Name: Shalah McDonough Location: Chelmsford, MA Diagnosis: Cardiomyopathy, January 2004, Age 21 Transplanted: July 1, 2015, Age 32 Time on Transplant List: 9 months How I Feel Today (Feb ’16): I’ve only been post-transplant for 6 months, and so far my experience has been extremely positive.
Shalah McDonough: My Road to Heart Transplant
I noticed that something wasn’t right when I was in college. I would frequent the gym and I couldn’t run as much as I used to. I would need to stop to catch my breath, sometimes feeling like I was going to black out.
During the day I often felt tired and run down—like I had the flu—and it didn’t go away. After initially diagnosing me with allergies, I soon learned my inhaler was not improving the situation. I went back for an echocardiogram and my ejection fraction was 20%. (The ejection fraction measures the amount of blood pumped from the left ventricle. A normal percentage is 55% or higher.)
At Tufts Medical Center in Boston I was diagnosed with Dilated Cardiomyopathy in January of 2004. I was 21 years old. A few months later I was heading to work and fainted due to dehydration. I was hospitalized due to my condition and it was decided to implant an ICD just in case I had arrhythmias, which was more likely due to my low ejection fraction.
In December 2007, I was living outside Washington, DC, and was being followed at Johns Hopkins. One day I went to the gym and fainted. I was then hospitalized, initially due to cardiac arrest, because my heart rate was so low they couldn’t detect it, but then determined it was dehydration. I was discharged with no additional damage to my heart and no treatment changes.
By 2012 I had moved back home and (as before) was being followed by Dr. David DeNofrio at Tufts Medical Center. They ordered an echocardiogram so they could review how my heart was functioning. My ejection fraction had decreased to 5% and they were concerned, so they increased the frequency of my clinic appointments to follow me more closely.
In July of 2014, I wasn’t feeling well but thought I was just run down. After a few days I could hardly walk and had trouble comprehending things. I was admitted to the hospital with severe heart failure. My kidney function was starting to fail and there was concern I was really declining. Somehow, I was able to fully recover.
At this point the medical team advised that I get listed for a heart transplant. I was scared and wanted to avoid it as long as possible, so they agreed to wait to have me listed for transplant since I did bounce back. In November 2014, I was admitted again for chest pain. After more testing, they determined the pressures in my heart were getting worse, and I should be listed for transplant. I agreed, went through the transplant evaluation and was put on the list as a Status 2 patient.
My husband and I had a planned trip to Denver in March 2015. Before the trip, I wasn’t feeling well and was retaining fluid even with the aid of a water pill. After being in Denver for about 24 hours, I was so weak I could barely walk, and had constant nausea with vomiting. I was admitted to University of Colorado Hospital in Denver for a week where they successfully drained many pounds of fluid and I was able to fly home.
I soon went to Tufts where they conducted further testing and sent me home on IV medication. After about a month, I started to decline again. I could walk short distances, but needed a wheelchair to comfortably get around without feeling nauseous and extreme fatigue. Since the IV medication was no longer effective, beginning May 5, 2015, I was hospitalized indefinitely. I was on two IV medications, along with a right heart catheter in my neck to monitor my heart at all times. This treatment combination landed me a Status 1A placement on the heart transplant list—the highest priority. Because I also had a favorable blood type, body size, and no antibodies (necessary criteria for making an appropriate match), the hope was I would get a heart sooner than later. If I declined further they would have no choice but to operate, and I would need an LVAD until a heart became available. I was waiting in the hospital for a little over two months, which is considered a brief wait for a heart. It felt long, however, because (unlike LVAD patients, who typically have freedom of movement) I had a catheter in my neck at all times and could only move a few feet from my bed. Being confined, unable to shower or use a toilet (I had a commode next to my bed) was incredibly challenging. July 1st, a team of nurses woke me, saying a heart was available. I received my transplant later that day.
In the hardest moments of your personal journey, what helped get you through?
Having support—my husband, friends and family. The nurses and nurse practitioners at Tufts MC were a huge part of my journey and I believe play a major part in the lives of many transplant patients. They are the ones that I talked to late at night when I wasn’t sure if I should go to the emergency room, the ones who physically took care of me day and night in the hospital, and cared about my emotional health. I couldn’t have done it without them.
Identifying ways that helped me relax and reduce stress and anxiety were also really important. Cooking at home and knitting in the hospital calmed me down. Writing helped me too. I started a blog when I was in the hospital waiting for a heart. The blog gave me a purpose every day and also allowed me to communicate with friends and family.
How has your life been post-transplant?
I’ve only been post-transplant for 6 months, and so far my experience has been extremely positive. The medications do take some time to adjust to, and get used to some of the side effects. I’ve been fortunate and haven’t had any major rejection or complications so far. The recovery period has been easier then I anticipated, and I’m almost back to living life as I did before. I’m able to walk my dog, walk up stairs, play with my niece and nephew, and still feel good at the end of the day. I used to get anxiety when I was talking to someone and saw a flight of stairs up ahead, knowing I couldn’t breathe, talk, and walk up stairs at the same time. After my second post-transplant clinic visit, I was talking to my husband on the way to our car and walked up the stairs like it was nothing. I didn’t even realize it until I got into the car.
How did you hear about the HeartBrothers Foundation?
I initially heard of the HeartBrothers Foundation through one of the nurses at Tufts MC. In June 2015, I received a visit from Bob Romer who explained his story and HeartBrothers’ mission. I joinedthe HeartBrothers Foundation because it is an amazing cause and I felt I could contribute by sharing my story with others. When I was younger I didn’t know any other young adults in my situation, which made it tough. I’d like to support other young adults and help them realize they are not alone.
What message would you like to share with your fellow HeartBrothers?
It is not an easy journey, but it does get easier in time. It was very difficult for me—especially when I was younger—to adjust my lifestyle, accept help, and come to terms with my condition. I wanted to do everything my friends did and live my life the way I wanted to—even when my health got in the way and I couldn’t keep up. It was hard. Really hard. I’ve learned it’s okay to be sad and angry and frustrated sometimes. I wish I sought out a counselor or someone to talk to at the start of my diagnosis, when I was very young. It is just as important to take care of yourself emotionally as it is physically.