Growing up, like many born in the early days of congenital heart surgery, Pam Ensley thought she was fixed. But after a mostly normal life, including marriage and children, she learned she needed the gift of the perfect match.
I was born a “blue baby” in June 1971. Within hours of my birth at Christ Hospital in Oak Lawn, Illinois, I was transferred to Rush in Chicago, where I was diagnosed with Transposition of the Great Vessels. After having the Mustard procedure at 8 months old, I lived a normal life with yearly check-ups, and eventually just bi-yearly visits. I got married and had 2 pretty normal pregnancies, both considered high risk, both planned c-sections. Thankfully, my children Aryana (20) and Aidan (19) are both heart healthy.
Life went on this way until 2017, when I began experiencing new complications. I thought I was “fixed” since I had grown up normal and never had any issues. But I wound up needing a pacemaker due to a severely low heart rate, developed an arterial clot requiring continued blood thinners, and by 2018 I was diagnosed with heart failure.
After a lot of medication & pacemaker adjustments we were no closer to getting things under control. In December, I was told by the doctor at Rush he was thinking I may need a transplant. I was hysterical. I never in my wildest dreams thought this could be happening; I was always heart healthy and hadn’t needed intervention growing up.
At that point, I was also told I had to switch my care to Northwestern because they had a team of adult congenital doctors. My case needed the attention of someone that could start me on the process for a transplant. In January of 2019, I made an appointment to see Dr. Forbess. By now, I was so fatigued I needed a wheelchair to get the appointment. She admitted me to the hospital, and after 10 days at Northwestern, I had met my new EP, my new heart failure cardiologist, and the adult congenital team.
With more pacemaker and medication changes and IV diuretics, I was feeling pretty good. I started cardiac rehab to regain strength, and overall was doing well. But in April my symptoms started returning: fluid build up, fatigue, shortness of breath…the list went on. From then on things never got better, one change would help for a short time and then things would be bad again. In July, I was hospitalized due to fluid overload. The decision was made that they would try to put a third lead in for my pacemaker. They hoped that would synchronize my heart better to improve the heart failure.
The recovery from the surgery to add the lead was very hard, and after a short time we knew it wasn’t helping. I was in the hospital another 10 days between recovery and fluid overload. When I next saw Dr. Forbess, we talked a long while, and the end result was that I needed a transplant. My heart was not recovering, and the heart failure was getting worse. She wanted me to make an appointment with my heart failure doctors right away to discuss the process with them.
I met with Dr. Vorovich in early October, she was wonderful and explained very clearly that the time was now. My kidneys were starting to be affected by all the medications, and we didn’t want to damage them. The next step was the transplant evaluation. This was a long 12 days in the hospital with lots of testing. Afterward, I was able to come home for 10 days before being admitted to wait for a heart transplant.
On November 4th, 2019 I was admitted to Northwestern to wait for my perfect match.
November 24th I was offered a heart. I was in complete shock, thinking it was so soon. They started to prepare me with different medications, and I thought, ”wow this is real!” I was so nervous. Later the doctor came in and told me she was sorry, but when they went to retrieve the heart, it was slowing, so they turned it down. I really didn’t know how to feel, except I trusted my team and knew they made the right decision for me. It was a hard thing to wrap my head around but my mantra through my whole journey was “in God’s perfect time,” so I knew it would happen when it was right.
A week later on December 1st, at about 4:00 in the afternoon, I received a phone call from my pre-transplant coordinator asking me to accept a heart that they felt was a great match. I accepted, and surgery was set for the following evening. I wouldn’t let anyone touch anything in my room until we got close to the surgery, because I didn’t want to jinx it.
On December 3rd, 2019 I received my extraordinary gift!
My recovery was hard at times but also worth it. I was released from the hospital on December 13th. I was a little afraid to go home not having the nurses and doctors right there, but knew that I was ready. Unfortunately a week later, after a biopsy, they found I was rejecting, so I was re-hospitalized. They treated the rejection aggressively, it worked just as they thought, and I was able to go home on Christmas Day!
My strength to get through the last few years and to continue this journey comes from Bryan, Aryana, Aidan, our families, and all of our close friends. My medical team, including every single nurse, is absolutely amazing. I could not do this without them. Since the transplant I have had a few bumps in the road mostly with medication levels. All in all I am doing great. I typically walk 5-6 miles a day, I eat much better than I ever did, and I never take one minute for granted.
The greatest hero I never knew was the organ donor who saved my life!
Pam Ensley, age 49
#chdawareness #donatelife #beadonor #transplantwarrior