Life Expectancy??

[MiasMom]

Hi,

Some of you might remember my post from a week or so ago regarding my first follow-up appointment with my cardiologist... for those who don't, I'll sum it up quickly...

I was diagnosed with an EF of 40-45% in March. My follow-up echo showed that the my heart is now relaxing fine (which it wasn't at dx) but that my EF had not improved at all. My cardio wants to add a beta blocker to my current meds (which include enalapril, lasix & potassium, digoxin and iron sulfate). At the time I was so upset by his suggestion that I may have to quit breastfeeding when I add the beta blocker that the rest of the conversation was kind of a blur. (BTW - feeling much better about the BFing now thanks to all of you...)

I do remember that, at one point in the conversation, my cardio told me that, right now, I do not have a normal life expectancy. Still floored by the BFing issue, I didn't think to ask how much shorter than normal it is or if the addition of beta blockers has the potential to return my life expectancy to normal even if my EF never gets any better.

When I left the hospital, everyone was so positive... telling me how slight my case was and how good my chances were that I would recover completely in 3 - 6 months that I never worried too much about life expectancy. Finding out that my EF hasn't changed at all after 3 months now has me worried. Can I expect to see my baby grow up?? I see my cardio again in a couple of weeks and can ask him to clarify then, but I thought I'd ask you guys because it just keeps nagging at me... especially on days like today when I'm super tired and I have a gazillion palps which, although they don't concern my cardio, are a constant reminder to me that things aren't right.

Hubby says I shouldn't worry and that nobody has ever said anything that would suggest that I might not be around long enough to see my baby grow up (he's been to every appointment and heard everythong I've heard), but I still can't let it go...

Anybody have any information to share with me about life expectancy?

Also, I'd love to know if anybody out there improved minimally at first like me but had a good outcome.

Dr. Fett... I'm sure you've answered a million questions just like this, but, if you have time, I'd be very interested to hear your take on my situation. What might I expect in the way of continued healing, life expectancy, etc.?

Thanks so much everyone! It's nice to be able to share my fears with people who won't think they're completely irrational (I hope :o )!

[jasper]

Hi Jennifer
Not irrational at all, I do understand. This forum has been great for me, all the positive stories shared and questions answered.
I know life expectancy is much better today than it used to be. Knowing more and having better medications has made a huge difference. I too tried to get a straight answer from my doctors. They assure me that with proper care, low sodium diet and faithful use of my medications, there is no reason for life to be any shorter than it would be without cardiomyopathy. I'm banking on that and praying that I am here for my son through it all!

I teach too, gifted 3rd and 4th grade in WA. Are you still working full time? Hang in there, I am one year out and time makes all the difference.
Good bless!
Jennifer

[MiasMom]

Jennifer,

Thanks for your response. I'm taking the coming year off to be with Amelia (that was the plan even before PPCM) -planning to return in August 2007, hopefully back to fifth grade.

Jen

[JAMESFETT]

Jennifer, I think it is much too early in your situation to focus very much at this time on "life expectancy." The reason I say that is that currently over 50 percent of newly-diagnosed PPCM patients are with time (from one to 40 months or more) recovering completely (and then have a normal life expectancy) or else experience so much improvement that they can be assured of a very long life expectancy (talking in terms of many, many years). Right now, for you, it is most important to focus on healing. The addition of a beta-blocker is not only a good idea, but it is most advisable; if I were to select the best, I would say right now it is carvedilol (Coreg in USA). In fact, I would use it from the earliest possible and tolerated moment following a diagnosis of PPCM. Carvedilol is probably also safe to use while continuing to breast feed, but not enough time for studies for absolute assurance. You are still early in the course of PPCM (only 4 months post-diagnosis). If your EF were below 40 percent, and not yet improved I would definitely seek out cardiac catheterization in your situation, with endomyocardial biopsy to include studies for inflammation and viral presence. With an EF at 40 or greater, as in yor situation, the biopsy may be less strongly indicated, and timed observation with the addition of carvedilol being a suitable course to follow. After starting the carvedilol, you will know within a month how much improvement you will have, so a repeat echo would be indicated at that time. If you are over 45 percent at that time, it would be perfectly reasonable to continue your treatment course without cardiac cath and biopsy; but if you were not improved, the cath and biopsy would move higher on a reasonable plan of action. You need to discuss that with your cardiologist. If I can be of any help let me know. It is also possible your lasix can be dosed according to weight and fluid accumulation, it may not even be necessary at this stage. Our practice is also to discontinue digoxin at this stage, although we may never have used it at all, there are a lot of different takes on the risk/benefits from digoxin. When used a low dose regimen (0.125) may be safer and equally effective, and monitoring of serum levels is advisable. Please understand that I am not advising your treatment, only sharing my experience and understanding of what works and why.

JDF

[miracle baby]

I know when you're new at this you consintrate allot on if you're going to make it.That was and is my biggest concern if I will have the privledge of seeing Macy grow up.I try to just focus on her and how amazing she is.It only been a few months I would just try to focus on getting better and enjoying your life.:)

[MiasMom]

Jennifer, I think it is much too early in your situation to focus very much at this time on "life expectancy." The reason I say that is that currently over 50 percent of newly-diagnosed PPCM patients are with time (from one to 40 months or more) recovering completely (and then have a normal life expectancy) or else experience so much improvement that they can be assured of a very long life expectancy (talking in terms of many, many years). Right now, for you, it is most important to focus on healing. The addition of a beta-blocker is not only a good idea, but it is most advisable; if I were to select the best, I would say right now it is carvedilol (Coreg in USA). In fact, I would use it from the earliest possible and tolerated moment following a diagnosis of PPCM. Carvedilol is probably also safe to use while continuing to breast feed, but not enough time for studies for absolute assurance. You are still early in the course of PPCM (only 4 months post-diagnosis). If your EF were below 40 percent, and not yet improved I would definitely seek out cardiac catheterization in your situation, with endomyocardial biopsy to include studies for inflammation and viral presence. With an EF at 40 or greater, as in yor situation, the biopsy may be less strongly indicated, and timed observation with the addition of carvedilol being a suitable course to follow. After starting the carvedilol, you will know within a month how much improvement you will have, so a repeat echo would be indicated at that time. If you are over 45 percent at that time, it would be perfectly reasonable to continue your treatment course without cardiac cath and biopsy; but if you were not improved, the cath and biopsy would move higher on a reasonable plan of action. You need to discuss that with your cardiologist. If I can be of any help let me know. It is also possible your lasix can be dosed according to weight and fluid accumulation, it may not even be necessary at this stage. Our practice is also to discontinue digoxin at this stage, although we may never have used it at all, there are a lot of different takes on the risk/benefits from digoxin. When used a low dose regimen (0.125) may be safer and equally effective, and monitoring of serum levels is advisable. Please understand that I am not advising your treatment, only sharing my experience and understanding of what works and why.

JDF

Dr. Fett,

Thanks so much for your response! My cardiologist also feels that Coreg would be the most effective beta blocker for me to be on, but is concerned because he says it is sometimes not tolerated well by asthmatic patients. While I am not actually asthmatic, I have RAD with my allergies (particularly bad around animals)... He says that ToprolXL is often better tolerated by asthmatic patients but isn't always as effective as Coreg. Knowing that ToprolXL is less likely to affect my breathing (and being prone to anxiety about my breathing anyway), I would prefer to take that, but, of course, I'd also like to get as well as I can as fast as I can. Should I try the Coreg first to see how it is tolerated? If I don't tolerate the Coreg, is it still reasonable to hope for improvement on the ToprolXL? Also, you said that after starting the Coreg, I will know within a month how much improvement I will have... does this mean that after a month I will be as well as I can expect to be? No probability for improvement after that? Would this be the case for ToprolXL as well?

Thanks again for taking the time to answer my questions! I appreciated it so much!!!

[JAMESFETT]

Toprol XL is a good alternative. In the medical literature there is not so much evidence for Toprol as for Coreg about the beneficial effect to prevent undesirable re-shaping (remodeling) of the heart in dilated cardiomyopathy. The unwanted re-shaping is not so efficient a pump. No, one month of Toprol or Coreg benefit does not represent the final EF, because there is a lot of on-going healing that takes longer. But one month will tell you what hemodynamic benefit the medicine gives, just in its effect on the heart as a pump, aside from the basic underlying healing process. I expect that you will have quite a lot more healing and very possibly complete healing in the months ahead. It is important to realize that ACE-inhibitors (your enalopril) and beta-blockers (such as Toprol XL and Coreg) are the two most important medications in treating PPCM and appear to have two major effects on the heart affected by PPCM:
1)Improved mechanical pumping and cardiac output from hemodynamic effects and
2)Halting an underlying immune dysfunction process that negatively infuences the heart due to impairment of the heart muscle cells (cardiomyocytes). Stopping that process as early as possible helps to preserve cardiomyocytes that are still alive and able to recover from their "paralysis."

JDF

[tabs]

Just to let you know......My lowest EF was 7% just over 6 years ago. I am currently at 43% and I do not feel that my life expectancy has diminished at all! I plan on living as long as God wants me here on earth!

Twilah

[heartfulloflove]

I understand you being worried. I know you wanted improvement, heck, I do too. But really, from what I have seen, the majority of the big improvements seem to happen by or around the 6 month marker. Lots of people make improvements well beyond that too. Three months is early. The big important thing here is that there is some overall improvement (the relaxing is now normal)- and that your EF is holding steady. A beta blocker may be just the one little extra boost you need to get you on the road to a full recovery. Hang in there. Yes, easier said than done, I know.

[LauraNP]

THERE IS NO WAY THAT YOUR CARDIOLOGIST CAN DETERMINE YOUR LIFE EXPECTANCY FROM THREE MONTHS OF TREATMENT!!

This guy does not sound like a good doctor..

I have had DCM since 1994.
No one has ever said anything to me about a decreased life expectancy. You're going to be fine!!

[heartfulloflove]

"I do remember that, at one point in the conversation, my cardio told me that, right now, I do not have a normal life expectancy."

I just re-read this after seeing Laura's response. I didn't even catch that the first time. Good lord what is your doctor thinking? DCM is typically manageable (and that's saying if you stay the same as you are now, and I personally think you have improvement in your future since your diastolic function has already improved), and does not necessarily reduce life expectancy. Yours is mild, decreased life expectancy associated with DCM is typically in people with very severe disease. You might need to make some adjustments, but man, don't go thinking morbid thoughts based on what some apparently mis-informed doctor told you. Eeesh.

[sfekke]

Just want to add that at my 3mo follow, my echo was 38. My stress test was really well. The cardio said my life expectancy wasn't impacted.