Hello all,
My PPCM story:
I was 24 when I found out I was pregnant at 5"8, 108lbs. I always have been extremly thin and frail my entire life. Anyways, I had a pretty rough pregnancy and at about 7 weeks I started throwing up all day everyday ! When I was about 7 months, I would only get sick when I brushed my teeth. Anyways, towards the end, I was struggling to walk (always out of breath) and my legs and feet were super swollen and filled with fluid. The Dr.s always told me " Its normal". I went into labor on July 9th 2006, and had my baby July 10th. I was in total labor for about 15 hours. I had an easy delivery other than the waiting game for his grand entrance! I went from 108 to about 164 when I finally delivered my beautiful baby boy.
I was only in the hospital barely 2 days. The hospital checked me and released me and my little angel. He was allergic to milk though, and we found this out a month later after taking him to the dr.s several times with tummy issues and being told "I was a new mom and babies cry" a few times before they realized he had blood in his stool and was allergic to milk protein. It was definetly frustrating, knowing something was wrong and the drs. weren't taking me serioulsy. Anyways, I was always exhausted all day long. I never really slept because he was always crying and colikcy and required rocking motions and walking with him for hours before he would settle. When I did sleep, it was only for short intervals, because he would wake up every 40 minutes to nurse. I now know his crying all day is the reason I am a ppcm survivor today.
The nightmare began, when my milk came in. (I have a strong feeling prolactin is behind this) My milk came in the night I brought my son home. I didnt sleep much at all the first few days, but when I did sleep, is when I would jolt up out of my bed struggling for air !! I couldn't even catch a breath, yet in my head I'm startled and thinking why and whats going on?? I was just in a deep sleep and now Im fighting to breath? Was I holding my breath in my sleep? Did I have a nightmare and started to hold my breath? Maybe I am getting sleep apnea? Maybe I am so over tired, that Im simply forgetting to breath? The hosptial checked me, so everything is fine. It must be "me" doing it to myself somehow? Well, for the first week, every time I went to sleep this would happen. I kept telling myself, that I was doing it to myself because it happened the first time and it scared me so bad, that now Im just waiting for it to happen again and causing myself to do it again out of anxiety. When I would get an attack in my sleep I would jump out of bed faster than lightening and struggle for a minute before I could catch my breath again. My husband witnessed several of my attacks, and would just shake me and freak out. He wanted me to go to the Dr., but who had time when you have a colicky baby to take care of. He will always be my top priorioty.
So, after a week, I was ok. "Yep, it must of just been anxiety because it scared me the first time, that I kept doing it to myself the rest of the week". WRONG ! I continued to be tired but other than that I felt ok. Well, I went to my OB appointment when my son was 6 months old that January and suddenly my world came crashing down. My OB listened to my heart and instantly told me to go to a cardiologist ASAP. I was like "what" a cardiologist"? I dont even have a cardiologist"? So I went right away, with my 6 month old to the cardiologist he referred me to. They did an echo and I got a surprising phone call from my OB that night. He told me that I have PPCM and my heart was 26 percent. He told me that my heart is failing. Now, you can just imagine what is going through my head. I have what? Im only 25! Are you sure??? Old people get heart failure, I just had a baby, I cant die yet as I hold my baby on the phone with the doctor ! Wait, I had this weird breathing thing happen to me when my milk came in for a week? So when I told him that he told me the heart failure was trying to drown me in my sleep. He said if I was a heavy sleeper it would have killed me, because most people don't wake up.
So, I been to 4 cardiologists so far. The first one told me that my heart was in the teens when I was struggling for air in my sleep and my blood pressure is too low for medication. He told me to walk for 45 minutes 3 times a day and hope it gets better. My bp is always in the 80/60 range. I had a stress echo planned for 3 months later and my heart got up to 43 percent EF. He told me to never get pregnant again.
My 2nd cardiologist was shocked the first one, didnt over load me with medication. He told me in ten years my heard will get bad and its because I didnt have any meds. This one put me on lisinipril. WORST DRUG EVER ! He told me my heart was enlarged, but since im so tiny, that my heart is normal on the size chart and just big for my tiny frame. I took the medicine for a month before I stopped taking it. I was passing out all the time from it. If I dropped something, I would be on the floor seeing stars for 5 minutes. I simply couldnt have this happen knowing I had a child to care for all day. So, I stopped it, and the dr. got mad so I moved on to Cardio number 3.
Cardio #3- Duke Hosptial. Evaluated me and now my heart is about 50 ef. I think my son is about 2 or 3 years old now. He advised me not to have anymore children either. No meds though, due to my bp again like the first one.
Cardio #4- Duke is far and expensive. Oct 2011 I started having the attacks again and scared the living daylights out of me. "If my ef is 50 now, why in the world is this happening again"? "Is my heart taking a plumment downward suddenly" So, this Dr. is much closer to my house and he did a echo and said I have trivial leakage, but my ef is about 50/55. MY kid just turned 6. So, I dont think my ef is going up anymore, which makes me think having another baby is definelty not going to happen for us. WHY ME? I ask all the time? So, that sums up my story with PPCM. I know my baby is my true hero though, because his crying all the time in the begininng kept me awake and alive. If he was a good sleeper, I dont know if I would be here today. GOD BLESS all my PPCM sisters !
PS ) look up the gene stat3 and the hormone prolactin. They have a study in Germany that if woman are missing the gene stat3 , their heart has no protection from oxidative stress and in pregnancy your body has the highest amount of oxidative stress, and when your nursing hormone comes in, your body makes an enzyme to make up for missing stat3 and it mixes with prolactin and attacks your heart muslce. I really belive this theory. The only way to stop the prolactin is a drug called bromocryptine (used for parkinsons disease) to stop your milk production.
My Details
- Date Diagnosed: 01/01/2007
- Child: 1
- Initial EF: low 20s
- Current EF: about 50
Story By Jennifer Hart Filsinger
