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cf
- Thread starter anonymous
- Start date
Hey, I'm 33 and had a transplant 2 years ago. If you have questions, go ahead and ask. I can give you a little life & medical history in the meantime though. At 3 I was diagnosed with cf. At age 15 I had great lung funtions but started requiring IV abx. At 19, my junior year of college, I had an extended bout with pneumona that damaged my lungs. Graduated on time, in 1992 with an engineering degree, still had good lung fucntion though wasn't able to be quite as physically active as I had been and required IV's every 3 months. In 1994 I got hired on as a Software Engineer for a large company. In 1996 I married. Between 1996-1999 my lungs seemed to get worse and I backed off working to part time. In 1999 they told me that if I wanted to consider transplant it was probably time to do so. At that point my husband and I moved to a larger city to be closer to the tx center and my family. In spring 2000 I was listed and had a feeding tube put in to bring my weight up and maintain it. Somewhere during my adult years I started to develop diebetes. In fall 2000 I finally quit working. I waited 29 months and finally a day came where they called me in and when I woke up that night I had a new set of lungs.<img src="i/expressions/present.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> During the next year I recovered and started to look for work while throughly enjoying being physcally active and able to breath again. Now I am working as a software engineer where I did previous to my transplant. That is the bare bones version. Transplant is so much more than a set of lungs though! It's a truely one of the most amazing experiences one can go through in thier life. This is what some nut told me going into it ... and I'd have to agree. Tough, but amazing and so worth it. Take care, and if you are considering transplant.. meet some people who have been there. It doesn't always work, but for even those who it didn't go so well, they usually say the would never haver regretted trying. For each though, it is a truely personal decision.--H2dbl lung txMay 29th, 2002
Hi, Are you considering listing for lungs? My advice is get listed as soon as possible and you can change your mind later. Some people wait too long to list and then are stuck with no options.I had my lung tx due to CF almost 7 years ago. My sister had her lung tx 3 years ago.It is a big decision, but the best decision I made in my life. I am 40 and my sister is 50.There are many centers in the U.S. to choose from, you need to research , talk to docs and see what is the right one for you.If you have any questions please don't hesitate to email me.luckylungsforjo@aol.comI also have a web site that is for pre and post lung tx folks and lots of great resources, people to connect with and chat and email support. Check it out if you can.http://groups.msn.com/TransplantSupportLungHeartLungHeartTalk to you soonJoanneJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/
Hi, I'm Angie and I have a 2 year old grandaughter. She was diagnosed with RSV at two weeks old and we have had a terrible time since. She does not sleep through the night and hasn't since she had the RSV. For the past 3 months she has had a severre cough and the dr. said that she has asthsma and put her on all kind of breathing meds, including a machine. She developed Pnumonia this last episode, and the dr. has seen her every 2 days trying to keep her out of the hospital. He gives her shots of antibiotic each time she goes, and finally today he said that they need to test her for cf. I have been on the internet trying to see if I recognise some of the symptoms, but I am not sure. She is petite but not skinny, she eats good and has never had any problems with that and her stool has been normal. one of the things that scares me is my daughter has had severe asthsma throughout childhood but was never tested for cf. My grandaughter has had alot of problems with being terribly hot natured all the time. Should I be concerned with that? She sweats constantly but I don't recall her tasting salty. I guess I am trying to ask you about all the symptoms of cf. Please let me know. Thank you.