Kerry here, thanks Peggy for posting

[Guest guest]

This is my first time on the computer all day. I didn't worry about

it though because I figured and hoped you would update the gang. I

think when I first tried calling Joyce this morning she was on the

phone w/ you because it was busy. I did talk to her after that.

She said she didn't get to her room last night until after 8:30 so

that's why it just rang and rang. This morning my son's ear check

went fine. After that I stopped by the hospital to do a blood type

test for me. The transplant team called me and they said that they

needed a second blood typing (they usually do a second one w/ the

heart cath, but I didn't have one so I needed to get one done).

Driving home from the hospital I spoke to Joyce. She gave me the

same update. The only other details I can give is that Joyce told

me that they did test the pressures and they were way down so that

speaks well of the Flolan treatments. She cracked me up because she

said w/ the new stent in and some more improvement in pressures she

should be " skipping " around soon. I said " skipping " huh, I gotta

see that. She said oh, ya there were still those sick lungs to

contend w/. I am really glad they are going to take care of her

teeth while she's in there and before moving the picc line. I spent

the time while my house was being cleaned, outside on my deck w/ my

son. We had 74 degrees, sunny and just a splendid day. We had

lunch, blew bubbles, bird watched w/ binoculars and bird books and

played w/ a beach ball. We hung out, relaxed, played and just

soaked up the springtime and the time together. After that the

house was clean and we napped before picking up my daughter from

school. She was so proud to hand me a notice that she won an award

for art and has a special presentation ceremony next Wednesday

night. After that we did a little shopping for her classroom, for

prizes for a special spring festival and for a student teacher's

going away party. We then did homework out on the deck, had dinner,

went to soccer practice and then home to bathe the kids and put them

to bed. Now is it clear why I'm just now online. Besides having my

normal morning coughing and really struggling to get going this

morning, I had a bonus second coughing fit on the way to practice.

Those pesky moments aside it was a good, productive and really

enjoyable day. Thank goodness for spring. I logged on and saw

Gwynne's update and wow, that is soooo awesome, awesome, awesome. I

needed to make sure you did a Joyce update. And I'll tell ya, I'm

probably a week behind in posts and I just don't have the energy to

read. I'll try to do some catching up tomorrow. Good night all!

Kerry

37 IPF '01 S. IN

>

> Hi Gang!

> I went to clinic yesterday for the first time. The doc says

> my new lung is just perfect... his word. My PFTs (no 6mw)

> seemed to impress the doctors.They said they were some

> of the best first post-tx they've seen. I had labs and a

> chest x-ray, and had the last of the sutures from the chest

> tubes taken out. I was taken down to 40 mg. Prednisone.

> I'm sleeping pretty well, just have bad tremors from it and

> the Prograf. I've switched from Norco to Vicodin for the

> pain, which has improved a bit. The incision (on the

> back, wrapping around to the side - a thoracotomy)

> scar looks great - not too bruised or red at all. I had a

> a big bruise and a hematoma on my neck from either

> the intubation or the ventilator, but they're getting better

> as well, along with dark bruises on my arms. I'm making

> an appointment with a psychiatrist just to have one in place,

> and they're supposed to call me from rehab to see about

> getting set up there. I do some leg exercises they sent me

> home from the hospital with.

>

> I've taken several slow walks outside around the apartment

> complex, in real clothes (a few substitutions though, like

> a camisole). I still get a little winded, and am pretty weak

> when I walk. But when I'm sitting still, I can inhale and

> exhale deeply, and the PFTs didn't make me cough - simply

> incredible. A personal miracle. Amazing, amazing, amazing.

>

> Misha was delivered Monday afternoon - what

> a great reunion that was! The apartment is quite homey

> now that the kids have finished adding little touches

> to warm it up a bit. I could never say enough about how

> good it has been for the three of us to do all this together,

> and how wonderful they've been throughout. Kate and

> are doing a great job with meals and staying

> on top of meds etc. A lot of their stress and frustration

> from the past 4 years has been relieved by doing these

> positive, proactive things that have good results and show

> daily improvement. And it's so good that they're spending

> the time with each other, too. God is so gracious and loving.

>

> Last night my daughter-in-law drove over from Austin

> for dinner and that was lovely. e came down for one

> night, and took my Companion portables back to Ft. Worth

> to return to the supplier. And my nose is already

> beginning to heal from all the years of abuse and crusty,

> bloody crap and terrible soreness. When I think of all of

> you the most is when I pay careful attention to the silence.

> The exquisite silence that a room can now have without a

> nose hose. I can hear my ears ringing again - back to

> normal there. I also ask my air family to say prayers of

> reverence and gratitude for the family of my donor for

> the awesome gift of life.

>

> I'd appreciate it if someone would email me and keep me

> updated about Joyce, who's in my vigilant prayers. Thank

> you so much to all who have offered support, love, and

> prayers. My air family means so much to me. Thanks so

> much to those of you who've made guestbook entries in

> my CaringBridge web page. I'm so moved by each of them.

>

> Hugs and blessings,

> Gwynnie 57 Single lung transplanted 4-3-08 :-o

>

[Guest guest]

Kerry...I'm glad you enjoyed such a nice spring day with you son. Precious memories!

Wish we'd get some spring here in the PNW...still cold and still snow in some areas.

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

Kerry here, thanks Peggy for posting

This is my first time on the computer all day. I didn't worry about it though because I figured and hoped you would update the gang. I think when I first tried calling Joyce this morning she was on the phone w/ you because it was busy. I did talk to her after that. She said she didn't get to her room last night until after 8:30 so that's why it just rang and rang. This morning my son's ear check went fine. After that I stopped by the hospital to do a blood type test for me. The transplant team called me and they said that they needed a second blood typing (they usually do a second one w/ the heart cath, but I didn't have one so I needed to get one done). Driving home from the hospital I spoke to Joyce. She gave me the same update. The only other details I can give is that Joyce told me that they did test the pressures and they were way down so that speaks well of the Flolan treatments. She cracked me up because she said w/ the new stent in and some more improvement in pressures she should be "skipping" around soon. I said "skipping" huh, I gotta see that. She said oh, ya there were still those sick lungs to contend w/. I am really glad they are going to take care of her teeth while she's in there and before moving the picc line. I spent the time while my house was being cleaned, outside on my deck w/ my son. We had 74 degrees, sunny and just a splendid day. We had lunch, blew bubbles, bird watched w/ binoculars and bird books and played w/ a beach ball. We hung out, relaxed, played and just soaked up the springtime and the time together. After that the house was clean and we napped before picking up my daughter from school. She was so proud to hand me a notice that she won an award for art and has a special presentation ceremony next Wednesday night. After that we did a little shopping for her classroom, for prizes for a special spring festival and for a student teacher's going away party. We then did homework out on the deck, had dinner, went to soccer practice and then home to bathe the kids and put them to bed. Now is it clear why I'm just now online. Besides having my normal morning coughing and really struggling to get going this morning, I had a bonus second coughing fit on the way to practice. Those pesky moments aside it was a good, productive and really enjoyable day. Thank goodness for spring. I logged on and saw Gwynne's update and wow, that is soooo awesome, awesome, awesome. I needed to make sure you did a Joyce update. And I'll tell ya, I'm probably a week behind in posts and I just don't have the energy to read. I'll try to do some catching up tomorrow. Good night all!Kerry37 IPF '01 S. IN> > Hi Gang!> I went to clinic yesterday for the first time. The doc says> my new lung is just perfect... his word. My PFTs (no 6mw)> seemed to impress the doctors.They said they were some> of the best first post-tx they've seen. I had labs and a> chest x-ray, and had the last of the sutures from the chest> tubes taken out. I was taken down to 40 mg. Prednisone.> I'm sleeping pretty well, just have bad tremors from it and> the Prograf. I've switched from Norco to Vicodin for the> pain, which has improved a bit. The incision (on the> back, wrapping around to the side - a thoracotomy)> scar looks great - not too bruised or red at all. I had a> a big bruise and a hematoma on my neck from either> the intubation or the ventilator, but they're getting better> as well, along with dark bruises on my arms. I'm making> an appointment with a psychiatrist just to have one in place,> and they're supposed to call me from rehab to see about> getting set up there. I do some leg exercises they sent me> home from the hospital with.> > I've taken several slow walks outside around the apartment> complex, in real clothes (a few substitutions though, like> a camisole). I still get a little winded, and am pretty weak> when I walk. But when I'm sitting still, I can inhale and> exhale deeply, and the PFTs didn't make me cough - simply> incredible. A personal miracle. Amazing, amazing, amazing.> > Misha was delivered Monday afternoon - what> a great reunion that was! The apartment is quite homey> now that the kids have finished adding little touches> to warm it up a bit. I could never say enough about how> good it has been for the three of us to do all this together,> and how wonderful they've been throughout. Kate and> are doing a great job with meals and staying> on top of meds etc. A lot of their stress and frustration> from the past 4 years has been relieved by doing these> positive, proactive things that have good results and show> daily improvement. And it's so good that they're spending> the time with each other, too. God is so gracious and loving.> > Last night my daughter-in-law drove over from Austin> for dinner and that was lovely. e came down for one> night, and took my Companion portables back to Ft. Worth> to return to the supplier. And my nose is already> beginning to heal from all the years of abuse and crusty,> bloody crap and terrible soreness. When I think of all of> you the most is when I pay careful attention to the silence.> The exquisite silence that a room can now have without a> nose hose. I can hear my ears ringing again - back to> normal there. I also ask my air family to say prayers of> reverence and gratitude for the family of my donor for> the awesome gift of life.> > I'd appreciate it if someone would email me and keep me> updated about Joyce, who's in my vigilant prayers. Thank> you so much to all who have offered support, love, and> prayers. My air family means so much to me. Thanks so> much to those of you who've made guestbook entries in> my CaringBridge web page. I'm so moved by each of them.> > Hugs and blessings,> Gwynnie 57 Single lung transplanted 4-3-08 :-o>