Name: Allen “Monty” Scott Diagnosis (Age): 36 Transplant: Currently 1A Status on the Transplant Waiting List
Monty needs lifesaving heart and kidney transplants. He has been enduring the complications of severe end-stage congestive heart failure, and his condition continues to digress. Monty, his cardiologists, and care team at Tufts Medical Center in Boston have come to the point where a transplant is crucial to his survival. As a result of his heart failure, Monty’s kidneys have also been compromised.
After extensive medical testing, he has been placed on the active heart and kidney transplant list at Tufts MC. He has been upgraded to status 1A which allows him to be available to the next compatible donor. Monty is patiently, yet anxiously, waiting for the telephone call that will soon save his life… While he waits, he and his family wrote the following inspirational story about what they’ve learned on the road to transplant.
The Five Things We Learned While Waiting For A Transplant
“You learn to take the good, the bad and the ugly on a journey like this,” wrote Nicole, “but when you wake up the next morning, it’s a brand new day!”
1 – YOUR FAMILY CAN BE A GUIDING LIGHT WHILE YOU WAIT FOR A TRANSPLANT
Monty: My family has made this journey easier because I don’t have to experience it alone.
Nicole: We have all been actively involved since his diagnosis 10 years ago. We are a strong support system for him, and our community, church and friends have all been very supportive as well. Enjoy every moment of family time, because it is truly a gift. We are tightly knit and that’s the best part.
Marquise: We give him vitality – reason and motivation to keep moving forward. We make the journey easier for him and do things for him that he might not be able to do for himself right now. In addition to the fundraising, our family and community also raise awareness for heart disease.
No matter what challenges you encounter, try to live your life the best you can to leave a good example for your kids. Be there for your kids 110% so your kids will be there for you 110%. Life is good, and it’s about choices. The choice we make about my dad’s condition is to be there with him every step of the way. My dad and I have a great relationship based on trust, love, teaching and admiration. It is awe-inspiring. It’s a relationship I would like to photocopy and build on with my own kids one day.
Talia: Whenever we go to the hospital, we always ask questions about how to care for him. We learn about his condition and the medical equipment he needs and we try to absorb it all. You need patience in order to be a father figure for someone. He is always there for us and we can joke around with each other. He always has a bright smile, and I love him. I love the overwhelming amount of strength we have for one another as a family.
2 – THE OUT-OF-POCKET EXPENSES WILL SURPRISE YOU
Nicole: During a change in our insurance, medications were running low and running out, and we ended up paying out of pocket for some of those costs. Without the meds, Monty’s health declines quickly and his levels are off, which may require an ER visit or even a trip to Tufts to fix.
Talia: Our hospital at Tufts Medical Center in Boston is two hours away from where we live, so in addition to fundraising for things that come up unexpectedly, we also fundraise for trips back and forth to the hospital.
Monty: I realized how expensive this journey could be when my insurance was in transition and we were responsible for those additional out-of-pocket costs.
3 – STAYING POSITIVE IS POSSIBLE, BUT IT’S NOT EASY
Monty: It is a blessing to be on the list, but if your wait is long it can weigh heavily on your mind. Stay strong mentally, because you would be surprised how much your mental state can affect your health. I try to keep it all in perspective.
Nicole: When you are actively involved but you can’t do anything to fix it, you feel helpless sometimes. Organ donation can be a difficult decision for some, so there is a limited availability of organs, making the wait long. Sometimes listed patients don’t make it through the wait. It can become depressing, but there are a lot of resources out there that can help. The support system around you helps to alleviate some of the burden.
Marquise: Dealing with a chronic health condition makes your family mature faster, especially the kids. It’s painful. I never can do enough, I feel. It’s even more challenging because it is my father’s heart, the motor of his body. After an egg is fertilized it’s only about a week until that heart starts to beat. It’s scary because you don’t know when or if you are going to get a new heart, whether or not your body will reject that heart and a multitude of other serious concerns.
Talia: You get a little impatient when waiting for a heart because waiting for an organ is not like walking into a store and just buying something off the shelf. There is pain and it hurts and you want to be able to help and you can only do so much. We all deal with the challenges in a way where it doesn’t take so much of a toll on us. You have to try to distract yourself and keep thinking about the good stuff in life.
4 – RALLYING YOUR COMMUNITY CAN PROVIDE FINANCIAL AND EMOTIONAL SUPPORT
Monty: Many people have supported me, whether it be through fundraising or just words of encouragement. Parents at my daughter’s school have put together fundraisers and so have my college friends. The HeartBrothers Foundation has provided us much-needed support. Our local newspaper kindly wrote my story and it headlined in the paper the next day, drawing awareness. There are other efforts in progress as well so my community has most definitely shown an outpouring of support.
Nicole: At first, when it came to fundraising, I thought, “I don’t want to feel as though we have our hands out.” As we advanced through the process and came across the difficulties and the constant cost of the littlest things adding up, we started thinking rationally. That rational of thought is—you just cannot do this alone.
After putting your pride aside, you see the angels that God has put on Earth to help. They come in the form of family, friends, associates, neighbors and strangers. You just can’t see them when you are too proud to accept their help.
5 – TRANSPLANTS CHANGE LIVES
Monty: To me, a transplant means an opportunity to go back to normal.
Talia: A transplant means not having to say, “Wait, Dad, do you have the extra batteries!?” Also, not having to see my dad bogged down with all this equipment connected to him so he can be more mobile on his own. It’ll be a good chance and a happy one for my dad. I want to let the donor and his/her family know they are giving a gift that only they, God, and the medical teams can give. Thank you for giving my dad a second chance at life.
Nicole: After transplant there will continue to be more big changes to our lives. We will find out what our new normal will be as a family, which will be one challenge. How involved we will or will not be with the donor family might be a challenge as well. I send an entire world of thanks and gratitude to our future donor and donor family. Yours is a gift that there are no words for and thank you just doesn’t say enough. God bless you.
This story was originally written by the Scott family (Monty, Nikki, Marquise & Talia). Find it here. To reach the Scott family, call 401-418-3676. To support Monty on his journey, visit the family’s fundraising page here.