Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 Gwynne Haven't played with my Wii as much as I should probably. Forget about having it sometimes. But I do like it and will use it more and some for a long time I suspect. I am not one who will need the next thing, more advanced. Hope we get to look at the lights. I've already found the places we want to go. However, she's been sick for ten days or so and still coughing a lot. So, I'm on keep away from her mode. Hopefully she'll be safe soon. Of any part of the disease, avoiding those with germs when they need help, is the part I find most bothersome. However, I'm very good about it and she is also. She wouldn't dare let me near her sick even if I was of the mind to be. Yesterday, I picked her up lunch and put it inside her laundry room on the dryer. I even wore gloves to open her door. I did go a couple of weeks ago to her surgeon with her. Even though she wasn't running a fever, I kept away, she talked in another direction, and I wore a surgical mask. May be overkill but I haven't yet been sick since being diagnosed. > > > Bruce, > Do you play a lot with your new WII? I hope you > and have some good times over the > holidays. I love looking at the lights and listening > to the music. Wishing a happy, STABLE new year! > > Hugs and blessings, > Gwynne Single-lung Transplant 4-3-08 > at UTHSC - San Fort Worth, TX > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Hello Gwynne, and I got back from our trip this evening around 6:30 PM. I have been reading posts since we got home (had dinner). I had to reply to this wonderful encouraging post. I just wanted to tell you how much you mean to me and what an inspiration you are.Today in the car and I were just talking about the plans we had about buying a nice motor home after he retired and just traveled around and try to go to every State.. All of a sudden I nearly had an anxiety attach, tears start pumping.. I don't know where that all came from so quickly but when I read this post it touched that spot I don't allow myself to or stay in for long. You are just incredible the way you just DO IT.. I think the compassion you show for all of us shows so clearly.I do pray you continue for 29 or 30 years like Eileen and her sister. THEN, I read the prayer Joyce had posted (which I kept too) and that opened the flood gates again. I think I have had a GOOD flushing out today. Thanks for the bump to get the rest out for now.. We need that now and then.Have a good week. God Bless you.PS. When I talked to Lucian he said Kerrys hubby showed him how quickly her incisions were healing on her back. Each one about 5" from the center of her back. I know that had to be rough but that little thing is a fighter. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Patti and everyone who doesn't know:A thoracotomy is where they make the incisionin the back and it sort of wraps around to theside. That's what I had for my single-lungtransplant. I have no reason to doubt whatmy doctors all told me - that a thoracotomyis the most painful of all surgical incisions.As I'm sure Kerry will agree with, it deserves itsnasty reputation. They slice through muscle,nerves, tendons, and ribs. I still have a prettylarge gap in two of my ribs where they cutthem open, all of which lead to some killerbackaches. I've never heard of two incisionsfrom the back, as I understand Kerry had. Ican't even imagine that. Bring on the drugsfor the girl!!Usually, for double-lung they do the surgeryfrom the front, opening up the ribcage. Iforget what that's called but I think it's asternumectomy. It isn't supposed to be ASbad. Neither one is a walk in the park. But I'dhave my surgery again in a heartbeat if Ineeded it.Prayers please, for the results I'm awaiting ona 24-hour heart monitor (a holter monitor) toverify that everything's normal there. Also, Ifound out that a facial lesion I have on mycheek is a carcinoma, so I'll have to have asurgeon cut that out. bah. It's always something,right? They would consider using a topicalcream that is sometimes used to treat skincancers, but in someone who's immuno-suppressed like me, there's more of a likelihoodof it spreading. I guess this is a pretty commonthing, though.Kerry, I'm so delighted that you seem to recuperatingright on schedule. I know the pain is terrible, butit does get better. I went from a drip to Norco, toVicodin, to Extra Strength Tylenol in probably a 5week period. Did you have TWO thoracotomies?!?!?You'll be out walking in no time I'm sure, if not already.I'm so proud of you, and I can surely understand youhyperventilating when you got the call. It's the mostimportant phone call you'll ever get, and so manyemotions are involved. Mine was also scary becausethere wasn't time to drive from Fort Worth to San. I had already compiled a list of pilots withprivate planes who said they'd be available 24/7 as longas their planes were here in town. The first one on mylist was unavailable, which terrified me. Fortunately, thesecond call was a hit, and before long I was beingair-ambulanced to San . Today is my nine-monthanniversary since my transplant! It still amazes me!!I found these things to be helpful for various reasons:-let other people help you whenever they offer-drink lots of water-take naps when your body demands it, especiallysince you won't sleep great at night for a while.Sleep is considered medicine after transplant.Sit down and rest when you're in a lot of pain.-Remember to breathe deeply. As you said, it isnormal for transplant recipients to continue totake shallow breaths, since that's what they'vebeen doing for so long. Also watch your posture.-follow the rules they gave you about foodpreparation and restrictions. They're good rules.-keep a log/chart to keep track of your meds andwhat time of day they're taken. I also make a list(with copies) of all meds which I use as a checklistwhen it's time to refill pillboxes. I have 3 of theone-week boxes. I usually try to fill mine for severalweeks ahead (it takes forever at first and never getsto be a fun pastime) but sometimes I have to makea minor adjustment after my labs, every two weeks,if necessary due to my Prograf or Coumadin levels.(I'm only on the blood thinner since the bloodclots last summer in Colorado.) Minor changes inPrograf are common for quite a while until you staywithin the therapeutic range desired. And of courseyou'll be tapering down the Prednisone, although therate of change depends on the doctor. I'm now on10 mg. and the plan is to have me down to 5 in threemonths. I lost ten pounds after the surgery and nevergained from the Prednisone. I have gained weight overthe past 4 months, but it's more emotional thanmedication-induced eating. Such a battle for me!A period of euphoria is common post-transplant. Oftenwhen that wears off, there is depression. I was alreadyon an antidepressant, but I've made a change there, too.I felt that I had to redefine myself, because the focusand purpose of my life for four years had been "just"trying to stay alive. Then all of a sudden I could breatheand the focus changed. After being given such a hugegift, I felt guilty about feeling down... like I didn't havethe right. It's not helpful to go there. Be kind andgentle to yourself. What you've been through istraumatic, even if you're strong and handled it well.In my case, my counselor believes that the series ofevents of the past year, and the years preceding it,have resulted in Post-Traumatic Stress Disorder. Shesays that any time you come that close to death andknow it, it's going to crop up in the emotions at somepoint one way or the other. So I'm working my waythrough that. Also, the regimen of labs, clinics, stillwheezing sometimes (which you probably don't at all),doctor visits, etc. definitely keep you in the medical"loop", which you were already sick of. And then, forme, there's always that silent fear of lymphoma orrejection. It's not huge or overwhelming, just alow-level fear just below the surface. It's a trade-off,but a worthwhile one for sure. I give enormous creditto God for giving me peace, and to my support systemof friends and family, including my Air Family. Kerry,you are indeed blessed to have a caring husband to shareyour journey and transplant experience with. I'm so happyfor your children, whose mom has been given a secondchance at life., I'm SO glad you're home. I was much calmer,MUCH more comfortable, and well-rested when I gotout of the hospital and into the little apartment I stayedin with my children for 5 weeks. And then I felt evenbetter when I came home. Ahhh, home. I hope you continueto recuperate as pain-free and smoothly as possible.Keep up the great attitude - it'll get you a long, longway. I feel pride in your accomplishment.For the rest of you waiting for the call, I pray thatit comes soon. And for those of you who think you don'twant or couldn't handle a transplant, I beg you to thinkthrough that decision very, very carefully. When you havefaith that it's your only option to live, you'd be surprisedat how strong you can be and what you can tolerate.Life is good and is a gift from God. For those of you whohave made a definite and unchangeable decision not to betransplanted, or aren't candidates for tx, and to everyone,I pray for your stability. For those of you who are strugglingwith a decline in health, I pray for healing, strength, andpeace. For the newbies, please don't forget to make use ofthe internet, but remember that you can get an awful lot ofvery useful information combined with experience fromthe board. There are no dumb questions, and PF is scaryfor everyone. If you're new to oxygen use, let it be yourfriend. Take lists of questions to your doctor at a teachinghospital if possible, and advocate strongly for yourself. Ifyou aren't assertive, now's the time to learn to be! If you'redepressed, a little or a lot, join the club and talk to yourdoctor. It usually comes with the disease. Know that youaren't alone. If you have any symptoms or think you mightpossibly be sick, call your doctor! Get and use your pulseoximeters, no matter what your doctors say. Remember thatyou are the only ones who know for sure when it's time toincrease your oxygen flow, not your doctor. If you'reprogressively short of breath, don't wait for a doctor totell you that you need to increase your liter flow. You tellhim! And if you don't get good communication or yourexpectations met by your doctor, change doctors!!You can still have passion for life, but you may have tocreate new passions and different expectations. You'restill unique, beautiful, worthy of happiness, and loved.Sorry this is so long-winded, but I don't post much anymoreand maybe it'll help someone.My wishes go to everyone for a Happy New Year filled with love,laughter, peace, and hope.Hugs and blessings,Gwynne 57 Single-lung Transplant on 4-3-08 atUTHSC - San Fort Worth, TX Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.