Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Sherry, Congrads on being listed. I think you've totally got the right idea - pack the suitcase and get on with life. I only get to poke my nose in now and then, but I'll be looking for updates. Grin! Kirkwood Director of Outreach, Vice President Hermansky-Pudlak Syndrome Network One South Road Oyster Bay, NY 11771 1 (800) 789-9HPS www.hermansky-pudlak.org Personal blog: www.heatherkirkwood.blogspot.com Search the Web at www.goodsearch.com and choose the HPS Network as your charity! >> Sherry,> It's only been a couple of days on the Imuran and so far all I have is nausea. Not horrible...haven't actually gotten sick just feel pretty lousy. The doctor told me I might have some nausea and to call her if it lasts more than a few days or if I'm having trouble keeping food down. > I just feel crummy and obviously don't have any kind of appetite. I'm sure it will pass as my body adjusts. > So really just waiting and seeing. > > I'm thinking of you and hoping the phone rings at the perfect moment!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Tuesday, January 27, 2009 9:50:32 AM> Subject: Lung Transplant> > > I know a few people on this site already know about my decision to go > ahead & get listed for a lung transplant at Vanderbilt in Nashville. > Now the wait starts. I'm just going to finish packing my suitcase, > put it in the guest bedroom, & live for awhile. I'm so tired right > now of seeing doctors, tests, etc. It's time for something else.> > I'm going to take a "page" out of Gwynne's e-mails & say a few words > to some of you.> > Lou> > Hooray! Let's hope you continue to get your energy back & lose your > terrible shortness of breath. It could be a miracle in the works.> > Bruce> > You give such good advice about just living your life. When I was > asked during the lung transplant evaluation about what I couldn't do > any longer, I really had to think about it. I said, "Well, I've > tried to focus for so long now (11 yrs) on what I could do, I've > forgotten what I could NOT do anymore." That's how one should really > think all the time, regardless of illness as age poses the same > problems.> > Sher/Peggy> > Oh my, I've discovered that both of you are crafty people too. I > love to hand embroider doing pillowcases, tablecloths, dresser > scarfs, anything I can find. I also crochet & must get back to my > prayer shawl ministry for church. Also, I quilt - even finished one > for my oldest granddaughter for Christmas. That was a challenge in > my condition, but I hand quilted the whole twin size quilt. So, keep > our fingers from getting stiff, please God I pray!> > Jon> > I'm so sorry you are having to give up doing what you love best, > being a bedside RN. We need RN's so badly too, especially ones like > yourself who care so much. However, look at Beth - she still > uses all that knowledge for all of us now.> > Beth> > How's the Imuran working? I'm praying that you'll find that you're > doing better & better as time goes on.> > All for now.> > Sherry > NSIP '98 Listed for Transplant 1.15.2009> Quote Link to comment Share on other sites More sharing options...
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