Julianna Baker-Ursch Story

5 min read

In May 14, 2009 I had my daughter Tessa, She was 8lbs 10 oz and my second baby. I left the hospital after 24 hrs, and 4 days later we were at Children's hospital in St.Louis, Mo becuase she was jaundice. I was feeling bloated but I thought it was just after a pregnancy, and i figured I was feeling normal, because honestly i didn't remember how i felt after my son, because I was a teenage mom (19) doing it all on my own, and I was back to work then after 3 weeks...With Tessa I was hoping to go back in July (I worked in a school) to start summer school, hoping that would give me just enough time to heal and get better. Well I went to the hospital June 22, 2009 at a local hosptial, I told them I thought I had pnemonia because I couldn't breath right. They sent me through their "fast track" ER, and gave me a perscription for Benadryl and sent me home. Couple weeks went by and I wasn't feeling better I was sleeping wtih about 3 pillows, one was a cushion was a back cushion from the couch (very very thick), I still couldn't sleep well. I went to Anderson Hospital, in Maryville, IL on the night of July 6th, 2009.Was given a Xray and immidately the Dr. came in and said you have an enlarged heart your being admitted. I remember laying there, scared, and very blurred cause i didn't feel very well. I didn't know what was going on, I remember next to me a motorcycle accident had come in and on the other side of the curtain was a lady who came from Londan to meet her boy friend for the first time, she had only been here for a few days, and they swirved to miss a deer and crashed the motorcycle. It was what kept me calm , listening in on her story, and what happened to them. I didn't have my cell phone, to call my husband who was waiting outside in the car with my 1 month old and 2 yr old. I asked a nurse if she'd go tell him to go home, instead she handed me a phone to call him. I told him to go home, sleep and I will see him tomorrow, I was being admitted. I didn't tell him all the details that the time. I was taken up to the cardiac floor, and put in a room all alone at the end of the hall. (they didn't believe I would make it thru the night). In the morning I remember seeing a female cardiologist and my mom was there as soon as i woke up. They explained to my mom what was wrong, and that I had PPCM. My mom was soo confused, she couldn't understand how her 22 yr old daughter could have heart problems. I was at Anderson Hospital for almost 2 weeks, they told me my liver was failing my kidneys were failing as well. They didn't want to give me any meds because my liver couldn't handle it, but not giving me meds was hurting me more, and I was getting worse. There was one day, my mom and my husband were there in my room talking to me and I remember telling my mom to get the nurse, my chest felt like I had a knife STABBING into my heart. They gave me a pill under my tongue, and I remember them holding me up and I looked down at my husband (boyfriend at the time) and mom and they were crying histerically. I also remember one day being there and my hair was long at the time, and i hadn't been able to get up and move and my hair was a rats nest, I only took 1 shower in the 2 weeks I was there because for the first one and half week I couldn't stand without falling over. I got a ton of tests done while there for them to figure out why I got this, I was their guinea pig. One test , I had to get IV dyes in me, and I remember them having me sit up and then lay down on this very very flat bed to on in to the scanner, and they put the dyes in and next thing I know the Dr is smacking me telling me to stay with them, get a crash cart, and getting on the elevator. I remember getting to ICU, and they were unable to get an IV in me, and they were going to do a IV in my neck. All through this my mom and husband were waiting in my room for me to come back, and hour later they were told I was in ICU, and to come with her and bring all my stuff. At that point my mom wanted me moved to Barnes Jewish Hosptial in St. Louis, where my dad was when he was sick (he had CHF also, cardiomyopathy also). So with in hours I was getting prepped to be taken to Barnes. I flew in a helpicopter for the first time ever. As soon as I was at Barnes, I was taken care of and with in 4 days, they had me up and moving and walking and my heart Ef% was up to about 25%. I was discharged and had take Coreg, lisinapril, asprin. Only until this past Jan. 2012 did they see any more improvement in my heart it was at 30%. After so many years I hoped for more, but I will take any little things. In Jan. 2010, I received a Pacemaker/Defibulizer. have to go back ever 7 years to get my battery changed. It is right now only a "just in case" because my doctor was worried about cardiac arrest while I'm sleeping and I not wake up for it. So Dr. Gregory A. Ewald has saved my life, Jonas Cooper was my surgeon that implanted the device, these Doctors have helped me so much. They gave my kids back their mom. I haven't been myself, and my daughter will never know me not sick, but I am pushing myself to go futher, and to do more and more. I know my limits but I hate just sitting around waiting for death. I did go thru times when I would wake up (really i was dreaming) and I was dead everyone around me was crying. It was scary. But I have slowly come past all those thoughts of dying, yes it is coming for everyone but i'm going to live every day to the fullest.

I have also been in studies at the Hosptial that have to do with CHF, anything I can do to help with the research of my heart, I'm all for it, there was one study done that showed a diatabic drug showed in Canada to improve EF%. I would get a shot in my tummy for 13 weeks, and honestly I felt better while getting it. (Well i'm not sure if it was the drug or placebo but either way, i felt better after I had it).

I am soon due for a new echo done,and i'm hoping that I will show improvement./category/lifestyle/

"What doesn't kill us is making us stronger. Were gonna last longer"

My Details

  • Date Diagnosed: 07/07/2009
  • Child: 2
  • Initial EF: 15%
  • Current EF: 25-30%

Story By Julianna Baker-Ursch

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