This can't be right..
I've put this story off for quite some time. Some things I wish I could forget. Some things are quite blurry. Until myheartsisters, I can tell my story to someone, but it never quite sunk in. It's like being a mom, you don't know what it's REALLY like until you're actually there yourself. This may be long, may be scatter brained, but hang in there. It's quite the ride.
I've always been active. When I was younger , I had a rapid heart rate on the occasion, but nothing like this.
In September 2011, my boyfriend Michael and I found out we were going to have a baby. My pregnancy seemed "normal" at the time. Looking back now, I wonder how many times I could have been diagnosed sooner. December came and we found out we were having a baby girl, Madison May Ann-Marie. (shh, we know the name is long, but it has so much meaning to us). Christmas came and went and before you know it, it's time for the baby shower and final preparations. Throughout my pregnancy, I had the "normal" pregnancy symptoms. Swelling in the feet, had a hard time catching my breath every now and then. My blood pressure was always spot on, baby's heart rate was always perfect. Madison always measured right on track, as did I though I gained 50 pounds throughout the whole process. (115 pre-pregnancy, 163 day I delivered)
On the morning of my 39 week check up, my blood pressure was too high for comfort. I was going to be induced that night. I got to the hospital around 3 AM and started IV / blood work / the usual stuff. I passed out when she stuck me for my IV (okay, so I hate needles) the delivery went fine. My doctor broke my water around 5:30 and Madison was here by 9:42. She was perfectly healthy and so was I...I thought. After family members went home for the night and they took Madison back to the nursery I passed out again. (okay, I'm just tired and my body is weak. no big)
Fast forward a little while. We get to take our precious bundle of joy home. The first few weeks home go smooth as can be for bringing home a baby. I was back into my pre-pregnancy pants within a couple of weeks. I was tired, but what new mom isn't!?
About 4 weeks PP I started to not feel good. AT ALL. I was tired ALL the time. I started gaining weight again. I had trouble breathing. By five weeks, it got worse. I had an awful pain in my stomach. I started getting sick to my stomach after i ate ANYTHING. It got to the point where I couldn't even carry my baby to the car to go somewhere. I laid around unless Madison was up. I couldn't produce the milk I needed to because I wasn't eating or drinking. I hated to hear her cry when she woke up because I couldn't get out of bed to even change my own daughter.
I thought being tired was just natural because I was a new mom. I thought I couldn't breathe because in Florida, the summers are brutally hot and humid compounded with my asthma coming back. I went to my family doctor and he gave me an inhaler. While they were taking my vitals, my blood pressure was ridiculously low. I thought the pain in my stomach was just from stress. I couldn't produce because I wasn't eating. I was going to my six week check up soon and thought I'd just bring it up then.
On June 12th, I went to see my OB/GYN. At first thought, it was my gallbladder. I was set up with an ultra sound two days later. Friday morning, the results still weren't in. I'd have to wait till Monday. Over the weekend nothing seemed to improve. In fact, it went further down hill. Everything was starting to swell and I felt so awful. Changing a diaper was strenuous work. Monday morning my doctor called me personally and said my results were negative. Come in for blood work. Loaded up the baby, called my mom, and she met me there to help out. They took my vitals and the look on the nurses face said it all. My doctor came around the corner and asked to admit me. They didn't know what it was. All they knew is that something was seriously wrong and didn't know why.
I'm sure I had every test imaginable within a few hours. By 5 PM on June 18th, I knew what was so seriously wrong. A cardiologist came in and spoke to me and everything sounded mumbled. Excuse me?! I have congestive heart failure at the age of 23 and a new baby sitting right here?! This 'EF' you speak of is 10-15%. You're drunk, doc, go home. A plan of action was discussed and we moved rooms. They started my lasix and I swear I've never peed so much in my life. Madison was sleeping in the cart next to me and Michael on the roll away bed they pulled in. Over a gallon rushed out of me that night. What's next? How can this get worse?
Tuesday I moved rooms again. They tell me Madison can no longer stay with me in the room and will have to go home because there are too many sick people. Pretty much take it easy for the day until they can figure out what to do with me. Start on this medicine, do this test, call in back up doctors.
The next few days get a little blurry in areas, but so clear in others.
Wednesday, I started the day without my daughter. The doctor came in and said they were going to try me on some medicine and hopefully I'd be out of there by the weekend. Michael was with me for lunch and stayed until he had to go to work. I started Tikosyn. Family members were coming in from other states to help with the baby and make sure we didn't need anything. We were watching some daytime talk show when I started to feel funny. A nurse from the previous day comes rushing in to see what was going on. The last thing I remember saying was, "yeah, I felt that, too. I don't know what that was all about"
Then I coded.
When I started to come around, I had no idea what happened. All I know is Mike wasn't there and 15 new faces had gathered around my bed with my doctor standing at the foot of my bed. He explained what happened. Tears started flowing and they rushed me to the SICU. On the way there, I coded again. I woke up to more people, bright lights, and machines beeping. My chest hurt and didn't fully comprehend what was going on. Then it happened over and over again. I was there. It wasn't fair. I have a brand new baby who I may never see again. I was so scared. I just wanted someone to hold my hand. Bobby, the nurse whose side job was to hold the paddles held my hand and prayed. This WASN'T the end. I'm too hard headed to give up. I have a baby to watch grow up. THIS.CAN'T.HAPPEN. I fade in and out. Finally, a sense of normalcy came. They let family come in to see me before I was taken to have a pace maker put in to insure I would make it through the night. Where did all of these people come from? How long have I been out? Pace maker was put in and time for pain drugs, short family visit, and bed time. No sleep was had that night. The cardiologist on staff had to come in to adjust the pace maker. Nurses kept coming in for this or that.
The next day the pace maker came out. More family comes in. But I still can't breathe. My lung had collapsed in the fiasco from the day before. Over the next three days, I had three chest tubes put in. I was awake for every single one of them. I kept telling the nurses and doctors I'd rather give birth 15 times in one day than do that with no medication ever again.
The talk began about whether or not to put in a defibrillator. I voted no. Two doctors voted yes. I was moved out of ICU into the heart wing and continued the bed rest. I seemed to be out of the danger zone for a while. I started physical therapy and an external defibrillator was measured and given to me for when I left the hospital. This meant I couldn't watch my own child without another adult around. what kind of new mother can't spend time with her own child unless there is adult supervision?! I was finally released from the hospital after spending two weeks in. I was ready to get home and get back to normal, whatever that meant now. I had to watch what I ate. Had to watch what I drank. Keep track of everything and go bi-weekly for coumadin checks.
A month later, I went to the Mayo Clinic to see a heart transplant specialist. I was taken off of two medications, I could return to work IF I only did light duty, I could hold my baby again and drive my own car.
Around October, my EF was up to 35-40. I could send back my defibrillator. Awesome! ..but what if I need it?! Mentally, that was tough to get through. I was still so scared of dying without my back up plan.
January, I was taken off of the rest of my medical restrictions and my EF was now up to 50/55%. They used my story as a new patient testimonial at the local hospital with ads running in all of the local papers.
As of August, my EF is "normal" and by looking at my Echo, you can't even tell I was in heart failure this time last year. My doctor has taken me off more medicine and now I'm down to 2. (8 when I was first released from the hospital)
Physically, I'm much better. Emotionally, I still have a rough time with it. Sometimes I have a hard time knowing I can only have one child. But I'm so blessed that I'm still here to watch her grow up and able to chase her around the house. I do feel much better now knowing my heart is essentially normal. I will more than likely be on these two medicines for the rest of my life, but I’ll take it! Much better than the alternative. I still have my off days where I get tired easily, can't catch my breath, or just feel off in general. But those days are very few and far between now.