Re:

[Guest guest]

Mama Sher, where did you have yours checked out at so when Joe's arrive we can rest assured it is working properly. Also after I receive the bill, etc. I am going to submit to insurance and see if we cannot be reimbursed. Love

  JOE/JOANIE JOE 59 IPF1/2008

-- Re:

 J/J I bought that same one Joe and it works just fine. I had mine checked and it was off only one number. Don't drive yourself crazy checking all the time now.

Hugs.

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

Re: Terry POk, here I am again. It puts it at the very bottom of all the emails. How can I get it to put it at the bottom of mine instead of the very bottom. I'm so helpless when it comes to stuff like this. Kcentral I,.Terry Pennisi wrote:Joyce,Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!Does this crap play with your mind? I wonder. Anyway, hope you read the right one!Love and prayers,TerryTerry Pennisi 11/07 IPF Nevada You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]



J/J ... You can get it checked at a hospital or your Drs. office. I happened to be in the hospital for an Echo and it was easy... I felt ok taking a chance on the low price because it's FDA approved and the nurses at the hospital say they are seeing more and more of these and they seem to work fine.

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

Re: Terry POk, here I am again. It puts it at the very bottom of all the emails. How can I get it to put it at the bottom of mine instead of the very bottom. I'm so helpless when it comes to stuff like this. Kcentral I,.Terry Pennisi wrote:Joyce,Once again I see I've sent a message to the wrong person. I just sent it to , but it was meant for you!Does this crap play with your mind? I wonder. Anyway, hope you read the right one!Love and prayers,TerryTerry Pennisi 11/07 IPF Nevada You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost. KCentral IlHubby ipf- 2006As for me and my house, we will serve the Lord 14You rock. That's why Blockbuster' s offering you one month of Blockbuster Total Access, No Cost.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Gwynne, How wonderful to see your post.

Your recovery is amazing.

You are so fortunate to have family arou nd you and Misha will be there

too!

I cannot imagine what you have experienced but your sharing your story

is such a

miraculous gift.

I wish you peace, strength and continued healing and a wonderfully

happy life.

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

Gwynne Keyland wrote:

Hi friends,

Today is only the second peek I've taken at any

e-mails. OMG I'll have to skip some. While I'm away,

the surest way to see that I'll read them in a timely way

is to email me directly. We have wireless service in

the apartment here in San . My brother and

sis-in -law visited this weekend and gave the kids

some time off. My brother is an excellent cook and

made dinner the last few nights. The kids are doing a

great job with everything - medications, food, laundry,

cooking, trips to various stores and pharmacy, and

anything else you can think of.

My apt. address is:

7733 Louis Pasteur, #321

San , TX 78229

My pain was more tolerable today, so I took fewer pain

meds. The last two nights and mornings I actually got

some pretty good sleep. I'm very shakey. I'm on Norco,

Prograf, Cellcept (same as my pre-tx dosage), and 45 mg.

Prednisone ( which they hope to taper down 5mg a week

until Also Sporanox, Valcyte, Avelox, Surfak,

Protonics, Reglan, Cytogam by IV drip at hospital 2 more

times, Boniva, Multivitamin, & Advair for the bad lung.

We've got plenty of room - I've got a bedroom and nice

bathroom with a perfect walk-in shower and shower

bench. I'm supposed to let water run over the incision

once a day. There's a nice kitchen, 2 other bedrooms and

baths, and a living/dining room with a comfy sofa. My

brother bought me a recliner which is getting delivered

tomorrow - can't wait. We've got cable tv and On Demand

movies. I'm not up to reading yet, but I was given an

electronic book from Amazon that is very cool. You choose

what you want to read and it shows it on the screen in the

font size you want.

I have exercises to do 3 times a day, plus just walking around

the apartment. The shower takes a lot out of me. I try to

change locations throughout the day to get out of bed.

I'm shaking too much to write. My appetite's finally back to

normal, after losing 10 pounds in the hospital. There are

quite a few dietary restrictions, most of which I was already

doing. It's a low fat, low carb, low sugar diet. The meds did

raise my blood sugar to where I had to have several units

of insulin several times in the hospital. Hopefully that will

dissipate - we'll see.

I go in for clinic - chest x-ray, blood work and see the

doctors on Tues. We're only about 5 minutes away, and we

have a transport chair. I'm off oxygen completely, but get

winded when walking... and the hospital's a big place.

We'll talk about getting me a psychiatric consult, and any

other specialists lined up who I might need.

Tomorrow e is bringing Misha to me! (I'm soooo

ready, and got the doc's okay). She'll be good for me.

Music also helps to relax me and calm the pain.

I'm overwhelmed by the miracle that I've participated in.

I will do the best I can to live in such a way as to honor

and respect the gift of life I've been given.

Thank you so much for the kind words of love and

encouragement, for your excitement, your prayers,

your birthday cards!! and for just being there. I miss you

guys, but I'll get caught up eventually. I just don't have the

strength to do much yet, so I won't be around much at

all for a while. Thanks to anyone who took the time to

read about me or post on my CaringBridge website.

I'm off to record b.p., temp, etc. before bedtime meds.

I have to monitor those twice daily.

Love and huge hugs to everyone!!!!

Gwynne 57 single-lung transplant 4/3/08 at UTHSC - SA.

- on my birthday!!!!!

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.13/1375 - Release Date: 4/12/2008 11:32 AM

[Guest guest]

Ah, Don Well he is trying to recover from 5 days of miserable weather and weakness. We think he might be suffering from side effects from Nexium. I can't get the ear nose and throat doc to call me back. He is so tired and is trying to recoup. We are in the middle of a high pressure right now but the wind is so strong it is chilly. He is FREEZING. His legs and feet are cold to the touch. We are wondering if this could be a reaction Nexium. The pulmonary doc is suppose to fax the rehab stuff to the facility. Hopefully that will help him a lot. I think it will help his frame of mind. K Central IlSher Bauman wrote: K. Joyce is in the hospital for the work she knew had to be done....haven't heard if her surgery went today or will be tomorrow. RE: POSTS..... if you start from the bottom (newest) you will pick up the entire thread....what is in that thread will be up in the oldest posts too. Sometimes I read from oldest to see 'what I missed' anyway... You have a ton of posts to get through. I personally don't have the patience for that many. I'm more familiar w/people/subjects so I go through fairly quickly.

But if I'm gone a few days, boy oh boy I'm buried again! Be sure and tell us when you post how Don is, what he's dealing with, what Dr says...etc. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: joyce - good luck May, How sweet of you to remember. I am nervous, even a little scared....o.k. a lot scared! I have to be ready at 9:00 a.m. Monday, but they will call me when they have my room ready. Don't know

when surgeries, etc. are going to be. They have to get my blood at the right levels before they can do anythng. That means lots of sticks, you know. I have not been sleeping well. Keep playing every scenerio over in my head. I am enjoying hearing about the wedding. It is such a special time. Enjoy! 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> wishing you the best of luck for the 14th.> i will be crossing my fingers and praying > that it all goes smoothly without incident.> > may> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 between 0000-00-00 and 9999-99-99 K Central Il Hubby ipf- 2006 As for me and my

house, we will serve the Lord 14

between 0000-00-00 and 9999-99-99

[Guest guest]

K....keep calling Dr. ask for his assistant...call the pharmacy and ask there if this is a side effect to Nexium...Is it the ENT Dr who Rx Nexium???Isn't it maddening when you can't get a response from Dr office?!

Warm blankets out of the dryer are nice for him. Did you try that?

We're cold here in Oregon today too........

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

Re: joyce - good luck

May,

How sweet of you to remember.

I am nervous, even a little scared....o.k. a lot scared! I have to be ready at 9:00 a.m. Monday, but they will call me when they have my room ready. Don't know when surgeries, etc. are going to be. They have to get my blood at the right levels before they can do anythng. That means lots of sticks, you know.

I have not been sleeping well. Keep playing every scenerio over in my head.

I am enjoying hearing about the wedding. It is such a special time. Enjoy!

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> wishing you the best of luck for the 14th.> i will be crossing my fingers and praying > that it all goes smoothly without incident.> > may>

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

between 0000-00-00 and 9999-99-99

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

between 0000-00-00 and 9999-99-99

[Guest guest]

I'm good. How are you? I'll be calling Joyce again tomorrow. She said she may get to go home tomorrow.I hope so she has been through so much. But then she and Lucian may enjoy the fixing meds and all that goes with it.They are both in need of a BIG break.   Take Care Of You little one.Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Peggy,  Thank you so much for letting us know.  She has been in my thoughts and prayers constantly.  I am so glad she is in good spirits and that her pressure is down.  And by the way, hoqw are you feeling?  God bless you-    Sarcoid/PF  3/2006   California Joyce updateHi Group, I just spoke with Joyce, She is doing really well. Her pressure is DOWN, Flolan is working. The stint is in place.The pic line wasn't moved yet, They are waiting until she has a few teeth extracted. I don't think the Queen has one part of her body that hasn't suffered from this monster and all it's little imps.  She is in great spirits. Thanking God for his Grace and Mercies.  I am sure Kerry will give a more detailed report.. she is so goooood at it. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Wow! I'm still checking emails from last week. Ah that is why I'd heard of him. He has had a time with the gerd. The ENT doc gave him Nexium twice a day and zantac at night. After 4 days he was having burning in the esophagus. He was sure it was the strong dosage. He stopped taking the stuff. The pulmo was sure it wasn't and that it was just a coincidence, and put him back on it. (the ent was on vacation). Well, it came right back. After talking to the ENT's nurse he went on just one dose of Nexium and has done well with the cough and the voice. He has uncontrollable cold and weakness. He thinks it is the Nexium. I think it could be the pred. Tomorrow is trip to talk to the doc. do you have all your meds on the website and how in the world would I see that? I get the

emails at my own account. k Il wrote: Hi The Doc Patel in Peoria is a heart guy. Is Don taking anything for his Gerds?You should look in the breath-support database at all the meds I take. P Kennelly <l_kennelly> wrote: Hello I

didn't realize you are in Galesburg. Hey we are close. We went to Peoria and they told us that to go home (because of the cough) and take cough medicine. It is only the fibrosis. He gave us a brochure on pf and sent us home. The cough was terrible. When we got to Mayo, he gave us a script for pred. I also talked to Jewish National in Denver and she said "You don't want to just "go home and take cough medicine". Here is why. In 6 months the lung could be filled with scar tissue and that is irreversible. Then we heard about a guy in Springfield. He is older, but is aggressive and gave us a plan. We jumped at it. He put Don on 80 mg of pred, then down to 40, and now on 20. He hasn't had a recent cat scan. Is Patel in Peoria too? I've heard of him. Wow, you have a lot

of stuff I've never heard of. All except for the acid reflux and Don has that too. Don is really hoping that he will be able to mow this spring and summer. He was really bad yesterday and today as the day wears on it is getting worse. He can tell that second front is coming. Thanks for emailing. We need to keep in contact. K K Central Il Hubby ipf- 2006 As for me and my house, we

will serve the Lord 14 __________________________________________________

[Guest guest]

HI Here is alink to the databaseWhen ther click on Files, photo and links for other good infohttp://health.groups.yahoo.com/group/Breathe-Support/database P Kennelly wrote: Wow! I'm still checking emails from last week. Ah that is why I'd heard of him. He has had a time with the gerd. The ENT doc gave him Nexium twice a day and zantac at night. After 4 days he was having burning in the esophagus. He was

sure it was the strong dosage. He stopped taking the stuff. The pulmo was sure it wasn't and that it was just a coincidence, and put him back on it. (the ent was on vacation). Well, it came right back. After talking to the ENT's nurse he went on just one dose of Nexium and has done well with the cough and the voice. He has uncontrollable cold and weakness. He thinks it is the Nexium. I think it could be the pred. Tomorrow is trip to talk to the doc. do you have all your meds on the website and how in the world would I see that? I get the emails at my own account. k Il <kpoooh9> wrote: Hi The Doc

Patel in Peoria is a heart guy. Is Don taking anything for his Gerds?You should look in the breath-support database at all the meds I take. P Kennelly <l_kennelly> wrote: Hello I didn't realize you are in Galesburg. Hey we are close. We went to Peoria and they told us that to go home (because of the cough) and take cough medicine. It is only the fibrosis. He gave us a brochure on pf and sent us home. The cough was terrible. When we got to Mayo, he gave us a script for pred. I also talked to Jewish National in Denver and she said "You don't want to just "go home and take cough medicine". Here is why. In 6 months the lung could be filled with scar tissue and that is

irreversible. Then we heard about a guy in Springfield. He is older, but is aggressive and gave us a plan. We jumped at it. He put Don on 80 mg of pred, then down to 40, and now on 20. He hasn't had a recent cat scan. Is Patel in Peoria too? I've heard of him. Wow, you have a lot of stuff I've never heard of. All except for the acid reflux and Don has that too. Don is really hoping that he will be able to mow this spring and summer. He was really bad yesterday and today as the day wears on it is getting worse. He can tell that second front is coming. Thanks for emailing. We need to keep in contact. K K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 __________________________________________________

[Guest guest]

Hi Princess Hee Hee,

I found Ocala but Silver Springs insn't marked on my map...are you between Ocala & Gainsville...Gosh you're so close to Kennedy Space Station...ahve you ever seen any Space action overhead??????

I'm a MAP FREAK...I do use Google Map bvut it takes forever to download the images..I'll get everyone placed on paper first before I go off hunting in cyberspace.

Hope you're having a YUMMY, hee hee sort day1

GIO>> Hi GIO, Look at your map- bottom right. Florida. North central. we > are a little NE of Ocala in Silver Springs.> > I haven't found one yet. I think this is such s good idea. think I'll > call AAA Auto Club and see if they have them.> I know they do. Anyhow enjoy looking us up.> > Have you looked at google earth ? that is a cool way to go visit.. > all you need is addresses.> have a good day.> > > > Love and Prayers, Peggy> IPF 2004, Florida> > "Worry looks around,> Sorry looks back,> Faith looks up.">

[Guest guest]

GIO, we're 18 miles due east of Ocala. Gainsville is where the University of Florida is and my DR. is at Shands UF.When the Space shuttle goes up if it is a clear night we see a streak and flames. We have been over there and it is magnificent.  One time I told to go over and stand by the fence where the shuttle was so I could get the picture.Well this cop says "GET OUT OF THERE" we were in the parking lot for heavens sake. I got the picture, the cop was ticked and we went inside on the tour. Loved it. It is so amazing to see the things we have put men into and sent themout of this world.. They are VERY brave.Any how I use Google Earth. It downloads a program and you can go to anyones street. really cool.Have a good one. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hi Princess Hee Hee,                              I found Ocala but Silver Springs insn't marked on my map...are you between Ocala & Gainsville...Gosh you're so close to Kennedy Space Station...ahve you ever seen any Space action overhead??????                               I'm a MAP FREAK...I do use Google Map bvut it takes forever to download the images..I'll get everyone placed on paper first before I go off hunting in cyberspace.                               Hope you're having a YUMMY, hee hee sort day1                               GIO>> Hi GIO, Look at your map- bottom right. Florida. North central. we > are a little NE of Ocala in Silver Springs.> > I haven't found one yet. I think this is such s good idea. think I'll > call AAA Auto Club and see if they have them.> I know they do. Anyhow enjoy looking us up.> > Have you looked at google earth ? that is a cool way to go visit.. > all you need is addresses.> have a good day.> > > > Love and Prayers, Peggy> IPF 2004, Florida> > "Worry looks around,> Sorry looks back,> Faith looks up.">

[Guest guest]

I forgot to change the subject line again. Kennelly wrote: Oh, no , you didn't say that. I think it is just understood that eventually things are going to get tougher. I am the one that said that to Don. You were most encouraging and, as usual, made me feel very safe and loved. Feeling alone is more of what I thinks he feels. Nope buddy, you didn't say that at all, and as I reread

my post, it was tough to understand what I meant. K Central Il STEPHEN R WILSON <svwilsonmsn> wrote: Where did you or Don interpret me saying things are going to get worse or more of a struggle? My intention was encouragement. I'll be waiting for results of Don's Doplar.Steve59 from WA IPF 2006 From: Kennelly <l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: K/DonDate: Wed, 23 Apr 2008 20:59:37 -0700 (PDT) A doplar is a scan on arteries to determine the flow of blood to the extrimities. I'm glad he suggested it. There was a 1 month wait so he butted into the hospital. They are doing it next week. Since the weather has warmed dramatically he is better, but we are expecting colder temp for a couple of days. I fear we will head back down into the pits. I'm glad to hear that you fear the "at death's door" (that sounds bad doesn't it - but that was tough for him to admit to me). He thinks he is alone. He wasn't encouraged to hear that things are going to become more of a struggle. Hopefully we can talk tomorrow night. K Central Il.STEPHEN R WILSON <svwilsonmsn> wrote:

I don't beleive there are many on this group that are success stories. I for one could never get on a tractor and mow so Don Makes me feel better because he can. Yes some nights I ask my wife to leave the bedroom door open because I've felt close to death. But I'm always grateful that I get another day. I was a primary caregiver, with hospice help, and helped my father in law through his last 90 days of life. He died of lung cancer three years ago. I've told the group someday I would relate this experience but I'm not sure I can Other to say it was peaceful for him and the family. I think you need to go to http://www.hospice.org/ for help in answering his and your questions on death and dying. Tell Don he certainly doesn't look close to that door to me. Also, what is a doplar? I also have uncomfortable cold legs. Steve59 from WA IPF 2006 From: Kennelly <l_kennelly>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Jim/Sher/K/Date: Wed, 23 Apr 2008 13:59:48 -0700 (PDT) Thanks Sher, I do think he saw it because he answered but you are right. I've found myself posting something and forgetting to change the subject line. Don is sleeping right now. We went to see the pcp today because we hadn't been to him since Jan. He thinks Don's coldness in the legs is more from pred than circulation, but he is going to do a doplar next week to make sure. I so wish he

would get on here. He would learn so much. He asked me this morning if he was at death's door. I told him that there have been times I've thought that but from what I can tell from the board that some are a lot worse off than he is. He doesn't believe me. He thinks you are all success stories. I tried to explain to him that everyone is at different steps in the disease. I guess the way I talk about everyone he thinks things are peachy with all. I'll try to get him on here. Thanks guys, K IllinoisSher Bauman <bofuswbcable (DOT) net> wrote: K......be sure and watch the subject line.....maybe add your name as I did, or start a new post to

Jim...........Your post appears to be asking me about snow, when you're really asking Jim, a post below mine. I think not adding a name or starting a new post is where so many of us miss stuff. How is Don this morning? Tell him hello for me. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! $.02 worth Once again I've been reading about dead beat doctors

who, for whatever reasons, aren't meeting the needs of folks on the Board here. First, I have to say that there are genuine healers out there that are, unfortunately in my opinion, in the minority. In my case, in my pre- IPF days I had 2 oncologists. One of them I still see every 3-6 months. First he wants a CT scan to check that the cancer has not returned. After that the time is mine and much of it is spent discussing my lungs. He is damn busy, but he makes time to "treat" me. He has even researched pulmo questions to help me find answers. Anyway, that's not why I'm writing........I'm writing about Respiratory Therapists. I've only had contact with 2 so my experience is limited, but both are EXCELLENT sources of information, One does my periodic PFT, and the other runs the small company that rents me all my O2 equipment. This guy is available 24/7. I'm not able to do pulmo rehab because I choose to live 350 miles from Anchorage

so this guy makes himself available by phone. I'm making this way too long and drawn out. In my experience, both of these RTs provide me with as much or more info than any MD. Like anything else, there are bound to be duds, but I've had great experience with them. jim IPF 05 alaska Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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. 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. 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.

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. 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'm excited for you, BUT don't over do it. I'm sure your family will do it all if you'll let them... lol  (momma hen)I pray they all do get back under your wing where they belong.  Love you and know you are becoming a beach bunny.ENJOY. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Thanks for the laugh Peggy!  I am moving tomorrow so I won't be online for a few days.  Cable guy comes Monday to hook up my internet.  I love my new house.  Don't have the spectacular view but I am closer to the beach. And I am enjoying my grandsons.  Now I just have to convince the other two out of staters to move back to California and my life will be perfect ( well almost perfect!)  Love you-    Sarcoid/PF  3/2006   California funnyDOGS> > A girl was visiting her blonde friend, who had acquired two> new dogs, and asked her what their names were. The blonde> responded by saying that one was named Rolex and one> was named Timex.> Her friend said, 'Whoever heard of someone naming dogs like> that?'> 'HELLLOOOOOOO. .....,' answered the blonde. 'They're> watch dogs!>IN A VACUUM> > A blonde was playing Trivial Pursuit one night. It was her turn.> She rolled the dice and she landed on Science & Nature. Her> question was, 'If you are in a vacuum and someone calls your> name, can you hear it?'> She thought for a time and then asked, 'Is it on or off?'> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Where would I get a hold of mini-series? We don't get HBO. I've told myself I want to read about every President and visit as many libraries as possible when I retired. Who would have anticipated this dreadful disease? K Illinoislsmith7892006 wrote: Hi , That would be me, S.What did you want to know? Save yourself reading the 842 page book and just see the HBO miniseries. It was very well done and covered the

material. s, Lubbock, TXNSIP w/PF 12/2006> > > > >> > >

> > ,> > > > > Boy you have been through the mill haven't you?> > > It's amazing what> > > > our bodies and spirits can tolerate and we still> > > keep popping up for> > > > more.> > > > > Congratulations on remaining so active and> > > taking good care of> > > > yourself. In the long run that will make a> > > tremendous difference in> > > > the quality of your life. I'm sure it does> > > already.> > > > > I have also suffered with that horrible dry> > > hacking relentless> > > > cough. My doctor put me on Advair 250/50 twice a> > > day to control it.> > > > (No I don't have asthma) It works for me but my> > > best suggestion would> > > > echo what Joyce said. Get yourself to a

specialist> > > in interstitial> > > > lung disease. You don't say where you live but> > > there are university> > > > hospitals all over the country with specialists> > > you can contact. Your> > > > internist is probably a wonderful doctor but I> > > feel confident in> > > > saying it is unlikely he sees enough of this type> > > of lung disease to> > > > be able to help you properly.> > > > > Please let us know if there is anything we can> > > help you with. We're> > > > here and we "get it".> > > > >> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > > >> > > >

>> > > > >> > > > >> > > > > I am so sick of this> > > cough> > > > >> > > > > I am new to the this forum and have never posted> > > before. I am> > > > hoping> > > > > to see if my issues sound familiar and if others> > > are experiencing> > > > > what I am. I apologize up front for the coming> > > long post.> > > > >> > > > > 14 years ago (I know its been a long time) I was> > > diagnosed

as> > > > having> > > > > Stage 4 T-cell Lymphoma. The bad thing was that> > > this wasn't> > > > > diagnosed until I was in the terminal stages> > > with all my organs> > > > > failing. I spent a month on life support and had> > > many many bad> > > > > things happen including a stroke, ARDS, septic> > > shock, etc.. The> > > > list> > > > > is long.> > > > >> > > > > Somehow I experienced a miracle and survived> > > this ordeal. Went thru> > > > > a traditional regiment of CHOP + Bleomycin for> > > several rounds. I> > > > > went into complete remission after my 5th round.> > > > >> > > > > A year after this I was told that I had to have> > > a

Bone Marrow> > > > > Transplant to prevent my kind of lymphoma from> > > coming back. So I> > > > > went ahead with this. Part of my treatment was> > > total body> > > > > irradiation (TBI).> > > > >> > > > > So since then I have led a very normal life> > > except for a couple of> > > > > things. I don't have the long capacity that I> > > used to and I have> > > > > this incredible recurring cough.> > > > >> > > > > I was diagnosed about 7 year ago as having> > > moderate restrictive> > > > lung> > > > > disease. Not a lot was done then. Given what I> > > had gone through I> > > > > didn't pay much attention to this.> > > > >> > > > > The

problems that I have is that A) when doing> > > anything aerobic I> > > > run> > > > > out of air fairly quickly. Cycling is a huge> > > sport where I live and> > > > > I have tried to ride at lunch with the> > > semi-serious group. I can> > > > > keep up well for 4-5 miles but I simply run out> > > of air. I have come> > > > > to live with this and move on at my own pace.> > > The more annoying> > > > > problem is this cough. I get this recurring dry> > > cough that can last> > > > > anywhere from 1 to 3 weeks. I am on week 3 of a> > > cough right now. I> > > > > went to my doc at the beginning of this cycle to> > > get the usual> > > > > narcotic cough syrup. I have since run out. I> > >

didn't sleep at all> > > > > last night and right now doesn't look promising> > > for tonight.> > > > >> > > > > I am so sick of this cycle that I can scream. I> > > hate the normal> > > > > routine of cough syrup but hate the lack of> > > sleep even more. It> > > > > seems like I cough hard every 30 seconds or so.> > > I get> > > > > embarrassed going to the doc when this cycle> > > starts. Seems like> > > > > === message truncated ===> > > > > > Sarcoid/PF 3/2006 California> > > > > > > > ________________________________________________________________________> > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile.

Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> >> > > > > > > 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.> 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]

A lot of the tv miniseries are available for rent or sale at Video rental stores. Try Blockbuster.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Date: Sun, 27 Apr 2008 13:39:34 -0700 (PDT)

Where would I get a hold of mini-series? We don't get HBO.

I've told myself I want to read about every President and visit as many libraries as possible when I retired. Who would have anticipated this dreadful disease?

K

Illinoislsmith7892006 <lbsmith789sbcglobal (DOT) net> wrote:

Hi , That would be me, S.What did you want to know? Save yourself reading the 842 page book and just see the HBO miniseries. It was very well done and covered the material. s, Lubbock, TXNSIP w/PF 12/2006> > > > >> > > > > ,> > > > > Boy you have been through the mill haven't you?> > > It's amazing what> > > > our bodies and spirits can tolerate and we still> > > keep popping up for> > > > more.> > > > > Congratulations on remaining so active and> > > taking good care of> > > > yourself. In the long run that will make a> > > tremendous difference in> > > > the quality of your life. I'm sure it does> > > already.> > > > > I have also suffered with that horrible dry> > > hacking relentless> > > > cough. My doctor put me on Advair 250/50 twice a> > > day to control it.> > > > (No I don't have asthma) It works for me but my> > > best suggestion would> > > > echo what Joyce said. Get yourself to a specialist> > > in interstitial> > > > lung disease. You don't say where you live but> > > there are university> > > > hospitals all over the country with specialists> > > you can contact. Your> > > > internist is probably a wonderful doctor but I> > > feel confident in> > > > saying it is unlikely he sees enough of this type> > > of lung disease to> > > > be able to help you properly.> > > > > Please let us know if there is anything we can> > > help you with. We're> > > > here and we "get it".> > > > >> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > I am so sick of this> > > cough> > > > >> > > > > I am new to the this forum and have never posted> > > before. I am> > > > hoping> > > > > to see if my issues sound familiar and if others> > > are experiencing> > > > > what I am. I apologize up front for the coming> > > long post.> > > > >> > > > > 14 years ago (I know its been a long time) I was> > > diagnosed as> > > > having> > > > > Stage 4 T-cell Lymphoma. The bad thing was that> > > this wasn't> > > > > diagnosed until I was in the terminal stages> > > with all my organs> > > > > failing. I spent a month on life support and had> > > many many bad> > > > > things happen including a stroke, ARDS, septic> > > shock, etc.. The> > > > list> > > > > is long.> > > > >> > > > > Somehow I experienced a miracle and survived> > > this ordeal. Went thru> > > > > a traditional regiment of CHOP + Bleomycin for> > > several rounds. I> > > > > went into complete remission after my 5th round.> > > > >> > > > > A year after this I was told that I had to have> > > a Bone Marrow> > > > > Transplant to prevent my kind of lymphoma from> > > coming back. So I> > > > > went ahead with this. Part of my treatment was> > > total body> > > > > irradiation (TBI).> > > > >> > > > > So since then I have led a very normal life> > > except for a couple of> > > > > things. I don't have the long capacity that I> > > used to and I have> > > > > this incredible recurring cough.> > > > >> > > > > I was diagnosed about 7 year ago as having> > > moderate restrictive> > > > lung> > > > > disease. Not a lot was done then. Given what I> > > had gone through I> > > > > didn't pay much attention to this.> > > > >> > > > > The problems that I have is that A) when doing> > > anything aerobic I> > > > run> > > > > out of air fairly quickly. Cycling is a huge> > > sport where I live and> > > > > I have tried to ride at lunch with the> > > semi-serious group. I can> > > > > keep up well for 4-5 miles but I simply run out> > > of air. I have come> > > > > to live with this and move on at my own pace.> > > The more annoying> > > > > problem is this cough. I get this recurring dry> > > cough that can last> > > > > anywhere from 1 to 3 weeks. I am on week 3 of a> > > cough right now. I> > > > > went to my doc at the beginning of this cycle to> > > get the usual> > > > > narcotic cough syrup. I have since run out. I> > > didn't sleep at all> > > > > last night and right now doesn't look promising> > > for tonight.> > > > >> > > > > I am so sick of this cycle that I can scream. I> > > hate the normal> > > > > routine of cough syrup but hate the lack of> > > sleep even more. It> > > > > seems like I cough hard every 30 seconds or so.> > > I get> > > > > embarrassed going to the doc when this cycle> > > starts. Seems like> > > > > === message truncated ===> > > > > > Sarcoid/PF 3/2006 California> > > > > > > > ________________________________________________________________________> > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> >> > > > > > > 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.>

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]

Hmmmm

Well HBO is still running it so they won't release it yet on DVD but

I bet they will. Give it 6 months or so.

Be sure you read the Cokie book about the First Ladies as

well. It really is a good read. Abigail is by far my fave.

She urged hubby to " not forget the ladies " when they were writing our

first set of laws. OK so he didn't listen but she was there pulling

for us.

> > > > > >

> > > > > > ,

> > > > > > Boy you have been through the mill haven't you?

> > > > It's amazing what

> > > > > our bodies and spirits can tolerate and we still

> > > > keep popping up for

> > > > > more.

> > > > > > Congratulations on remaining so active and

> > > > taking good care of

> > > > > yourself. In the long run that will make a

> > > > tremendous difference in

> > > > > the quality of your life. I'm sure it does

> > > > already.

> > > > > > I have also suffered with that horrible dry

> > > > hacking relentless

> > > > > cough. My doctor put me on Advair 250/50 twice a

> > > > day to control it.

> > > > > (No I don't have asthma) It works for me but my

> > > > best suggestion would

> > > > > echo what Joyce said. Get yourself to a specialist

> > > > in interstitial

> > > > > lung disease. You don't say where you live but

> > > > there are university

> > > > > hospitals all over the country with specialists

> > > > you can contact. Your

> > > > > internist is probably a wonderful doctor but I

> > > > feel confident in

> > > > > saying it is unlikely he sees enough of this type

> > > > of lung disease to

> > > > > be able to help you properly.

> > > > > > Please let us know if there is anything we can

> > > > help you with. We're

> > > > > here and we " get it " .

> > > > > >

> > > > > > Beth

> > > > > > Age 48 Fibrotic NSIP 06/06

> > > > > >

> > > > > > Change everything. Love and Forgive

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > I am so sick of this

> > > > cough

> > > > > >

> > > > > > I am new to the this forum and have never posted

> > > > before. I am

> > > > > hoping

> > > > > > to see if my issues sound familiar and if others

> > > > are experiencing

> > > > > > what I am. I apologize up front for the coming

> > > > long post.

> > > > > >

> > > > > > 14 years ago (I know its been a long time) I was

> > > > diagnosed as

> > > > > having

> > > > > > Stage 4 T-cell Lymphoma. The bad thing was that

> > > > this wasn't

> > > > > > diagnosed until I was in the terminal stages

> > > > with all my organs

> > > > > > failing. I spent a month on life support and had

> > > > many many bad

> > > > > > things happen including a stroke, ARDS, septic

> > > > shock, etc.. The

> > > > > list

> > > > > > is long.

> > > > > >

> > > > > > Somehow I experienced a miracle and survived

> > > > this ordeal. Went thru

> > > > > > a traditional regiment of CHOP + Bleomycin for

> > > > several rounds. I

> > > > > > went into complete remission after my 5th round.

> > > > > >

> > > > > > A year after this I was told that I had to have

> > > > a Bone Marrow

> > > > > > Transplant to prevent my kind of lymphoma from

> > > > coming back. So I

> > > > > > went ahead with this. Part of my treatment was

> > > > total body

> > > > > > irradiation (TBI).

> > > > > >

> > > > > > So since then I have led a very normal life

> > > > except for a couple of

> > > > > > things. I don't have the long capacity that I

> > > > used to and I have

> > > > > > this incredible recurring cough.

> > > > > >

> > > > > > I was diagnosed about 7 year ago as having

> > > > moderate restrictive

> > > > > lung

> > > > > > disease. Not a lot was done then. Given what I

> > > > had gone through I

> > > > > > didn't pay much attention to this.

> > > > > >

> > > > > > The problems that I have is that A) when doing

> > > > anything aerobic I

> > > > > run

> > > > > > out of air fairly quickly. Cycling is a huge

> > > > sport where I live and

> > > > > > I have tried to ride at lunch with the

> > > > semi-serious group. I can

> > > > > > keep up well for 4-5 miles but I simply run out

> > > > of air. I have come

> > > > > > to live with this and move on at my own pace.

> > > > The more annoying

> > > > > > problem is this cough. I get this recurring dry

> > > > cough that can last

> > > > > > anywhere from 1 to 3 weeks. I am on week 3 of a

> > > > cough right now. I

> > > > > > went to my doc at the beginning of this cycle to

> > > > get the usual

> > > > > > narcotic cough syrup. I have since run out. I

> > > > didn't sleep at all

> > > > > > last night and right now doesn't look promising

> > > > for tonight.

> > > > > >

> > > > > > I am so sick of this cycle that I can scream. I

> > > > hate the normal

> > > > > > routine of cough syrup but hate the lack of

> > > > sleep even more. It

> > > > > > seems like I cough hard every 30 seconds or so.

> > > > I get

> > > > > > embarrassed going to the doc when this cycle

> > > > starts. Seems like

> > > >

> > > === message truncated ===

> > >

> > >

> > > Sarcoid/PF 3/2006 California

> > >

> > >

> > >

> > >

> __________________________________________________________

> ______________

> > > Be a better friend, newshound, and

> > > know-it-all with Yahoo! Mobile. Try it now.

> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> > >

> >

> >

> >

> >

> >

> >

> > 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.

> >

>

>

>

>

>

>

> 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]

Thanks for all the help you guys. Right now I'm reading about the 1893 World's Fair in Chicago. Fascinating. I just learned today that because of this fair, the children began to recite the Pledge of Allegence. Any way I will like reading about Abigail. K Central Illsmith7892006 wrote: HmmmmWell HBO is still running it so they won't release it yet on DVD but I bet they will. Give it 6 months or so.Be sure you read the

Cokie book about the First Ladies as well. It really is a good read. Abigail is by far my fave. She urged hubby to "not forget the ladies" when they were writing our first set of laws. OK so he didn't listen but she was there pulling for us.> > > > > >> > > > > > ,> > > > > > Boy you have been through the mill haven't you?> > > > It's amazing what> > > > > our bodies and spirits can tolerate and we still> > > > keep popping up for> > > > > more.> > > > > > Congratulations on remaining so active and> >

> > taking good care of> > > > > yourself. In the long run that will make a> > > > tremendous difference in> > > > > the quality of your life. I'm sure it does> > > > already.> > > > > > I have also suffered with that horrible dry> > > > hacking relentless> > > > > cough. My doctor put me on Advair 250/50 twice a> > > > day to control it.> > > > > (No I don't have asthma) It works for me but my> > > > best suggestion would> > > > > echo what Joyce said. Get yourself to a specialist> > > > in interstitial> > > > > lung disease. You don't say where you live but> > > > there are university> > > > > hospitals all over the country with specialists> > > > you can contact. Your> > >

> > internist is probably a wonderful doctor but I> > > > feel confident in> > > > > saying it is unlikely he sees enough of this type> > > > of lung disease to> > > > > be able to help you properly.> > > > > > Please let us know if there is anything we can> > > > help you with. We're> > > > > here and we "get it".> > > > > >> > > > > > Beth> > > > > > Age 48 Fibrotic NSIP 06/06> > > > > >> > > > > > Change everything. Love and Forgive> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > I am so sick of this> > > > cough> > > > > >> > > > > > I am new to the this forum and have never posted> > > > before. I am> > > > > hoping> > > > > > to see if my issues sound familiar and if others> > > > are experiencing> > > > > > what I am. I apologize up front for the coming> > > > long post.> > > > > >> > > > > > 14 years ago (I know its been a long time) I was> > > > diagnosed as> > > > > having> > > > > > Stage 4 T-cell Lymphoma. The bad thing was

that> > > > this wasn't> > > > > > diagnosed until I was in the terminal stages> > > > with all my organs> > > > > > failing. I spent a month on life support and had> > > > many many bad> > > > > > things happen including a stroke, ARDS, septic> > > > shock, etc.. The> > > > > list> > > > > > is long.> > > > > >> > > > > > Somehow I experienced a miracle and survived> > > > this ordeal. Went thru> > > > > > a traditional regiment of CHOP + Bleomycin for> > > > several rounds. I> > > > > > went into complete remission after my 5th round.> > > > > >> > > > > > A year after this I was told that I had to have> > > > a Bone

Marrow> > > > > > Transplant to prevent my kind of lymphoma from> > > > coming back. So I> > > > > > went ahead with this. Part of my treatment was> > > > total body> > > > > > irradiation (TBI).> > > > > >> > > > > > So since then I have led a very normal life> > > > except for a couple of> > > > > > things. I don't have the long capacity that I> > > > used to and I have> > > > > > this incredible recurring cough.> > > > > >> > > > > > I was diagnosed about 7 year ago as having> > > > moderate restrictive> > > > > lung> > > > > > disease. Not a lot was done then. Given what I> > > > had gone through I> > > > > > didn't

pay much attention to this.> > > > > >> > > > > > The problems that I have is that A) when doing> > > > anything aerobic I> > > > > run> > > > > > out of air fairly quickly. Cycling is a huge> > > > sport where I live and> > > > > > I have tried to ride at lunch with the> > > > semi-serious group. I can> > > > > > keep up well for 4-5 miles but I simply run out> > > > of air. I have come> > > > > > to live with this and move on at my own pace.> > > > The more annoying> > > > > > problem is this cough. I get this recurring dry> > > > cough that can last> > > > > > anywhere from 1 to 3 weeks. I am on week 3 of a> > > > cough right now. I> > > > > >

went to my doc at the beginning of this cycle to> > > > get the usual> > > > > > narcotic cough syrup. I have since run out. I> > > > didn't sleep at all> > > > > > last night and right now doesn't look promising> > > > for tonight.> > > > > >> > > > > > I am so sick of this cycle that I can scream. I> > > > hate the normal> > > > > > routine of cough syrup but hate the lack of> > > > sleep even more. It> > > > > > seems like I cough hard every 30 seconds or so.> > > > I get> > > > > > embarrassed going to the doc when this cycle> > > > starts. Seems like> > > > > > > === message truncated ===> > > > > > > > > Sarcoid/PF 3/2006

California> > > > > > > > > > > > > __________________________________________________________> ______________> > > Be a better friend, newshound, and > > > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > >> > > > > > > > > > > > > > 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.> >> > >

> > > > 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.> 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 don't post often - in fact I' am what is referred to as a lurker; but your post was one that I felt that I had to reply to. I was also diagnosed w/ scleroderma last year. Actually the exact diagnosis was diffuse systemic scleroderma - and it's also effecting all my major organs including lungs, kidney, esophagus - etc.

Originally it was found by my pulmonologist who did some pretty extensive blood work (after I refused a biopsy) and found that I had an antigen specifically linked to systemic scleroderma - . She referred me to a rheumatologist that wanted to put me on oral cytoxan. After looking at the side effects of the drug I sought out other opinions and found that there are what I'll refer to as "super specialists" for scleroderma where the entire practice is only for treatment of scleroderma.

There are 17 centers for scleroderma in the US - I don't know if there is one near you but if you can find one I would strongly urge you to get an appointment. I had to argue with the gatekeepers (people who make the app'ts) because I wasn't being referred by another Dr - but I prevailed and got the app't. I had to wait almost 3 months but really felt that I was in the right place for treatment.

Dr Hsu also wanted me to go on cytoxan but recommended that I had to go on a monthly infusion to try and stop the advancement of the disease. She really had a lot of information about what I could expect and immediately started a testing regiment that monitors my progress.

Anyway - I digress - I ended up doing 6 months (from June to Dec. 2007) of cytoxan infusions at the local hospital and I really have to say it wasn't as bad as I anticipated (feared). I did not loose my hair. Nausea was controlled by drugs. Potential bladder damage was avoided by administration of drugs immediately prior to cytoxan and hydration using saline solution concurrent with the drugs. Mostly I was wiped out (tired) for the week that I would have my treatment but pretty much continued my normal schedule. I continued working full time missing only the days of treatment. My last PFT indicates that the disease is stable - my diffusion remains at 49%, my oxygen levels on exercise drop only into the high 80's. Not bad after the initial onslaught.

Please let me know if I can provide any other information. If you would like to call me please don't hesitate.

Dunn - New Jersey

diffuse systemic scleroderma, mild PH, etc, etcNeed a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

This post from Dunn shows how amazing this site is. This one post could be life saving information for !

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

>> , I don't post often - in fact I' am what is referred to as a lurker; > but your post was one that I felt that I had to reply to. I was also diagnosed > w/ scleroderma last year. Actually the exact diagnosis was diffuse systemic > scleroderma - and it's also effecting all my major organs including lungs, > kidney, esophagus - etc. > > Originally it was found by my pulmonologist who did some pretty extensive > blood work (after I refused a biopsy) and found that I had an antigen > specifically linked to systemic scleroderma - . She referred me to a rheumatologist > that wanted to put me on oral cytoxan. After looking at the side effects of > the drug I sought out other opinions and found that there are what I'll refer > to as "super specialists" for scleroderma where the entire practice is only > for treatment of scleroderma. > > There are 17 centers for scleroderma in the US - I don't know if there is > one near you but if you can find one I would strongly urge you to get an > appointment. I had to argue with the gatekeepers (people who make the app'ts) > because I wasn't being referred by another Dr - but I prevailed and got the app't. > I had to wait almost 3 months but really felt that I was in the right place > for treatment.> > Dr Hsu also wanted me to go on cytoxan but recommended that I had to go on > a monthly infusion to try and stop the advancement of the disease. She really > had a lot of information about what I could expect and immediately started a > testing regiment that monitors my progress. > > Anyway - I digress - I ended up doing 6 months (from June to Dec. 2007) of > cytoxan infusions at the local hospital and I really have to say it wasn't as > bad as I anticipated (feared). I did not loose my hair. Nausea was controlled > by drugs. Potential bladder damage was avoided by administration of drugs > immediately prior to cytoxan and hydration using saline solution concurrent > with the drugs. Mostly I was wiped out (tired) for the week that I would have my > treatment but pretty much continued my normal schedule. I continued working > full time missing only the days of treatment. My last PFT indicates that the > disease is stable - my diffusion remains at 49%, my oxygen levels on > exercise drop only into the high 80's. Not bad after the initial onslaught. > > Please let me know if I can provide any other information. If you would like > to call me please don't hesitate. > > Dunn - New Jersey> diffuse systemic scleroderma, mild PH, etc, etc> > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851)>

[Guest guest]

Joyce//

Oh absolutely, Joyce. I would recommend she do anything possible to get

to one of those centers, just as I would recommend anyone with PF at

least get one time to one of the 13 IPF Centers of Excellence. It's not

just the fact there are the specialists at each of the 17 centers for

scleroderma or the 13 centers for IPF, you then multiply that by their

collaborative effort.

> >

> > , I don't post often - in fact I' am what is referred to as a

> lurker;

> > but your post was one that I felt that I had to reply to. I was also

> diagnosed

> > w/ scleroderma last year. Actually the exact diagnosis was diffuse

> systemic

> > scleroderma - and it's also effecting all my major organs including

> lungs,

> > kidney, esophagus - etc.

> >

> > Originally it was found by my pulmonologist who did some pretty

> extensive

> > blood work (after I refused a biopsy) and found that I had an

antigen

> > specifically linked to systemic scleroderma - . She referred me to a

> rheumatologist

> > that wanted to put me on oral cytoxan. After looking at the side

> effects of

> > the drug I sought out other opinions and found that there are what

> I'll refer

> > to as " super specialists " for scleroderma where the entire practice

is

> only

> > for treatment of scleroderma.

> >

> > There are 17 centers for scleroderma in the US - I don't know if

there

> is

> > one near you but if you can find one I would strongly urge you to

get

> an

> > appointment. I had to argue with the gatekeepers (people who make

the

> app'ts)

> > because I wasn't being referred by another Dr - but I prevailed and

> got the app't.

> > I had to wait almost 3 months but really felt that I was in the

right

> place

> > for treatment.

> >

> > Dr Hsu also wanted me to go on cytoxan but recommended that I had to

> go on

> > a monthly infusion to try and stop the advancement of the disease.

She

> really

> > had a lot of information about what I could expect and immediately

> started a

> > testing regiment that monitors my progress.

> >

> > Anyway - I digress - I ended up doing 6 months (from June to Dec.

> 2007) of

> > cytoxan infusions at the local hospital and I really have to say it

> wasn't as

> > bad as I anticipated (feared). I did not loose my hair. Nausea was

> controlled

> > by drugs. Potential bladder damage was avoided by administration of

> drugs

> > immediately prior to cytoxan and hydration using saline solution

> concurrent

> > with the drugs. Mostly I was wiped out (tired) for the week that I

> would have my

> > treatment but pretty much continued my normal schedule. I continued

> working

> > full time missing only the days of treatment. My last PFT indicates

> that the

> > disease is stable - my diffusion remains at 49%, my oxygen levels on

> > exercise drop only into the high 80's. Not bad after the initial

> onslaught.

> >

> > Please let me know if I can provide any other information. If you

> would like

> > to call me please don't hesitate.

> >

> > Dunn - New Jersey

> > diffuse systemic scleroderma, mild PH, etc, etc

> >

> >

> >

> > **************Need a new ride? Check out the largest site for U.S.

> used car

> > listings at AOL Autos.

> > (http://autos.aol.com/used?NCID=aolcmp00300000002851)

> >

>

[Guest guest]

We'll be leaving about noon today. We are going through Baton Rough to see my nephew then ON TO SAN ANTONIO>>>>>>>We were going to surprise everyone but I just want to share my excitement. It would have been so funny if I hadn't told. But thats me. A SHARIN KIND A PERSON..hee heeI'll be on the cell in a couple hours. shutting down for now. SEE SOME ON SAT>>> Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hello Group, and I are sitting on our porch just talking about what an exciting week-end is going to be.Pray for us on our trip.  My cell number is on the contact list.   ;)Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly wrote: Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but

Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit. He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh! We will soon be off to rehab for him and I'm going to the Y to walk and swim. That should perk me up. LInda K Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote: ,Congratulations on getting listed. I hope

you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX 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.

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

[Guest guest]

Thanks Jim, I really feel lots-a-love. Hey, by the way has anyone heard from Irene? K Illjames wallman wrote: ............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly <l_kennelly> wrote: Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit. He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh! We will soon be off to rehab for him and I'm going to

the Y to walk and swim. That should perk me up. LInda K Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote: ,Congratulations on getting listed. I hope you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a

brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX 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. 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]

K.....I think if anyone would hear from Irene it would be Bruce....and he hasn't written anything.............

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

Re:

Thanks Jim, I really feel lots-a-love. Hey, by the way has anyone heard from Irene?

K

Illjames wallman <james_wallman> wrote:

............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly <l_kennelly> wrote:

Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit.

He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh!

We will soon be off to rehab for him and I'm going to the Y to walk and swim. That should perk me up. LInda K

Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote:

,Congratulations on getting listed. I hope you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX

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.

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]

Ok, just wondered if I missed something. She has sure had her problems. K IllinoisSher Bauman wrote: K.....I think if anyone would hear from Irene it would be Bruce....and he hasn't written anything............. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Thanks Jim, I really feel lots-a-love. Hey, by the way has anyone heard from Irene? K Illjames wallman <james_wallman> wrote: ............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly <l_kennelly> wrote: Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit. He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh! We will soon be off to rehab for him and I'm going to the Y to walk and swim. That should perk me up. LInda K Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote: ,Congratulations on getting listed. I hope you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto

get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX 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. 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. 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]

K...I don't think you missed anything about Irene........

The name of the book is, "Listen to the Silence"........You can look on Amazon.com and see the covers.........

Actually, we like to watch golf. Rich plays and I've tried but all I do is rip up the grass ! But I love to watch it on TV.

Most of the 'older' players have died now and other people that Rich knew. We're talking back to the 40s thru the 80s. His dad died in 1991 and had been retired for a long while. Rich will be 78 in June but he looks about late 60s. He exercises every day and it pays off ok.

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

Re:

Thanks Jim, I really feel lots-a-love. Hey, by the way has anyone heard from Irene?

K

Illjames wallman <james_wallman> wrote:

............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly <l_kennelly> wrote:

Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit.

He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh!

We will soon be off to rehab for him and I'm going to the Y to walk and swim. That should perk me up. LInda K

Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote:

,Congratulations on getting listed. I hope you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX

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.

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.

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.