Discovery and Recovery: my PPCM story
I should have known something was wrong when I had to sit to take a shower. i should have known something was wrong when i couldn't stop coughing and couldn't lay down at all much less to sleep. i was swollen and could hardly walk and breethe. Then I couldn't hold my baby..I had to get my older son to take care of him...thats when it hit me i was in trouble. I thought i was just being a wussy. I had had a c-section and i had never had surgery before..i thought I just wasn't handeling it well or maybe something had gone wrong with the c-section. I had no idea what was really happening.
07/07/07, One week after my son was born, I was admitted into Spartanburg Regional hospital. after probes, blood and tests my husband was told that I was lucky to be alive, much longer and I would have died. my ef was in the 20's and my lungs were full of fluid. I had neumonia and was in heart failure. I was placed in ICU for 4 days. At first i wouldn't eat..had no desire nor the energy. My doctor told me to eat or he would put a feeding tube down my throat. I cried and slept and took medication. I was too sick to see my baby and ICU is no place for a new born.
On the 5th day they took me to recovery and i finally got to see my baby. I stayed in the hospital 4 more days. the doctors came and talked to me a heart doctor and a lung doctor. I was told that I had been dxed with PPCm..although I had no idea what it was. They told me I could not breast feed my son b/c the medication could come through my milk. I was told about how I almost didn't make it to the hospital and how lucky I was and then they delt the final blow..they told me I shouldn't have more children, that there was a very high risk of mortality if I were to become pregnant again and they agreed that i should not chance it. Soon I was released and went home on oxygen, a blood pressure pill, a heart medication, a potassium pill and 2 fluid pills. i went into a depression that i can't explain. i was not harmful to anyone i loved my baby and took care and did everything for my olders on as well..i did everything just like before..a little more slowly and with more help..but it was like a daze..and i would cry and mourn the children i wouldn't have and cry over the daughter i wouldnt have and feel sorry for myself that i had to take all these medications, that i couldn't breast feed my baby like i wanted, that i couldnt have more, that i couldn't be as active right away with my boys, that i almost died..i couldnt get past that...the fact that it all was almost over....there were so many things i had not done and my baby he was just born and I was scared to sleep and scared of everything. 2 months after being at home i was off the oxygen and 11months after being home i was being weened off the medication.
I found the PPCM boards on facebook after researching online for a while. I wanted to learn more about it and why I had it. it pissed me off so bad that there was no real reason...there was nothing to blame... There was no way to get back what I had lost. noting to say..ok if I do this and this it will make this happen and I can have another baby....I found the PPCM boards and I finallly found answers. I asked so many questions i know people were annoyed with me. i shared my pain and my fears and my worries and finally i felt like I could start to move on. After a few years i started thinking about trying again..we had looked into it and women who had recovered fully were trying for post ppcm babies, some had post ppcm babies and were fine. over 2 or so years I floundered between wanting to try and being afraid. I would see success and then I'd see a woman who relapes and was worse or another sister who passed..there for a while it seemed a heart sister was leaving us all the time...too many women lost to this horrible thing called ppcm. I started rethinking the trying again.....then my decision was made for me yet again....
I had a relapse in Feb. of 2013. i had a severe chest infection and very high stress. It threw me back into heart failure again. This time I was told that they believe i was not fully recovered from the last time and that i was taken off my medications too soon before and that i have been lucky not to have had a recurance sooner than this. i got to the hospital soon enough this time that I did not need to go to ICU but I did spend 10 days in the hospital. I came out with pretty much the same medications, minus the potassium and adding on metformine to help with pre diabetes. also i came home with a dx of sleep apnea.
i cried and went into the same depression I went into the first time. I asked my dr.s if i am going to have to always deal with the possibility of recurring heart failure and they said yes. They told me this time that I would probably be on my medications forever. So now I live with it day in and day out dealing with swelling and dr. appointments and medication. but it could be worse. and at least I am watching my boys grow and live. We were also blessed with a granddaughter. and although we were none too happy for our then 16 year old to be a daddy, we grew to understand what a blessing she is to us and our fsmily. I still struggle emotionally at times and physically at times as well...but I'm alive and living.