PDA

View Full Version : My PPCM is FDCM

Yvonne
03-21-2005, 06:56 AM
I just find out my PPCM is almost for sure an expression of familial DCM. For now I don't know what to think.
SerenaWelsh
03-21-2005, 07:54 AM
What does this mean in terms of treatment, or expected recovery?
And how did you find out? I'm very interested!
Yvonne
03-21-2005, 08:12 AM
I once told you my sister went to a cardiogeneticist with question about another pregnancy. My sister asked me to participate in a trial and I agreed. Now I found all the forms and info to do the investigations and I looked on the internet to find the adres of the professor her geneticist recommended(because I live in London and not close to her geneticist in the Netherlands). The professor is very famous in this subject (his name is William McKenna) and I read some articles. It describes my story! Some members of a family can have symptomless DCM for years. Strain like pregnancies can activate occurance of heartfailure.

The link to these articles is:

http://www.orpha.net/data/patho/GB/uk-Peripartum-cardiomyopathie.pdf

and

http://www.orpha.net/data/patho/GB/uk-FDCardiomyopathy.pdf










http://www.orpha.net/data/patho/GB/uk-FDCardiomyopathy.pdf
Yvonne
03-21-2005, 08:14 AM
Something went wrong with the links:

www.orpha.net/data/patho/GB/uk-FDCardiomyopathy.pdf

www.orpha.net/data/patho/GB/uk-Peripartum-cardiomyopathy.pdf
SerenaWelsh
03-21-2005, 08:28 AM
Yvonne - Thank you again.

All of the kids have their annual cardiac check up in April, and I think your story has made me more paranoid about something being wrong with them. Madi already has DCM, so now with this I worry when Cate coughs, or Jack's lips turn blue - even if it's only because he's freezing after getting out of the bath tub.

I will also put these links on our links and ref page.
Yvonne
03-21-2005, 08:42 AM
Serena,
I hope I didn't scare you too much, that's not why I posted this. It was just to express my feelings about this subject.

I still think whatever it is called I will show positive results of it. Let's go for it. My new quote is: I live with DCM

I recognize your feeling about your children, that's why I don't like swimming in cold water. My eldest son was very tired this weekend and I have to admit I measured his pulse (and you will understand this was just normal). How paranoia can you be?
So maybe once I will be more relaxed about this.