Today, I went to see my doctors for a checkup. It has been four years since I was air lifted to Cleveland the first time to get a new pair of lungs. I am so deeply grateful to be alive. I think of the donors who's death gave me life every day and how much I love being on this glorious, complicated sphere of blue and green with so many amazing people. And I also think about what I've had to go through and have had to give up to get to this place in my life.
Since my first and second talks went up on TED, I've received a steady flow of letters, emails and messages from people young and old about their hopes, their fears, their dreams. For the most part, I find these communiques very encouraging and they tend to make me happy. But I am concerned by an alarming trend I see in some people who write me that have chronic illness: people write me looking for approval in dangerous decisions. For this reason, I feel like I have to clarify my message.
1. Listen to your doctors and to the best of your ability, follow their directions. It is true that when I was diagnosed with PH 9 years ago, one top specialist told me not to sing. But many, many other top doctors told me it was fine and even good for me to do it. There wasn't a single study or medical journal that corroborated the doctor's claims of singing exacerbating symptoms of Pulmonary Arterial Hypertension. Not one. When I became too sick to travel and my doctors told me to stop performing, I did so immediately because I knew they were right. It is important your doctor understands you and your hopes and your dreams. It is also important you understand how those hopes and dreams must be shaped into a new reality.
2. Gosh darnet, I know they are annoying as heck, but taking your medications is a lot less annoying than dying or getting a translpant. Seriously. There are too many people waiting for transplants for doctors to give them to patients who aren't doing their very best to keep themselves healthy now. And transplant is way to complicated to get one before it is absolutely necessary. There are SO may nights I have gone to bed, wishing I still had pulmonary hypertension instead of my transplanted lungs. Please keep whatever you have for as long as humanly possible. This means doing extra work. I did a lot of qigong, I changed my diet, I exercised every single day and I ate substantially less salt than doctors told me I could. Even now, some doctors give their patients more leeway than I give myself with medications. But the single most predictive factor in a transplant's success is patient compliance. The doctor's can't see what you're doing but your body knows. Your kidney's are keenly aware if you are or are not drinking the water you need to keep them healthy and your immune system will know as soon as you start getting loose on time with your meds. Before you have time to react, you'll be in chronic rejection
3. Don't go Wall Street on your life. Living life to the fullest is about more than quarterly earnings or Carpe Diem. Mortality is too precious to place thrills over true happiness and longevity. When I was first diagnosed with a stage four case of PH, all I wanted to do was be with my family in Denver. But the altitude was already having a severely detrimental impact on my health. I went to sea level because I loved them and because they loved me. My mom would rather talk to me on the phone than talk to my grave. There were many times I wanted to go home for holidays, events, graduations, etc. and I chose not to because I knew doing so would put my life at a significantly greater risk. When I finally went home to say goodbye to my father at his funeral, it precipitated my own transplant. I fear I couldn't have forgiven myself had I not gone, but take your life seriously. There are tens and hundreds of thousands of dollars going into keeping you alive, not expediting your joyride to a faster end.
4. Show gratitude to those around you. Often times, whether we like it or not, being sick precipitates a huge amount of additional attention. That attention is almost necessarily be taken from some other worthy subject. So remember to be nice. To say thank you. To show kindness to the people who might be neglected for your sake. In the same breath, don't feel guilty for it. Be grateful that it is there and show that gratitude by taking the best care of yourself you can.
5. Sometimes things go really, really wrong. Regardless of how diligent you are with your meds and instructions, regardless of how many things you are doing right or wrong, sometimes things just happen. When I began to reject my lungs, I had this overwhelming sense of guilt. I shouldn't have kissed that baby. If only I'd been been more careful with my meds. I shouldn't have started performing again. One day shortly after I was married and the sadness of my deteriorating health seemed overwhelming, I was pouring over every action in the three months when the rejection had taken place, trying to understand everything I might have done wrong. Yoni took me by my emaciated shoulders and told me, "Charity, you've gotta stop doing this. It's not helping." He was absolutely right. Sometimes, figuring our what we did wrong is really important so we don't do it again. But sometimes, letting go is even more important.
I am so grateful to report that my appointment went REALLY well. I have been here much longer than I thought was possible 9 years ago and there have been many times when I thought my turn on earth was over. If you or a loved one are going through a serious illness, I want you to know that despite the serious challenges, there is so much wonder to be enjoyed and witnessed. It's worth sticking around. And I hope I can for a very long time to come.
Since my first and second talks went up on TED, I've received a steady flow of letters, emails and messages from people young and old about their hopes, their fears, their dreams. For the most part, I find these communiques very encouraging and they tend to make me happy. But I am concerned by an alarming trend I see in some people who write me that have chronic illness: people write me looking for approval in dangerous decisions. For this reason, I feel like I have to clarify my message.
1. Listen to your doctors and to the best of your ability, follow their directions. It is true that when I was diagnosed with PH 9 years ago, one top specialist told me not to sing. But many, many other top doctors told me it was fine and even good for me to do it. There wasn't a single study or medical journal that corroborated the doctor's claims of singing exacerbating symptoms of Pulmonary Arterial Hypertension. Not one. When I became too sick to travel and my doctors told me to stop performing, I did so immediately because I knew they were right. It is important your doctor understands you and your hopes and your dreams. It is also important you understand how those hopes and dreams must be shaped into a new reality.
2. Gosh darnet, I know they are annoying as heck, but taking your medications is a lot less annoying than dying or getting a translpant. Seriously. There are too many people waiting for transplants for doctors to give them to patients who aren't doing their very best to keep themselves healthy now. And transplant is way to complicated to get one before it is absolutely necessary. There are SO may nights I have gone to bed, wishing I still had pulmonary hypertension instead of my transplanted lungs. Please keep whatever you have for as long as humanly possible. This means doing extra work. I did a lot of qigong, I changed my diet, I exercised every single day and I ate substantially less salt than doctors told me I could. Even now, some doctors give their patients more leeway than I give myself with medications. But the single most predictive factor in a transplant's success is patient compliance. The doctor's can't see what you're doing but your body knows. Your kidney's are keenly aware if you are or are not drinking the water you need to keep them healthy and your immune system will know as soon as you start getting loose on time with your meds. Before you have time to react, you'll be in chronic rejection
3. Don't go Wall Street on your life. Living life to the fullest is about more than quarterly earnings or Carpe Diem. Mortality is too precious to place thrills over true happiness and longevity. When I was first diagnosed with a stage four case of PH, all I wanted to do was be with my family in Denver. But the altitude was already having a severely detrimental impact on my health. I went to sea level because I loved them and because they loved me. My mom would rather talk to me on the phone than talk to my grave. There were many times I wanted to go home for holidays, events, graduations, etc. and I chose not to because I knew doing so would put my life at a significantly greater risk. When I finally went home to say goodbye to my father at his funeral, it precipitated my own transplant. I fear I couldn't have forgiven myself had I not gone, but take your life seriously. There are tens and hundreds of thousands of dollars going into keeping you alive, not expediting your joyride to a faster end.
4. Show gratitude to those around you. Often times, whether we like it or not, being sick precipitates a huge amount of additional attention. That attention is almost necessarily be taken from some other worthy subject. So remember to be nice. To say thank you. To show kindness to the people who might be neglected for your sake. In the same breath, don't feel guilty for it. Be grateful that it is there and show that gratitude by taking the best care of yourself you can.
5. Sometimes things go really, really wrong. Regardless of how diligent you are with your meds and instructions, regardless of how many things you are doing right or wrong, sometimes things just happen. When I began to reject my lungs, I had this overwhelming sense of guilt. I shouldn't have kissed that baby. If only I'd been been more careful with my meds. I shouldn't have started performing again. One day shortly after I was married and the sadness of my deteriorating health seemed overwhelming, I was pouring over every action in the three months when the rejection had taken place, trying to understand everything I might have done wrong. Yoni took me by my emaciated shoulders and told me, "Charity, you've gotta stop doing this. It's not helping." He was absolutely right. Sometimes, figuring our what we did wrong is really important so we don't do it again. But sometimes, letting go is even more important.
I am so grateful to report that my appointment went REALLY well. I have been here much longer than I thought was possible 9 years ago and there have been many times when I thought my turn on earth was over. If you or a loved one are going through a serious illness, I want you to know that despite the serious challenges, there is so much wonder to be enjoyed and witnessed. It's worth sticking around. And I hope I can for a very long time to come.
