Joyce

[Guest guest]

Joyce, I am so glad to see you posting. There is just no keeping you

down, my friend! You and Gwynne make me look like a piker. (piker,

that is a funny word, I think my grandpa used to say that) I hope you

continue to improve. I appreciate you taking the time to share when

there is so much going on in your life.

Blessings,

Kathie WA

NSIP '96, etc.

> >

> >

> > Just lately I've been really tired. Unreasonably tired for what

I've

> > been doing during the day, and that's taking the PF into account.

I

> > have to have a snooze in the morning after everyone else has gone

to

> > school or work, and then have another snooze in the afternoon

after

> I've

> > done the school run. If I don't then I end up crashing out and

feeling

> > worse for it. I've only been like this for a couple of weeks. I'm

on

> > antibiotics at the moment, but they're the ones I usually take and

> they

> > don't usually make me drowsy. I've also got itchy skin, and not in

> > areas that are exposed to the sunlight. My other meds haven't

changed

> > for a long time, and I'm still on pred. I'm waiting to get some

> > results from the hospital before I visit my gp, but I was

wondering if

> > any of you had any ideas.

> >

> > Thanks

> >

> > Love Ze xx

> >

>

[Guest guest]

Can you tell me why you were rejected for a transplant? You might have alredy shared that, but I don't remember. K Illinoisdenise randel wrote: Joyce, I am moved and just unpacking boxes ( when I complained about the mess in my room, my 5 year old grandson told me to just stick the mess in the closet, that's what he does when his mommy tells him to clean his

room!). I love my new house and I love living with my grandkids. Lots of commotion, but it is so good to wake up to babies laughing. I could sit all day and watch them play spiderman and chase other and catch rollie pollies. My new Masters class started this week and is keeping me busy-but good busy. I am worried about your spots too. Glad you are seeing your doc tomorrow. I hope he has some answers for you ( and a new improved surgeon). God bless you Joyce- Sarcoid/PF 3/2006 California More problems> > > I am having problems with the Hickman Catheter that was inserted into my heart on the 19th of April. If you remember, this was the surgery that was so painful, where I was

wide awake when I was supposed to be asleep. The surgeon and I had words the next day. He said a few smart remarks and I said a few smart remarks and he left the room. > Well, this thing has never stopped bleeding. I am on Coumadin and everything is bleeding. My nose particularly. I am tested every week and meds are adjusted, but they evidently can get out of whack between sticks. Today my stick showed that I am severely anemic. I have been so very tired. My IRN, the measure of clotting, was way too high. So, adjustments have been made. Doc put me on Ferrous Sulfate for six months. > Not only is this catheter still bleeding, there are lesions on my skin out from the site. My primary told me that I should see the surgeon about all this. I told him that I would not go back to see this creep. He said that another surgeon would not touch the original surgeons work.

What is this? The brotherhood? > I called my primary later in the day and asked what I could do about the lesions. He told me to get Betadine and clean them twice a day. Bloodwork showed no actual infection going on, so this is what I will do. > I am just astounded that in order to ever get anything done to or about this stupid catheter will have to involve that inept doc. I am going to look into that. Good grief!> Sometimes I wish I had never started all this complicated mess. I am getting so tired of all the hospital time and labs and doctor visits. I am thankful for prayers answered. Think I am just so beaten up right now. > O.K., enough of being angry.....back to pouting!> 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> > > > ____________ _________ _________ _________ _________ _________ _________ _________ _________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

,

I have Coronary Artery Disease. I have Lupus which includes anticardiolipid antibodies that cause my blood to clot. These were the main reasons given.

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 > >> > Joyce,> > I can't believe you are going through so much misery. I so wish there was something I could do. There has got to be another surgeon than the sadist you went to. Is there an advocate at the hospital who could help? I am praying and at the same time wishing I had a magic wand or a connection to a great surgeon-> > > > Sarcoid/PF 3/2006 California> > > > > > > > > > More problems> > > > > > I am having problems with the Hickman Catheter that was inserted into my heart on the 19th of April. If you remember, this was the surgery that was so painful, where I was wide awake when I was supposed to be asleep. The surgeon and I had words the next day. He said a few smart remarks and I said a few smart remarks and he left the room. > > Well, this thing has never stopped bleeding. I am on Coumadin and everything is bleeding. My nose particularly. I am tested every week and meds are adjusted, but they evidently can get out of whack between sticks. Today my stick showed that I am severely anemic. I have been so very tired. My IRN, the measure of clotting, was way too high. So, adjustments have been made. Doc put me on Ferrous Sulfate for six months. > > Not only is this catheter still bleeding, there are lesions on my skin out from the site. My primary told me that I should see the surgeon about all this. I told him that I would not go back to see this creep. He said that another surgeon would not touch the original surgeons work. What is this? The brotherhood? > > I called my primary later in the day and asked what I could do about the lesions. He told me to get Betadine and clean them twice a day. Bloodwork showed no actual infection going on, so this is what I will do. > > I am just astounded that in order to ever get anything done to or about this stupid catheter will have to involve that inept doc. I am going to look into that. Good grief!> > Sometimes I wish I had never started all this complicated mess. I am getting so tired of all the hospital time and labs and doctor visits. I am thankful for prayers answered. Think I am just so beaten up right now. > > O.K., enough of being angry.....back to pouting!> > 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> > > > > > > > ____________ _________ _________ _________ _________ _________ _________ _________ _________> > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ> >> > > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14> > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

Joyce, It sounds like the creeping crud. OOPS that sounded nasty huh?? I can't believe it. I'm praying for you. Did you get the pictures and instructions in your hotmail address ??? I think there were about 8 pictures. I have ordered more Bibles and will take more step by step.I love ya and hope you are Blessed this day. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Jane,Yes, it itches.  Some of the places itch worse than others.  The doc did not follow through.  He did not call a prescription in, nor did he get my appt. moved.  Aaargh.  My back is just covered. I just needed one more thing to deal with!!!I am wondering if they will have to lessen my dosage on the Flolan.  They raised it while I was in the hospital this last time and that is when the rash began. Thanks Jane,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 > >> > Aahahhh Joyce....not more to deal with! You are surely a walking> miracle and at least I have known one. There are many on this board but> what you have and do deal with is beyond words.> > I know you are under good care (right???)> > and someone soon will find an answer.> > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> sorry. What can I say but....DAMNIT!> > God Bless you over and over again.> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > Don't fret about tomorrow, God is already there!> >> > Update> >> >> >> > Hi All,> >> > I just wanted you all to know that I am getting a little stronger> every day. I have stopped bleeding from my chest catheter (which worried> me to death). Flolan seems to be working, thank God.> >> > I mentioned to you all about the rash, think I called them lesions.> They look like splotches of little blisters and they are bright red.> Well, I have about a million now. My back is covered. Some larger than a> quarter. I look like I have the black plague!!!! The pulmo looked at> them when I was there a week ago....said it looked like Eczema. His> secretary made me an appt. with a dermatologist but not until June 5.> Well, I have so many new splotches since then. Last night I e-mailed the> doc to tell him that I had read online that Eczema rash was a side> effect of Flolan (if he knew this last week, he didn't say it)> so.....this morning he e-mailed back to say he is sending out a steroid> cream and that he is calling to see if he can get my appt with the derm> moved up. My big worry is that the spots are beginning to come up> underneath the sterile bandage. I can only change is once a week so how> am I to treat the spots under there with a topical cream???> >> > The splotches are spreading onto my arms and legs now ..... and my> head even itches. I just look more and more beautiful every day. My face> is continually red from the flushing. I look so healthy...ha! ha! People> keep telling me how good I am looking. No need for a blusher for me.> Lipstick either....I have nice purple lips!> >> > Well, the saga continues and so do I. I continue to thank God for> every day. He has pulled me out of the valley of death so many times. I> am just thankful for every day.> >> > And, I thank God for all of you.> >> > 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> >>

[Guest guest]

Peggy,

No, I didn't get it on my hotmail. Odd, because I get mail from you all the time.

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> > >> > > Aahahhh Joyce....not more to deal with! You are surely a walking> > miracle and at least I have known one. There are many on this > board but> > what you have and do deal with is beyond words.> > > I know you are under good care (right???)> > > and someone soon will find an answer.> > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > sorry. What can I say but....DAMNIT!> > > God Bless you over and over again.> > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > Don't fret about tomorrow, God is already there!> > >> > > Update> > >> > >> > >> > > Hi All,> > >> > > I just wanted you all to know that I am getting a little stronger> > every day. I have stopped bleeding from my chest catheter (which > worried> > me to death). Flolan seems to be working, thank God.> > >> > > I mentioned to you all about the rash, think I called them lesions.> > They look like splotches of little blisters and they are bright red.> > Well, I have about a million now. My back is covered. Some larger > than a> > quarter. I look like I have the black plague!!!! The pulmo looked at> > them when I was there a week ago....said it looked like Eczema. His> > secretary made me an appt. with a dermatologist but not until June 5.> > Well, I have so many new splotches since then. Last night I e- > mailed the> > doc to tell him that I had read online that Eczema rash was a side> > effect of Flolan (if he knew this last week, he didn't say it)> > so.....this morning he e-mailed back to say he is sending out a > steroid> > cream and that he is calling to see if he can get my appt with the > derm> > moved up. My big worry is that the spots are beginning to come up> > underneath the sterile bandage. I can only change is once a week > so how> > am I to treat the spots under there with a topical cream???> > >> > > The splotches are spreading onto my arms and legs now ..... and my> > head even itches. I just look more and more beautiful every day. > My face> > is continually red from the flushing. I look so healthy...ha! ha! > People> > keep telling me how good I am looking. No need for a blusher for me.> > Lipstick either....I have nice purple lips!> > >> > > Well, the saga continues and so do I. I continue to thank God for> > every day. He has pulled me out of the valley of death so many > times. I> > am just thankful for every day.> > >> > > And, I thank God for all of you.> > >> > > 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> > >> >>

[Guest guest]

Joyce I re-sent it. let me know. It could be there are to many pictures. Peggy,No, I didn't get it on my hotmail.  Odd, because I get mail from you all the time. 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> > >> > > Aahahhh Joyce....not more to deal with! You are surely a walking> > miracle and at least I have known one. There are many on this > board but> > what you have and do deal with is beyond words.> > > I know you are under good care (right???)> > > and someone soon will find an answer.> > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > sorry. What can I say but....DAMNIT!> > > God Bless you over and over again.> > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > Don't fret about tomorrow, God is already there!> > >> > > Update> > >> > >> > >> > > Hi All,> > >> > > I just wanted you all to know that I am getting a little stronger> > every day. I have stopped bleeding from my chest catheter (which > worried> > me to death). Flolan seems to be working, thank God.> > >> > > I mentioned to you all about the rash, think I called them lesions.> > They look like splotches of little blisters and they are bright red.> > Well, I have about a million now. My back is covered. Some larger > than a> > quarter. I look like I have the black plague!!!! The pulmo looked at> > them when I was there a week ago....said it looked like Eczema. His> > secretary made me an appt. with a dermatologist but not until June 5.> > Well, I have so many new splotches since then. Last night I e- > mailed the> > doc to tell him that I had read online that Eczema rash was a side> > effect of Flolan (if he knew this last week, he didn't say it)> > so.....this morning he e-mailed back to say he is sending out a > steroid> > cream and that he is calling to see if he can get my appt with the > derm> > moved up. My big worry is that the spots are beginning to come up> > underneath the sterile bandage. I can only change is once a week > so how> > am I to treat the spots under there with a topical cream???> > >> > > The splotches are spreading onto my arms and legs now ..... and my> > head even itches. I just look more and more beautiful every day. > My face> > is continually red from the flushing. I look so healthy...ha! ha! > People> > keep telling me how good I am looking. No need for a blusher for me.> > Lipstick either....I have nice purple lips!> > >> > > Well, the saga continues and so do I. I continue to thank God for> > every day. He has pulled me out of the valley of death so many > times. I> > am just thankful for every day.> > >> > > And, I thank God for all of you.> > >> > > 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> > >> >>

[Guest guest]

Peggy,

Nope, but don't worry about it. I bet it is the picture thing, too.

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> > > >> > > > Aahahhh Joyce....not more to deal with! You are surely a walking> > > miracle and at least I have known one. There are many on this> > board but> > > what you have and do deal with is beyond words.> > > > I know you are under good care (right???)> > > > and someone soon will find an answer.> > > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > > sorry. What can I say but....DAMNIT!> > > > God Bless you over and over again.> > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > > Don't fret about tomorrow, God is already there!> > > >> > > > Update> > > >> > > >> > > >> > > > Hi All,> > > >> > > > I just wanted you all to know that I am getting a little stronger> > > every day. I have stopped bleeding from my chest catheter (which> > worried> > > me to death). Flolan seems to be working, thank God.> > > >> > > > I mentioned to you all about the rash, think I called them > lesions.> > > They look like splotches of little blisters and they are bright > red.> > > Well, I have about a million now. My back is covered. Some larger> > than a> > > quarter. I look like I have the black plague!!!! The pulmo > looked at> > > them when I was there a week ago....said it looked like Eczema. His> > > secretary made me an appt. with a dermatologist but not until > June 5.> > > Well, I have so many new splotches since then. Last night I e-> > mailed the> > > doc to tell him that I had read online that Eczema rash was a side> > > effect of Flolan (if he knew this last week, he didn't say it)> > > so.....this morning he e-mailed back to say he is sending out a> > steroid> > > cream and that he is calling to see if he can get my appt with the> > derm> > > moved up. My big worry is that the spots are beginning to come up> > > underneath the sterile bandage. I can only change is once a week> > so how> > > am I to treat the spots under there with a topical cream???> > > >> > > > The splotches are spreading onto my arms and legs now ..... > and my> > > head even itches. I just look more and more beautiful every day.> > My face> > > is continually red from the flushing. I look so healthy...ha! ha!> > People> > > keep telling me how good I am looking. No need for a blusher for > me.> > > Lipstick either....I have nice purple lips!> > > >> > > > Well, the saga continues and so do I. I continue to thank God for> > > every day. He has pulled me out of the valley of death so many> > times. I> > > am just thankful for every day.> > > >> > > > And, I thank God for all of you.> > > >> > > > 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> > > >> > >> >>

[Guest guest]

Joyce, My Pleasure, did you see the link I left before, it is so nice. If you missed it I'll send it again !!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

Gwynne's mom died> > > Just wanted to tell everyone the sad news that my> mother died last night. She had been battling pneumonia,> but seemed to be getting better until taking a sharp> downward turn two nights ago. She nearly didn't make> it through the night, and the next day my dad had a> hospital bed and Hospice in to help. It was obvious from> her sats, pulse rate, labored and loud breathing that> death was imminent. As difficult as it is for all of us,> we know she's in a better place and we're relieved> that this last episode happened in a hurry.> > It is a blessing that she was at home, and the> whole family including both my kids were surrounding> her

(although she wasn't responsive at that point). She> knew about the transplant and got to see me once without> oxygen after I got back home - another blessing. She> might well have been waiting for that to happen before> she gave up the fight.> > Another blessing is that since my mom battled Alzheimer's> and Bronchiectasis, and she had been fighting so hard for> the past 6 years, that we didn't have another six years of> watching her Alzheimer's deteriorate into something much> worse than it currently was. She was so frail and everything> was a such a struggle for her - she deserves a heavenly rest.> I feel a hole in my soul, and I'm particularly exhausted> given that I'm still in recuperation mode. Life can sure> be a roller coaster. Please pray for my father and for our> whole family as we thank God for the life of this wonderful> woman who

blessed all of our lives and was so dearly loved.> > Love to all,> Gwynnie 57 Single-lung transplant on 4-3-08 at> UTHSC San , TX>