Barbara and Terry: Our Living Kidney Donor Story
Terry:
My name is Terence Carney. I live in Belchertown with my wife Lynn. We have two grown children and six beautiful grandchildren. One year ago, I received a new kidney which has been a new lease on life for me.
The Need and the Wait for a Kidney
My story starts in August of 2019. While vacationing with my family at the Jersey Shore, I unexpectedly suffered kidney failure. I was having trouble breathing while walking back from the beach each day, and after much in-house discussion I agreed to call an ambulance. After being admitted, I will never forget the feeling of having a doctor say that my kidneys had failed, and he wanted to start dialysis as soon as I was stabilized. I was so shocked that this could possibly be happening to me.
Being on dialysis is a very difficult way to live. Three times a week for four hours you are in a chair in a row with about 15 other patients. The general gist is the techs hook you up to a machine which removes your blood, cleans it, removes excess fluids, and then returns the balance back into your body. I find the side effects of receiving dialysis during and after nearly impossible to relive.
Once my kidney failed, my life changed. I was a cook at UMass but had to take an early retirement. My wife Lynn also left work to support me. I used to enjoy fishing and hiking ad quality time with my grandchildren. Dialysis and the maintenance of my health became my full-time job along with my wife’s.
When I first went on dialysis, I had hope to get a new kidney. A few friends and acquaintances attempted to donate but were not possible candidates medically. As the wait time grew, I was getting desperate to find some hope for a future quality of life.
About that time my family thought that we should go public with my need for a new kidney. Being a person who keeps his cards close, my wife and kids needed to do a lot of persuading. Finally, we went public with a post on Facebook. While I had limited Facebook friends, of which most already knew of my need for a kidney, they had many Facebook friends. Through multiple people sharing my post, we were able to reach thousands of people who never would have known my story or the need for kidney donors.
A Living Kidney Donor and Hope for a Match
Barbara:
It started at morning mass at our local church. I was praying that God would cure my husband’s rheumatoid arthritis, which was progressing rapidly. I looked across the aisle and saw a woman from our community, deep in prayer as well. I had heard a couple years earlier that her husband was on dialysis and was hoping to get a kidney transplant. I wondered if he had gotten one yet – or if she was praying, as I was, for a cure for her husband.
I heard a voice in my head say, “Give him a kidney.” So, I said, “Okay.” And started thinking about it a lot – trying to figure out where to start.
First, I had to find out if he still needed one. Secondly, I had to get my husband on board, which I figured would not be an easy task. We really didn’t know these people that well, and donating a kidney probably came with some health risks. I have a protective husband and assumed it would be a tough sell.
I mentioned the idea to my husband, who sat there for a minute, looking serious, and then said it was a brave thing to do, and that he would support my decision.
So, I friended the wife, Lynn, on Facebook, and sent her a message asking how her husband Terry was doing, and if he still needed a kidney. She replied, “He does still need a kidney. It’s been 2 ½ years on dialysis, which keeps him alive but is grueling. Your prayers would be appreciated.”
I responded: “God’s been telling me to offer a kidney to him, and I’m happy to do so. I have a feeling I’d be a match. If you’re both okay with it, point me in the right direction for the next step.”
Terry:
I was in shock when I found out. From there, we got our testing done and everything was a match. The operation at Baystate Medical Center was a go.
Meet Sidney, Your New Kidney
Barbara:
After each meeting, lab test, scan or X-ray, I updated Lynn and she expressed their hopefulness, but always with a touch of hesitation. They had been disappointed 15 times, as 15 other individuals tried to qualify for donation and weren't a viable candidate. Here I was, a 70-year-old woman. But week by week, hurdle by hurdle, we kept moving forward. At the Baystate Health Living Kidney Donor Transplant Program, every meeting involved their patient advocate and social worker, who kept pointing out that I could say “no” at any time, but “no” never even entered my mind.
At the transplant center, they seemed surprised at how quickly I was moving through the process and how I passed each test. I found out later on that I was to be their oldest living kidney donor!
The committee that approves each living donor meets once a month, which just so happened to be the day after my final radiology report. Surgeries are only done on the second and fourth Wednesdays, but March had five Wednesdays. It lined up perfectly! Our surgeries were scheduled for just two weeks after approval - and just seven weeks after my first appointment with the transplant team!
The morning of surgery at Baystate Medical Center, my husband and I, and the recipient and his wife, all met in the registration area. I knew my surgery would begin before his, so I had written a story entitled “Introducing Sidney, your new kidney” (naming the kidney Sidney), to give them something to do during their wait. I also hoped it would make them feel a bit more comfortable about his new organ – like it was becoming a new member of their family! It worked!
Terry:
On the day of surgery, Barbara, my thoughtful donor, gave me a manual "Introducing Sidney, your new kidney." The booklet told of Sidney’s birthplace and date, cities and towns lived in, work experience, reason for leaving current employment, likes and dislikes, and travel experiences. Based on this manual, I can now tell people that part of me has been to Alaska!
Barbara:
Throughout the process, I was told often about post-op and recovery, and figured I would breeze through that, too. The one-night hospital stay turned into three nights, and recovery took four weeks (I was quite certain I would do it in two!), but never did I second-guess my decision to donate. Four weeks out of my life meant another twenty years (hopefully more!) for the recipient. The nurses and techs in the transplant unit at Baystate are as friendly and wonderful as the transplant team, making the entire experience almost enjoyable. I was moved to tears when it was time to leave as they lined the hallway and applauded my donation.
Terry:
The surgery went well and as soon as my new kidney was placed in me, it started to work. What an incredible miracle! I do have to admit that for the first three months I felt sick—nauseous, cold, weak, shaky with no appetite—as I adapted to the new drugs and the more thorough work a healthy kidney does. The transplant team kept telling me it would get better, and I was doing good. They were right. I began to get better weekly. Today I am feeling great! All my tests look good, and the doctor says I am doing well.
After six months I took the 37-mile challenge sponsored by the American Kidney Fund. I walked over 40 miles that month and raised over $1,600 for the fund. After that I decided to keep walking. I now average about 60 miles a month and have lost over 40 pounds.
Barbara:
Lynn recently sent me a video of Terry, floating in a tube in the swimming pool. His grandchildren were making huge waves, and he was bobbing up and down, all of them laughing wildly. Her comment below the video was simply, “You made this possible.” Me? I still try to walk 10,000 steps a day, and, over the summer, I took up pickleball. I am as active as ever, life is good, and one kidney is definitely enough for me!
Whenever I share my story, people are amazed. My hope is that, down the road, one of them will also say “yes” to becoming a living organ donor. The need is great, but the reward is even greater.
Terry:
I can’t begin to tell you how grateful I am for Barbara, my donor. I am humbled by all the support I have received from family and friends. The transplant team at Baystate Medical Center has been amazing and so supportive. I would like to help get the word out about how important it is to be a donor. You truly have the ability to save a life, and what could be more amazing and rewarding than that!
Please consider donating.
Sincerely and gratefully,
Terry Carney
If you or someone you know is in need of a kidney transplant, consider living kidney donation. Our living kidney donor champion program can help you share your story to try to find a match.