Pics & update from Gwynnie

[Guest guest]

Hi Gang,

Well, HERE's something I haven't done in ages -- I've

added 10 photos to my (old) album that were taken on

my Colorado vacation last month. You can see why, if

it weren't for the blood clots putting a halt to the

fun, I did NOT want to come home to 105 degrees and

a lot of the color brown. At least it's a bit cooler now.

Kate's wedding is Sept. 6 - right around the corner -

in Austin, and I'll try to add a few photos after that.

I did my first six minute walk today since about a

month after transplant, and improved my distance by

quite a bit. Big news - I don't have to go to clinic again

until September 29 (once a month). Hooray!!!! I'm down

to 15 mg of Prednisone, decreasing it 2.5 mg per month.

And I haven't gained any weight at all during all this. In

fact, I lost about 10 pounds right after tx and have kept

it off. Bloodwork is weekly, but I can have it done locally

now without driving to Dallas... that was just silly. I would

normally be due for a bronchoscopy now, but can't have it

or the ear tubes (I'm now deaf in my right ear) due to being

on the Coumadin blood thinner.

One thing that is the same pre- or post-transplant is how

much we as patients have to do for ourselves. It amazes me.

There's good communication between my nurse and me,

but I REALLY have to stay on top of things. Just like always.

Keeping up with all the meds - keeping them stocked up,

making occasional adjustments to them, and taking them five

times a day - is challenging and very time-consuming.

Wish I could wave a magic wand every time those pill boxes

need refilling. I always think about Joyce, though, when I

feel like complaining.

Any of you newbies who aren't in pulmonary rehab, yes,

it really can improve your exercise tolerance if you're

still in mild to moderate stages of IPF, or longer. Do it

for as long as you possibly can. It's one way to keep as

strong as you possibly can and keep fighting. I credit even

the pitiful, puny amount I was doing just before transplant

for helping my immediate post-surgical recuperation to

go relatively smoothly. I'll be reaching my five-month

mark September 3.

, I loved seeing a post from you. I'm glad you're

getting out more - me, too. I appreciate being more

mobile soooooooooooooo much. IPF is such a brute

about limiting our activities, and I'm always proud of

everyone here as a group for how hard they apply a good

attitude and determination to a very tough situation.

It goes a long way, as you know.

Sher, I hate that you have pain but am glad that you still

enjoy getting out occasionally. Atta girl! Yes, I do think

my tremors are going to be an ongoing thing for as long

as I'm on anti-rejection medication, which is the rest of

my life. It really sucks, but I can breathe. Maybe someone

will invent a medicine without that side effect. I can hope.

, I'm keeping you and Mike in my thoughts and prayers.

Bruce, I haven't forgotten about lunch. But it will have to

be after Sept. 7 when I return from Austin. Can't wait.

Thinking of you all so fondly.

Hugs and blessings,

Gwynne 57 Single-lung transplant for IPF on 4-3-08 at

UTHSC - San Fort Worth, TX

[Guest guest]

Gwynne

So nice to see the pictures and know you continue to do well. I knew the

wedding was coming up so figured lunch would have to wait.

I just have to reemphasize the one bit of wisdom and experience you sort

of casually snuck in regarding rehab and exercise. You refer to the

pitiful, puny amount you were doing right before transplant. I've always

believed so much of your success was attributable to what you did to

keep going as long as you could before the transplant. The last time I

saw you on 10 lpm resting and 15 lpm moving and difficulty breathing

when you returned to the table and I remember you had to get home for

the rehab therapist and later hearing how many " laps " you did that

afternoon. Now, the laps were within your house and surely not long but

they were exercise and activity that I know kept your body as strong as

it could be. There's not a lot we can do about our lungs, except protect

them from disease and injury. However, we can still do our best to

maintain the rest of our body and that will benefit us all, transplant

or not.

I think of Jane, who used a chair for the long treks in San but

does her exercising as part of her trial. Look how good her numbers are.

I'm like everyone in that sometimes its like whats the point. But, I

think of Gwynne and remember the point. I know when I don't exercise I'm

worse than when I do. If you see me at Disneyworld sometime I'll be

tooling around in a power chair, but then at home I'll be getting on my

treadmill. I had to go 5 days with no exercise for a recent blood test.

I lost a bit and had to get it back. I have to do that again in Sept and

don't like it. So, not to lecture, well maybe yes I am, but unless its

another condition preventing it, there is no one here who can't do some

form of exercise or rehab. You may think its so little as to be silly

and not help but Gwynne can tell you different. It may help on a

transplant or it may just help you retain your mobility a while longer.

Ok, end of lecture.

Oh, yes, it's cooler now, Gwynne. Isn't it sad when we are thankful for

the cooler weather of only reaching 97 degrees today.

>

> Hi Gang,

> Well, HERE's something I haven't done in ages -- I've

> added 10 photos to my (old) album that were taken on

> my Colorado vacation last month. You can see why, if

> it weren't for the blood clots putting a halt to the

> fun, I did NOT want to come home to 105 degrees and

> a lot of the color brown. At least it's a bit cooler now.

>

> Kate's wedding is Sept. 6 - right around the corner -

> in Austin, and I'll try to add a few photos after that.

>

> I did my first six minute walk today since about a

> month after transplant, and improved my distance by

> quite a bit. Big news - I don't have to go to clinic again

> until September 29 (once a month). Hooray!!!! I'm down

> to 15 mg of Prednisone, decreasing it 2.5 mg per month.

> And I haven't gained any weight at all during all this. In

> fact, I lost about 10 pounds right after tx and have kept

> it off. Bloodwork is weekly, but I can have it done locally

> now without driving to Dallas... that was just silly. I would

> normally be due for a bronchoscopy now, but can't have it

> or the ear tubes (I'm now deaf in my right ear) due to being

> on the Coumadin blood thinner.

>

> One thing that is the same pre- or post-transplant is how

> much we as patients have to do for ourselves. It amazes me.

> There's good communication between my nurse and me,

> but I REALLY have to stay on top of things. Just like always.

> Keeping up with all the meds - keeping them stocked up,

> making occasional adjustments to them, and taking them five

> times a day - is challenging and very time-consuming.

> Wish I could wave a magic wand every time those pill boxes

> need refilling. I always think about Joyce, though, when I

> feel like complaining.

>

> Any of you newbies who aren't in pulmonary rehab, yes,

> it really can improve your exercise tolerance if you're

> still in mild to moderate stages of IPF, or longer. Do it

> for as long as you possibly can. It's one way to keep as

> strong as you possibly can and keep fighting. I credit even

> the pitiful, puny amount I was doing just before transplant

> for helping my immediate post-surgical recuperation to

> go relatively smoothly. I'll be reaching my five-month

> mark September 3.

>

> , I loved seeing a post from you. I'm glad you're

> getting out more - me, too. I appreciate being more

> mobile soooooooooooooo much. IPF is such a brute

> about limiting our activities, and I'm always proud of

> everyone here as a group for how hard they apply a good

> attitude and determination to a very tough situation.

> It goes a long way, as you know.

>

> Sher, I hate that you have pain but am glad that you still

> enjoy getting out occasionally. Atta girl! Yes, I do think

> my tremors are going to be an ongoing thing for as long

> as I'm on anti-rejection medication, which is the rest of

> my life. It really sucks, but I can breathe. Maybe someone

> will invent a medicine without that side effect. I can hope.

>

> , I'm keeping you and Mike in my thoughts and prayers.

>

> Bruce, I haven't forgotten about lunch. But it will have to

> be after Sept. 7 when I return from Austin. Can't wait.

>

> Thinking of you all so fondly.

>

> Hugs and blessings,

> Gwynne 57 Single-lung transplant for IPF on 4-3-08 at

> UTHSC - San Fort Worth, TX

>

[Guest guest]

Gwynne,

You're right! It's easy to see why you didn't want to come home and instead wanted to stay in the cool green mountains! It's just beautiful! I'm glad you're doing well and hope that s wedding goes splendidly!

Wanted to add my agreement to your comments about exercise! As long as one has the doctors clearance doing something physical can only do us good. Even just a little bit can help more than we realize.

And on that note I'm off to use the treadmill!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Pics & update from Gwynnie

Hi Gang,Well, HERE's something I haven't done in ages -- I'veadded 10 photos to my (old) album that were taken onmy Colorado vacation last month. You can see why, ifit weren't for the blood clots putting a halt to thefun, I did NOT want to come home to 105 degrees anda lot of the color brown. At least it's a bit cooler now.Kate's wedding is Sept. 6 - right around the corner -in Austin, and I'll try to add a few photos after that.I did my first six minute walk today since about amonth after transplant, and improved my distance byquite a bit. Big news - I don't have to go to clinic againuntil September 29 (once a month). Hooray!!!! I'm downto 15 mg of Prednisone, decreasing it 2.5 mg per month.And I haven't gained any weight at all during all this. Infact, I lost about 10 pounds right after tx and have keptit off. Bloodwork is weekly, but I can have it done locallynow without

driving to Dallas... that was just silly. I wouldnormally be due for a bronchoscopy now, but can't have itor the ear tubes (I'm now deaf in my right ear) due to beingon the Coumadin blood thinner.One thing that is the same pre- or post-transplant is howmuch we as patients have to do for ourselves. It amazes me.There's good communication between my nurse and me,but I REALLY have to stay on top of things. Just like always.Keeping up with all the meds - keeping them stocked up,making occasional adjustments to them, and taking them fivetimes a day - is challenging and very time-consuming.Wish I could wave a magic wand every time those pill boxesneed refilling. I always think about Joyce, though, when Ifeel like complaining.Any of you newbies who aren't in pulmonary rehab, yes,it really can improve your exercise tolerance if you'restill in mild to moderate stages of IPF, or longer. Do

itfor as long as you possibly can. It's one way to keep asstrong as you possibly can and keep fighting. I credit eventhe pitiful, puny amount I was doing just before transplantfor helping my immediate post-surgical recuperation togo relatively smoothly. I'll be reaching my five-monthmark September 3., I loved seeing a post from you. I'm glad you'regetting out more - me, too. I appreciate being moremobile soooooooooooooo much. IPF is such a bruteabout limiting our activities, and I'm always proud ofeveryone here as a group for how hard they apply a goodattitude and determination to a very tough situation.It goes a long way, as you know.Sher, I hate that you have pain but am glad that you stillenjoy getting out occasionally. Atta girl! Yes, I do thinkmy tremors are going to be an ongoing thing for as longas I'm on anti-rejection medication, which is the rest ofmy life. It

really sucks, but I can breathe. Maybe someonewill invent a medicine without that side effect. I can hope., I'm keeping you and Mike in my thoughts and prayers.Bruce, I haven't forgotten about lunch. But it will have tobe after Sept. 7 when I return from Austin. Can't wait.Thinking of you all so fondly.Hugs and blessings,Gwynne 57 Single-lung transplant for IPF on 4-3-08 atUTHSC - San Fort Worth, TX

[Guest guest]

Gwynne, I would love to go sit by that stream. I love them. What a beautiful place. You look "Marvelous Dalin" It is just wonderful to hear you are really enjoying life to it's fullest. Bravo. looks like a happily married man.. And your Dad is a very handsome man. Misha just steals the show. Keep us posted on the Wedding. I just know it will be beautiful. We will be looking for pictures.Take care of you.. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hi Gang,Well, HERE's something I haven't done in ages -- I'veadded 10 photos to my (old) album that were taken onmy Colorado vacation last month. You can see why, ifit weren't for the blood clots putting a halt to thefun, I did NOT want to come home to 105 degrees anda lot of the color brown. At least it's a bit cooler now.Kate's wedding is Sept. 6 - right around the corner -in Austin, and I'll try to add a few photos after that.I did my first six minute walk today since about amonth after transplant, and improved my distance byquite a bit. Big news - I don't have to go to clinic againuntil September 29 (once a month). Hooray!!!! I'm downto 15 mg of Prednisone, decreasing it 2.5 mg per month.And I haven't gained any weight at all during all this. Infact, I lost about 10 pounds right after tx and have keptit off. Bloodwork is weekly, but I can have it done locallynow without driving to Dallas... that was just silly. I wouldnormally be due for a bronchoscopy now, but can't have itor the ear tubes (I'm now deaf in my right ear) due to beingon the Coumadin blood thinner.One thing that is the same pre- or post-transplant is howmuch we as patients have to do for ourselves. It amazes me.There's good communication between my nurse and me,but I REALLY have to stay on top of things. Just like always.Keeping up with all the meds - keeping them stocked up,making occasional adjustments to them, and taking them fivetimes a day - is challenging and very time-consuming.Wish I could wave a magic wand every time those pill boxesneed refilling. I always think about Joyce, though, when Ifeel like complaining.Any of you newbies who aren't in pulmonary rehab, yes,it really can improve your exercise tolerance if you'restill in mild to moderate stages of IPF, or longer. Do itfor as long as you possibly can. It's one way to keep asstrong as you possibly can and keep fighting. I credit eventhe pitiful, puny amount I was doing just before transplantfor helping my immediate post-surgical recuperation togo relatively smoothly. I'll be reaching my five-monthmark September 3., I loved seeing a post from you. I'm glad you'regetting out more - me, too. I appreciate being moremobile soooooooooooooo much. IPF is such a bruteabout limiting our activities, and I'm always proud ofeveryone here as a group for how hard they apply a goodattitude and determination to a very tough situation.It goes a long way, as you know.Sher, I hate that you have pain but am glad that you stillenjoy getting out occasionally. Atta girl! Yes, I do thinkmy tremors are going to be an ongoing thing for as longas I'm on anti-rejection medication, which is the rest ofmy life. It really sucks, but I can breathe. Maybe someonewill invent a medicine without that side effect. I can hope., I'm keeping you and Mike in my thoughts and prayers.Bruce, I haven't forgotten about lunch. But it will have tobe after Sept. 7 when I return from Austin. Can't wait.Thinking of you all so fondly.Hugs and blessings,Gwynne 57 Single-lung transplant for IPF on 4-3-08 atUTHSC - San Fort Worth, TX

[Guest guest]

Gwynnie,

So glad to hear from you. Glad you are doing so well. WOW. The

Colorado pics are BEAUTIFUL. Thank you so much for the update.

Continue keeping on....You look MAVELOUS, dahlink.

Leanne uip 1/03 Illinois

[Guest guest]

Gwynnie ... so good to get an update from you! I guess in the B I G picture, the tremors are a price worth paying for breathing, although I know how bothersome tremors are.

The dosage on the pain patch has been decreased due to those all too familiar side effects. The pain level is rising now though. The pain clinic where I go tell me there isn't much more to "try".

I'm really glad "medical stuff" is getting a bit easier now, like not driving to Dallas and going to clinic once a month.

I wish you good days every day my friend!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pics & update from Gwynnie

Hi Gang,Well, HERE's something I haven't done in ages -- I'veadded 10 photos to my (old) album that were taken onmy Colorado vacation last month. You can see why, ifit weren't for the blood clots putting a halt to thefun, I did NOT want to come home to 105 degrees anda lot of the color brown. At least it's a bit cooler now.Kate's wedding is Sept. 6 - right around the corner -in Austin, and I'll try to add a few photos after that.I did my first six minute walk today since about amonth after transplant, and improved my distance byquite a bit. Big news - I don't have to go to clinic againuntil September 29 (once a month). Hooray!!!! I'm downto 15 mg of Prednisone, decreasing it 2.5 mg per month.And I haven't gained any weight at all during all this. Infact, I lost about 10 pounds right after tx and have keptit off. Bloodwork is weekly, but I can have it done locallynow without driving to Dallas... that was just silly. I wouldnormally be due for a bronchoscopy now, but can't have itor the ear tubes (I'm now deaf in my right ear) due to beingon the Coumadin blood thinner.One thing that is the same pre- or post-transplant is howmuch we as patients have to do for ourselves. It amazes me.There's good communication between my nurse and me,but I REALLY have to stay on top of things. Just like always.Keeping up with all the meds - keeping them stocked up,making occasional adjustments to them, and taking them fivetimes a day - is challenging and very time-consuming.Wish I could wave a magic wand every time those pill boxesneed refilling. I always think about Joyce, though, when Ifeel like complaining.Any of you newbies who aren't in pulmonary rehab, yes,it really can improve your exercise tolerance if you'restill in mild to moderate stages of IPF, or longer. Do itfor as long as you possibly can. It's one way to keep asstrong as you possibly can and keep fighting. I credit eventhe pitiful, puny amount I was doing just before transplantfor helping my immediate post-surgical recuperation togo relatively smoothly. I'll be reaching my five-monthmark September 3., I loved seeing a post from you. I'm glad you'regetting out more - me, too. I appreciate being moremobile soooooooooooooo much. IPF is such a bruteabout limiting our activities, and I'm always proud ofeveryone here as a group for how hard they apply a goodattitude and determination to a very tough situation.It goes a long way, as you know.Sher, I hate that you have pain but am glad that you stillenjoy getting out occasionally. Atta girl! Yes, I do thinkmy tremors are going to be an ongoing thing for as longas I'm on anti-rejection medication, which is the rest ofmy life. It really sucks, but I can breathe. Maybe someonewill invent a medicine without that side effect. I can hope., I'm keeping you and Mike in my thoughts and prayers.Bruce, I haven't forgotten about lunch. But it will have tobe after Sept. 7 when I return from Austin. Can't wait.Thinking of you all so fondly.Hugs and blessings,Gwynne 57 Single-lung transplant for IPF on 4-3-08 atUTHSC - San Fort Worth, TX

[Guest guest]

Gwynnie... I wish you could be the poster gal for transplant! You look the picture of health. No O2 on your nose. Oh I'm so glad for you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pics & update from Gwynnie

Hi Gang,Well, HERE's something I haven't done in ages -- I'veadded 10 photos to my (old) album that were taken onmy Colorado vacation last month. You can see why, ifit weren't for the blood clots putting a halt to thefun, I did NOT want to come home to 105 degrees anda lot of the color brown. At least it's a bit cooler now.Kate's wedding is Sept. 6 - right around the corner -in Austin, and I'll try to add a few photos after that.I did my first six minute walk today since about amonth after transplant, and improved my distance byquite a bit. Big news - I don't have to go to clinic againuntil September 29 (once a month). Hooray!!!! I'm downto 15 mg of Prednisone, decreasing it 2.5 mg per month.And I haven't gained any weight at all during all this. Infact, I lost about 10 pounds right after tx and have keptit off. Bloodwork is weekly, but I can have it done locallynow without driving to Dallas... that was just silly. I wouldnormally be due for a bronchoscopy now, but can't have itor the ear tubes (I'm now deaf in my right ear) due to beingon the Coumadin blood thinner.One thing that is the same pre- or post-transplant is howmuch we as patients have to do for ourselves. It amazes me.There's good communication between my nurse and me,but I REALLY have to stay on top of things. Just like always.Keeping up with all the meds - keeping them stocked up,making occasional adjustments to them, and taking them fivetimes a day - is challenging and very time-consuming.Wish I could wave a magic wand every time those pill boxesneed refilling. I always think about Joyce, though, when Ifeel like complaining.Any of you newbies who aren't in pulmonary rehab, yes,it really can improve your exercise tolerance if you'restill in mild to moderate stages of IPF, or longer. Do itfor as long as you possibly can. It's one way to keep asstrong as you possibly can and keep fighting. I credit eventhe pitiful, puny amount I was doing just before transplantfor helping my immediate post-surgical recuperation togo relatively smoothly. I'll be reaching my five-monthmark September 3., I loved seeing a post from you. I'm glad you'regetting out more - me, too. I appreciate being moremobile soooooooooooooo much. IPF is such a bruteabout limiting our activities, and I'm always proud ofeveryone here as a group for how hard they apply a goodattitude and determination to a very tough situation.It goes a long way, as you know.Sher, I hate that you have pain but am glad that you stillenjoy getting out occasionally. Atta girl! Yes, I do thinkmy tremors are going to be an ongoing thing for as longas I'm on anti-rejection medication, which is the rest ofmy life. It really sucks, but I can breathe. Maybe someonewill invent a medicine without that side effect. I can hope., I'm keeping you and Mike in my thoughts and prayers.Bruce, I haven't forgotten about lunch. But it will have tobe after Sept. 7 when I return from Austin. Can't wait.Thinking of you all so fondly.Hugs and blessings,Gwynne 57 Single-lung transplant for IPF on 4-3-08 atUTHSC - San Fort Worth, TX

[Guest guest]

HEY GANG! I MISPLACED THE PHONE # FOR THE CONFERENCE CALL TONIGHT. PLEASE SEND AGAIN, JOE AND I WANT TO BE ON...THANKS, THE OLDER I GET I PRINT MORE OFF, BUT THEN WHERE DID I PUT IT????JOANIE

-- Re: Pics & update from Gwynnie

Gwynnie ... so good to get an update from you! I guess in the B I G picture, the tremors are a price worth paying for breathing, although I know how bothersome tremors are.

The dosage on the pain patch has been decreased due to those all too familiar side effects. The pain level is rising now though. The pain clinic where I go tell me there isn't much more to "try".

I'm really glad "medical stuff" is getting a bit easier now, like not driving to Dallas and going to clinic once a month.

I wish you good days every day my friend!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pics & update from Gwynnie

Hi Gang,Well, HERE's something I haven't done in ages -- I'veadded 10 photos to my (old) album that were taken onmy Colorado vacation last month. You can see why, ifit weren't for the blood clots putting a halt to thefun, I did NOT want to come home to 105 degrees anda lot of the color brown. At least it's a bit cooler now.Kate's wedding is Sept. 6 - right around the corner -in Austin, and I'll try to add a few photos after that.I did my first six minute walk today since about amonth after transplant, and improved my distance byquite a bit. Big news - I don't have to go to clinic againuntil September 29 (once a month). Hooray!!!! I'm downto 15 mg of Prednisone, decreasing it 2.5 mg per month.And I haven't gained any weight at all during all this. Infact, I lost about 10 pounds right after tx and have keptit off. Bloodwork is weekly, but I can have it done locallynow without driving to Dallas... that was just silly. I wouldnormally be due for a bronchoscopy now, but can't have itor the ear tubes (I'm now deaf in my right ear) due to beingon the Coumadin blood thinner.One thing that is the same pre- or post-transplant is howmuch we as patients have to do for ourselves. It amazes me.There's good communication between my nurse and me,but I REALLY have to stay on top of things. Just like always.Keeping up with all the meds - keeping them stocked up,making occasional adjustments to them, and taking them fivetimes a day - is challenging and very time-consuming.Wish I could wave a magic wand every time those pill boxesneed refilling. I always think about Joyce, though, when Ifeel like complaining.Any of you newbies who aren't in pulmonary rehab, yes,it really can improve your exercise tolerance if you'restill in mild to moderate stages of IPF, or longer. Do itfor as long as you possibly can. It's one way to keep asstrong as you possibly can and keep fighting. I credit eventhe pitiful, puny amount I was doing just before transplantfor helping my immediate post-surgical recuperation togo relatively smoothly. I'll be reaching my five-monthmark September 3., I loved seeing a post from you. I'm glad you'regetting out more - me, too. I appreciate being moremobile soooooooooooooo much. IPF is such a bruteabout limiting our activities, and I'm always proud ofeveryone here as a group for how hard they apply a goodattitude and determination to a very tough situation.It goes a long way, as you know.Sher, I hate that you have pain but am glad that you stillenjoy getting out occasionally. Atta girl! Yes, I do thinkmy tremors are going to be an ongoing thing for as longas I'm on anti-rejection medication, which is the rest ofmy life. It really sucks, but I can breathe. Maybe someonewill invent a medicine without that side effect. I can hope., I'm keeping you and Mike in my thoughts and prayers.Bruce, I haven't forgotten about lunch. But it will have tobe after Sept. 7 when I return from Austin. Can't wait.Thinking of you all so fondly.Hugs and blessings,Gwynne 57 Single-lung transplant for IPF on 4-3-08 atUTHSC - San Fort Worth, TX

[Guest guest]

I FOUND IT! I FOUND IT! IT WAS ON JOE'S END TABLE..TALK TO YOU TONIGHT...THANKS ANYWAY!!! JOANIE

-- Re: Pics & update from Gwynnie

Gwynnie ... so good to get an update from you! I guess in the B I G picture, the tremors are a price worth paying for breathing, although I know how bothersome tremors are.

The dosage on the pain patch has been decreased due to those all too familiar side effects. The pain level is rising now though. The pain clinic where I go tell me there isn't much more to "try".

I'm really glad "medical stuff" is getting a bit easier now, like not driving to Dallas and going to clinic once a month.

I wish you good days every day my friend!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Pics & update from Gwynnie

Hi Gang,Well, HERE's something I haven't done in ages -- I'veadded 10 photos to my (old) album that were taken onmy Colorado vacation last month. You can see why, ifit weren't for the blood clots putting a halt to thefun, I did NOT want to come home to 105 degrees anda lot of the color brown. At least it's a bit cooler now.Kate's wedding is Sept. 6 - right around the corner -in Austin, and I'll try to add a few photos after that.I did my first six minute walk today since about amonth after transplant, and improved my distance byquite a bit. Big news - I don't have to go to clinic againuntil September 29 (once a month). Hooray!!!! I'm downto 15 mg of Prednisone, decreasing it 2.5 mg per month.And I haven't gained any weight at all during all this. Infact, I lost about 10 pounds right after tx and have keptit off. Bloodwork is weekly, but I can have it done locallynow without driving to Dallas... that was just silly. I wouldnormally be due for a bronchoscopy now, but can't have itor the ear tubes (I'm now deaf in my right ear) due to beingon the Coumadin blood thinner.One thing that is the same pre- or post-transplant is howmuch we as patients have to do for ourselves. It amazes me.There's good communication between my nurse and me,but I REALLY have to stay on top of things. Just like always.Keeping up with all the meds - keeping them stocked up,making occasional adjustments to them, and taking them fivetimes a day - is challenging and very time-consuming.Wish I could wave a magic wand every time those pill boxesneed refilling. I always think about Joyce, though, when Ifeel like complaining.Any of you newbies who aren't in pulmonary rehab, yes,it really can improve your exercise tolerance if you'restill in mild to moderate stages of IPF, or longer. Do itfor as long as you possibly can. It's one way to keep asstrong as you possibly can and keep fighting. I credit eventhe pitiful, puny amount I was doing just before transplantfor helping my immediate post-surgical recuperation togo relatively smoothly. I'll be reaching my five-monthmark September 3., I loved seeing a post from you. I'm glad you'regetting out more - me, too. I appreciate being moremobile soooooooooooooo much. IPF is such a bruteabout limiting our activities, and I'm always proud ofeveryone here as a group for how hard they apply a goodattitude and determination to a very tough situation.It goes a long way, as you know.Sher, I hate that you have pain but am glad that you stillenjoy getting out occasionally. Atta girl! Yes, I do thinkmy tremors are going to be an ongoing thing for as longas I'm on anti-rejection medication, which is the rest ofmy life. It really sucks, but I can breathe. Maybe someonewill invent a medicine without that side effect. I can hope., I'm keeping you and Mike in my thoughts and prayers.Bruce, I haven't forgotten about lunch. But it will have tobe after Sept. 7 when I return from Austin. Can't wait.Thinking of you all so fondly.Hugs and blessings,Gwynne 57 Single-lung transplant for IPF on 4-3-08 atUTHSC - San Fort Worth, TX

[Guest guest]

Gwynne, It's nice to see a post from you.

The pictures are wonderful.

Mike is fine now..He'll need an out-patient procedure that's like a

cath but via a vein as opposed to

and artery ( ablation I think) to correct the electrical problem that

caused the tachycardia.

Until then he has meds to keep his heart rate lowered. He golfed

today!!!

So, I guess he's OK!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Gwynne Keyland wrote:

Hi Gang,

Well, HERE's something I haven't done in ages -- I've

added 10 photos to my (old) album that were taken on

my Colorado vacation last month. You can see why, if

it weren't for the blood clots putting a halt to the

fun, I did NOT want to come home to 105 degrees and

a lot of the color brown. At least it's a bit cooler now.

Kate's wedding is Sept. 6 - right around the corner -

in Austin, and I'll try to add a few photos after that.

I did my first six minute walk today since about a

month after transplant, and improved my distance by

quite a bit. Big news - I don't have to go to clinic again

until September 29 (once a month). Hooray!!!! I'm down

to 15 mg of Prednisone, decreasing it 2.5 mg per month.

And I haven't gained any weight at all during all this. In

fact, I lost about 10 pounds right after tx and have kept

it off. Bloodwork is weekly, but I can have it done locally

now without driving to Dallas... that was just silly. I would

normally be due for a bronchoscopy now, but can't have it

or the ear tubes (I'm now deaf in my right ear) due to being

on the Coumadin blood thinner.

One thing that is the same pre- or post-transplant is how

much we as patients have to do for ourselves. It amazes me.

There's good communication between my nurse and me,

but I REALLY have to stay on top of things. Just like always.

Keeping up with all the meds - keeping them stocked up,

making occasional adjustments to them, and taking them five

times a day - is challenging and very time-consuming.

Wish I could wave a magic wand every time those pill boxes

need refilling. I always think about Joyce, though, when I

feel like complaining.

Any of you newbies who aren't in pulmonary rehab, yes,

it really can improve your exercise tolerance if you're

still in mild to moderate stages of IPF, or longer. Do it

for as long as you possibly can. It's one way to keep as

strong as you possibly can and keep fighting. I credit even

the pitiful, puny amount I was doing just before transplant

for helping my immediate post-surgical recuperation to

go relatively smoothly. I'll be reaching my five-month

mark September 3.

, I loved seeing a post from you. I'm glad you're

getting out more - me, too. I appreciate being more

mobile soooooooooooooo much. IPF is such a brute

about limiting our activities, and I'm always proud of

everyone here as a group for how hard they apply a good

attitude and determination to a very tough situation.

It goes a long way, as you know.

Sher, I hate that you have pain but am glad that you still

enjoy getting out occasionally. Atta girl! Yes, I do think

my tremors are going to be an ongoing thing for as long

as I'm on anti-rejection medication, which is the rest of

my life. It really sucks, but I can breathe. Maybe someone

will invent a medicine without that side effect. I can hope.

, I'm keeping you and Mike in my thoughts and prayers.

Bruce, I haven't forgotten about lunch. But it will have to

be after Sept. 7 when I return from Austin. Can't wait.

Thinking of you all so fondly.

Hugs and blessings,

Gwynne 57 Single-lung transplant for IPF on 4-3-08 at

UTHSC - San Fort Worth, TX

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