Fw: clip from our local paper, it got front page

[Lisa Lee]

Lisa Lee

August 31, 2004 at 1:19 pm #20172

Attachments : This is me now you can put a face to a name. DBT’s have been a wonderful outlet for me physically and mentally. Lisa Exercising for LifeBy Sally Petty, Staff Writer Lisa Lee, Washington, has beat the odds. The average person with cystic fibrosis lives into the early 30s. She is 43. As she faces an upcoming lung transplant, she hopes to inspire more people to become organ donors.”She’s exemplary,” says her pulmonologist Dr. Tom Browne, Evansville. Although surviving with CF for so long is rare, says Dr. Browne, “we’re seeing more and more people live into adulthood.””Lisa takes such good care of herself,” says Nurse Practitioner Cathy Mouzin. “That’s why she’s lived so long. Physically, she’s very fit. If it weren’t for that, she would not be here today. She doesn’t dwell on the negative. She always stays positive. She always looks for the positive.”Born in Washington to Daniel and Alice Lannan, Lisa had lung problems throughout her childhood that doctors could not diagnose until she was 25. However, she was always very active, joining the swim team at age five.”I stayed in sports all my life, and I think it helped me keep from using antibiotics so soon so that they still work now,” she says. “This is probably the reason I’m still alive, because I’ve stayed physically fit.”As a child, even though no one knew for sure what was wrong with her, she told herself every morning that if she didn’t get out of bed, she would die. “That’s always been my motto,” she says.After living in Florida for 12 years, she returned to Washington with her husband, Rory, and her daughters, Brogan, now 15, and Madison, now 13.Cystic fibrosis is a recessive genetic disease that affects about 30,000 people in the United States, according to the Cystic Fibrosis Foundation.There is a genetic variance within the disease, says Dr. Browne, that makes some cases worse than others and may allow some people to live longer.”A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections,” states the organization’s web site. “These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.”This life-threatening disease causes chronic lung infections and impairs digestion, according to an article by Science Daily LLC. Eventually, chronic infection and inflammation in the lungs destroys them.”Several studies in recent years suggest that the frequent and prolonged airway inflammation in CF lungs leads to the eventual cardio-respiratory failure that is the primary cause of death in people with CF,” reads the article.Lisa also has a weak immune system as a side effect of her disease; she gets infections very easily. The more infections the she has, the stronger medications she must use as the viruses become more resistant. She is on about 20 medications and has become resistant to many antibiotics.She did not have any bacteria in her lungs until about two years ago. Now, in the last stages of cystic fibrosis, she struggles with psuedomas, a bacteria that does not effect normal people.”The next infection could be my last,” she explains. “I walk a fine line because the drugs I’m taking are so toxic they could knock out my liver or kidneys.”Lisa started needing yearly IVs in her early twenties. By the time she was in her forties, she needed them every six months, and recently has had them as much as every nine weeks. Because of this, the veins in her left arm have narrowed and developed too much scar tissue to use them any more. When she got really sick last June, doctors put an IV port in her side so that antibiotics could be easily administered. The port got infected within 10 days, so she started getting IVs in her right arm.There are other reasons, too, that she doesn’t want to get a port again: “Part of having a chronic disease is appearances. I’d be constantly reminded of my disease (if had port).””Some of them (IVs) are messy, and some aren’t, but they’re running out of big veins,” she says. “When they stop working, then I’ll have no choice” but to have a port and/or a transfer.Currently, Lisa takes IVs at home and has home health care nurse to help when she’s sick, suggested by Dr. Browne.If she can’t get the bacteria down because the medications have stopped working, she will need a transplant right away.Meanwhile, she has stayed involved with sports, attending her daughters’ games when she can. She even taught Brogan to draw and coached a girls’ soccer team until she became so sick last June that she couldn’t.”My mom has always been there for me at all my games, and I always understand if she can’t make it because she is sick,” writes Madison. “Sometimes I get mad that she has CF because she can’t go outside and kick a soccer ball with me… but I accept the fact that she has it.”My friends at first when they meet her, they don’t understand why she is sick and why she has a breathing machine, so I tell them and eventually they get use to it like I did.””I think I first realized the reality and extent to CF about a year ago and it’s something that is always in the back of my mind,” writes Brogan. “I was definitely overwhelmed with the extent of CF. I guess I had never realized what it really meant and its extremes. Until about a year ago I wasn’t aware that organ donation would be a factor in the future, but as time wears, I am finding out more about it.”It most definitely scares me to think about such a surgery, but I do realize that not much will get better without it, and health will fail slowly but surely. I have great anticipation for all the positive outcomes of the operation, but I’m not sure if I could handle the risks and negative parts of the operation. But I will always be there for her through good or bad … I love her dearly and wouldn’t trade (her for) anyone and would go through (anything) to keep her safe.”Lisa says her daughters understand everything that is happening to her and that she could die soon. When she found out she was in the last stages of the disease last year, it took her weeks to come to terms with the fact that she could die at the next infection.”I cried a lot,” she says. “But I didn’t want to use antidepressants. I don’t know what eventually pulled me out of the hole because it was so big. I realized that I had a lot more to live for than to die for.””When I found out my mom had CF, I was really little, so I don’t remember much,” says Madison. “It scares me sometimes, though, that someday she can get really sick and might die, but I try not to think about that, and every day I pray for her even if she is having a good day or not. So I just accept that she has CF and hope she lives as long as she can.”After she started feeling better, Lisa jumped into online cystic fibrosis groups, read various articles about the disease and became passionate about the organ donation movement.”She’s done as good a job as anyone can do with it,” says Dr. Browne. “She’s taken upon herself to learn as much as she can about her disease and learn what to do about it. She helps me take care of her. She’s done a great job of trying to maintain and live a normal life.””I really didn’t get into organ donation until the last maybe four months,” says Lisa. “I did get more involved in CF awareness last June when I actually came out of denial and accepted I did have a disease and it would kill me. Before that, doctors had a very hard time getting me into the hospital. I just didn’t think it was important. Having to deal with the daily maintenance of the disease, the nebulizer every three hours, the CPT three times a day, the over 20 pills a day, none of that ever put a damper on my way of life.”But last June, I had a rapid decline in lung function and more frequent infections involving IVs. Now we’re at IVs every 9 weeks. After I accepted the facts of my disease, I became more involved, even if it was tying purple ribbons with hot glue for the CF organization. When transplant became eminent, that’s when I began researching organ donation and looking up statistics.”It’s sad that all people in Indiana have to do is sign the back of their license. I always felt giving eyesight to a child would be so special, until I realized there are so many people fighting for their lives. To know your going to die has been quite a load for me to bear.”At the urging of Dr. Phillip Watson, Lisa got on the transplant list at IU in December 2002. A lung transplant could add extra years to her life.In early April, a fund was set up for Lisa at Old National Bank called “Lungs for Lisa” to help with her outstanding and upcoming medical bills.To be ready for her transplant when the time comes, Lisa pushes herself to exercise and keep weight on. She has to eat 5,000 calories a day just to keep the weight she has. When she starts getting very thin, she’s a less likely candidate for the transplant. The stronger she is at the time of the transplant, the less time she will have to spend in Indianapolis and the more likely she will survive the operation.However, because of the inherent risks, she and her doctors want to hold off for as long as possible.”That’s the best thing I ever did,” Lisa says of getting on the list. Now near the top of the list, Lisa says if she does not absolutely need a lung transplant when her name comes up, she will pass and wait for the next opportunity. After she reaches the number one spot again, she thinks her wait would be about two weeks.”I’m kind of scared about her getting the transplant because she has a chance of dying,” says Madison, “but then I’m not scared because she will be able to breath better.”Dr. Browne says that transplantation is “sort of a last resort, but you don’t want to wait too long… Once you’ve done it, you’ve burned a bridge and you can never go back. Some people can smolder along for a number of years and not change much.””She’s really quite remarkable,” he adds. “I’m glad to have a chance to try to help with her care because when someone is as strongly motivated as her, you want to try and help them.””If anyone gets through (the transplant) and makes it, it will be her,” says Mouzin. NEWS HEADLINES Exercising for Life Daniels donates nearly $20,000 to Indianapolis police This Week’s Features in Print Sharing Outdoors by Bill Quilliam Taste of Daviess County slated Air Evac back in service locally Crooks faces opposition in primary Irish Eyes Smile On Luke Zeller 15 nabbed in Southwestern Indiana drug bust 2 of 3 to be elected to fill Washington School Board seats Springtime chores Demos seeking candidates March of Dimes benefits from walk City makes final changes to 2004 budget 39 counties adopt early elimination of inventory tax 1st pitch starts season Hometown market set to open in May Woman dies in Martin County accident U.S. soldiers re-enlist in strong numbers

[Lisa A Lee]

Lisa A Lee

August 31, 2004 at 3:10 pm #20173

Sorry, I didn’t mean for this to go to the group. It was only mean’t for Jonathon. I’m so embarrased, OK so now you guys now the skinny on me, argh… wonderful outlet for me physically and mentally. Lisa person with cystic fibrosis lives into the early 30s. She is 43. As she faces an upcoming lung transplant, she hopes to inspire more people to become organ donors. Browne, Evansville. Although surviving with CF for so long is rare, says Dr. Browne, “we’re seeing more and more people live into adulthood.” Practitioner Cathy Mouzin. “That’s why she’s lived so long. Physically, she’s very fit. If it weren’t for that, she would not be here today. She doesn’t dwell on the negative. She always stays positive. She always looks for the positive.” lung problems throughout her childhood that doctors could not diagnose until she was 25. However, she was always very active, joining the swim team at age five. me keep from using antibiotics so soon so that they still work now,” she says. “This is probably the reason I’m still alive, because I’ve stayed physically fit.” wrong with her, she told herself every morning that if she didn’t get out of bed, she would die. Washington with her husband, Rory, and her daughters, Brogan, now 15, and Madison, now 13. affects about 30,000 people in the United States, according to the Cystic Fibrosis Foundation. Dr. Browne, that makes some cases worse than others and may allow some people to live longer. abnormally thick, sticky mucus that clogs the lungs and leads to life- threatening lung infections,” states the organization’s web site. “These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.” infections and impairs digestion, according to an article by Science Daily LLC. Eventually, chronic infection and inflammation in the lungs destroys them. frequent and prolonged airway inflammation in CF lungs leads to the eventual cardio-respiratory failure that is the primary cause of death in people with CF,” reads the article. her disease; she gets infections very easily. The more infections the she has, the stronger medications she must use as the viruses become more resistant. She is on about 20 medications and has become resistant to many antibiotics. two years ago. Now, in the last stages of cystic fibrosis, she struggles with psuedomas, a bacteria that does not effect normal people. walk a fine line because the drugs I’m taking are so toxic they could knock out my liver or kidneys.” By the time she was in her forties, she needed them every six months, and recently has had them as much as every nine weeks. Because of this, the veins in her left arm have narrowed and developed too much scar tissue to use them any more. When she got really sick last June, doctors put an IV port in her side so that antibiotics could be easily administered. The port got infected within 10 days, so she started getting IVs in her right arm. get a port again: “Part of having a chronic disease is appearances. I’d be constantly reminded of my disease (if had port).” they’re running out of big veins,” she says. “When they stop working, then I’ll have no choice” but to have a port and/or a transfer. care nurse to help when she’s sick, suggested by Dr. Browne. medications have stopped working, she will need a transplant right away. attending her daughters’ games when she can. She even taught Brogan to draw and coached a girls’ soccer team until she became so sick last June that she couldn’t. and I always understand if she can’t make it because she is sick,” writes Madison. “Sometimes I get mad that she has CF because she can’t go outside and kick a soccer ball with me… but I accept the fact that she has it. understand why she is sick and why she has a breathing machine, so I tell them and eventually they get use to it like I did.” about a year ago and it’s something that is always in the back of my mind,” writes Brogan. “I was definitely overwhelmed with the extent of CF. I guess I had never realized what it really meant and its extremes. Until about a year ago I wasn’t aware that organ donation would be a factor in the future, but as time wears, I am finding out more about it. surgery, but I do realize that not much will get better without it, and health will fail slowly but surely. I have great anticipation for all the positive outcomes of the operation, but I’m not sure if I could handle the risks and negative parts of the operation. But I will always be there for her through good or bad … I love her dearly and wouldn’t trade (her for) anyone and would go through (anything) to keep her safe.” happening to her and that she could die soon. When she found out she was in the last stages of the disease last year, it took her weeks to come to terms with the fact that she could die at the next infection. antidepressants. I don’t know what eventually pulled me out of the hole because it was so big. I realized that I had a lot more to live for than to die for.” so I don’t remember much,” says Madison. “It scares me sometimes, though, that someday she can get really sick and might die, but I try not to think about that, and every day I pray for her even if she is having a good day or not. So I just accept that she has CF and hope she lives as long as she can.” online cystic fibrosis groups, read various articles about the disease and became passionate about the organ donation movement. says Dr. Browne. “She’s taken upon herself to learn as much as she can about her disease and learn what to do about it. She helps me take care of her. She’s done a great job of trying to maintain and live a normal life.” maybe four months,” says Lisa. “I did get more involved in CF awareness last June when I actually came out of denial and accepted I did have a disease and it would kill me. Before that, doctors had a very hard time getting me into the hospital. I just didn’t think it was important. Having to deal with the daily maintenance of the disease, the nebulizer every three hours, the CPT three times a day, the over 20 pills a day, none of that ever put a damper on my way of life. and more frequent infections involving IVs. Now we’re at IVs every 9 weeks. After I accepted the facts of my disease, I became more involved, even if it was tying purple ribbons with hot glue for the CF organization. When transplant became eminent, that’s when I began researching organ donation and looking up statistics. the back of their license. I always felt giving eyesight to a child would be so special, until I realized there are so many people fighting for their lives. To know your going to die has been quite a load for me to bear.” transplant list at IU in December 2002. A lung transplant could add extra years to her life. National Bank called “Lungs for Lisa” to help with her outstanding and upcoming medical bills. Lisa pushes herself to exercise and keep weight on. She has to eat 5,000 calories a day just to keep the weight she has. When she starts getting very thin, she’s a less likely candidate for the transplant. The stronger she is at the time of the transplant, the less time she will have to spend in Indianapolis and the more likely she will survive the operation. doctors want to hold off for as long as possible. getting on the list. Now near the top of the list, Lisa says if she does not absolutely need a lung transplant when her name comes up, she will pass and wait for the next opportunity. After she reaches the number one spot again, she thinks her wait would be about two weeks. because she has a chance of dying,” says Madison, “but then I’m not scared because she will be able to breath better.” resort, but you don’t want to wait too long… Once you’ve done it, you’ve burned a bridge and you can never go back. Some people can smolder along for a number of years and not change much.” have a chance to try to help with her care because when someone is as strongly motivated as her, you want to try and help them.” it will be her,” says Mouzin. seats Calendar

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