June 16, 2009

Better Tuesdays; My Congestive Heart Failure Story

As you all know, we’ve dedicated Tuesdays to report our individual efforts on living healthier and more active lives and this Tuesday I thought I would share my story on why I wanted to get involved in the American Heart Association’s Go Red For Women: BetterU program.

My heart story starts four years ago when Daughter was born. My pregnancy with Daughter was another difficult one filled with frequent trips to labor and delivery for preterm labor issues. I had the same problem with Oldest and prayed that for Daughter’s pregnancy things would be different but they weren’t. I remember the night my water broke very well. I was six weeks and one day from my due date. She wasn’t delivered that day because the doctors wanted her to stay in the womb as long as possible. I was in the hospitals for four days before the doctors decided it was time to deliver her. She was born via c-section. When she was delivered she was rushed to the Neonatal Intensive Care Unit (NICU). I was already prepared for this so I wasn’t surprised. But what did end up happening was nothing I was prepared for.

Shorty after her delivery the doctors came to tell me that they were concerned about Daughter’s condition. Still drowsy from anesthesia, I couldn’t comprehend all what the doctors were saying. Too much time passed and I still had not seen her yet. I kept asking for her and finally, Hubby showed me a Polaroid picture taken by her doctors. The picture was not anything I was prepared for. Her head was enlarged and she was hooked up to monitors and IVs. The doctors came back in and gave us their report- possible water in the brain, enlarged organs, platelet levels- things I couldn’t even comprehend.

After three days of nothing but prayers, we finally heard the news we were waiting for, her brain scan came back clear. Still, she was not completely out of the woods yet and we had to wait to find out the cause of all her other issues. I was in a fog for days. So much so, that I didn't worry about all the water I started retaining- I was puffy everywhere. I didn’t concern myself with this but focused myself on watching the clock. I was allowed only 30 minute visits with my little baby and those visits had to be three hours apart-NICU rules.

Five days later I was sent home and I cried hysterically the entire way. I didn’t want to leave my daughter at the hospital. Her condition was improving but she was not out of the woods yet. Although born almost six weeks early, her weight was good- 6lbs, 4 oz. It was her health that was keeping her in the hospital. So we made our trips back and forth to the hospital to get our 30 minute visits. I was sent home the Wednesday before Thanksgiving and on Thanksgiving day I started running a very high fever. My doctor called in a prescription for me and even with my fever, I wanted to be driven back and forth to the hospital to get my 30 minutes in during visiting hours. At night I was miserable. Miserable that I was sent home and that I couldn’t be at the hospital with my baby. My heart felt so heavy, that the shortness of breath and chest pains I started having were attributed by me to anxiety attacks over the entire situation.

Four days after being home, I finally went to my doctor’s office at the demand of my family. I spent the night before trying to sleep while sitting in the bed at a 90 degree angle. I had to do this because laying down made it almost impossible to breathe. At the hospital, I struggled to walk from the car to my doctor's office and I had to stop several times to catch my breath. My mom was with me and I remember hanging on her arm so that I could make it. When my doctor saw me, he immediately sent me to admission. Over the four days I was home, I had retained more water that my skin looked yellow.

After I was admitted, they ran a series of test. I was told that my heart had failed and that I had congestive heart failure. I retained so much water my blood was watery so they had to give me three blood transfusions. The way it was explained to me was that my body had essentially crashed. I knew I developed preeclampsia while waiting to deliver Daughter so I wasn't surprised when my body retained the water. I was starting to lose some of the fluids so I was discharged from the hospital. But at home, I started to retain water again. My blood pressure was high from the preeclampsia, I had too much water and the result was the heart failure. ('Course there’s a little more science to it but that’s the simple version.)

I spent another seven days in the hospital and in all honesty, I was happy to be there. I was at the hospital with my daughter and nothing else mattered. We were sent home together when she was about fifteen days old. Daughter's condition had completely turned around. Even her doctors could not really explain what happened.

What had happened to me had not yet sunk in. It wasn’t until a few weeks later, when I received a pamphlet in the mail from my insurance provider entitled “Living with Heart Failure.” On the pages of this pamphlet were elderly people with canes living in assistive living, or at home with day nurses. Then I read something that changed my life, survivors of CHF normally have a life span of ten years. I called my cardiologist in a panic and started doing my research. Finally, it was sinking in. My heart had failed and I was only 28.

I was reassured that I was a special case, not your typical heart failure survivor. Because of my unique situation my outlook was strong. I was reminded to watch my sodium intake, eat healthy, eliminate stress, and exercise.

I took my doctor’s advice seriously and have commited myself to live an active and healthy lifestyle. Now, four years later, I’m in better "heart" shape than I was at 27 or even 24. When we were in Dallas for our physicals, I rocked.it.out. The doctors were impressed with my fitness level. I may not be lean or muscular but I am heart healthy and strong. My heart is still slightly enlarged and I know that I have to make this a permanent lifestyle choice for me. There are weeks and days when I don't want to do go anywhere near a gym. There are also days and weeks when my stress levels are way too high. But with three kids and work, the stress part is something I still struggle with and that's a work in progress.

What I know is that I’m committed to living a Better Me and with the BetterU program, I know that things can only get better. I've learned so much about heart disease and I am grateful for what I know now.


Justice Ny said...

Jonesie, this must have taken a lot of inner strength to write because you hardly ever talk about that period. Thanks for sharing.

Unknown said...

Wow! Kudos to you for sharing your story and good luck with the BetterU program.

Winks & Smiles,

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