Re: Babs/ Gwynnie's routine/Jane/Sher

[Guest guest]

Jane...what is STEP Trial?

Thanks.....

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

to Babs et al re. Gwynnie's routine> > > > 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 apartment> > complex, doing the exercises the docs gave me -> > mostly to keep up leg strength, taking a shower,> > resting and pain management. That last one is my> > least favorite. If anyone asks, a thoracotomy hurts.> > They cut right through nerves and muscle, and saw> > ribs apart. The doctors said of all heart or lung> > surgeries, that it's the most painful incision you can> > have, 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 comfortable> > for prolonged periods of time. Yeay.> > > > When I first get up out of a chair or bed, I get a tad dizzy> > and I'm sure my blood pressure drops a bit. I take it> > slow. But my walks are at a pretty good clip considering> > that the transplant was 2 weeks ago. Two weeks!!!!!!> > Did I say two weeks!???> > > > The kids are taking care of everything else, and I mean> > everything. Well, yesterday I did clean my own bathroom> > sink - big woop. But they do the cleaning, cooking, most> > of the meds management, shopping, laundry, doggie> > care, etc. They got our cable t.v.'s set up, phones and> > computers up and running, and found this nice apartment> > that is just perfect for our needs. Even the amount of> > meager exercise I'm getting now has enabled me to lose> > 12 pounds. No moon face yet. Just a big grin. Several> > friends want to come and be caregivers, but it has> > evolved that my kids don't want to leave me here alone> > with anyone unless one of them is here also. But I'll> > still have 2 or 3 friends come for several nights to> > pitch in, cook a few meals, and have a low-key visit.> > I don't know what my status will be when you guys> > meet here, but we'll see. You know I'd love to see you.> > > > Tuesdays are clinic days at the transplant center. I'm also> > getting a consultation with a psychiatrist due to the meds> > I'm on, so someone will be in place in case I start to> > go nuts. So far I've had only one episode that qualified as> > a near anxiety attack, but I was also horribly constipated,> > a bit nauseated from meds, very jittery, and anxious about> > the move we had to make from a hotel room to our> > apartment. It was tough having to move twice - once from> > the hospital and then again here. At clinic they do pft's (in> > the body box, without inhalers), a chest x-ray, draw labs,> > and see the doctor/doctors, whom I love. Two more times> > I will have to have a 3-hour IV drip of a med called Cytogam.> > They check my Prograf levels (an anti-rejection drug) to see> > if it needs to be adjusted, and the plan is to try to reduce my> > Prednisone by 5 mg per week. That can get stalled if some-> > thing else happens that necessitates having to raise it and> > start over. I will also have to have more bronchoscopies at> > regular intervals, but I'm not sure when the next one is.> > You're knocked out for that one, which is good because it> > is on a very uncomfortable table, and it makes your throat> > a little sore. The one I had in the hospital was an awful> > experience, but not because of the procedure... rather,> > because I was due pain meds BEFORE I was wheeled down> > and so, when I woke up, I was in awful pain. I was pushed> > over to a corner and left there for transportation to come> > get me for about an hour. I was nearly delirious. Next time> > shouldn't be as bad.> > > > Two of my chest tube sutures were left in until my first> > clinic last Tuesday. It was great to get them out - didn't> > hurt either. The day before I left the hospital, my main line> > was removed and a minor one at the wrist. I was delighted> > they left the big one at the collarbone in for so long, because> > whenever I needed an IV or blood drawn, they used it instead> > of sticking me again. relief. Several times I had to get three> > units of Insulin due to the rise in blood sugar from meds.> > Hopefully that has subsided. I also had several IV infusions> > of 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 person> > at a time, as opposed to what I was expecting. I remember> > hating it, but I don't really remember it very well either. I> > developed a terrible bruise and hematoma on my neck from> > the vent, I guess, but it's going away steadily.> > > > Every morning I get up at around 8:00 to log in my> > weight, b.p., temp, and pulse (not sats). Yesterday> > I broke my rule about NOT taking my sats and took> > a peek once. I was saturating at 99% at room air at one> > point. I cried. It was almost surreal, but in a good way.> > > > I take a Reglan pill 30 min. before breakfast (and every> > other meal and at bedtime) and take my voluminous> > quantity of morning meds. After that I usually nap on> > and off until 11-12:00. I usually shower and take another> > pill, the then take a walk and do exercises. Bras are out> > of the question, so I'm wearing a camisole when I get> > dressed. I also do the inspiration spirometer every time> > I think about it, which is many times a day. I'm usually> > in the 2000-2500 ml range, but once I nearly flew off> > the 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 on> > a low fat, low carb, low sugar diet, but there are no magic> > numbers I'm aiming for every day... just be sensible and> > cautious. Fortunately, I like steamed vegetables and lean> > meat and fish. I already drank skim milk and ate low fat> > cottage cheese and stuff. I'm very glad I was already in> > the 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 already> > allergic to shellfish. grrrrr. I'm supposed to have> > protein every lunch and dinner, but it can include peanut> > butter or eggbeaters. I'm only supposed to have 3 egg> > yolks a week. I use a LOT of garlic powder. Most of the> > other foods I avoid, like tomatoes, I was already> > avoiding due to the GERD. I'm not supposed to have> > canned fruits or vegetables.> > > > So far, besides the incision, one of the things that hurt> > the most was a huge sneeze the other day. Coughing is> > no 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 be> > very careful about torquing my body or moving or lifting> > with my left shoulder (new lung side). It can sort of freeze> > up or cramp rather easily, and I'd rather avoid that! Two of> > my greatest comforts are the memory foam pad that Kate> > got for the bed, and my memory foam pillow. The pillow is> > what I rest and sleep on against my incision, and it is so> > much more comfortable than a regular pillow. Music also> > helps comfort me a great deal, as do all the well wishes.> > > > In the afternoon, I check emails, mail, rest, glance at> > magazines, watch t.v. or play a game with one of the kids.> > I take two more walks and repeat exercises. I get a dose> > in the afternoon of Sporanox, an anti-fungal med. It> > tastes kind of like Robitussin, but I only have a day or two> > of it left. I can't eat for three hours around that time. After> > dinner we usually watch a movie. I don't go to sleep until> > between 11-midnight, but I really am getting some good> > sleep in between waking up for pills at midnight and 6:30 am.> > > > I'm working on a letter to my donor's family. I wish> > my tremors weren't so wild, so my handwriting were more> > legible. But if it were me, I'd rather receive a letter in shakey> > scribble than one dictated or printed and signed, so I'm> > determined to finish it myself even though it is very tedious.> > I'm so grateful and reverent about the gift of life I've been> > given. Pray for me that I'll say the right words to convey my> > sorrow at their grief and my immense gratitude forever for> > the generous, loving gift they have given that has allowed> > me to live for however long that I would not have had. It's> > already been worth it, and I would absolutely, definitely,> > positively do it again. Quality of life was getting to be a real> > challenge. I was torn between feeling that God has other> > plans for me, and fearing that it wasn't meant to be for me> > to survive until transplant. Either way, I knew I was in God's> > hands. But the week before transplant, when a friend and I> > went to a butterfly exhibit and a gorgeous iridescent blue> > butterfly landed on my shoulder and kept its wings OPEN> > for quite a while (we got a photo, which I'll try to post one> > day if possible), I felt that it was a sign from God... a tap on> > the shoulder to get ready for something to happen. And it> > did! 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> > > > > > > > > > > ______________________________________________________________________> ______________> > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> >>