The title to my story comes from a logo on a tshirt I saw recently, and I think it fits this type of cardiomyopathy perfectly.
I had my first two children at a young age, I'm 34 and they are now 17 and 13. I had no complications with either pregnancy, other than continous nausea, and thought I was done with child bearing. Then I got divorced, eventually remarried, and we had decided to have a child together. In the course of trying, (since 2009) I had two unexplained miscarriages that ended with a d and c. I was at one point tested for all sorts of hypercoagulation disorders due to having an unexplained dvt in my left leg between the first and second miscarriages, but nothing showed up in my labs. Then last summer, after feeling for months like I was deathly sick, to the extent that I couldn't eat and could barely get out of bed to go to work, (I thought maybe I was actually depressed or something), I was found to be B12 deficient and severely anemic. All this drama had taken its toll on us and we were actually not going to try again to concieve, as between us we had three healthy kids already. Then, just as I started to feel better with the B12 injections, I found out I was pregnant, with twins!!
My pregnancy went well the first seven months and I was actually able to continue to work part time as a nurse and I even coached my son's basketball team. I was considered high risk, and was monitored by a high risk doctor monthly. Around seven months though, I started feeling like my heart was racing and I started having trouble breathing constantly, I had to prop my self almost straight up in bed to be able to rest at all. I couldn't sleep, I craved water irrationally and I was literally in the bathroom every 20 minutes, even when I didn't drink anything. These symptoms got worse every day, but of course were chalked up as normal pregnancy crap at every visit. In my last two weeks, they at one point found protein in my urine, but told me just to keep record of my bp, which I did, and at the next visit they said it was fine, no more protein. I also gained five pounds in one day and started swelling from the waist down which had never happened with my previous pregnancies. When these symptoms first began, I even went to a local cardiologist, had an echo, and even wore a monitor for two weeks and even though I was told nothing ever showed up by that cardiologist, I later found out I have a hole in my heart, a PFO, which could be the possible cause of my blood clot issues. Because of my hx of dvt I was on lovenox as a precaution all throughout my pregnancy, then I was switched to heparin a week before a scheduled c section. I was scheduled to go in May 17th, however, I went into labor very quickly, and right after my scheduled dose of heparin, on the 13th.
We went to the local hospital and because I was progressing so rapidly and still wanted the c section, I had to be put completely under and my husband was not permitted in the room. I woke up an hour later, extremely cold, but excited to meet my babies. I was told I'd had to be given a unit of blood and a unit of plasma due to the blood thinner I'd been on, which I had expected would happen. I then found out my daughter's head was nicked during delivery and she had six stitches, but otherwise everything was fine. They noticed right away my o2 sat was low but at that time I felt fine, and since I was on morphine, they let it go. The next day I started feeling short of breath again, and the swelling was worse, not getting better like it should have. They did a chest xray, said I had developed plurell effusion and that I needed to work with an incentive spirometer. lol
Next day, symptoms were worse, yet I was stubborn and working on breastfeeding, not really worried about anything. On thursday, they decided to do a ct scan. It showed a pulmonary embolism in my left lung. I was moved to the icu and put on a heparin drip. I thought at first that the clot was from having the c section. Friday morning, my stepson was dropped off at my icu room before school, my husband had brought the twins to my room to feed, and my respirations were around 60, my heartrate 126, and my stubborn ass was pissed when at the shift change, my new nurse wanted to know why I wasn't in bed and why my kids were in my room. lol Nurses make the worst patients. So my husband came back, my friend came, we ate Chipotle for lunch, even though I felt like crap, and then my nurse said the pulmonologist wanted an echo repeated since I seemed to be getting even worse. Annoyed yet again, I said thats fine. I had read and researched every single thing, or so I thought, on pregnancy complications and seriously thought the blood clot had to be the only problem. The tech that performed the echo almost ran out of my room and at that moment I felt an overwhelming sense of fear.
The nurse and Doc came back shortly and told us that I was in heart failure, that if I had went home I would be dead, that I had this peripartum cardiomyopathy and would probably need a heart transplant since my ejection fraction was so low, and that I was going to be taken by chopper to a heart hospital in Columbus immediately. I actually looked behind me because I had the crazy thought they were talking to someone else. They couldn't be talking to me, I was fine, I wasn't sick!! I was going home soon with these miracle babies and start our new life and that was that. Then it all sunk in. My husband called his parents and they came in, the nurse manager from labor and delivery came in to say she was sorry, (pssshhhh!!!) and I was given my first dose of lasix iv push. I cannot even describe my feelings or thoughts in those moments. I knew then that I was in bad shape, real bad, and that I may never see any of my children ever again and that, above everything else broke my heart. I've seen miracles happen with prayer and so I got online quickly and posted to fb for my friends and family to pray for me. Verses from my favorite Psalm, 46, ran through my head...and I prayed because I knew it was up to God what happened next. My husband was able to escort me to the helicopter and my last view was him standing there, waving goodbye. I have to say here that as soon as I left the room I was in, I started feeling better. After putting this all together in my mind, I firmly believe death was in that room and coming for me. I arrived at this specialty hospital (OSU Ross) and a team of doctors came in to examine me. Now, when I got there, they had me on npo status and bed rest however, after my initial assessment, things started to change for the better. I was on oxygen, my o2 sat low 90s, my bp and hr elevated, but I was completely coherent and able to tell them everything. I even remember flying over OSU stadium in the helicopter. They said the report they originally got on me was much worse than I actually was in person. My ejection fraction was low. How low I'm not sure, but I was told it was around 10% initially.
They told me not to focus on the number because everyone reacts differently. I believe knowledge is power so I started asking my nurse everything I could about this disease and possible outcomes for recovery. I remember I was very anxious that first night, they had given me more lasix but said they would see me in morning rounds, I questioned my nurse about everything I could think of and she told me look, if they thought you were critical, they'd be in here right now and not waiting till morning to start tx. That made me finally feel better. Overnight I googled everything I could on ppcm. I ended up in the hospital a week. On monday I had another echo, 25% EF, a heart cath, and a cardiac mri, which showed my valves were leaking, but from pressure, and since then that has stopped. They dx this condition by ruling out any other possible causes. I was told outlying small hospitals rarely see this and most doctors don't know much about it. They said they see it there at least twice a week. That leads me to believe it is a lot more common than current studies suggest.
I lost 40 some pounds in a week on iv lasix, and was sent home on coreg, lisinopril, aldactone, lasix orally, coumadin, and of course iron and b12. My nurse said people she sees who relapse are the ones who arent compliant with their meds or diet. The worst part was missing my newborns, worrying about them, my other kids, the stress of all this on my family...(my in laws and my brother and sis in law helped take care of the babies while my husband ran between work, home and the hospital), but, I knew I was lucky to have pulled through without anything worse happening. I was worried all summer about what my EF would be come August when I was scheduled for another echo. I wasn't given any definite answers about what would happen on the meds and I researched enough to know it could go either way, but I had faith God would heal my heart. My echo as of last week showed an EF of 45%. My doctor called and actually sounded surprised. lol I hope I continue to improve.
Thing is, most people don't realize the everyday effects of this, and act like I'm supposed to bounce right back like nothing happened. I'd love to do that, but its hard when I feel like a copd patient and can't breathe. If its going to be humid, I know before I get out of bed. It hasn't been easy coming to terms with all this and I still worry about the future and if later down the road this won't shorten my lifespan. I now can walk a few blocks where as at first that was impossible, but I get winded easily, have a hard time being outside when its hot, and still can't play ball with my son like we use to. There have been times when I feel so overwhelmed with everyone that I've felt like screaming what part of heart failure patient do you people not understand!!! Between having two newborns, the anemia, and the cardiac meds I am constantly exhausted. I will keep working though, I'm too bull headed to give up.
Course they told me no more pregnancies...fine by me. I also had to stop with the breast feeding but I was more worried about just being around to raise them. Looking back, I know if I had not had the PE, I would have been sent home and probably wouldn't be typing this. Anyway, I did this because I want to help spread awareness of this disease. I will be printing off the flyer and taking it to the obgyn offices in my area, as there is NO info on this at least in my doc's office. I think thats wrong!! I hope people read these stories and start to mention it to their pregnant friends, sisters, wives, everyone! Also, if you think there is something wrong, go with your own instinct, do not allow anyone to tell you differently. Get a second or third opinion because doctors are not always right!!! If not for the nurse I had that day, who knows what could have happened!!! I wouldn't wish this on my enemies...No mother should be faced with this and a simple echo done shortly before or after delivery would probably be lifesaving or at least change the course of treatment for many women!!!
My Details
- Date Diagnosed: 17/05/2013
- Child: 5
- Initial EF: below 20%
- Current EF: 45%
Story By Mary Carson
