Catching Up With A Double Transplant Recipient – 8 Years Later

BY KIMBERLY D. COLLINS, TIMES CONTRIBUTING WRITER

ROCHESTER, N.Y. – In January 2016, Frederick Johnson received the call of a lifetime. After years of heart issues and subsequent kidney issues, he would finally receive a new heart AND a new kidney! How has life changed since the transplants? Where is he now, and what has he been up to?

Born in Sanford, Florida in 1950 “Freddy James” as he is affectionately known, was 5 years old when his mother Elizabeth married Calvin Collins, Sr. The family later relocated to Penn Yan, NY where he graduated from Penn Yan Academy in 1969. Following graduation, Johnson completed basic training at Lackland Air Force Base in Texas before attending the United States Air Force Academy in Colorado Springs, Colorado.

It was during a physical in 1969 that he was first diagnosed with a heart murmur. “They told me that at some point in my life, I would have to have major heart surgery,” said Johnson. After being honorably discharged from the Air Force, he chose to attend Kings College in Wilkes–Barre, Pennsylvania for two years before transferring to a local college in Penn Yan for another semester. After college, he began working at the Eastman Kodak Company where he would eventually retire.

In 2009, Frederick began to have real concerns about his health which resulted in him having heart replacement surgery. Not too long after, he had a heart attack in 2011. After no change in his condition, he was transferred to Jackson Memorial Hospital for further treatment. Johnson came out of shock two weeks later but was experiencing atrophy, so he was treated and then released to a rehab center. During his 8 weeks in the rehab center, he learned to walk again.

Once he returned to his Veteran’s Affairs (VA) doctor, a Left Ventricular Assist Device (LVAD) was implanted. He was placed on the organ transplant list in February of 2013.

The LVAD brought its own set of issues. First, it ran on batteries so that was always a concern. Frederick was very weak during this time and would often suffer from fainting spells and other medical issues. In addition, his prescribed medications caused problems with his kidneys – which resulted in the need for a new kidney as well.

The call he had been waiting on finally came from Jackson Memorial at 2 AM one morning. On January 9th and 10th of 2016, Frederick Johnson received his new heart and kidney! Dr. Brossi performed the heart transplant and Dr. Chin performed the kidney transplant.

“He’s a very strong man, so one of the things that really helped me to get through the whole ordeal was that his faith never wavered,’ said his wife, Sharon Johnson. “[this situation] certainly changed my view of organ donation. After this whole ordeal, and to see the importance of that, I have become a strong advocate for it.”

Although medical professionals cannot legally disclose the donor’s identity, the doctors did reveal that both organs came from the same donor, and the person was 27 years old.

“If anybody has the opportunity to be an organ donor, they should step up. Especially in the Black community. People of color, in general, have a hard time donating organs,” said Johnson. “This transplant has been very [beneficial] to me. Without it, I wouldn’t be here,” he added. “I think organ donation is priority one. When you go to the Department of Motor Vehicles, check the box to become an organ donor because, look at me, it would really be worth it to someone in need of an organ.”

As with many major surgeries, there were a few complications. Fluid built up around his kidney which resulted in the implantation of an interventional radiology draining device, which he wore from March to August of 2016. Then, various infections required Frederick to carry an antibiotic dispensing device around the clock for 7-8 weeks.

“I admire his strength and courage for what he went through. I never really believed in organ donation until this situation happened with my brother,’ said his brother Walter.

These days, Frederick is doing very well. He and his wife Sharon relocated from South Florida to Rochester, NY in December of 2021, to be closer to their 7 grandchildren and great-grandson. They have even traveled back to Florida several times to visit with family. When he is not spending time with family, you can find him working out at the gym several days each week, or eagerly preparing for fishing season – which he absolutely loves!

The Department of Veterans Affairs (VA) has made Johnson’s medical transition seamless. They set up all of his appointments and arranged the referrals for things that they were not equipped to handle, such as his Transplant Cardiologist. “From the time I stepped in the door, they have been nothing short of amazing,” he said.

Frederick stated that perhaps the biggest adjustment, post-transplant, has been the realization that he just can’t do all the things he used to do anymore. “At 74 years old, I would probably be starting to slow down some anyway, but this is even more than that would be,” he said. Now he sits down during his morning shave and he might play golf once a year or so. Even still, he is grateful.

Now, 8 years later, Frederick is happy to report that he feels better than ever! Aside from a series of fainting spells that were a side effect of a prescribed nasal spray that he used for a few months, there have been no other issues at all. And, since he stopped using the nasal spray, there have been zero other residual effects. Johnson was excited to report that he has even lost about 23 lbs over the past 6 months or so, which is a huge bonus and benefit to further improve his health!

One of the most important parts of getting through a difficult situation is having a strong and reliable support system, and Johnson definitely has that. In addition to his wife Sharon, he has a very close friend who is a pastor whom he speaks to almost daily, along with his brothers Calvin and Walter, and his Aunt Chrissy in South Florida. Each of these people play a very important role in Frederick’s life and they have been there to support him through it all.

“Fred has a strong belief in God and that must have been key to his successful recovery, as well as top-notch medical care,” said his older brother Dr. Calvin Collins, Jr., “Fred is an intelligent man, a family man, and a faithful Christian. What he has achieved with his heart and kidney transplant has been miraculous and God-oriented and directed.”

He still takes quite a few medications each day to help prevent his body from rejecting the transplanted organs and to treat high blood pressure and diabetes.

Frederick has been happily married to his beautiful wife Sharon since 1991, and they are the proud parents of 4 children: Jerold Dixon, Denise Barber, James Weldon Johnson, and Charleen Johnson; they also have seven beautiful grandchildren and one great-grandson.

“Bottom line, the doctors didn’t expect me to make it so I’m blessed to say that I have a new heart inside of me and I’m actively doing the things that I’ve always wanted to do,” Johnson says. “I appreciate that God put me in a position to receive that heart.”