Road to Recovery Following a Heart Transplant

I was 25 years old and supposed to be in the prime of my life – the years where you can stay up all night long and keep going! Instead, I slept 15+ hours a day and had trouble with simple tasks, like walking up a flight of stairs or carrying groceries in from the car. I worked a full-time job but could rarely make it through a full 40-hour week.

My employers were very understanding and supportive of my situation: I had been in heart failure for almost a year, and I’d been on the heart transplant list for over 8 months. The wait was so much shorter than it is for some but, it seemed like a lifetime to me.

On January 14, 2000, I called in sick to work, feeling very dizzy and nauseous.  My cell phone rang at around 8 a.m.; it was my transplant coordinator, Kathy.  She asked me if I was doing ok, and I told her I felt a bit sick. She said they would check me out when I got there because there was potential donor; I needed to be at the Fargo Jet Center in an hour! So, I started to pack – it turns out lots of underwear and socks are what you pack for a heart transplant! 

When we got to the jet center, we were greeted by a group of pilots and nurses. We boarded the airplane, and I was hooked up to the typical heart monitors. The team was shocked at how strong I still was. It was a fast 38-minute jet ride to Rochester Airport – zoom!  

Once at the hospital, the team prepared me for surgery and Kathy discussed with my family and me what to expect the next couple days. She then left me with a bottle of betadine and told me to take a shower and wash head to toe! I was orange now, and it was time to go.

Post-surgery, my first memory waking up in the intensive care unit (ICU) and feeling like I was pounding off the bed. THUMP! THUMP! THUMP! My new heart was strong, and the feeling of it inside me was amazing, yet unnerving.

My mom and one of my doctors were there, the doctor said, “Hi Angie, you look good!” I knew I didn’t look good, but they could see color in my skin, something I hadn’t had for a long time. The doctor asked me how I felt. But, I was still intubated at this time, so I couldn’t talk. I pointed to my mouth then out, like “get this tube out of my throat.” He turned to my mom and said, “she must feel pretty good; she’s already getting bossy!”

The next few days were long and uncomfortable. Some of the medications made me feel nauseous and made my head foggy. A strong healthy heart was something I’d never had. I was in awe of having warm fingers and toes.  

“I was in awe of having warm fingers and toes.”

Lots of people were in and out all day…doctors, nurses, family and friends. My immune system was being knocked down to nearly nothing by very serious immunosuppressants to prevent my body from rejecting my new heart. I was in isolation; everyone who came and went from my room was required to do a full scrub and be in a gown, booties and mask to prevent bringing anything into my room that could make me sick. I was in the ICU for three days.

I was told if I could be up and moving, I could move to the “step-down” ICU. I like goals, and this seemed like a challenge. So, I made myself get strong and get up, doing as much as I could. Walking soon was no problem, despite the tubes I had to have tagging along. On day three I was put into the step-down ICU. 

Nights were sometimes hard; I couldn’t get comfortable as I still had 3 tubes in my chest. Mostly, I had to sleep on my back. Even if I could get to my side, it put a lot of pressure on my newly split open sternum and was not very comfortable. I was having problems with nausea. I knew I needed to be strong but at times I felt so weak.

By day six, I was able to do most things on my own. I started to let them know that I was ready to be released. Still having troubles with nausea, my doctors told me if I could keep my food down the entire day, they would consider releasing me on day seven. If I couldn’t keep food down, then I couldn’t keep my medications down, so this was the only way I would be released. On day seven, I left St Mary’s hospital. Challenge accomplished. 

“Challenge accomplished.”

Although I left the hospital, I did not leave Rochester. The protocol is to stay within a 50-mile radius of the clinic for 3 months following a heart transplant. While thrilled to be out of the hospital, I had some anxiety about being on my own – no monitors and no doctor or nurse down the hall to help if something went wrong. I was not able to lift anything over 5 pounds and was still very sore and uncomfortable.  

I woke up every day at 6:30, and we drove to the hospital for bloodwork. Then, we returned to the apartment and had something small to eat with my fist full of medications. I then checked my blood pressure and recorded all of these things in a diary for the doctors if they needed it. Every Friday, I went for a biopsy. They’d go in through the jugular vein in my neck, down into my heart and snip a microscopic piece to test for rejection. Results would determine medication changes, which there were a lot of.  

I went to cardiac rehab once, and they thought I might be better off to do my own rehab at the Rochester Recreational Center since I was quite strong. My mom talked with the Recreational Center, and they were happy to give me a free membership while I was there. So, I bought my very first heart rate monitor and started walking on the treadmill. I was up to walking for an hour within the first couple weeks.  Most days, I walked the paths at the park nearby with my dogs. I didn’t spend much time in public; but when I did, I had to wear a mask, and especially when I was at the clinic or hospital. I was still more immunosuppressed then than I am now, and I had to be very careful. By the end of February and into March, it was getting nice out and I was getting antsy to be doing…well… anything! So, we spent the days exploring the parks around Rochester.  

I felt good.  I felt strong.  I was going to get through this.   

April came, and I was still having rejection. Rejection was very scary to me; it’s something I can’t control. I can stay fit and active, take my medications properly, but I can’t do anything to stop rejection. I started to worry that I’d never stop rejecting, and that eventually my own immune system would destroy my new heart. Every time my biopsy came back showing rejection, I had to go in for IV meds and/or take more prednisone. Take note, I hate prednisone! Then, finally just before my 3-month mark the doctor changed one of my immunosuppressants, and my next biopsy was CLEAR! This was the last biopsy before I got to go home. What a blessing to be able to go home without the ugly issue of rejection hanging over my head. I was back home in Fargo by the end of April. 

On June 2, 2000, just under 6 months post-transplant, I rode my horse in a 25-mile trail ride, and the rest is history. Well, just kidding, living life with a new heart doesn’t end once you have recovered from surgery and go home. Juggling medications and staying up-to-date with check-ups is like a part time job. It isn’t easy, but nothing that’s good is.

I’ve ridden my horse 100 miles in one day on the Western States Trail from Truckee to Auburn CA. I’ve completed four half marathons, biked 170 miles across Colorado and Utah; 109 miles in one day on the Mickelson Trail in the Black Hills of South Dakota. I’ve done countless other hikes, bike rides and horseback rides, spent days with family, made friends I would never have had and seen things I never would have seen.

Everything I do and everything I am is because I was given life by someone and by a family who didn’t even know me. The feeling of knowing I have a second chance at life because of another person’s generosity is overwhelming and I will never be able to put it into words. I want to live my life to the fullest and be someone they could be proud of.