tag:blogger.com,1999:blog-8121963203914214070.post8080709375873568767..comments2023-12-26T03:00:35.586-07:00Comments on Run, Sickboy, Run - Cystic Fibrosis and Exercise: Lung Transplant or No Lung Transplant?Anonymoushttp://www.blogger.com/profile/06849674714471543078noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-8121963203914214070.post-63757039807371718622010-04-29T10:13:27.046-07:002010-04-29T10:13:27.046-07:00I feel like the definate minority here but I have ...I feel like the definate minority here but I have no desire to have a lung transplant. I am 41 and doing fairly well. My bad days are slightly increasing and i do have hemoptysis issues. I do not believe I am scared. I also fully support and am so happy for all who have had transplants! Ithink we are so lucky to live in a time when this lifesvaing procedure is available. <br />I also am blessed Unknownhttps://www.blogger.com/profile/03685073104615680940noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-78537028218108339572009-12-01T16:45:05.703-07:002009-12-01T16:45:05.703-07:00When I was in kindergarden I met my best friend. ...When I was in kindergarden I met my best friend. She had cystic fibrosis. At the time the doctors gave her a life expetancy of 10 years old. At the age of 12 years old, Jessica was finally at the top of the transplant list. Sadly, she refused it. Her excuse was that she didn't want a big scar and she didn't want to have to take any more medicine then she already had to take. She livedAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-91776166679479589092009-10-29T11:27:16.539-07:002009-10-29T11:27:16.539-07:00First I need to come clean. I don't have CF. T...First I need to come clean. I don't have CF. That said, I was put on 24/7 oxygen at 29, worked, had a baby, but the time came when I needed to make a decision to live or to die. My daughter was 21/2 when I listed and just 4 when I had my transplant. And boy have I lived. She is a senior in high school now, my husband in a job he likes, I retrained to a job I love working with visually Kathrynhttps://www.blogger.com/profile/08878378513013486539noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-29351219618028738692009-10-27T05:13:34.400-07:002009-10-27T05:13:34.400-07:00Hey
I'm 15 years old with C.F. and because o...Hey <br /><br />I'm 15 years old with C.F. and because of lack of veins ive just had a Portacath implanted in my right side, evrything is going great at the moment but im still not out of hospital so i have no experience of living at it in the home does anybody know what happens at home e.g. is it painful having it flushed every month and does it get in the way of any every day activities. ImAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-45250381701863203792009-10-26T07:02:56.386-07:002009-10-26T07:02:56.386-07:00Hello,
This is my first time here. Great blog an...Hello,<br /><br />This is my first time here. Great blog and very interesting and helpful. I have a similar story and was transplanted about 7 weeks ago. I debated the timing and tried to prolong it as long as possible, but eventually I just knew it was time. If anyone is interested to read my story you can go to www.checkonmitch.com it is centered more on the transplant and not my battle Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-66885935197885986832009-10-16T08:55:04.046-07:002009-10-16T08:55:04.046-07:00??????Very good question. I am a double lung tran...??????Very good question. I am a double lung transplant as of May 17,2006. I am very thankful to be here and breathing. I am enjoying my wife of 4 years, but at the time we were married only 9 months. My wife married a dieing man with only one year to live. Would i have done it again, or at all...NO....I have traded one problem for another. Now, please understand my situation is extremely consumingfirehttps://www.blogger.com/profile/14662426871642479499noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-19283356653897318112009-10-13T13:37:20.718-07:002009-10-13T13:37:20.718-07:00Yo! I just recently started frequenting your blog...Yo! I just recently started frequenting your blog, and am a fan of your positive attitude. I firmly believe that being positive about one's experience/health/etc has an effect on the potential outcome of the situation. Anyway, I see a lot of positive comments about transplantation here and I want to add my own experience.<br /><br />I decided in December of 2007 to be listed for a Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-66622280787315753642009-08-27T06:30:38.618-07:002009-08-27T06:30:38.618-07:00Please don't have a transplant for anyone else...Please don't have a transplant for anyone else but yourself.<br /><br />Teeda<br />Duke Tx #481<br />12/15/2003Teedahttps://www.blogger.com/profile/08687418255962268019noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-10010425347927236822009-06-19T19:15:30.272-07:002009-06-19T19:15:30.272-07:00Also wanted to add in response to Ronnie's com...Also wanted to add in response to Ronnie's comment about deep clear good breathes when he was younger or "healthy".<br /><br />I remember my first breath post transplant and it wasn't all that great but within a few days I was breathing better and even now breathe better than I have ever breathed in my life - even when I was "healthy".<br /><br />I was around 22% when Wish2Breathehttps://www.blogger.com/profile/06764261729950708071noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-42755657226218134872009-06-19T19:03:44.414-07:002009-06-19T19:03:44.414-07:00I have had a few people tell me that if you wait t...I have had a few people tell me that if you wait to be listed until you are ready - mentally - you will never be listed. That being said I was listed and was by no means ready - but became ready in a few short weeks before my call.<br /><br />For me the decision came down to this - I still had things I wanted to accomplish with my life. I did take into account my relationships but each person in Wish2Breathehttps://www.blogger.com/profile/06764261729950708071noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-80212873114939153002009-06-19T10:17:53.671-07:002009-06-19T10:17:53.671-07:00Thanks Steph and Ronnie for this post!! For me, I ...Thanks Steph and Ronnie for this post!! For me, I never refused nor accepted the idea of a transplant when i was younger. I really never thought about it to tell you the truth. And fortunately and unfortunately, my health took a turn for the worse very very quickly my senior year in high school, where I didn't have much time to make a decision. In addition, I was 18 at the time, and my Kateyhttps://www.blogger.com/profile/11628086713110351792noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-17522464684538831432009-06-19T08:24:55.152-07:002009-06-19T08:24:55.152-07:00Just a quick comment. My plan is to get a transpla...Just a quick comment. My plan is to get a transplant. I have been evaluated and accepted. I am on the inactive list meaning I won't get a call until I tell them i am ready for the call and then they will make me active.<br /><br />My view of a transplant has always been to save a life. I still have days that I feel good and they really mess with my mind. I keep thinking I will beat this CFstephhttps://www.blogger.com/profile/12808675789017622773noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-52609658266536112802009-06-18T16:40:26.657-07:002009-06-18T16:40:26.657-07:00Ronnie,
Being a mom of a CF'er I can only giv...Ronnie,<br /><br />Being a mom of a CF'er I can only give you my thoughts on the subject. Garran is 8 and had his transplant on February 2, 2009 when he was still 7. this decision was not an easy one. And I don't know how I could have made it if it were for myself. But having to make the decision to Tx or not to Tx for my son was difficult in itself.<br /><br />Garran has always G-Man's New Lungshttps://www.blogger.com/profile/07856389432585383441noreply@blogger.comtag:blogger.com,1999:blog-8121963203914214070.post-25222639027294487892009-06-18T15:43:27.683-07:002009-06-18T15:43:27.683-07:00Hi Ronnie (and Steph if you're reading this!)
...Hi Ronnie (and Steph if you're reading this!)<br /><br />Ahhh, the age old question, to transplant or not to transplant.. or eh, When may be a more suitable question?<br /><br />This may sound ridiculously simple, but for me and from what I hear from lotsa other CF'ers is,you just KNOW when it's time for a tx.<br /><br />For me, I evaluated my quality of life and actually the quality OceanDeserthttps://www.blogger.com/profile/03047791019620622430noreply@blogger.com