Hi. I'm Amanda. I'm 29 years old, and I just had my first child in April. She is beautiful and healthy. I was diagnosed with ppcm the day my daughter and I were being released from the hospital. She was released, and instead I was transported to an ICU. This has been with out a doubt the most terrifying time of my life.
I was diagnosed with tachycardia at 21 years old. Outside of that I had never had any other diagnosis of any bad health, really. My pregnancy went smooth until 28 weeks. Then my blood pressure got high, and just continued to rise. I was on full bedrest, but never had any protein in my urine, so the doctor never thought I was preeclamptic. Eventually, I was very swollen. my blood pressure got high with any stimulation whatsoever, and I would get out of breath just talking. At 37 weeks I went in to labor and delivery because my blood pressure was staying in the 170s/100s. The doctor took one look at me and said we had to induce, that I had become ecclamptic. So he started me on magnesium, which was awful, and I gave birth within 7 hours. After she was born I was in love, but I kept feeling like something was wrong. I couldn't walk to the bathroom on my own. I had no energy, and I kept feeling like I couldn't get enough oxygen. At first the doctor kept assuming it was panic attacks. He would give me oxygen and an anti anxiety med. Two days later it was still happening, but worse, and my blood pressure was still high and rising. I tried to go for a walk, and barely made it back to the room. FInally, the did chest xrays, found fluid on my lungs and did an echo. My EF was 36%. I spent the night at that ICU before being transferred to a bigger hospitals ICU. My mother stayed with my baby, but brought her up to see me every day. I was absolutely heart broken, and so very very confused. Eventually, they sent me home with an EF of 40-45%. The medication and condition made me feel so weak and dizzy that I couldn't take a shower on my own. I could barely take care of my child. My amazing mother stayed with me for 4 months, helping me take care of my daughter, helping me with major panic attacks. I literally could not have gotten this far without her. My husband is also a huge help but he has to work. Now, I have vastly improved, with an EF of 55-60%, however I have several other medical things happening. I am still on medication, and still having a lot of chest pain, palpitations, huge fluctuations in blood pressure, some fluctuations in bnp,etc. My body is incredibly deconditioned after almost 4 full months of bedrest, and heart failure. ANyway, now, my daughter will be 4 months in 2 days. My mother had to go back to work in a town 2 hours away from me two weeks ago, and I am doing my best. The doctor has lowered my dose of coreg, and so I am having some high pulses and high bps, which he says is normal through the adjustment period. I can drive now, some days I can take a good 10 minute walk, though it wears me out still. I am home alone with my baby most days. The hardest part for me now is the fear. I am so scared that it is disabling. I have chest pain and palpitations, fast heart rates upon standing. My blood pressure gets fairly high then drops when I stand. My doctor knows all of this, and says that I am fine. Some days I believe that, some days I am literally a puddle in the floor, scared to death they are missing something and I am going to end up back in heart failure. Some days I am grateful that I am recovered. Some days I literally feel like I can't take another symptom... I am just literally paralyzed in fear sometimes. And more so now that we are trying to get off medications. My last bnp was a 20, now we have reduced coreg and it is up to 40. Although my EF is what it is, I have mitral, tricuspid, and ventricle regurgitation, still some left ventricle hypertrophy, and a little enlargement. I asked my doctor if this was like heart damage and he kind of skirts questions like that. I ask him if I have a prognosis, and he says good. And that I have zero restrictions, and no real monitoring from here on out. Maybe an echo in 6 months or so. I am obviously retaining fluid in arms and legs, but doctor says that I am fine, because bnp is in normal range. My blood pressure will go from 140s/80s sitting, to 110/96 standing, making me feel like I might pass out. Anyway, I know this is very rambly and unorganized. I am just scared and so unsure. On top of depression from this, ,and the idea of no more babies, which I have been told is necessary. I need some confidence and definitely a way to continue living happily despite all of this. I feel like I have been robbed of what should be the happiest time of my life. I feel like it isn't fair to my daughter, husband, mother, entire family for me to be so scared, and focused on myself so much. I just so desperatley want to be past this and living healthy and out of fear. Sorry for the incoherent rambling. I have tried to find counseling and no one near me is taking new patients, or cant get me in until months from now. I guess I am just looking for some techniques on how to get through this and enjoy my life, my family. And let them better enjoy me. Any suggestions would help greatly. Thank you for taking the time. Love, Amanda
My Details
- Date Diagnosed: 01/05/2015
- Child: 1
- Initial EF: 36
- Current EF: 55-60
Story By Amanda Croskey
