ljdt04
03-30-2005, 09:17 AM
Hello,
I have been lurking for a while now and finally am looking to get more involved. I would love to talk with someone local to houston about our situation. Here is my story:
After 6 weeks on bedrest with PTL of my twin pregnancy I was taken off bedrest at 35 weeks and allowed to move around. I was starting to swell and the nurse at my nonstress test noticed pitting edema in my legs. Everyone assured the swelling was normal. But I just did not feel right as I was swollen not just in my feet but all the way up to my thighs. At my OB appointment I had gained 3 pounds in four days. She sent me for a veinous doppler on my legs to check for a clot, and finally scheduled a c-section for 37 weeks. I went into labor at 36 weeks 6 days, one day before the scheduled day. A c-section was done and the only thing related to my heart I remember anyone noticing was that I was tachycardic (high heart rate), no high BP or anything. Recovery from the surgery went Ok except that I noticed I was still swollen and had SOB and my lungs felt tight. I have asthama so I told the nurses this and took my own inhaler meds. No one seemed overly concerned. I went home on friday with both my babies still so swollen that some people asked me if I had had the babies yet! (i was only 12 pounds lighter than when I went into the hospital but had delivered over 12 pounds in baby!) Over the next three days the symptoms worsened so much that I was sleeping in a fully vertical position and would awaken gasping for breath. My DH was taking care of the babies and would bring one to me to nurse and then take them back. He was wonderful! I thought I had contracted bronchitis in the hospital and waited to go to my PCP on monday to get some antibiotics. (in denial that it was anything worse althought I felt awful.) At this time my BP was 150/? (high) and he refused to treat me and referred me to a pulmonologist. I was mad as I did not want to be spending the first days of my babies life at doctors appt. and I was convinced I only had a bad chest cold. what any awakening I had when the pulmonologist diagnosed me with fluid in my lungs and around my heart and I heard the first mention of PPCM. A referral to a cardio. and some lasik and I went home. The next day the cardio did my first echo. EF was 35%. He was ready to put me in the hospital but took pity on me and my twins in his office nursing. Instead he sent me home with vasotec and lasik. I lost 20 pounds in a week on the lasik and vasotec. While scary for me I think some of the stories here were much worse than mine. I am still on the vasotec and notice I have a complete lack of endurance. With twins I am tired a lot but feel better each month. My babies are beautiful and the reason I take my pills everyday. Last echo in december showed an EF of 40-45%.
I would like to find a way to increase awareness of this condition as I feel if I had known about the symptoms I could have been diagnosed before going home from the hospital. If anyone has any ideas of how to do this or how to organize a fund raiser that would donate to PPCM research I would really like to hear about it.
thanks
Laurie
I have been lurking for a while now and finally am looking to get more involved. I would love to talk with someone local to houston about our situation. Here is my story:
After 6 weeks on bedrest with PTL of my twin pregnancy I was taken off bedrest at 35 weeks and allowed to move around. I was starting to swell and the nurse at my nonstress test noticed pitting edema in my legs. Everyone assured the swelling was normal. But I just did not feel right as I was swollen not just in my feet but all the way up to my thighs. At my OB appointment I had gained 3 pounds in four days. She sent me for a veinous doppler on my legs to check for a clot, and finally scheduled a c-section for 37 weeks. I went into labor at 36 weeks 6 days, one day before the scheduled day. A c-section was done and the only thing related to my heart I remember anyone noticing was that I was tachycardic (high heart rate), no high BP or anything. Recovery from the surgery went Ok except that I noticed I was still swollen and had SOB and my lungs felt tight. I have asthama so I told the nurses this and took my own inhaler meds. No one seemed overly concerned. I went home on friday with both my babies still so swollen that some people asked me if I had had the babies yet! (i was only 12 pounds lighter than when I went into the hospital but had delivered over 12 pounds in baby!) Over the next three days the symptoms worsened so much that I was sleeping in a fully vertical position and would awaken gasping for breath. My DH was taking care of the babies and would bring one to me to nurse and then take them back. He was wonderful! I thought I had contracted bronchitis in the hospital and waited to go to my PCP on monday to get some antibiotics. (in denial that it was anything worse althought I felt awful.) At this time my BP was 150/? (high) and he refused to treat me and referred me to a pulmonologist. I was mad as I did not want to be spending the first days of my babies life at doctors appt. and I was convinced I only had a bad chest cold. what any awakening I had when the pulmonologist diagnosed me with fluid in my lungs and around my heart and I heard the first mention of PPCM. A referral to a cardio. and some lasik and I went home. The next day the cardio did my first echo. EF was 35%. He was ready to put me in the hospital but took pity on me and my twins in his office nursing. Instead he sent me home with vasotec and lasik. I lost 20 pounds in a week on the lasik and vasotec. While scary for me I think some of the stories here were much worse than mine. I am still on the vasotec and notice I have a complete lack of endurance. With twins I am tired a lot but feel better each month. My babies are beautiful and the reason I take my pills everyday. Last echo in december showed an EF of 40-45%.
I would like to find a way to increase awareness of this condition as I feel if I had known about the symptoms I could have been diagnosed before going home from the hospital. If anyone has any ideas of how to do this or how to organize a fund raiser that would donate to PPCM research I would really like to hear about it.
thanks
Laurie