Help Heal Preston's Heart
Donation protected
I’d like to tell you about my husband. Preston is one of the kindest and most selfless people I’ve ever met. Obviously I would think that, I married him after all. I’m not telling you that to brag though. While I love that quality about him, he’s been known to be kind to a fault, sometimes causing himself a lot of grief to save someone else a little bit of trouble. His big heart is both his greatest asset and his biggest problem. He’s so kind that he would never think of asking for anything that might cause someone else an inconvenience, and he wouldn’t even know what help to ask for if it did cross his mind. It took months and offers from multiple people to convince him to allow a GoFundMe to be set up for him. Even after I pointed out that help would be entirely voluntary, he didn’t want to inconvenience a friend that would have to manage it for him.
He is also incredibly determined. One of Preston’s mottos in life is “I don’t need easy, I just need possible.” That’s a great attitude, especially considering everything he’s been through. Many people know Preston has a heart problem, but most don’t realize just how profound of an issue it is because he doesn’t want to bother others with it. He’s been in congenital congestive heart failure his entire life, his heart can neither squeeze nor relax to its full potential. It has never functioned at more than half of the capacity of an average heart, and is currently working about 20%, as long as medication is constantly pumped directly into it. Preston was born with the top half of his heart backwards and two holes in his heart, as well as part of the bottom of his heart being way too small for him. He later developed multiple kinds of rhythm problems, so his heart can’t keep a steady beat any more. Because of this, Preston has had to be cardioverted, or shocked out of bad rhythms dozens of times. He’s had five open heart surgeries, seven pacemakers, massive amounts of invasive testing, and every step taken so far has been to try and avoid transplant for as long as possible.
In the past, Preston’s heart could be helped, although not fixed, by surgical intervention. This was a better option than transplant because the average lifespan of a recipient is only now up to about twelve years, and Preston is very young compared to most recipients. Furthermore, it is not a cure, it is trading one set of medical issues for another, albeit potentially much more stable set. Because of scarring, further degradation, infection, and the effects of medications over a long period there isn’t any more of his original heart that can be repaired. Heart failure causes damage to other organs as well, due to lack of blood flow and medication reactions. For over a year it’s been a balancing act to keep his kidneys happy and still properly treat his heart. Now his liver and spleen have also begun to show signs of damage. Transplant has become his last and best option for a “fix”. The good news is that once he has his transplant, they will have completely removed everything that has caused him problems his entire life, and if he has it soon enough his other organs will still heal. There is a possibility that once he recovers, he will be healthier than he has ever been.
Preston has known about needing a transplant his entire life, and has worked to be in the best situation possible when that time comes. If you take his heart out of the equation, he’s healthier than most people, and keeps a better diet. His family has prepared him as well by making sure his basic living needs will always be met, that he has adequate insurance, and putting aside funds to help with costs of doctors and medications after transplant that insurance won’t cover. He’s researched the process of heart transplant and knows what to expect. We’ve also talked to previous recipients, doctors, and therapists about the physical and mental load we will both be taking on. All that preparation means that he is as ready as anyone can be for something as big as a heart transplant. Now all we can do is wait. He could get an offer for a heart today or not at all before his fails completely.
There’s a lot about being sick that people don’t realize when it comes to extra costs. There are the insured costs, premiums, and deductibles, sure. There are also so many other little nickel and dime things that nobody thinks about. We’ve had to go to Tennessee at least once a month for the last three months for medical testing so that he can potentially be listed with them as well, increasing his odds. He has appointments at least once a week in Indianapolis. We’ve travelled for tests and procedures on lots of occasions. There’s gas, meals if we’re gone all day (which is compounded by dietary restrictions), parking garages, hotels, toll bridges, and on and on. There are passive costs as well, being on the phone for hours with insurance and spending whole days and sometimes weeks at hospitals means he can’t work. Even trying to do normal things include extra expense; he sleeps in a hospital bed at home, taking care of the lawn, car, or house maintenance is handled by a professional and billed to us because he can’t be in the heat or do that much labor, and he will pay extra to park closer or valet the car if he wants to go out because he can’t walk to further free parking.
Cost doesn’t just refer to monetary resources either. Managing his health care is time consuming. He’s only capable of travelling so far from his care facility because he has to be able to arrive within a certain amount of time when a heart becomes available. Within that radius there are places he can’t go because there’s a chance of his heart acting up and not being able to get treatment fast enough. Few hospitals are equipped for and knowledgeable about his level of complication. Preston must always be with someone or have reliable cell signal, which infringes on his sense of independence. When we make plans that span an entire day, we much accommodate for things like keeping medicine cold and taking a nap if necessary. He has so little energy to spend each day, we must always carefully budget that against things that need to be done and what he wants to do. Often plans get completely scrapped at the last moment because he is too tired, not feeling well, or someone else is sick and he can’t risk exposure.
Preston lives his life keenly aware that his clock is ticking. Even after transplant, he has a shortened life expectancy. While medicine can go a long way in a few years, and we don’t know what will happen by the time a new heart wears out, we can’t count on those hopes. One thing that the doctors keep telling him is that it's important for him to live as much of his life as he can while he can. His life has always been a battle of quality versus quantity, and Preston’s errs on the side of quality. His mental as well as physical health rely on him having goals and continuing to move forward. He most wants to do that by spending time with friends and among nature, or to just get out of the house on a trip that doesn’t include a medical purpose. He relishes new experiences and wants to spend as much time as possible learning and exploring.
Living with a disability means learning how to do things for yourself. It means figuring things out under less than ideal circumstances and working with what you’ve got to the best of your ability. He has always found a way forward, this will be no different. It is possible, it's just difficult right now. It will get more difficult leading up to and for a while after transplant. Because he’s so kind and determined, and because it is possible to do this on his own and have it be good enough, it's hard for him to ask for help and/or accept it. The shortcoming in his life motto it that he’s come to think of possible as adequate, and asking for help to make it easier when it isn’t an absolute need feels like taking advantage of relationships to him. He will get through this, and he will manage to continue to live life in the meantime. If you want to make it easier for him to do that, there’s a lot you could do.
Any monetary help will go to the various things mentioned above, as well as other unforeseen expenses associated with medical testing and travel. Even if you can’t help donate, there are a lot of important ways you can make a big impact on his well being through this process. For starters, you can share this page far and wide, and a few times. One friend had the great idea to look around for loyalty perk points others weren’t using for a hotel stay. Someone else told me about a free one day museum pass you can sign up for in Nashville so we have something to do down there with our free time. We’ve received information on park passes so we have a cheap way to get away for awhile for our sanity. If you have ideas or access to things like this, we are all for thinking outside the box.
For those who know Preston personally, make a point to socialize with him regularly. This could be in person by visiting in small groups or meeting up for a while when we happen to be in town, or by messages, phone, or posts on his wall. There’s no requirement to talk about anything medical, in fact he would likely enjoy a break from it. Long distance communication will be especially important while he is quarantined after transplant. It doesn’t seem like its really help to just talk or check in, but consistent social contact has a statistically significant effect on recovery. Happier patients are more compliant, better at remembering medication, and work harder at recovery. If you’d rather be “doing something” to help there are a lot of small jobs around here he would like to get done but can’t do himself. Make plans to come hang out with him and help out with those things, it kills two birds with one stone. There will also be follow up appointments he won’t be able to drive to or from because of anesthesia, so helping him with a ride if you’re available would be very useful.
We most often get asked if people can bring or send us food and snacks. This is great in principle whether he’s in the hospital or not. The problem lies in his dietary restrictions. Right now he’s on a low salt diet, which is pretty easy to manage. After transplant there will be a lot more restrictions, though. If this is something you want to do, just reach out to us before hand and we can give you recipes for things he’s been approved to have or ideas for snacks he likes.
Preston also made the valid point that a good way to help him is to help me. Being a caretaker is an admittedly difficult thing, and it is full time. Several suggestions have been made. Make arrangements to spend time with me away from Preston. This will matter a lot after transplant, and will be a complicated thing to do, since it would have to be short periods and someone would need to stay with him as well. Even time before transplant will help though, it will be easier to endure the cabin fever if I spent a few weekends away before hand. Other things that might help would be small games, fidget toys, puzzles, activity books, and pretty much anything compact that could be used to fill time waiting around. He recommended getting gift cards for places to eat near the hospital so that I am forced to eat something other than one of four cafeteria meals and take longer breaks.
He is also incredibly determined. One of Preston’s mottos in life is “I don’t need easy, I just need possible.” That’s a great attitude, especially considering everything he’s been through. Many people know Preston has a heart problem, but most don’t realize just how profound of an issue it is because he doesn’t want to bother others with it. He’s been in congenital congestive heart failure his entire life, his heart can neither squeeze nor relax to its full potential. It has never functioned at more than half of the capacity of an average heart, and is currently working about 20%, as long as medication is constantly pumped directly into it. Preston was born with the top half of his heart backwards and two holes in his heart, as well as part of the bottom of his heart being way too small for him. He later developed multiple kinds of rhythm problems, so his heart can’t keep a steady beat any more. Because of this, Preston has had to be cardioverted, or shocked out of bad rhythms dozens of times. He’s had five open heart surgeries, seven pacemakers, massive amounts of invasive testing, and every step taken so far has been to try and avoid transplant for as long as possible.
In the past, Preston’s heart could be helped, although not fixed, by surgical intervention. This was a better option than transplant because the average lifespan of a recipient is only now up to about twelve years, and Preston is very young compared to most recipients. Furthermore, it is not a cure, it is trading one set of medical issues for another, albeit potentially much more stable set. Because of scarring, further degradation, infection, and the effects of medications over a long period there isn’t any more of his original heart that can be repaired. Heart failure causes damage to other organs as well, due to lack of blood flow and medication reactions. For over a year it’s been a balancing act to keep his kidneys happy and still properly treat his heart. Now his liver and spleen have also begun to show signs of damage. Transplant has become his last and best option for a “fix”. The good news is that once he has his transplant, they will have completely removed everything that has caused him problems his entire life, and if he has it soon enough his other organs will still heal. There is a possibility that once he recovers, he will be healthier than he has ever been.
Preston has known about needing a transplant his entire life, and has worked to be in the best situation possible when that time comes. If you take his heart out of the equation, he’s healthier than most people, and keeps a better diet. His family has prepared him as well by making sure his basic living needs will always be met, that he has adequate insurance, and putting aside funds to help with costs of doctors and medications after transplant that insurance won’t cover. He’s researched the process of heart transplant and knows what to expect. We’ve also talked to previous recipients, doctors, and therapists about the physical and mental load we will both be taking on. All that preparation means that he is as ready as anyone can be for something as big as a heart transplant. Now all we can do is wait. He could get an offer for a heart today or not at all before his fails completely.
There’s a lot about being sick that people don’t realize when it comes to extra costs. There are the insured costs, premiums, and deductibles, sure. There are also so many other little nickel and dime things that nobody thinks about. We’ve had to go to Tennessee at least once a month for the last three months for medical testing so that he can potentially be listed with them as well, increasing his odds. He has appointments at least once a week in Indianapolis. We’ve travelled for tests and procedures on lots of occasions. There’s gas, meals if we’re gone all day (which is compounded by dietary restrictions), parking garages, hotels, toll bridges, and on and on. There are passive costs as well, being on the phone for hours with insurance and spending whole days and sometimes weeks at hospitals means he can’t work. Even trying to do normal things include extra expense; he sleeps in a hospital bed at home, taking care of the lawn, car, or house maintenance is handled by a professional and billed to us because he can’t be in the heat or do that much labor, and he will pay extra to park closer or valet the car if he wants to go out because he can’t walk to further free parking.
Cost doesn’t just refer to monetary resources either. Managing his health care is time consuming. He’s only capable of travelling so far from his care facility because he has to be able to arrive within a certain amount of time when a heart becomes available. Within that radius there are places he can’t go because there’s a chance of his heart acting up and not being able to get treatment fast enough. Few hospitals are equipped for and knowledgeable about his level of complication. Preston must always be with someone or have reliable cell signal, which infringes on his sense of independence. When we make plans that span an entire day, we much accommodate for things like keeping medicine cold and taking a nap if necessary. He has so little energy to spend each day, we must always carefully budget that against things that need to be done and what he wants to do. Often plans get completely scrapped at the last moment because he is too tired, not feeling well, or someone else is sick and he can’t risk exposure.
Preston lives his life keenly aware that his clock is ticking. Even after transplant, he has a shortened life expectancy. While medicine can go a long way in a few years, and we don’t know what will happen by the time a new heart wears out, we can’t count on those hopes. One thing that the doctors keep telling him is that it's important for him to live as much of his life as he can while he can. His life has always been a battle of quality versus quantity, and Preston’s errs on the side of quality. His mental as well as physical health rely on him having goals and continuing to move forward. He most wants to do that by spending time with friends and among nature, or to just get out of the house on a trip that doesn’t include a medical purpose. He relishes new experiences and wants to spend as much time as possible learning and exploring.
Living with a disability means learning how to do things for yourself. It means figuring things out under less than ideal circumstances and working with what you’ve got to the best of your ability. He has always found a way forward, this will be no different. It is possible, it's just difficult right now. It will get more difficult leading up to and for a while after transplant. Because he’s so kind and determined, and because it is possible to do this on his own and have it be good enough, it's hard for him to ask for help and/or accept it. The shortcoming in his life motto it that he’s come to think of possible as adequate, and asking for help to make it easier when it isn’t an absolute need feels like taking advantage of relationships to him. He will get through this, and he will manage to continue to live life in the meantime. If you want to make it easier for him to do that, there’s a lot you could do.
Any monetary help will go to the various things mentioned above, as well as other unforeseen expenses associated with medical testing and travel. Even if you can’t help donate, there are a lot of important ways you can make a big impact on his well being through this process. For starters, you can share this page far and wide, and a few times. One friend had the great idea to look around for loyalty perk points others weren’t using for a hotel stay. Someone else told me about a free one day museum pass you can sign up for in Nashville so we have something to do down there with our free time. We’ve received information on park passes so we have a cheap way to get away for awhile for our sanity. If you have ideas or access to things like this, we are all for thinking outside the box.
For those who know Preston personally, make a point to socialize with him regularly. This could be in person by visiting in small groups or meeting up for a while when we happen to be in town, or by messages, phone, or posts on his wall. There’s no requirement to talk about anything medical, in fact he would likely enjoy a break from it. Long distance communication will be especially important while he is quarantined after transplant. It doesn’t seem like its really help to just talk or check in, but consistent social contact has a statistically significant effect on recovery. Happier patients are more compliant, better at remembering medication, and work harder at recovery. If you’d rather be “doing something” to help there are a lot of small jobs around here he would like to get done but can’t do himself. Make plans to come hang out with him and help out with those things, it kills two birds with one stone. There will also be follow up appointments he won’t be able to drive to or from because of anesthesia, so helping him with a ride if you’re available would be very useful.
We most often get asked if people can bring or send us food and snacks. This is great in principle whether he’s in the hospital or not. The problem lies in his dietary restrictions. Right now he’s on a low salt diet, which is pretty easy to manage. After transplant there will be a lot more restrictions, though. If this is something you want to do, just reach out to us before hand and we can give you recipes for things he’s been approved to have or ideas for snacks he likes.
Preston also made the valid point that a good way to help him is to help me. Being a caretaker is an admittedly difficult thing, and it is full time. Several suggestions have been made. Make arrangements to spend time with me away from Preston. This will matter a lot after transplant, and will be a complicated thing to do, since it would have to be short periods and someone would need to stay with him as well. Even time before transplant will help though, it will be easier to endure the cabin fever if I spent a few weekends away before hand. Other things that might help would be small games, fidget toys, puzzles, activity books, and pretty much anything compact that could be used to fill time waiting around. He recommended getting gift cards for places to eat near the hospital so that I am forced to eat something other than one of four cafeteria meals and take longer breaks.
Organizer
Ty Jones
Organizer
Waldron, IN
