Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 I click on a zillion times a day hoping for news of Gwynne. I am so concerned and ever so curious as to how she is doing. I pray for her daily. Perhaps we will hear from her family today. I want to know that she is o.k. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2008 Report Share Posted April 18, 2008 Gwynne, What an experience and lead into a wonderful life. I am just so amazed an thankful for you.I was going to send you a post about the vicodin and constipation. That is what I was on with my hip replacement.It gets bad really quick. All pain meds need colace to go with them. I am so glad you are getting out walking. I just love reading about your re-birth.. Enjoy your new life with your wonderful children.God bless you with a speedy recovery.Something Judy posted after her tx, she cut a small piece of the memory foam and put it where the incesion is under her bra. I am pretty sure it was after a little while. Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Babs,Where I am right now is taking it one day at a time.The days are pretty full with keeping up with meds,taking my outdoor walks around the apartmentcomplex, doing the exercises the docs gave me -mostly to keep up leg strength, taking a shower,resting and pain management. That last one is myleast favorite. If anyone asks, a thoracotomy hurts.They cut right through nerves and muscle, and sawribs apart. The doctors said of all heart or lungsurgeries, that it's the most painful incision you canhave, more so than for double-lung, down the middle.But narcotics are amazing inventions. Pain hits in waves,but I now have times when I'm relatively comfortablefor prolonged periods of time. Yeay.When I first get up out of a chair or bed, I get a tad dizzyand I'm sure my blood pressure drops a bit. I take itslow. But my walks are at a pretty good clip consideringthat the transplant was 2 weeks ago. Two weeks!!!!!!Did I say two weeks!???The kids are taking care of everything else, and I meaneverything. Well, yesterday I did clean my own bathroomsink - big woop. But they do the cleaning, cooking, mostof the meds management, shopping, laundry, doggiecare, etc. They got our cable t.v.'s set up, phones andcomputers up and running, and found this nice apartmentthat is just perfect for our needs. Even the amount ofmeager exercise I'm getting now has enabled me to lose12 pounds. No moon face yet. Just a big grin. Severalfriends want to come and be caregivers, but it hasevolved that my kids don't want to leave me here alonewith anyone unless one of them is here also. But I'llstill have 2 or 3 friends come for several nights topitch in, cook a few meals, and have a low-key visit.I don't know what my status will be when you guysmeet here, but we'll see. You know I'd love to see you.Tuesdays are clinic days at the transplant center. I'm alsogetting a consultation with a psychiatrist due to the medsI'm on, so someone will be in place in case I start togo nuts. So far I've had only one episode that qualified asa near anxiety attack, but I was also horribly constipated,a bit nauseated from meds, very jittery, and anxious aboutthe move we had to make from a hotel room to ourapartment. It was tough having to move twice - once fromthe hospital and then again here. At clinic they do pft's (inthe body box, without inhalers), a chest x-ray, draw labs,and see the doctor/doctors, whom I love. Two more timesI will have to have a 3-hour IV drip of a med called Cytogam.They check my Prograf levels (an anti-rejection drug) to seeif it needs to be adjusted, and the plan is to try to reduce myPrednisone by 5 mg per week. That can get stalled if some-thing else happens that necessitates having to raise it andstart over. I will also have to have more bronchoscopies atregular intervals, but I'm not sure when the next one is.You're knocked out for that one, which is good because itis on a very uncomfortable table, and it makes your throata little sore. The one I had in the hospital was an awfulexperience, but not because of the procedure... rather,because I was due pain meds BEFORE I was wheeled downand so, when I woke up, I was in awful pain. I was pushedover to a corner and left there for transportation to comeget me for about an hour. I was nearly delirious. Next timeshouldn't be as bad.Two of my chest tube sutures were left in until my firstclinic last Tuesday. It was great to get them out - didn'thurt either. The day before I left the hospital, my main linewas removed and a minor one at the wrist. I was delightedthey left the big one at the collarbone in for so long, becausewhenever I needed an IV or blood drawn, they used it insteadof sticking me again. relief. Several times I had to get threeunits of Insulin due to the rise in blood sugar from meds.Hopefully that has subsided. I also had several IV infusionsof potassium. I have a history with IPF of being a little anemic,and that was still the case.After surgery, I was on the ventilator for about 48 hours,but my family was allowed in the room with me, one personat a time, as opposed to what I was expecting. I rememberhating it, but I don't really remember it very well either. Ideveloped a terrible bruise and hematoma on my neck fromthe vent, I guess, but it's going away steadily.Every morning I get up at around 8:00 to log in myweight, b.p., temp, and pulse (not sats). YesterdayI broke my rule about NOT taking my sats and tooka peek once. I was saturating at 99% at room air at onepoint. I cried. It was almost surreal, but in a good way.I take a Reglan pill 30 min. before breakfast (and everyother meal and at bedtime) and take my voluminousquantity of morning meds. After that I usually nap onand off until 11-12:00. I usually shower and take anotherpill, the then take a walk and do exercises. Bras are outof the question, so I'm wearing a camisole when I getdressed. I also do the inspiration spirometer every timeI think about it, which is many times a day. I'm usuallyin the 2000-2500 ml range, but once I nearly flew offthe chair and hit 3500. My eyes were as big as saucers!I drink a lot of water, too.My diet restrictions are no more buffets - ever. I am ona low fat, low carb, low sugar diet, but there are no magicnumbers I'm aiming for every day... just be sensible andcautious. Fortunately, I like steamed vegetables and leanmeat and fish. I already drank skim milk and ate low fatcottage cheese and stuff. I'm very glad I was already inthe habit of eating well, or this would be a lot tougher.I can't have any lunchmeats, which means no hot dogs,or deli turkey, which is a bummer, and I was alreadyallergic to shellfish. grrrrr. I'm supposed to haveprotein every lunch and dinner, but it can include peanutbutter or eggbeaters. I'm only supposed to have 3 eggyolks a week. I use a LOT of garlic powder. Most of theother foods I avoid, like tomatoes, I was alreadyavoiding due to the GERD. I'm not supposed to havecanned fruits or vegetables.So far, besides the incision, one of the things that hurtthe most was a huge sneeze the other day. Coughing isno fun, but I don't do it often and it's getting less painful.I still have some intermittent wheezing from the bad lung,which they tell me will go away and is normal. I have to bevery careful about torquing my body or moving or liftingwith my left shoulder (new lung side). It can sort of freezeup or cramp rather easily, and I'd rather avoid that! Two ofmy greatest comforts are the memory foam pad that Kategot for the bed, and my memory foam pillow. The pillow iswhat I rest and sleep on against my incision, and it is somuch more comfortable than a regular pillow. Music alsohelps comfort me a great deal, as do all the well wishes.In the afternoon, I check emails, mail, rest, glance atmagazines, watch t.v. or play a game with one of the kids.I take two more walks and repeat exercises. I get a dosein the afternoon of Sporanox, an anti-fungal med. Ittastes kind of like Robitussin, but I only have a day or twoof it left. I can't eat for three hours around that time. Afterdinner we usually watch a movie. I don't go to sleep untilbetween 11-midnight, but I really am getting some goodsleep in between waking up for pills at midnight and 6:30 am.I'm working on a letter to my donor's family. I wishmy tremors weren't so wild, so my handwriting were morelegible. But if it were me, I'd rather receive a letter in shakeyscribble than one dictated or printed and signed, so I'mdetermined to finish it myself even though it is very tedious.I'm so grateful and reverent about the gift of life I've beengiven. Pray for me that I'll say the right words to convey mysorrow at their grief and my immense gratitude forever forthe generous, loving gift they have given that has allowedme to live for however long that I would not have had. It'salready been worth it, and I would absolutely, definitely,positively do it again. Quality of life was getting to be a realchallenge. I was torn between feeling that God has otherplans for me, and fearing that it wasn't meant to be for meto survive until transplant. Either way, I knew I was in God'shands. But the week before transplant, when a friend and Iwent to a butterfly exhibit and a gorgeous iridescent bluebutterfly landed on my shoulder and kept its wings OPENfor quite a while (we got a photo, which I'll try to post oneday if possible), I felt that it was a sign from God... a tap onthe shoulder to get ready for something to happen. And itdid! It makes me swell with emotion and awe.I hope this gives you a good idea of what immediate post-transplant is like. It's an amazing experience.Love you guys.Hugs and blessings,Gwynnie 57 Transplanted UTHSC San 4-3-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Gwynnie.....HOME in 3 weeks! Taaaa Daaa. How wonderful. You make this seem like a walk in the park. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Gwynne It was another clinic day for me. Dr. Angel was justbeaming. Today we didn't use a wheelchair, and mypfts were very good. and I couldn't believethe x-ray of the King Kong lung. The bloodwork wasgood except for a bit of anemia. I have clearance towalk outside now without the mask. If things keepgoing this well, I'll be able to go HOME in 3 weeks.I'll continue rehab there in Fort Worth, and followup with my same doctor of the last four years at UTSW.Kerry,Oh YES, I'm so glad you're listed. I think of you sooften, and will of course be praying that you'll getthe call soon! I have a really good feeling about youand transplant. Maybe you'll get "lucky" and haveseveral signs (as I did, like little taps on the shoulderfrom God) before getting the call to reinforcethat it's absolutely the right thing to do. They reallyhelped put my mind at ease, not that I ever doubtedthat it was the right choice for me. The stronger youare going into it, the better you'll do. I wasn'tstrong, so you ought to do just as well as I have!FYI, a group of us were talking at clinic this morning,and all of us said that tx wasn't as bad as we feared.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-08 atUTHSC San (my Dream Team!) TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Gwynne, You continue to amaze and inspire me. Thank you so much for sharing your travels with us. Kathie, WA NSIP '96, etc. > > It was another clinic day for me. Dr. Angel was just > beaming. Today we didn't use a wheelchair, and my > pfts were very good. and I couldn't believe > the x-ray of the King Kong lung. The bloodwork was > good except for a bit of anemia. I have clearance to > walk outside now without the mask. If things keep > going this well, I'll be able to go HOME in 3 weeks. > I'll continue rehab there in Fort Worth, and follow > up with my same doctor of the last four years at UTSW. > > Kerry, > Oh YES, I'm so glad you're listed. I think of you so > often, and will of course be praying that you'll get > the call soon! I have a really good feeling about you > and transplant. Maybe you'll get " lucky " and have > several signs (as I did, like little taps on the shoulder > from God) before getting the call to reinforce > that it's absolutely the right thing to do. They really > helped put my mind at ease, not that I ever doubted > that it was the right choice for me. The stronger you > are going into it, the better you'll do. I wasn't > strong, so you ought to do just as well as I have! > FYI, a group of us were talking at clinic this morning, > and all of us said that tx wasn't as bad as we feared. > > Hugs and blessings, > Gwynnie 57 Single-lung Transplant on 4-3-08 at > UTHSC San (my Dream Team!) TX > Quote Link to comment Share on other sites More sharing options...
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