tag:blogger.com,1999:blog-8186035020364406793.comments2013-06-13T01:47:17.756-04:00CF StephCfstephhttp://www.blogger.com/profile/04593251793618584561noreply@blogger.comBlogger307125tag:blogger.com,1999:blog-8186035020364406793.post-59845198946165687462011-10-07T02:10:56.067-04:002011-10-07T02:10:56.067-04:00I have CF and had a double lung transplant in Nove...I have CF and had a double lung transplant in November 2010 at the age of 22. Operation was at The Alfred Hospital in Melbourne, Australia. Had a few bouts of rejection and couple of near misses at the beginning but going well now. Almost coming up to my one year anniversary I'm planning on having a party :DSamanthahttps://www.blogger.com/profile/09200425207607092348noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-57631173872342910962011-02-17T00:10:15.159-05:002011-02-17T00:10:15.159-05:00Well...obviously I'm kind of late posting..but...Well...obviously I'm kind of late posting..but figured I would anyway :)<br /><br />Katey: Living Donor Double Lung transplant (due to CF): <br />February 25, 2004 at 19 years old. I was listed for almost a year, when the doctor's realized I needed lungs soon, with no cadaver lungs having become available. So with a "death sentence of just a few days", I went on life support and flew to California to have the transplant. My Mom and a family friend donated a part of the lungs to save my life. I was in the hospital about 3months after my transplant. I returned to Alabama the 1st of May.<br /><br />Since then, I graduated from college with an undergraduate degree in Health Information Management, and currently working on my BSN/Nursing Degree. I'm going strong, despite setbacks, such as rejection and frequent pneumonia. I'm extremely blessed and thankful to be living this life.Kateyhttps://www.blogger.com/profile/11628086713110351792noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-22974900805356077672011-02-11T11:40:58.037-05:002011-02-11T11:40:58.037-05:00Hello! I came across this blog doing some online ...Hello! I came across this blog doing some online research on double listing. I'm a 28 year old Cystic Fibrosis woman currently listed at Brigham & Women's hospital, being followed out of Childrens in Boston. I've been on the list since 11/1/10. Recently they brought up the idea of listing at the Cleveland Clinic as well. I was wondering if anyone has experience/advice with that? Thanks!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-4429130110895491592011-01-26T03:14:16.913-05:002011-01-26T03:14:16.913-05:00Greetings.
I was tx 7/28/1998 at UNC - Chapel Hill...Greetings.<br />I was tx 7/28/1998 at UNC - Chapel Hill by a terrific surgeon - Dr. Egan, after waiting almost 2.5 yrs for a tx (different rules back then) I had a rough recovery, spending over 6 wks in the hospital and a rather rough first year but after that year was up, its been smooth sailing for me. My new lungs take me all over the world and for them (and their donor) I am grateful!Liz Michalskihttps://www.blogger.com/profile/00177524531242364446noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-24374969447528040842011-01-25T08:40:35.130-05:002011-01-25T08:40:35.130-05:00Double-lung tx due to CF on Jan. 4, 2008. I think...Double-lung tx due to CF on Jan. 4, 2008. I think I came off the vent on Saturday (those ICU days blend together) and I believe I spent 14 days in the hospital. Was readmitted a day later due to intolerance of food while my body was adjusting to the new medications. After that stint, I haven't been admitted since! Life is amazingly more simple and wonderful.Heidi Karn Barkernoreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-62532243588342276622011-01-23T18:31:19.024-05:002011-01-23T18:31:19.024-05:00my tx was done on april 18,2010, just 38 days afte...my tx was done on april 18,2010, just 38 days after being listed at duke. left hospital 11 days laterJesshttps://www.blogger.com/profile/08191778309873176164noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-20519500041041393282011-01-22T22:45:42.170-05:002011-01-22T22:45:42.170-05:00I had a double lung tx on 12/24/1991. My surgery l...I had a double lung tx on 12/24/1991. My surgery lasted about 6 hours, I was out for an hour and rushed back in for a bleed. I was in the hospital for 8 weeks after my surgery, was released on Feb 19, 1992. I was txed at the Cleveland Clinic in Cleveland, OH (I was only the 5th person they txed for cf) and am now followed at University Hospitals of Cleveland in Cleveland, OH.<br /><br />I also received a kidney tx, living donor from my mom, on July 24, 2001 at University Hospitals of Cleveland and was in the hospital for only 4 days after that tx.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-21129011040691300802011-01-22T01:43:12.751-05:002011-01-22T01:43:12.751-05:00Hi, I am jamiebug. I received my transplant on 12/...Hi, I am jamiebug. I received my transplant on 12/10/2007 at University of Pittsburgh Medical Center just in the nick of time. I was CF/Cepacia my case was a high risk and I was so sick I had been placed on a ventilator three days prior to having lungs available. I had a really hard recovery and was put back on the ventilator through a trachea for several months. I spent a total of 50+ days in the hospital recovering. I have celebrated 4 more wedding anniversaries, 3 birthdays and 4 Christmas' since. I have not been treated for rejection and my day to day is quite 'normal'. I have rode my horses, performed professional comedy improv, and spoken to many groups of people sharing my story, sharing hope and raising Organ Transplant awareness.Jamiehttps://www.blogger.com/profile/16443223033562968398noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-13128240361340371712011-01-21T22:03:13.787-05:002011-01-21T22:03:13.787-05:00Double lung transplant October 30, 2010 from CF. C...Double lung transplant October 30, 2010 from CF. Came off the vent on November 1 and went home to my near-center (5 blocks) home away from home on November 16th. On December 30 I received correspondence from my donor's family and from that info I was able to find his obituary online and learn a little more about him. What a wonderful gift for the new year! I'm still here in Minneapolis waiting for the word from the docs to say I can go home (it will be at least another month)! I'll celebrate my 25th birthday on January 30 on my 3 month transplantiversary!Justinehttps://www.blogger.com/profile/08903730117923788153noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-76822615507911224252011-01-21T19:05:38.106-05:002011-01-21T19:05:38.106-05:00double-lung transplant due to cystic fibrosis on j...double-lung transplant due to cystic fibrosis on june 12, 2010. i had my transplant at columbia presbyterian hospital in NYC and was released one day shy of two weeks after my surgery. in the 7 months since my transplant i have turned 29, moved to a new apartment, and spent a LOT of quality time with friends, family, and loved ones. i hope to go back to work soon!Piperhttps://www.blogger.com/profile/01992462169607238118noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-32925406397272987362011-01-21T14:14:33.010-05:002011-01-21T14:14:33.010-05:00Hey You!!! I'm so glad you've gotten so f...Hey You!!! I'm so glad you've gotten so far in this new life!!! I'm so proud of you for getting through all you've been through... You're coming up on your first anniversary -- those days quickly become more important than our birthdays! I'm coming up on my eleventh... I don't know how many years I'll have -- I don't plan on going anywhere soon -- and I hope you get twice as many as me!<br /><br />My information: Double Lung Transplant started on 4/8/2000 ending on 4/9/2000. Came off the vent the afternoon of 4/9/2000... Had my transplant at Loyola in Maywood (near Chicago, IL) I was released on 4/14/2000. I spent a total of 6 days in the hospital after my transplant. I have not been back once... (Except for clinic appointments and all that stuff!!!)<br /><br />Love, SteveBreathinStevenhttps://www.blogger.com/profile/13425167024998690437noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-21065944134960255232010-11-10T16:30:07.984-05:002010-11-10T16:30:07.984-05:00Glad to hear things are going so well!!!Glad to hear things are going so well!!!OceanDeserthttps://www.blogger.com/profile/03047791019620622430noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-76007129119327274222010-10-12T10:14:24.416-04:002010-10-12T10:14:24.416-04:00Wow -- I love the list! Those are some awesome poi...Wow -- I love the list! Those are some awesome points. Thanks for sharing. <3CowTownhttps://www.blogger.com/profile/15756130935907522719noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-58806991687403266142010-09-21T14:47:38.601-04:002010-09-21T14:47:38.601-04:00I love hearing your improving...you have a head st...I love hearing your improving...you have a head start on a few of us, we have to catch up :)<br /><br />Be well!James Fahrhttps://www.blogger.com/profile/11454790754783331298noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-70003152247036328762010-08-24T22:36:59.566-04:002010-08-24T22:36:59.566-04:00Just stopping by to say Hello ~
-Cowtown KellyJust stopping by to say Hello ~<br /><br />-Cowtown KellyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-56816978807026306482010-08-23T22:43:53.150-04:002010-08-23T22:43:53.150-04:00Hi Steph,
I am 3 mos. out from transplant. It is ...Hi Steph,<br /><br />I am 3 mos. out from transplant. It is weird but I feel sick too when I have been home alone for to long. Then I try to talk someone into going to lunch with me and I instantly feel better! I hope you continue to feel better!<br /><br />JocelynAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-72410736218596024492010-08-10T22:39:09.429-04:002010-08-10T22:39:09.429-04:00Dear Steph,
This is Beth's sister. I just hap...Dear Steph,<br />This is Beth's sister. I just happened to read your blog. I was wondering if you are currently on any anti-diarrhea medicine. Some months after my transplant when I was on a lot of Meropenem I had diarrhea so bad and was taking a lot of Imodium. It slowed down my manometry to the point where I could hardly swallow water. It started slow and then went to me being unable to eat a sausage biscuit, to not being able to swallow at all. We had never considered that side effect of Imodium, but it will slow down the whole system from your mouth down. Just an idea.<br />TPTeedahttps://www.blogger.com/profile/08687418255962268019noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-58076302338020904002010-07-23T14:03:03.853-04:002010-07-23T14:03:03.853-04:00I find this post quite interesting. I have to remi...I find this post quite interesting. I have to remind myself that I traded a disease that I 'understood' for one that I really know nothing about. Curve balls that post transplant can throw at us are all part of learning our 'new disease' which is life after transplant. Thanks for sharing! I think it is healthy to share the good and the bad so we can teach others what we learn :) Thanks!!Jamiehttps://www.blogger.com/profile/16443223033562968398noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-25695182373544899962010-07-23T00:42:30.111-04:002010-07-23T00:42:30.111-04:00Steph,
Just because you got new breathers doesn...Steph,<br />Just because you got new breathers doesn't mean you can never complain again--if so, heaven help us all. :) I know you have a deeper appreciation of "don't sweat the small stuff" than most people, but you've still gotta sweat. When you get a gap between your expectations and your experience, there is bound to be disappointment. Hope they figure out your bump in the road soon with the least amount of discomfort to you. I've been to Fenway once to see a game, it's awesome--Go Sox!Sherrihttps://www.blogger.com/profile/12640124554776557003noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-52671345373014144882010-06-29T08:41:26.443-04:002010-06-29T08:41:26.443-04:00Hang tough, Steph! Sending you strength that ever...Hang tough, Steph! Sending you strength that everything will work itself out and quickly. It's good to hear that you are enjoying life and have been quite active. All the best for you!!!!!!!Denise Fahrhttps://www.blogger.com/profile/14628704302255060878noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-63301316838438353122010-06-12T09:15:28.767-04:002010-06-12T09:15:28.767-04:00Hope your stomach bug is on its way out! Jim is h...Hope your stomach bug is on its way out! Jim is having some major stomach issues. Doctor says it's common. There is a light at the end of the tunnel. Take care!Denise Fahrhttps://www.blogger.com/profile/14628704302255060878noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-46175931449850412842010-06-08T02:25:21.213-04:002010-06-08T02:25:21.213-04:00I remember going camping for the first time post t...I remember going camping for the first time post transplant. . . it's sooooo nice not lugging oxygen around out in the great outdoors~ Have fun!<br /><br />Oh and the pain in your sternum. . . it can obviously vary from patient to patient, but I am 2.5 yrs post and I still notice it a little. Mine is from the wire in my sternum. Nothing that slows me down, but in a way I don't mind the reminder of what I lived through.Jamiehttps://www.blogger.com/profile/16443223033562968398noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-81017538916681394032010-06-06T01:44:59.720-04:002010-06-06T01:44:59.720-04:00hey steph, just wanted to say hi and tell you i am...hey steph, just wanted to say hi and tell you i am still reading even if i don't always comment! <br /><br />much love and thanks for the mentions!! <br /><br />I'm wayyyy psyched that you went for such a long walk.Cystic Gal bphttp://cysticgal.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-14050864590064777482010-05-29T02:23:04.709-04:002010-05-29T02:23:04.709-04:00Oh cool! Have fun at camp!!Oh cool! Have fun at camp!!CowTownhttps://www.blogger.com/profile/15756130935907522719noreply@blogger.comtag:blogger.com,1999:blog-8186035020364406793.post-1275020779716659752010-05-28T22:39:33.592-04:002010-05-28T22:39:33.592-04:00Hey Beautiful Girl!
These little bumps suck somet...Hey Beautiful Girl!<br /><br />These little bumps suck sometimes -- that we have a much bigger reaction to a little "stomach bug" than "normal" people... That won't be forever though -- right now your immune suppression is probably near it's highest and you're at your most vulnerable... They'll gradually ratchet that up and these things won't hit you as hard...<br /><br />And especially when you're dealing with something like this -- a couple of good pukes can really wrench muscles and aggravate things like your sternum -- don't be shy about taking a pain pill... That's why they give them to us... It's already obvious that you're careful with them -- but if you need one to sleep, take it -- sleep and rest are very important...<br /><br />It's exciting that you're going on a little get-away!!! Have fun... I hope you have an awesome time...<br /><br />Love, SteveBreathinStevenhttps://www.blogger.com/profile/13425167024998690437noreply@blogger.com