I want to encourage you to do just what you are doing, monitor your heart function very closely during this pregnancy. To me, that means (aside from careful monitoring of weight, pulse, B.P.):
1)as a minimum, an echo in each trimester and in the first month after delivery
2)blood B-type natriuretic peptide in each trimester and in the first month after delivery. Each lab's "cut-off" point is different, but reaching it may be a clue of change in LV function well before any symptoms occur.
3)blood high sensitivity C-Reactive Program, watching for levels in the last month of pregnancy and the first month postpartum over 10 mg/L. That may not indicate trouble, but it could be an early clue of something coming.kk

Let me know if you have other questions, the contact is below, and I would be glad to talk with your doctors if they have any questions. I cannot treat you, but I can share information.

James

[Mindyt]

Dr. Fett,
Thank you for your insight. My doctor has mentioned that anxiety may play a part in my ongoing difficulty with shortness of breath. While I believe that I have had some anxiety about this whole ordeal (who wouldn't???), I still feel like my chest is tight and I am still short of breath at times even when I am feeling relaxed and calm. Like you said, everyone is different and maybe I am still feeling some symptoms even with an EF of 40. I am just frustrated with not being able to breathe like I used to.
I have heard that Prilosec for reflux is not recommended to women with PPCM. Is this true? I have taken Prilosec for years for reflux. I have also taken Nortriptyline for a migraine preventative medication for almost a year now. My doctor has told me both are fine.
Also,why is my EF still low if my ventricle size is normal?

Julie,
My shortness of breath started out as just not being able to take in a deep breath and having to try several times before I felt like I had enough air. I had a really hard time doing simple things-like climbing a short flight of stairs. I would feel like someone was holding a pillow over my face and I was struggling to breathe in enough air. My heart was also racing at about 115-130 BPM at rest. Before my diagnosis, I actually thought I might have asthma or something. I had such a hard time catching my breath and I was exhausted.
I still seem to have some shortness of breath but I do know that it is better than before. How long after you gave birth did you get diagnosed with cardiomyopathy? I have been trying to think back and I don't remember any symptoms at all until he was 9 months old. It seems to fit a diagnosis of IDCM instead of PPCM.
How old is your first child? My son is 17 months old now. I would love to have another baby someday. Maybe in another 6 months or so I will think about it some more. Please let me know how you are feeling. Best wishes for a happy, healthy pregnancy.
Mindy

[JAMESFETT]

It's very common to have a normal sized left ventricle with that good, but not normal EF. Although we require as one of the echo criteria that the LV be dilated some, over 2.7 cm/meter-squred body surface area, we do know that some people who develop the decreased systolic function (EF) with PPCM may actually never show any LV dilatation--those discovered when the cardiomyopathy is early and more mild. Lucky for them, because then there is a better potential for full recovery.

James

[SerenaWelsh]

Mindy,

What you've just described as shortness of breath is what I feel. I take huge gupls of air, but it's like not enough goes in. I'm thirsty for air.
A stress test last year revealed (among other things) that I have decreased lung capacity. I believe "lung capacity of a 70 year old man) was what came to mind. That left me very confused. 70 year old marathon runner, or 70 year old 3 pack a day smoker? Anyway, I'm rambling.

I feel that sort of shortness of breath when I'm taking on fluid, and when it's too hot outside (NOW, for instance). This is not the same as the shortness of breath I feel when I've exerted myself too much. That's more of a normal, "I have to take alot more breaths" feeling.

My doctor recommended that I keep a close watch on the fluide by weighing myself daily. a gain of 2lbs or more over a 24 hour period warrants a lasix (furosemide). I take 10mg. If that doesn't work, I take 10 more. Anything requiring more than three doses, I call the doctor (I've not done that since last year -yay!).
If it's hot outside, I do all my chores and errands early in the morning, or later in the evening. I know it doesn't seem like alot when you're just jumping in and out of an air-conditioned car for a short walk to the grocery store, school, etc... but it can really take a toll on your heart.

I'm telling you all of this just hoping you'll spot some similarities in your activities and their correlation between your SOB periods. Behavior modification is what really has worked best for me.

[mandyb]

hi Mindy!

I too have shortness of breath and my ef is 64%. I can't figure it out. A lawyer I spoke with suggested possible lung damage from all of the fluid I retained during my pregnancy. I don't know though... I haven't really discussed it with my doctor yet. I notice it though in everything that I do whether it is going up stairs, mowing my lawn, etc. It is frustrating and also causes a lot of anxiety! It started for me about four weeks before I had my son (classic ppcm!) and while I have seen improvement, it hasn't gotten 100% better yet!

Good luck!

Mandy

[Mindyt]

Thanks Serena and Mandy. I had lung capacity testing and I guess my lungs are great. I just can't figure out why I am still short of breath. My doctor seems convinced that it is not my heart. Anyway, it has been better the past couple of days so that is a start.

I recently started on Coreg again and I am hoping for more improvement on it. I was on Toprol before because my doctor thought I had a reaction to the Coreg initially. But I seem to be tolerating it well now. What dose of the Coreg are you up to?
Mindy