Jenni Valk

 Peripartum Cardiomyopathy Support Network

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My name is Jenni and I was diagnosed (well sort of) with PPCM in Sept. 2004. I want to start at the beginning as I wonder if my labor contributed to the PPCM. My story is as follows:

After 9 months of trying, 3 rounds of Clomid and 1 month of Glucophage my DH and I found out we were expecting our first baby. I had a wonderful 9 month pregnancy. Everything went perfect...that is until I hit my due date. At 40Weeks +3 days (a Tuesday) My Dr. attp. found that my blood pressure had sky rocketed. They determined that I was in the early stages of Preeclampsia. I was put on bedrest and an induction date was set for a few days later.

On Friday afternoon we went to the hospital to be induced. They broke my water at 2:00 and by 2:30 the contractions had started. Being Preeclamptic required that I spend most of the labor in bed. Around 5:00 I asked for my first shot of meds. I don't remember what it was, but it just "took the edge off." I was progressing find and by about 8:00 I was ready for an epidural. They gave it to me, but it wore off in my one hip. So, they gave me another, and then a third one. At one point they had to remove it and try again. At the same time they kept pumping additional fluids into me. Somewhere in there I started to develop a cough. My OB was only slightly concerned, but did make a mental note of it. Once I got that first epi., I failed to progress. Eventually, around 2:00am my OB said they would have to do a C-section. So, again, they gave me more of the epi. Off to surgery we went. At 3:10am my beautiful 9lb. 15oz. baby girl Katie was born. She was a big baby and was also facing the wrong way I guess.

We stayed in the hospital for 3.5 days. I was feeling pretty good, but I was really swollen and my blood pressure just wouldn't come down. By Tues. I was ready to go home. They had given me a prescription for my blood pressure. (I don't recall what it was.) That night after putting the baby to bed, I tried to go to bed as well. As I layed down, I realized there was a crackling noise every time I took a breath. I found it very difficult to go to sleep. I kept adding pillows under my head, but nothing worked. Finally I got up and told my husband that I was having trouble. The more I thought about it, the more hyped up I got. This just made it worse. My husband called the nurse on-call and she advised us to go to the ER. At this point we still didn't know that this wasn't normal c-section recovery. I felt very stupid for making a big deal about it. Even though I didn't want to, my husband insisted we go. We woke Katie up and packed her into her carseat. We were all in our PJs; after all, it was 4:30a.am.

When we got to the ER, they brought me in right away. I guess my 170/115 blood pressure had them worried! They hooked me up to so many different machines I lost count! It was very scary. My husband was wonderful taking care of our newborn. They gave me a lasiks IV and admitted me. My husband and daughter were allowed to stay with me while I was in the hospital for the next day and a half.

Sometime during that first day a technician came inn to do an Echo on my heart. My Drs. didn't really tell me much, no one really knew what was going on. In fact, I never even saw my new cardiologist. My OB was the first to think it was PPCM. My new cardiologist disagreed. After losing 20lbs. of waterweight overnight, they sent me home with prescriptions for Lasiks and Labetalol.

These meds helped for awhile, but must not have been enoubh. I ended up back in the ER 3 days later. This time, we knew we would not be returning home that night, so I grabbed my pillow. This ER visit landed me in the CICU. With more IV Lasiks, I lost another 12 lbs. of waterweight. After 24 hrs, they moved me out of the CICU and into a regular room. I finally met my new cardiologist on this visit. He still thought my heart condition was pre-existing. And still, my OB disagreed with him.

After switching my meds several times, I experienced several fluctuations in my blood pressure. They had gotten it so low, in fact that I almost passed out a few times. They were ready to release me, but I asked to stay another day. After 3 days, I finally got to go home again.

I think they finally got my meds correct. I was finally healing and getting better. My blood pressure not only was under control, but it was almost low. Week my week, my internist lowered my meds.

At 7 weeks postpartum, I had another Echo and 4 days later I met with my Cardiologist. He listened to my heart and talked to us a bit. He said my echo wasn't ready yet (Bull!) and that he would call me the next day with the results (also Bull!). The next day I waited by the phone. I waited and waited. He never called. So, the following day I waited by the phone again. I finally called his office around 3:00pm. and was told that he was not there and hadn't been the day before and wouldn't be for the rest of the week. I made a pretty big stink about it. I was not happy. It must have done the trick since he called me first thing the next morning.

My echo showed that my heart was no longer enlarged and the heart was no longer "leaking." My EF was now 40-45%. He said he was not willing to diagnose me with anything since it didn't matter any way - I still shouldn't have more kids. He also adjusted my meds and told me he would set another appt. up for me in 6 months to have another echo. That was it. I haven't heard from him since.

Fast forward three months. While out to eat one night I ran into my OB. She started asking about how I was feeling and then proceeded to tell me that she had my Echo results on her desk but had not looked at them yet. She said she would do it soon. Two days later she called. She told me basically the same thing the cardiologist did. Then she went on to say she consulted the perinatologist and they both concluded that I had PPCM. She went over the risks of additional pregnancies and said she would like a follow up Echo in a year.

Around this time I was starting to have some pains in my heart area. I wasn't sure if I was making them up or if they were real. So, I called my cardiologist office. They told the they were not interested in seeing me and that I should call my internal med dr. (Why do I stay with this cardiologist??) so I called her and they agreed to meet me that day.

She listened to my heart and then ordered a 24 hr halter monitor for me. It ended up being nothing, but it was nice to meet with her anyway. After looking at my Echo, she also concluded that I had PPCM. I asked why my cardiologist wouldn't diagnose me and she kind of laughed and said "because he doesn't really know". It was kind of apparent that she didn't think much of the cardiologist I was seeing. (Still wondering why I have kept him).

Six months came and I still hadn't heard from my cardiologist who said he would set up my 6 month appt. He specifically told me not to set it up = he said they would do it. I called them anyway. I found out that of course, he was booked for that month, but I could set something up for June. (Come to find out, he is only at the clinic for 2 days the whole month of May.)

So, here I am waiting. I have my Echo next week (June 9th, 2005) and an appt. with the cardiologist right after to get my results. We will see if he actually has them. It will be 9 months since my original diagnosis. I plan to get a second opinion from a different cardiologist-and most likely I will switch to them permanently. If it weren't for my OB and Internal Med. Dr. I would be crazy by now. They have been great! I hope to find a Cardio that I like as well.

Well, that's it! Now I wait. I hope everything is back to normal next week!