1. Your name (first, first/last, or pseudonym acceptable), age, and a picture;
2) Your story, however you choose to tell it (limited to a few paragraphs, please!);
3) A few of your personal "CF statistics" (be creative: age of diagnosis, mutations, GS team name, etc).
4) Email the above to matteroflifeandbreath@gmail.com
Poetry, fiction, personal essays, creative works of any kind -- let's show ourselves (and the world) that CF stands for CREATIVE FORCE!
Today's first (and very special) guest blog is from a dear friend and fellow CF/transplantee. Christy is a force in the CF community -- there's really no other way to describe her. She is also, as you'll read for yourself, a wife, a mother, a sometime photographer and photoshop guru, a blogger, and a fashion forward super mama. Or, in other words, she's totally awesome. But don't take my word for it, see for yourself.
Community Faces: Sounds from the Underground
Name: Christy Hamilton
Age: 42
CF Statistics: Survivor of living-lobar lung transplant and living-donor kidney transplant; married; 17-year-old (and absolutely beautiful!) daughter.
I was born in 1970 to a wonderful, loving family. After a diagnosis of failure to thrive, I was tested for CF at 16 months of age. That test showed that I didn't have CF, but over the years, things got worse, and after seeing a specialist hours from home, I was finally given the diagnosis of CF at the age of four. I don't remember my childhood being different than anyone else's except for some chest pt daily and enzymes with meals to digest my food. I was a cheerleader in high school, an aerobics instructor, and a lifeguard in the summer months.
My first hospitalization for CF wasn't until the age of 23 after a bout of the flu that led to pneumonia. I was in nursing school at the time pursuing my dream of helping others. Marriage, graduation, a new nursing career, and giving birth to my beautiful, healthy baby girl all followed.
At the age of 28, I developed an infection called Mycobacterium Abscessus. I deteriorated from that so fast and needed a lung transplant at the age of 31. Both of my lungs were removed, and I received a lobe from my mom and another from my uncle. I needed a kidney transplant seven years later, and my mom was also my donor for that. She has given me life three times!
Today, married to my second husband Jason and having lived 11 1/2 with my new lobes and 4 1/2 years with my new kidney, I am loving life! I remember asking my doctor when my daughter was five if he thought I would live to see her graduate from high school. He said that he absolutely thought I would. She graduates in 13 months, and you better believe I plan on being right there with her! God has blessed me in so many ways! Raising money for the Lung Transplant Foundation, which helps fund research to extend the lives of those with lung transplants is where my focus is regarding charitable work. Getting a lung transplant recipient off the table isn't enough!!!
Wow! I didn't know you could give lungs to someone else while still alive?? Is that common for people with cystic fibrosis?
ReplyDeleteI had a lung txp in 2008 due to pulmonary hypertension caused by a genetic defect in my heart. My lungs came from a 39 year-old-woman with 2 small children whom I have since been able to meet. I send them a Christmas gift every year in honor of their wonderful mother and my Angel.
Thank you for this project Piper. Would you consider including others from outside the CF world as well? I know I would love to share my story with your breath heads! ;-)
Laura
Hi, Laura, it's Piper.
ReplyDeleteLiving-lobar transplants for lungs are uncommon, but definitely possible. It requires two donors who both match with the recipient and are willing to give up one lobe of one lung each. The result is that the recipient ends up with one right lobe and one left lobe (most people have 3 and 2, respectively). It's relatively rare, in my understanding, both because it is a more complicated surgery involving 3 lives instead of 1 and because the recipient must be significantly smaller than either donor. The latter also explains why it typically is only seen in CF (CFers tend to be small) and then only in rare, very special circumstances. That said, I know/have known 5 living-lobar recipients, so it does happen. Christy or others may have more to add.
As to your second question, May is CF awareness month, so this initial series will focus on CF/Community Faces. I have featured guest blogs by other, non-CF transplantees, however (including the phenomenal Charity Tillemann-Dick a few months ago) and would be super excited to explore more of those in the future. Community is so important, as is sharing our stories. Thank you for your awesome offer and please feel free to contact me with guest blog ideas, etc.
Piper
I met Christy at Lori Evans' Celebration of life. But I had heard of her for ages. Seems Christy and Lori were long lost sisters, or at least they thought so. The antics of these two have become legendary.
ReplyDeleteThis is a spectacular woman. She certainly is a force in the CF world but more a force in life. You have never read a fashion review until you read what she thinks of the Oscar Red Carpet. I really enjoying reading her comments about something that has ticked her off, such as a person faking illness for monetary gain. She holds nothing back.
Piper, I am very pleased to see your focus for CF Awareness Month. I cannot wait to read more.
Marsha
Laura, Piper summed up the whole living-lobar transplant process very well. I'll add a few things here. There are two reasons why someone would need a living-lobar transplant: because they are too sick to wait for deceased donor lungs to become available; because they have an antibody issue that makes them incompatible with a large amount of the population, and therefore, potential donors are screened to see if they are a match.
ReplyDeleteI had to get a living-lobar transplant, because I had a high number of antibodies. I was incompatible to 96% of the population, and finding that 4% in the time I had left would have been nearly impossible. They started testing friends and family members to see if they were matches. My mom and uncle were. I was the fourth living-lobar transplant at Duke.
Marsha (above) mentioned my dear late friend Lori, who received the second living-lobar transplant at Duke. She received her mom and dad's lobes, because she was running out of time and couldn't wait for a deceased donor.
There are certain centers (Duke, USC, UMass to name a few) who will perform these transplants on adults. There are more centers that will perform these on children (since they are smaller and lobes are of sufficient size). Like Piper said, centers do not want to risk donors' lives if they don't absolutely have to.
Lobar recipients tend to have lower fev1s than those who get full lungs, but the lobes do expand to fill the space. Obviously, they do not regenerate like a liver, but the ability to expand makes up for that. My highest fev1 was 81%. Typically 75% is what we are told to expect.
Marsha, thank you so much. You are such an amazing person. :)