When it rains...
The last few months have been a trying time for our family. We've had a myriad of events, mostly medical, that have caused alarm and concern with various members of our family. In January, my father began a series of tests to qualify for a double-lung transplant. He was diagnosed with scleroderma in 2007, and over the last few years, he has developed pulmonary arterial hypertension. As a result, he needs new lungs. We were initially surprised that the doctors wanted to go ahead and start testing and get him on the list, but I'm glad they started when they did. What we thought would be 1 week of testing became 2 1/2 months of ongoing tests. These tests culminated in a committee discussion of my dad's case today. After reviewing everything, the committee deferred the decision, asking my parents to meet with the lead transplant doctor before proceeding. The testing had revealed some additional risks associated with the transplant that my parents needed to weigh. The first concern is a feeding tube. Because of the scleroderma, Dad's esophagus has become quite rigid, which leads to small bits of food and liquid being aspirated into his lungs. If he receives the transplant, this would lead to pretty immediate rejection, so he will need a feeding tube to be inserted directly into his small intestine to avoid any aspiration. It is likely that he would need the feeding tube for the rest of his life, unless the scleroderma goes into remission. The second concern is the Raynaud's syndrome. This is common in scleroderma patients and is caused by poor circulation in the feet and hands. During the surgery, the operating room is kept very cold to allow the body's cells to rest. Unfortunately, it can also cause circulation to stop, leading to the possible loss of limbs. The transplant team has operated on two patients with Raynaud's in the past. While neither of them lost limbs, they both came close. After reviewing the additional risks, the transplant doctor informed my parents that, without a transplant, my dad would be looking at a 6-12 month prognosis. After hearing that, they both decided to keep fighting, trusting in their faith, each other, and the doctors to help them avoid as many risks as possible.
The doctors on the committee support putting Dad on the list, as long as he is willing to accept the additional risks, so we anticipate him being "officially placed" on the transplant list next week. The lead doctor thinks he might be able to get the double lung transplant in 2-3 months, depending on the availability of compatible organs. It is likely that they will be doing surgery in the next few weeks for the feeding tube so it has time to heal before the transplant. As difficult and trying as the testing has been, the next 2-3 months will be pivotal as the transplant approaches.
I can't imagine everything that my father must be feeling now. Over the last few years, I've gotten to know my parents in a different way. I've always looked to them for strength and guidance, and I always will. I'm so proud to be their child. A few weeks ago, I spent some time talking with my dad about everything that was going on with both of us. I am just at the beginning of what will be a long journey for myself medically, and he's five years into a marathon of his own, so I know I can learn a lot from him. During the last five years, I've witnessed him change. He's remained the same strong man that I have known all my life, an insurmountable force with a glimmer in his eye and a love of cheesy jokes. But I've also seen a softer side emerge. The man I see now has an authentic, open honesty and compassion to him that is truly inspirational. I know he must be scared... we all are. But I also know that he's strong... much stronger than I ever imagined. We've all heard that we see the true measure of a man in the face of adversity. That couldn't be more true than with my father. These last few years, he has not only faced this adversity with dignity and honor, but with a priceless sense of humor, wit, and wisdom. He continues to inspire me every day with his determination to survive.
And my mother... For years, I've watched her hold our family together at times when I felt like the world was spinning on its head. She has been, and continues to be, a tower of strength. During these last few months, as we've had numerous family members falling ill, she has juggled the coordination of care and updates for us all, keeping us all informed and aware of how everyone is doing. And even with all the stress and turmoil, she's there for us. When I call her scared and weak, she lifts me up and encourages me to keep fighting. I don't know where she gets her strength, but it continually amazes me.
Many people have been so kind over the last few years and months, telling me how they find my positive attitude and the strength in our family to be a source of inspiration. I wish I could take credit for that, but I don't think I can. I have always been a naturally optimistic person, hoping for the best and trying to confront obstacles head-on when they come my way, but I know that doesn't just come from me. That's the culmination of a lifetime of being supported and loved - feeling the strength and faith of my parents and their optimism.
As we move into this next chapter of my Dad's treatment, I know that we will need to lean on each other for strength, and I feel so blessed that we have each other for that support. I know that I have my incredible husband Mike, my loving brother Jason and his family, and my amazing parents. Together, we can hold each other up when our own legs get shaky. I've always believed that it's the times of greatest difficulty when we should bring our loved ones closer, and I can't think of a better time to get close.
The doctors on the committee support putting Dad on the list, as long as he is willing to accept the additional risks, so we anticipate him being "officially placed" on the transplant list next week. The lead doctor thinks he might be able to get the double lung transplant in 2-3 months, depending on the availability of compatible organs. It is likely that they will be doing surgery in the next few weeks for the feeding tube so it has time to heal before the transplant. As difficult and trying as the testing has been, the next 2-3 months will be pivotal as the transplant approaches.
I can't imagine everything that my father must be feeling now. Over the last few years, I've gotten to know my parents in a different way. I've always looked to them for strength and guidance, and I always will. I'm so proud to be their child. A few weeks ago, I spent some time talking with my dad about everything that was going on with both of us. I am just at the beginning of what will be a long journey for myself medically, and he's five years into a marathon of his own, so I know I can learn a lot from him. During the last five years, I've witnessed him change. He's remained the same strong man that I have known all my life, an insurmountable force with a glimmer in his eye and a love of cheesy jokes. But I've also seen a softer side emerge. The man I see now has an authentic, open honesty and compassion to him that is truly inspirational. I know he must be scared... we all are. But I also know that he's strong... much stronger than I ever imagined. We've all heard that we see the true measure of a man in the face of adversity. That couldn't be more true than with my father. These last few years, he has not only faced this adversity with dignity and honor, but with a priceless sense of humor, wit, and wisdom. He continues to inspire me every day with his determination to survive.
And my mother... For years, I've watched her hold our family together at times when I felt like the world was spinning on its head. She has been, and continues to be, a tower of strength. During these last few months, as we've had numerous family members falling ill, she has juggled the coordination of care and updates for us all, keeping us all informed and aware of how everyone is doing. And even with all the stress and turmoil, she's there for us. When I call her scared and weak, she lifts me up and encourages me to keep fighting. I don't know where she gets her strength, but it continually amazes me.
Many people have been so kind over the last few years and months, telling me how they find my positive attitude and the strength in our family to be a source of inspiration. I wish I could take credit for that, but I don't think I can. I have always been a naturally optimistic person, hoping for the best and trying to confront obstacles head-on when they come my way, but I know that doesn't just come from me. That's the culmination of a lifetime of being supported and loved - feeling the strength and faith of my parents and their optimism.
As we move into this next chapter of my Dad's treatment, I know that we will need to lean on each other for strength, and I feel so blessed that we have each other for that support. I know that I have my incredible husband Mike, my loving brother Jason and his family, and my amazing parents. Together, we can hold each other up when our own legs get shaky. I've always believed that it's the times of greatest difficulty when we should bring our loved ones closer, and I can't think of a better time to get close.
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