Dr.Fett

[tammer]

Hi Dr. Fett (and Ladies of course!!!),
I thought I might get your opinion on my situation as I am SOOOO disappointed.

I was diagnosed june/05 three months after my son was born-EF 15%
Muga in Nov/06- EF 34
ECHO in Jan/07- EF 41
I just had a Muga last night fully expecting to be well into the 40's and the result was 37!!! Does that mean I am going backwards not forwards?? Isn't the muga EF usually higher than the ECHO EF?
I feel like I keep getting bad news all the time and I really thought this time I would get some positive results as I think I am feeling better.
I am on !00mg Coreg, 16mg atacand, 25mg spiro, 20mg lasix

Any thoughts?????

[LENA]

What Is A Muga??? Sorry If You Don't Mind Me Asking?

[JAMESFETT]

I think a MUGA (Radionuclide scan of heart function) of 37 percent is probably equal to an echo of 41 percent. I would consider that within the range of variability for two different tests, or in other words, stable function for now compared to January 07.

You are on good treatment, pretty much max. The future may well hold improvement; that is certainly yet possible. To me, the question would be, "Do you have an ongoing inflammatory process in your heart?"

I would try to answer that question by these tests:

1)blood CRP. Is the value above 10 mg/liter or 1 mg/deciliter? If so, that suggests presence of an inflammatory process.
2)blood BNP. Is the value above your lab's "cut-off?" If so, that indicates ongoing stress on the left ventricle.
3)cardiac magnetic resonance imaging with gadolinium enhancement. Is there evidence of enhancement ("hot" areas)? If so, that suggests presence of inflammatory process. Are any of them within access for endomyocardial biopsy (EMB)? If so, EMB could be considered with special immunohistochemical staining and viral PCR testing.

JD

[Erin]

Dr. Fett, if there is an inflammatory process in the heart in one with EF under 50% -- or over 50%, for that matter -- what can be done to extinguish the inflamation?

Do I understand correctly that if hsCRP results are around 10 mg/L, that inflammation exists somewhere in the body but is most likely in the heart?

Thank you.

[JAMESFETT]

The CRP elevation would not be able to pin-point the source, only to indicate an inflammatory presence somewhere. Fortunately, a new tool is coming along, the cardiac magnetic resonant imaging with gadolinium enhancement, which appears to permit identification of suspect areas in the heart.

With an EF over 50 percent I would not be concerned about an inflammatory area in the heart, unless there were subsequent deterioration.

The specific "non-conventional" treatments available or in-investigation for decreasing an inflammatory process are:
a)immunosuppression with medications, and/or IV gamma globulin
b)immunoadsorption of harmful immune complexes by various means, and
c)anti-viral treatment, right now with Interferon-beta, but other types under investigation.

One would not, however, want to apply immunosuppression without having first tested for a variety of cardiotropic viruses. That would provide the potential for the viruses to become even more active, leading to deterioration, which has indeed been observed.

JD

[JAMESFETT]

The CRP elevation would not be able to pin-point the source, only to indicate an inflammatory presence somewhere. Fortunately, a new tool is coming along, the cardiac magnetic resonance imaging with gadolinium enhancement, which appears to permit identification of suspect areas in the heart.

With an EF over 50 percent I would not be concerned about an inflammatory area in the heart, unless there were subsequent deterioration.

The specific "non-conventional" treatments available or in-investigation for decreasing an inflammatory process are:
a)immunosuppression with medications (such as prednisone and Imuran or azathioprine), and/or IV gamma globulin
b)immunoadsorption of harmful immune complexes by various means, and
c)anti-viral treatment, right now with Interferon-beta, but other types under investigation.

One would not, however, want to apply immunosuppression without having first tested for a variety of cardiotropic viruses. That would provide the potential for the viruses to become even more active, leading to deterioration, which has indeed been observed.

JD

[tammer]

Thanks Dr. Fett,
I don't know my hcrp but I know my BNP is still 338 (<100 being the cut off) (down form 7000). I did have the heart biopsy done before showing to presence of a virus, just what they called "regular heart failure". Are you thinking I would need another type of biopsy?
Would there still be inflammation as my heart is healing? Clearly my BNP would indicate I still have room for improvement as does my EF. I'm wondering if something else is involved here that I should be investigating.
Thanks,
Tammy

[JAMESFETT]

Tammy, I am trying to think of you may have left "any stone unturned." Would you mind having your doctor send me a copy of the endomyocardial biopsy reports? If you sign a release of info, and ask them to mail them to:

James D. Fett, MD
Investigator, Peripartum Cardiomyopathy Research Project
611 Sumner Ave.
Aberdeen, WA 98520-3343

Have you ever asked about CMR imaging? [CMR = cardiovascular magnetic resonance] Using gadolinium enhancement that could possibly give a clue if there are areas in your heart with an inflammatory process; and if so, exactly where in the heart. For example, your previous biopsy could have missed the site just as a part of "sampling error."

JD

[tammer]

Dr. Fett,
I see them July 3rd and will ask for that information to be sent. I did phone this morning and nowhere in my chart is a hscrp recorded. I am assuming they will get me to have another BNP done in July also, so I will ask for that as well.
Thanks again,
Tammy

[tabs]

I am so sorry that you did not get the results that you were hoping for.:( I am glad that you are working with Dr. Fett to try to get to the bottom.

Praying for higher EF numbers in your future,
Twilah

[tammer]

Thanks so much Twilah. I am so totally bummed out and frustrated. I finally thought I was improving and I am SICK of not getting good news.

I've realized I need to quit putting off my life UNTIL I'm better and try to focus on taking care of myself. I stay positive, I do affirmations but right now I feel like it's all for nothing. This time hit me really hard because I actually allowed myself to be a little bit excited that this time I would get good news to share with everyone. Sometimes I feel like such a kill joy.

My sister inlaw is pregnant and so it seems is half the earth besides me and my time is just ticking by. I so deperately want to close this chapter of illness in my life and I still carry around a little shred of hope that I will be able to have another baby. I think I am just having "one of those moments" but it's been a couple of days. I know I will snap out of it and go back to being thankful for my life-my son and my hubby, my family and my friends, but for a few days I just want to wallow in self pity and be mad at the world!

Sorry to dump all this on you!!! I guess I just needed to spew some venom.

Tammy

[tabs]

Tammy,

Dump away girl, dump away!:D You are entitled to feel a little down especially when you didn't get the news that we were all so hoping for. I can completely relate about the baby issue. I was so sure it was a done deal and I was (notice the was) ok with it. But then we started watching a few little ones for respite and then we bought a crib when we had 2 little ones for a few day and now I want a baby!:( It is hard to watch all the new little ones around me (and the growing bellies of my friends). It is hard, but I have been trying to leave it in God's hands. I keep telling myself that I need to enjoy where I am right now and that if we are meant to have more little ones in our house that He will provide them.

Sorry, I just had to add my whine to the fest (although a little fest without the "H" would be better!:p )

Twilah