tag:blogger.com,1999:blog-7924439865196022375.post3313287123027237555..comments2024-03-28T03:16:58.351-04:00Comments on A Matter of Life and Breath: Too Late or Too Early?Piperhttp://www.blogger.com/profile/01992462169607238118noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-7924439865196022375.post-46696686441729484792009-04-20T14:41:00.000-04:002009-04-20T14:41:00.000-04:00You sound a lot like me prior to transplant. I was...You sound a lot like me prior to transplant. I was still doing normal everyday things until I got sick. I tended to bounce back, but it started to take longer and longer...and when I got sick, I was sicker. <br /><br />How are your sinuses looking? Have you had issues in the past? My first sinus surgery was a requirement of the lung transplant...I was 15. I did very well for 4 years after that first surgery and then had a second at 20 I was able to be be "put on hold" for the transplant because I was doing so well. Just food for thought.<br /><br />I think i've said this before...forgive me if I have...but my docs always said the healthier you are going in, the quicker/faster/easier the recovery. But, you don't want to do it too early either. It's just a big catch 22!! Hang in there and we're all here for ya'!Heidihttps://www.blogger.com/profile/07791278701579085418noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-71555019197574636212009-04-20T12:08:00.000-04:002009-04-20T12:08:00.000-04:00Being listed is some serious scary shit. I hope y...Being listed is some serious scary shit. I hope you're able to find the peace that I eventually did with the tx decision. It was the best thing I've ever done, but I know it isn't for everyone. If at all else during this time, never give up doing things that you love. Be you, walk your dog, go out with friends... you know, enjoy life :) <br /><br />Just know that you have a ton of people pulling for you!Jen Girlhttps://www.blogger.com/profile/09422438977113019712noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-57145023093148654452009-04-19T16:58:00.000-04:002009-04-19T16:58:00.000-04:00Piper-
I have been reading your blog for quite som...Piper-<br />I have been reading your blog for quite some time. Your personality reminds me of my Cory.<br /><br />You asked if it was worth is. It is all worth it. Life is aall about creating memories and that is so much more important for people with CF. They have to make those memories while they can, before the next hospital visit of just the "feeling like crap"<br />I will you the best and I am saying lots of prayers that you get a call for a new set of lungs very quicklyCory's momnoreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-37113236402768506232009-04-19T15:17:00.000-04:002009-04-19T15:17:00.000-04:00Piper,
I enjoy reading your blog- you have a great...Piper,<br />I enjoy reading your blog- you have a great sense of humor, a cool writing style, and a really interesting life! I was really surprised to read you might be “activated”. Even though you have had a rough year, you were working up to a couple of weeks ago, you are not on oxygen full time, and you still are living a life. Transplant is for when you have nothing to lose. Although your doctors are great people, I would question how much experience they have really had with advanced CF patients. It sounds like they are frustrated and have run out of ideas. Think about getting a second opinion, trying different drugs next time you are sick, maybe go on a study drug, change your environment, and maybe take a vacation. Once you are on the active list, you could get a call anytime, and it doesn’t sound like you are at that place yet.<br />Good luck!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-30391434266701976182009-04-19T11:37:00.000-04:002009-04-19T11:37:00.000-04:00Hey Piper:
I don't have any magical advice, but b...Hey Piper:<br /><br />I don't have any magical advice, but believe me I wish I did. You seem like such a cool girl with a great life. It must be shocking to have your doctors tell you that.<br /><br />Can I ask what your FEV1 is and how long it's been there? The only reason I ask is because I met a tx cystic recently that was in the FEV1 of the 30's for 10 years before her transplant.<br /><br />I think it all depends on the quailty of life aspect. Do you want to live with your lungs at the quality of life you have now and work on getting better? Or do you want a "guaranteed" increase in quality of life but take on different battles and possibly a shortened life? I know it's tough and I'm sorry that you're in this position.<br /><br />I'll be praying for you.<br /><br />RonnieAnonymoushttps://www.blogger.com/profile/06849674714471543078noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-2925723476036739372009-04-19T10:46:00.000-04:002009-04-19T10:46:00.000-04:00I had the same problem for a long time. On paper I...I had the same problem for a long time. On paper I seemed really sick but to look at me you would never know and I think that was part of the reason it took me SO long to be ok with tx. Last year I had a lot of hospitalizations too and have already been in the hospital once this year and the way my track record has been I won't be surprised if I am back in by the end of may! I am just SO ready to feel good and get back to my old self that I finally stopped being scared of tx and I am actually looking forward to it being over and done with! Being sick all the time has never been me so I don't like it very much and I know you don't either! :) You and your doctors will decide what is best when the time is right and you will know when that is. I was just wondering...do you sleep with O2 or use it at all?Jenhttps://www.blogger.com/profile/00406895488412085461noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-69996271338573575922009-04-19T10:40:00.000-04:002009-04-19T10:40:00.000-04:00Hugs to you!!!!!Hugs to you!!!!!NoExcuseshttps://www.blogger.com/profile/01015122167362668804noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-7728294589813427922009-04-19T10:30:00.000-04:002009-04-19T10:30:00.000-04:00You will figure it our Piper. Talk through it, wr...You will figure it our Piper. Talk through it, write it out, do what you need to do to decide if you want to be listed right now. <br /><br />I'm excited for you to get new lungs and be able to breathe and through all this BS behind you that you have endured these last months/years...but I'm also nervous for you since it is a major surgery...and hell I'm JUST a cyster! I can't imagine what it is like for you!!!<br /><br />We love ya Piper and I'm sending hugs and love to NYC for you!!!!<br /><br /><3Amyhttps://www.blogger.com/profile/12354849302798817593noreply@blogger.comtag:blogger.com,1999:blog-7924439865196022375.post-47537030787943986182009-04-19T05:51:00.000-04:002009-04-19T05:51:00.000-04:00Sending peaceful vibes Piper.Sending peaceful vibes Piper.Tinahttps://www.blogger.com/profile/16534117637104009080noreply@blogger.com