Diagnosing PPCM

[mandyb]

Hi!

I noticed that many of you were also misdiagnosed initially. I just got my hospital records and saw that after being taken in for a chest x-ray on December 24, it was concluded from the x-ray that I did have congestive heart failure. However, the doctors did not get a specialist in to see me until December 26th. Crappy, right? Also, they didn't even tell my family or me of their suspicion that I was in heart failure. Does anyone know if that could have caused further damage to my heart or anything? I am so confused as to why they would have waited to call in a specialist for a whole day... especially when my lungs were so full. Maybe they were all just too busy eating their Christmas dinner! I know... I know... I need to not be bitter! Any ideas as to why they waited?

Thanks,

Mandy

[SerenaWelsh]

No ideas why the wait. We've all got similar stories of someone dropping the ball.
Being bitter is a part of it, and I think you need to feel that in order to heal emotionally.
We all have a need to feel like someone did this to us. The fates or destiny wouldn't have been this cruel, right? So somebody's got to answer for what's happened to us. It makes it easier to feel that way when so many of us just got *crappy* treatment to begin with.

It helped me come to grips with everything just to realize that these doctors aren't evil. They didn't intentionally allow me to become so sick. Granted, they were ignorant, and there's very little room for that when it's your profession to save lives. So we do something about the ignorance, so as they don't have that excuse when the next lady turns up with symptoms.

[Lauren]

Serena, I couldn't have said it better myself.

[JAMESFETT]

When doctors don't see a medical condition very often sometimes the earliest signs and symptoms just don't sink in. That's why it is so important to educate medical providers. Here is what I say in an article about the many different clinical presentations with developing PPCM:

"These cases serve as reminders that clinicians must think of PPCM in any peripartum patient with unexplained disease."

You all are helping to get the message out. It is very important to do so because any delays (I'm talking about hours, days, weeks) can have very serious consequences in terms of survival and extent of recovery.

James

[mandyb]

Thanks Dr. Fett. It really helps to get advice and answers from you. I appreciate all of the time you spend helping us.

Mandy

[JAMESFETT]

Mandy, just like you I am also frustrated by delays. I think I see clearly that it is all a matter of numbers of functioning cardiomyocytes (heart muscle cells). Every delay results in more loss of cardiomyocytes. That explains severity of disease and ultimate outcome in terms of survival and left ventricular recovery. We must diagnose earlier and apply effective treatment earlier. If I can do anything to "spread the word" I will do so. With PPCM today--so far--has been a three-nation day (USA, Haiti, South Africa) and a six-state day (WA, MN, UT, TX, NH, VA).

James

[Karen T]

Dr. Fett...what do you mean by a "six-state day"? I see NH on the list and it caught my curiousity.
Karen

[JAMESFETT]

Hi Karen. That's just referring to PPCM issues dealt with in that day. It means hearing from a PPCM patient, usually, but also I talk with physicians from various states and countries, since I've developed a pretty extensive e-mail network. At my last count, I have communicated with PPCM patients from at least 40 states--and only a small fraction of PPCM patients are on the internet/e-mail contact. It's all a part of the process of disseminating information and helping make people aware of PPCM. I try to stay aware of all developments having to do with PPCM, and I know we are in the "advance wave" of PPCM research.

James

[mandyb]

Hi Dr. Fett,

A few quick questions if you don't mind... while in the hospital before my diagnosis, I had a chest x-ray. Some of the terms are confusing. Would you mind shedding some light on them?

They are:

1. diffuse patchy opacification

2. peribronchial cuffing

3. bilateral pleural effusions

I am most interested to know if I have any permanent lung damage. I am really struggling with exercising and struggle at night with breathing. I am wondering if my lungs could be damaged after reading my lung x-ray. Then again, I have no idea what any of it means!

Thanks!

Mandy