Re: Birmingham

June 19, 2008

Hi Caro... I want to add that my heart seemed "wacko" and I had a complete cardio workup...NO problems. Echo shows no problems now. So I'm at least glad the heart thing has not gone hand-in-hand so far.

My heart skips beats but with all the testing to dx reason, there is none. So we don't worry about it anymore. My heart rate would go up to 110.

I hope you do/will not have any more problems than you currently have to deal with!

Take care.

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

Re: BirminghamTo: Breathe-Support Date: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam > and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. > (my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

Thanks Sher. I hope I am as fortunate as you and nothing else is wrong. Having UIP is bad enough. I am supposed to go and see my regular pulmo on June 30 and my pulmo rehab therapist is sending him a report regarding my elevated heart rate, so I am thinking I will probably be going through a cardiac workup, as well, before it is over and done. Am glad I can come here and get some encouragement. Thanks again, Mama Sher!! Hugs and kisses from me!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam >

and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood

flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am

miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. >

(my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts

better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

Caro...BTW...none of the testing during a cardio workup bothered me. Not painful. I had a heart cath but was out for that and they found nothing so I didn't need a stint. I'm very lucky and I pray you will be too.

I think your exercise is such a good thing. Are you still using your home gym?

MamaSher, age 69. IPF 3-06, OR./ Bold NasturtiumsDon't fret about tomorrow, God is already there!

Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam > and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. > (my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

I am still using it but not as often as I should. I am still going to pulmo rehab 3 days a week, though, and they are supposed to bump us up this week (though I haven't had a chance to go this week yet, but will Friday), so we will be doing 12 minutes on 3 machines and 15 minutes on the treadmill. She said we have to work up to going 20 minutes on each machine without stopping before we can "graduate!!" I am giving it my best. I am planning to get back on the home gym later on this afternoon. Some days I can do it and some days no matter hard I try, I just can't go. On those days, I usually end up back in bed before the day is over. So far, today has been a pretty good day!! Hope yours has been, too. I really appreciate the prayers, too. I surely need them!! I am glad to hear a cardiac workup is

not that bad. My wrist is really hurting today from the ABGs after I had to type all day and keep bumping it on the wrist rest. I guess will be sore for awhile. Probably turn black and blue like the other biggest percentage of my body these days!! HEE HEE!! Have a good one!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

From: Jane <jjarrettoptilink (DOT) us>Subject: Re: BirminghamTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 19, 2008, 7:50 AM

Caro,

Sounds as if you found good docs in B'ham. I am concerned that they say it is rare for anyone under the age of 50 to have IPF. I first had symptoms in my early forties and now I am 53.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> > Sorry I haven't posted in a few days again, but I am back from > Birmingham. Still don't know anything definite other than the > diagnosis I already have of UIP. First when I got there, they did > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't > even feel it, but not this time. She had to pry (her words)). Then > I had to do PFTs, which showed 57% lung function, compared to the 68% > I had in December. Next, I visited with the doc. Actually there > were 2 docs. The first one was a fellow of Dr. de Andrade (who was > the Assistant Professor). His name was Dr. , very nice guy. > He took down all my history and said he thinks I may have pulmonary > hypertension (which would explain the rapid heart rate). He did exam >

and then goes to discuss with Dr. de Andrade, who comes back in and > again, very nice guy. He explains that it is very rare in a woman > under the age of 50 to have pulmonary fibrosis and since I have been > sick for 6 years already, even more rare, not unheard of, just rare. > So I am a model case!! Anyhoo, due to this fact that I AM so rare, > he thinks there is an underlying disease causing the PF, so I get > blood work (10 tubes of blood) for various autoimmune diseases. He > is leaning towards Sjogren's or scleroderma (mostly scleroderma for > which also there is no cure). Dr. did a heart exam and looked > at the veins in my neck before talking to Dr. de Andrade who decided > I needed another chest CT (my last one was in February 2008), so I > had that done (without contrast thank God!!) and also that I needed > an ultrasound of my heart to check for blood

flow to the heart and > for any blockages to the valves. All in all, he said if I don't hear > from them in a week, to call them to get the results. Other than > that, he didn't change any of my medications, except to decrease the > prednisone even further to 10 mg a day. He said he wants me to get > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I > told him I had gained 20 pounds since being on them starting in > January, and told him I have moon faces and he agreed. He said they > want me lean and healthy and I did not need to be on that for sure. > Any weight gain is out of the question, he said. He told me I have > to keep moving. He told me to eat lean proteins, fruits, and veggies > and no snacks. He PROMISED me the weight will come off. He said he > expects me to lose 10 pounds rather quickly. I sure hope he is > right, because I am

miserable and I told him so, too!! He said there > are no real medications to treat PF, and I knew that, but he said > when I come back, I can decide either to go with the Imuran and N-> Acetyl-Cysteine (NAC), which is all the best they know at this point > to give patients with PF, or I can try an experimental drug (clinical > trial), which I don't know what the side effects will be, but I am > kinda leaning towards doing anyway, because I feel like even if it > doesn't help me, it may help some other person with this stupid > disease on down the road and it would be worth it. As for lung > transplant, I don't yet qualify because my sats are not low enough > and I am not on oxygen yet. Note that I said "YET." He said the key > to prolonging oxygen use as long as possible is to stay as active and > healthy as possible and that is what I am going to try and do. >

(my grandson) is here with me this summer, and he really > helps to keep me motivated and I think I need that right now. Also > the docs were really glad to know that I am in pulmonary rehab and > that I am going to stay in the Wellness Program when I get done with > the rehab program. All in all, even though I did get some not so > good news, I feel like I got some good news, also, so until next week > or whenever I get the results, I am just trying to keep my self in > exercise and health mode the best I can and keep going.> > So that was my Birmingham visit. My parents went with me and we > really had a nice trip. I don't know what I would do without them. > They have been my rock through all of this. Thank God for my Mama > and Daddy!!> > I hope you all have a great week and now that I am back I hope to be > able to keep up with posts

better and write more than I have been. I > do reads all the posts and think of each and every one of you > everyday. You are my air family and you are my rock, as well. Don't > know what I would do without you guys, either!! I love you all!!> > Have a great day!!> > Caro>

June 19, 2008

Hi all, I just had a pacemaker install in my chest because my pulse was

down 30to 40 and sometime stop altogether it's been 4 days now and feel

better already. Take care all of you. Guy IPF 03

> >

> > Hi All,

> >

> > Sorry I haven't posted in a few days again, but I am back from

> > Birmingham. Still don't know anything definite other than the

> > diagnosis I already have of UIP. First when I got there, they did

> > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't

> > even feel it, but not this time. She had to pry (her words)). Then

> > I had to do PFTs, which showed 57% lung function, compared to the

68%

> > I had in December. Next, I visited with the doc. Actually there

> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was

> > the Assistant Professor). His name was Dr. , very nice guy.

> > He took down all my history and said he thinks I may have pulmonary

> > hypertension (which would explain the rapid heart rate). He did exam

> > and then goes to discuss with Dr. de Andrade, who comes back in and

> > again, very nice guy. He explains that it is very rare in a woman

> > under the age of 50 to have pulmonary fibrosis and since I have been

> > sick for 6 years already, even more rare, not unheard of, just rare.

> > So I am a model case!! Anyhoo, due to this fact that I AM so rare,

> > he thinks there is an underlying disease causing the PF, so I get

> > blood work (10 tubes of blood) for various autoimmune diseases. He

> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for

> > which also there is no cure). Dr. did a heart exam and looked

> > at the veins in my neck before talking to Dr. de Andrade who decided

> > I needed another chest CT (my last one was in February 2008), so I

> > had that done (without contrast thank God!!) and also that I needed

> > an ultrasound of my heart to check for blood flow to the heart and

> > for any blockages to the valves. All in all, he said if I don't hear

> > from them in a week, to call them to get the results. Other than

> > that, he didn't change any of my medications, except to decrease the

> > prednisone even further to 10 mg a day. He said he wants me to get

> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I

> > told him I had gained 20 pounds since being on them starting in

> > January, and told him I have moon faces and he agreed. He said they

> > want me lean and healthy and I did not need to be on that for sure.

> > Any weight gain is out of the question, he said. He told me I have

> > to keep moving. He told me to eat lean proteins, fruits, and veggies

> > and no snacks. He PROMISED me the weight will come off. He said he

> > expects me to lose 10 pounds rather quickly. I sure hope he is

> > right, because I am miserable and I told him so, too!! He said there

> > are no real medications to treat PF, and I knew that, but he said

> > when I come back, I can decide either to go with the Imuran and N-

> > Acetyl-Cysteine (NAC), which is all the best they know at this point

> > to give patients with PF, or I can try an experimental drug

(clinical

> > trial), which I don't know what the side effects will be, but I am

> > kinda leaning towards doing anyway, because I feel like even if it

> > doesn't help me, it may help some other person with this stupid

> > disease on down the road and it would be worth it. As for lung

> > transplant, I don't yet qualify because my sats are not low enough

> > and I am not on oxygen yet. Note that I said " YET. " He said the key

> > to prolonging oxygen use as long as possible is to stay as active

and

> > healthy as possible and that is what I am going to try and do.

> > (my grandson) is here with me this summer, and he really

> > helps to keep me motivated and I think I need that right now. Also

> > the docs were really glad to know that I am in pulmonary rehab and

> > that I am going to stay in the Wellness Program when I get done with

> > the rehab program. All in all, even though I did get some not so

> > good news, I feel like I got some good news, also, so until next

week

> > or whenever I get the results, I am just trying to keep my self in

> > exercise and health mode the best I can and keep going.

> >

> > So that was my Birmingham visit. My parents went with me and we

> > really had a nice trip. I don't know what I would do without them.

> > They have been my rock through all of this. Thank God for my Mama

> > and Daddy!!

> >

> > I hope you all have a great week and now that I am back I hope to be

> > able to keep up with posts better and write more than I have been. I

> > do reads all the posts and think of each and every one of you

> > everyday. You are my air family and you are my rock, as well. Don't

> > know what I would do without you guys, either!! I love you all!!

> >

> > Have a great day!!

> >

> > Caro

> >

>

June 19, 2008

Caro, Wow seems you have been threw alot, If you do not mind how old are you now?

God Bless !!

dragonflymcs

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

< Click on me !!

Re: Birmingham

Hi all, I just had a pacemaker install in my chest because my pulse wasdown 30to 40 and sometime stop altogether it's been 4 days now and feelbetter already. Take care all of you. Guy IPF 03> >> > Hi All,> >> > Sorry I haven't posted in a few days again, but I am back from> > Birmingham. Still don't know anything definite other than the> > diagnosis I already have of UIP. First when I got there, they did> >

ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > even feel it, but not this time. She had to pry (her words)). Then> > I had to do PFTs, which showed 57% lung function, compared to the68%> > I had in December. Next, I visited with the doc. Actually there> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > the Assistant Professor). His name was Dr. , very nice guy.> > He took down all my history and said he thinks I may have pulmonary> > hypertension (which would explain the rapid heart rate). He did exam> > and then goes to discuss with Dr. de Andrade, who comes back in and> > again, very nice guy. He explains that it is very rare in a woman> > under the age of 50 to have pulmonary fibrosis and since I have been> > sick for 6 years already, even more rare, not unheard of, just rare.>

> So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > he thinks there is an underlying disease causing the PF, so I get> > blood work (10 tubes of blood) for various autoimmune diseases. He> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > which also there is no cure). Dr. did a heart exam and looked> > at the veins in my neck before talking to Dr. de Andrade who decided> > I needed another chest CT (my last one was in February 2008), so I> > had that done (without contrast thank God!!) and also that I needed> > an ultrasound of my heart to check for blood flow to the heart and> > for any blockages to the valves. All in all, he said if I don't hear> > from them in a week, to call them to get the results. Other than> > that, he didn't change any of my medications, except to decrease the>

> prednisone even further to 10 mg a day. He said he wants me to get> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > told him I had gained 20 pounds since being on them starting in> > January, and told him I have moon faces and he agreed. He said they> > want me lean and healthy and I did not need to be on that for sure.> > Any weight gain is out of the question, he said. He told me I have> > to keep moving. He told me to eat lean proteins, fruits, and veggies> > and no snacks. He PROMISED me the weight will come off. He said he> > expects me to lose 10 pounds rather quickly. I sure hope he is> > right, because I am miserable and I told him so, too!! He said there> > are no real medications to treat PF, and I knew that, but he said> > when I come back, I can decide either to go with the Imuran and N-> >

Acetyl-Cysteine (NAC), which is all the best they know at this point> > to give patients with PF, or I can try an experimental drug(clinical> > trial), which I don't know what the side effects will be, but I am> > kinda leaning towards doing anyway, because I feel like even if it> > doesn't help me, it may help some other person with this stupid> > disease on down the road and it would be worth it. As for lung> > transplant, I don't yet qualify because my sats are not low enough> > and I am not on oxygen yet. Note that I said "YET." He said the key> > to prolonging oxygen use as long as possible is to stay as activeand> > healthy as possible and that is what I am going to try and do.> > (my grandson) is here with me this summer, and he really> > helps to keep me motivated and I think I need that right now. Also> > the

docs were really glad to know that I am in pulmonary rehab and> > that I am going to stay in the Wellness Program when I get done with> > the rehab program. All in all, even though I did get some not so> > good news, I feel like I got some good news, also, so until nextweek> > or whenever I get the results, I am just trying to keep my self in> > exercise and health mode the best I can and keep going.> >> > So that was my Birmingham visit. My parents went with me and we> > really had a nice trip. I don't know what I would do without them.> > They have been my rock through all of this. Thank God for my Mama> > and Daddy!!> >> > I hope you all have a great week and now that I am back I hope to be> > able to keep up with posts better and write more than I have been. I> > do reads all the posts and think of each and

every one of you> > everyday. You are my air family and you are my rock, as well. Don't> > know what I would do without you guys, either!! I love you all!!> >> > Have a great day!!> >> > Caro> >>

June 19, 2008

Hi Guy,

That makes you our REAL Techno fella! Amazing isn't it, what can be done surgically these days.

Have they told you all the electronic gadgets that might 'talk' to your pace maker. My bro-in-law got one, hopped on his motor bike a week later & got soooo sick in his stomach he nearly passed out. OOOOPS - he later found out that engines from bikes , cars etc can 'hook into' the rhythm of the pacemaker itself! The motorbike has since been sold! He's adjusted to cars okay though after he got a 'Tune-up'

Wonderful World ain't it!

Cheers & good to see you posted again,

in Oz

> > >> > > Hi All,> > >> > > Sorry I haven't posted in a few days again, but I am back from> > > Birmingham. Still don't know anything definite other than the> > > diagnosis I already have of UIP. First when I got there, they did> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > > even feel it, but not this time. She had to pry (her words)). Then> > > I had to do PFTs, which showed 57% lung function, compared to the> 68%> > > I had in December. Next, I visited with the doc. Actually there> > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > the Assistant Professor). His name was Dr. , very nice guy.> > > He took down all my history and said he thinks I may have pulmonary> > > hypertension (which would explain the rapid heart rate). He did exam> > > and then goes to discuss with Dr. de Andrade, who comes back in and> > > again, very nice guy. He explains that it is very rare in a woman> > > under the age of 50 to have pulmonary fibrosis and since I have been> > > sick for 6 years already, even more rare, not unheard of, just rare.> > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > he thinks there is an underlying disease causing the PF, so I get> > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > > which also there is no cure). Dr. did a heart exam and looked> > > at the veins in my neck before talking to Dr. de Andrade who decided> > > I needed another chest CT (my last one was in February 2008), so I> > > had that done (without contrast thank God!!) and also that I needed> > > an ultrasound of my heart to check for blood flow to the heart and> > > for any blockages to the valves. All in all, he said if I don't hear> > > from them in a week, to call them to get the results. Other than> > > that, he didn't change any of my medications, except to decrease the> > > prednisone even further to 10 mg a day. He said he wants me to get> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > told him I had gained 20 pounds since being on them starting in> > > January, and told him I have moon faces and he agreed. He said they> > > want me lean and healthy and I did not need to be on that for sure.> > > Any weight gain is out of the question, he said. He told me I have> > > to keep moving. He told me to eat lean proteins, fruits, and veggies> > > and no snacks. He PROMISED me the weight will come off. He said he> > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > right, because I am miserable and I told him so, too!! He said there> > > are no real medications to treat PF, and I knew that, but he said> > > when I come back, I can decide either to go with the Imuran and N-> > > Acetyl-Cysteine (NAC), which is all the best they know at this point> > > to give patients with PF, or I can try an experimental drug> (clinical> > > trial), which I don't know what the side effects will be, but I am> > > kinda leaning towards doing anyway, because I feel like even if it> > > doesn't help me, it may help some other person with this stupid> > > disease on down the road and it would be worth it. As for lung> > > transplant, I don't yet qualify because my sats are not low enough> > > and I am not on oxygen yet. Note that I said "YET." He said the key> > > to prolonging oxygen use as long as possible is to stay as active> and> > > healthy as possible and that is what I am going to try and do.> > > (my grandson) is here with me this summer, and he really> > > helps to keep me motivated and I think I need that right now. Also> > > the docs were really glad to know that I am in pulmonary rehab and> > > that I am going to stay in the Wellness Program when I get done with> > > the rehab program. All in all, even though I did get some not so> > > good news, I feel like I got some good news, also, so until next> week> > > or whenever I get the results, I am just trying to keep my self in> > > exercise and health mode the best I can and keep going.> > >> > > So that was my Birmingham visit. My parents went with me and we> > > really had a nice trip. I don't know what I would do without them.> > > They have been my rock through all of this. Thank God for my Mama> > > and Daddy!!> > >> > > I hope you all have a great week and now that I am back I hope to be> > > able to keep up with posts better and write more than I have been. I> > > do reads all the posts and think of each and every one of you> > > everyday. You are my air family and you are my rock, as well. Don't> > > know what I would do without you guys, either!! I love you all!!> > >> > > Have a great day!!> > >> > > Caro> > >> >>

June 19, 2008

Yes they told me about electronic gadgets but nothing about cars

bikes ect. hope I can hop on my law mower tractor !!!!Nice to be back

Thanks. Guy

> > > >

> > > > Hi All,

> > > >

> > > > Sorry I haven't posted in a few days again, but I am back from

> > > > Birmingham. Still don't know anything definite other than the

> > > > diagnosis I already have of UIP. First when I got there, they

did

> > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I

> didn't

> > > > even feel it, but not this time. She had to pry (her words)).

Then

> > > > I had to do PFTs, which showed 57% lung function, compared to

the

> > 68%

> > > > I had in December. Next, I visited with the doc. Actually

there

> > > > were 2 docs. The first one was a fellow of Dr. de Andrade

(who was

> > > > the Assistant Professor). His name was Dr. , very nice

guy.

> > > > He took down all my history and said he thinks I may have

> pulmonary

> > > > hypertension (which would explain the rapid heart rate). He

did

> exam

> > > > and then goes to discuss with Dr. de Andrade, who comes back

in

> and

> > > > again, very nice guy. He explains that it is very rare in a

woman

> > > > under the age of 50 to have pulmonary fibrosis and since I

have

> been

> > > > sick for 6 years already, even more rare, not unheard of, just

> rare.

> > > > So I am a model case!! Anyhoo, due to this fact that I AM so

rare,

> > > > he thinks there is an underlying disease causing the PF, so I

get

> > > > blood work (10 tubes of blood) for various autoimmune

diseases. He

> > > > is leaning towards Sjogren's or scleroderma (mostly

scleroderma

> for

> > > > which also there is no cure). Dr. did a heart exam and

> looked

> > > > at the veins in my neck before talking to Dr. de Andrade who

> decided

> > > > I needed another chest CT (my last one was in February 2008),

so I

> > > > had that done (without contrast thank God!!) and also that I

> needed

> > > > an ultrasound of my heart to check for blood flow to the

heart and

> > > > for any blockages to the valves. All in all, he said if I

don't

> hear

> > > > from them in a week, to call them to get the results. Other

than

> > > > that, he didn't change any of my medications, except to

decrease

> the

> > > > prednisone even further to 10 mg a day. He said he wants me

to get

> > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!!

I

> > > > told him I had gained 20 pounds since being on them starting

in

> > > > January, and told him I have moon faces and he agreed. He said

> they

> > > > want me lean and healthy and I did not need to be on that for

> sure.

> > > > Any weight gain is out of the question, he said. He told me I

have

> > > > to keep moving. He told me to eat lean proteins, fruits, and

> veggies

> > > > and no snacks. He PROMISED me the weight will come off. He

said he

> > > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > > right, because I am miserable and I told him so, too!! He said

> there

> > > > are no real medications to treat PF, and I knew that, but he

said

> > > > when I come back, I can decide either to go with the Imuran

and N-

> > > > Acetyl-Cysteine (NAC), which is all the best they know at this

> point

> > > > to give patients with PF, or I can try an experimental drug

> > (clinical

> > > > trial), which I don't know what the side effects will be, but

I am

> > > > kinda leaning towards doing anyway, because I feel like even

if it

> > > > doesn't help me, it may help some other person with this

stupid

> > > > disease on down the road and it would be worth it. As for lung

> > > > transplant, I don't yet qualify because my sats are not low

enough

> > > > and I am not on oxygen yet. Note that I said " YET. " He said

the

> key

> > > > to prolonging oxygen use as long as possible is to stay as

active

> > and

> > > > healthy as possible and that is what I am going to try and do.

> > > > (my grandson) is here with me this summer, and he

really

> > > > helps to keep me motivated and I think I need that right now.

Also

> > > > the docs were really glad to know that I am in pulmonary

rehab and

> > > > that I am going to stay in the Wellness Program when I get

done

> with

> > > > the rehab program. All in all, even though I did get some not

so

> > > > good news, I feel like I got some good news, also, so until

> > > > or whenever I get the results, I am just trying to keep my

self in

> > > > exercise and health mode the best I can and keep going.

> > > >

> > > > So that was my Birmingham visit. My parents went with me and

we

> > > > really had a nice trip. I don't know what I would do without

them.

> > > > They have been my rock through all of this. Thank God for my

Mama

> > > > and Daddy!!

> > > >

> > > > I hope you all have a great week and now that I am back I

hope to

> be

> > > > able to keep up with posts better and write more than I have

been.

> I

> > > > do reads all the posts and think of each and every one of you

> > > > everyday. You are my air family and you are my rock, as well.

> Don't

> > > > know what I would do without you guys, either!! I love you

all!!

> > > >

> > > > Have a great day!!

> > > >

> > > > Caro

> > > >

> > >

> >

>

June 19, 2008

Hi Guy, How in this world have you been (other than your heart stopping).. Sounds like you have had a rough spell.I'll be praying for you. How are you doing with the fibrosis. Gosh it's so good to hear from you. How is your grandson?? Grown I guess. Love and Prayers, Peggy (65) IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up."

June 20, 2008

Hi Peggy.

First how are you doing? I have not been on the net for a while and

there are so much messages now that it would take me a year or so to

read them all. I hope that we have not lost anyone and that all of you

friends are doing okay. I had infection in my lungs and now also have a

combo the fibrosis, the heart and ulcers but I not hurting and pretty

soon I will be doing the Tango if I can get a partner to dance with.

You all have a good day and God Bless. Guy IPF and the rest 03

>

> Hi Guy, How in this world have you been (other than your heart

> stopping).. Sounds like you have had a rough spell.

> I'll be praying for you. How are you doing with the fibrosis.

> Gosh it's so good to hear from you. How is your grandson?? Grown I

> guess.

>

> Love and Prayers, Peggy (65)

> IPF 2004, Florida

>

> " Worry looks around,

> Sorry looks back,

> Faith looks up. "

>

June 20, 2008

Oh Guy! I'm so glad to hear from you. I was looking at the albums yesterday and wondered again what happened to you.

I hope the Pacemaker does it's job and you continue to feel wonderful.

How is your grandson?

I hope to see more posts from you!

Love,

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

Re: Birmingham

Hi all, I just had a pacemaker install in my chest because my pulse wasdown 30to 40 and sometime stop altogether it's been 4 days now and feelbetter already. Take care all of you. Guy IPF 03> >> > Hi All,> >> > Sorry I haven't posted in a few days again, but I am back from> > Birmingham. Still don't know anything definite other than the> > diagnosis I already have of UIP. First when I got there, they did> > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > even feel it, but not this time. She had to pry (her words)). Then> > I had to do PFTs, which showed 57% lung function, compared to the68%> > I had in December. Next, I visited with the doc. Actually there> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > the Assistant Professor). His name was Dr. , very nice guy.> > He took down all my history and said he thinks I may have pulmonary> > hypertension (which would explain the rapid heart rate). He did exam> > and then goes to discuss with Dr. de Andrade, who comes back in and> > again, very nice guy. He explains that it is very rare in a woman> > under the age of 50 to have pulmonary fibrosis and since I have been> > sick for 6 years already, even more rare, not unheard of, just rare.> > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > he thinks there is an underlying disease causing the PF, so I get> > blood work (10 tubes of blood) for various autoimmune diseases. He> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > which also there is no cure). Dr. did a heart exam and looked> > at the veins in my neck before talking to Dr. de Andrade who decided> > I needed another chest CT (my last one was in February 2008), so I> > had that done (without contrast thank God!!) and also that I needed> > an ultrasound of my heart to check for blood flow to the heart and> > for any blockages to the valves. All in all, he said if I don't hear> > from them in a week, to call them to get the results. Other than> > that, he didn't change any of my medications, except to decrease the> > prednisone even further to 10 mg a day. He said he wants me to get> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > told him I had gained 20 pounds since being on them starting in> > January, and told him I have moon faces and he agreed. He said they> > want me lean and healthy and I did not need to be on that for sure.> > Any weight gain is out of the question, he said. He told me I have> > to keep moving. He told me to eat lean proteins, fruits, and veggies> > and no snacks. He PROMISED me the weight will come off. He said he> > expects me to lose 10 pounds rather quickly. I sure hope he is> > right, because I am miserable and I told him so, too!! He said there> > are no real medications to treat PF, and I knew that, but he said> > when I come back, I can decide either to go with the Imuran and N-> > Acetyl-Cysteine (NAC), which is all the best they know at this point> > to give patients with PF, or I can try an experimental drug(clinical> > trial), which I don't know what the side effects will be, but I am> > kinda leaning towards doing anyway, because I feel like even if it> > doesn't help me, it may help some other person with this stupid> > disease on down the road and it would be worth it. As for lung> > transplant, I don't yet qualify because my sats are not low enough> > and I am not on oxygen yet. Note that I said "YET." He said the key> > to prolonging oxygen use as long as possible is to stay as activeand> > healthy as possible and that is what I am going to try and do.> > (my grandson) is here with me this summer, and he really> > helps to keep me motivated and I think I need that right now. Also> > the docs were really glad to know that I am in pulmonary rehab and> > that I am going to stay in the Wellness Program when I get done with> > the rehab program. All in all, even though I did get some not so> > good news, I feel like I got some good news, also, so until nextweek> > or whenever I get the results, I am just trying to keep my self in> > exercise and health mode the best I can and keep going.> >> > So that was my Birmingham visit. My parents went with me and we> > really had a nice trip. I don't know what I would do without them.> > They have been my rock through all of this. Thank God for my Mama> > and Daddy!!> >> > I hope you all have a great week and now that I am back I hope to be> > able to keep up with posts better and write more than I have been. I> > do reads all the posts and think of each and every one of you> > everyday. You are my air family and you are my rock, as well. Don't> > know what I would do without you guys, either!! I love you all!!> >> > Have a great day!!> >> > Caro> >>

June 20, 2008

Hi Sher, glad to hear from you too, the grandson is doing fine and

growing pretty fast his father is 6.4 and I think he will be in that

range by the time he is 17 now only 8 and close to 5ft must be

something in the Special Kellogg's these day. Hope you are okay too

and yes I will posts more often in the future, amazing how many posts

on this site now and that's good. Take care and have a good day. Love

all of you too. Guy

> > >

> > > Hi All,

> > >

> > > Sorry I haven't posted in a few days again, but I am back from

> > > Birmingham. Still don't know anything definite other than the

> > > diagnosis I already have of UIP. First when I got there, they

did

> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I

didn't

> > > even feel it, but not this time. She had to pry (her words)).

Then

> > > I had to do PFTs, which showed 57% lung function, compared to

the

> 68%

> > > I had in December. Next, I visited with the doc. Actually

there

> > > were 2 docs. The first one was a fellow of Dr. de Andrade

(who was

> > > the Assistant Professor). His name was Dr. , very nice

guy.

> > > He took down all my history and said he thinks I may have

pulmonary

> > > hypertension (which would explain the rapid heart rate). He

did exam

> > > and then goes to discuss with Dr. de Andrade, who comes back

in and

> > > again, very nice guy. He explains that it is very rare in a

woman

> > > under the age of 50 to have pulmonary fibrosis and since I

have been

> > > sick for 6 years already, even more rare, not unheard of,

just rare.

> > > So I am a model case!! Anyhoo, due to this fact that I AM so

rare,

> > > he thinks there is an underlying disease causing the PF, so I

get

> > > blood work (10 tubes of blood) for various autoimmune

diseases. He

> > > is leaning towards Sjogren's or scleroderma (mostly

scleroderma for

> > > which also there is no cure). Dr. did a heart exam and

looked

> > > at the veins in my neck before talking to Dr. de Andrade who

decided

> > > I needed another chest CT (my last one was in February 2008),

so I

> > > had that done (without contrast thank God!!) and also that I

needed

> > > an ultrasound of my heart to check for blood flow to the

heart and

> > > for any blockages to the valves. All in all, he said if I

don't hear

> > > from them in a week, to call them to get the results. Other

than

> > > that, he didn't change any of my medications, except to

decrease the

> > > prednisone even further to 10 mg a day. He said he wants me

to get

> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!!

I

> > > told him I had gained 20 pounds since being on them starting

in

> > > January, and told him I have moon faces and he agreed. He

said they

> > > want me lean and healthy and I did not need to be on that for

sure.

> > > Any weight gain is out of the question, he said. He told me I

have

> > > to keep moving. He told me to eat lean proteins, fruits, and

veggies

> > > and no snacks. He PROMISED me the weight will come off. He

said he

> > > expects me to lose 10 pounds rather quickly. I sure hope he is

> > > right, because I am miserable and I told him so, too!! He

said there

> > > are no real medications to treat PF, and I knew that, but he

said

> > > when I come back, I can decide either to go with the Imuran

and N-

> > > Acetyl-Cysteine (NAC), which is all the best they know at

this point

> > > to give patients with PF, or I can try an experimental drug

> (clinical

> > > trial), which I don't know what the side effects will be, but

I am

> > > kinda leaning towards doing anyway, because I feel like even

if it

> > > doesn't help me, it may help some other person with this

stupid

> > > disease on down the road and it would be worth it. As for lung

> > > transplant, I don't yet qualify because my sats are not low

enough

> > > and I am not on oxygen yet. Note that I said " YET. " He said

the key

> > > to prolonging oxygen use as long as possible is to stay as

active

> and

> > > healthy as possible and that is what I am going to try and do.

> > > (my grandson) is here with me this summer, and he

really

> > > helps to keep me motivated and I think I need that right now.

Also

> > > the docs were really glad to know that I am in pulmonary

rehab and

> > > that I am going to stay in the Wellness Program when I get

done with

> > > the rehab program. All in all, even though I did get some not

so

> > > good news, I feel like I got some good news, also, so until

> > > or whenever I get the results, I am just trying to keep my

self in

> > > exercise and health mode the best I can and keep going.

> > >

> > > So that was my Birmingham visit. My parents went with me and

we

> > > really had a nice trip. I don't know what I would do without

them.

> > > They have been my rock through all of this. Thank God for my

Mama

> > > and Daddy!!

> > >

> > > I hope you all have a great week and now that I am back I

hope to be

> > > able to keep up with posts better and write more than I have

been. I

> > > do reads all the posts and think of each and every one of you

> > > everyday. You are my air family and you are my rock, as well.

Don't

> > > know what I would do without you guys, either!! I love you

all!!

> > >

> > > Have a great day!!

> > >

> > > Caro

> > >

> >

>

June 20, 2008

Guy,

It is really good to see you posting again. Glad to know that you are still hanging in there. I know that you have had really bad times, but you sound pretty chipper. I hope things are going well for you. Do you see that little grandson often?

I am still hanging on. I am in end stage, but that doesn't necessarily mean "the end"...just another scary term the docs use. I just get up every day and do the best that I can. Been kind of rocky lately, but I am strong and I will come through it.

Take care 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 > >> > Hi Guy, How in this world have you been (other than your heart > > stopping).. Sounds like you have had a rough spell.> > I'll be praying for you. How are you doing with the fibrosis.> > Gosh it's so good to hear from you. How is your grandson?? Grown I > > guess.> > > > > > Love and Prayers, Peggy (65)> > IPF 2004, Florida> > > > "Worry looks around,> > Sorry looks back,> > Faith looks up."> >>

June 20, 2008

Hi Guy,

Don't think we have "met" yet. I am fairly new to the group. Just joined this year. Nice to "meet" you and I hope you feel better soon!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: BirminghamTo: Breathe-Support Date: Friday, June 20, 2008, 11:13 AM

Hi Sher, glad to hear from you too, the grandson is doing fine and growing pretty fast his father is 6.4 and I think he will be in that range by the time he is 17 now only 8 and close to 5ft must be something in the Special Kellogg's these day. Hope you are okay too and yes I will posts more often in the future, amazing how many posts on this site now and that's good. Take care and have a good day. Love all of you too. Guy > > >> > > Hi All,> > >> > > Sorry I haven't posted in a few days again, but I am back from> > > Birmingham. Still don't know anything definite other than the> > > diagnosis I

already have of UIP. First when I got there, they did> > > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't> > > even feel it, but not this time. She had to pry (her words)). Then> > > I had to do PFTs, which showed 57% lung function, compared to the> 68%> > > I had in December. Next, I visited with the doc. Actually there> > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > the Assistant Professor). His name was Dr. , very nice guy.> > > He took down all my history and said he thinks I may have pulmonary> > > hypertension (which would explain the rapid heart rate). He did exam> > > and then goes to discuss with Dr. de Andrade, who comes back in and> > > again, very nice guy. He explains that it is very rare in a woman>

> > under the age of 50 to have pulmonary fibrosis and since I have been> > > sick for 6 years already, even more rare, not unheard of, just rare.> > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > he thinks there is an underlying disease causing the PF, so I get> > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > > which also there is no cure). Dr. did a heart exam and looked> > > at the veins in my neck before talking to Dr. de Andrade who decided> > > I needed another chest CT (my last one was in February 2008), so I> > > had that done (without contrast thank God!!) and also that I needed> > > an ultrasound of my heart to check for blood flow to the

heart and> > > for any blockages to the valves. All in all, he said if I don't hear> > > from them in a week, to call them to get the results. Other than> > > that, he didn't change any of my medications, except to decrease the> > > prednisone even further to 10 mg a day. He said he wants me to get> > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > told him I had gained 20 pounds since being on them starting in> > > January, and told him I have moon faces and he agreed. He said they> > > want me lean and healthy and I did not need to be on that for sure.> > > Any weight gain is out of the question, he said. He told me I have> > > to keep moving. He told me to eat lean proteins, fruits, and veggies> > > and no snacks. He PROMISED me the weight will

come off. He said he> > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > right, because I am miserable and I told him so, too!! He said there> > > are no real medications to treat PF, and I knew that, but he said> > > when I come back, I can decide either to go with the Imuran and N-> > > Acetyl-Cysteine (NAC), which is all the best they know at this point> > > to give patients with PF, or I can try an experimental drug> (clinical> > > trial), which I don't know what the side effects will be, but I am> > > kinda leaning towards doing anyway, because I feel like even if it> > > doesn't help me, it may help some other person with this stupid> > > disease on down the road and it would be worth it. As for lung> > > transplant, I don't yet qualify because my

sats are not low enough> > > and I am not on oxygen yet. Note that I said "YET." He said the key> > > to prolonging oxygen use as long as possible is to stay as active> and> > > healthy as possible and that is what I am going to try and do.> > > (my grandson) is here with me this summer, and he really> > > helps to keep me motivated and I think I need that right now. Also> > > the docs were really glad to know that I am in pulmonary rehab and> > > that I am going to stay in the Wellness Program when I get done with> > > the rehab program. All in all, even though I did get some not so> > > good news, I feel like I got some good news, also, so until next> week> > > or whenever I get the results, I am just trying to keep my self in> > > exercise and

health mode the best I can and keep going.> > >> > > So that was my Birmingham visit. My parents went with me and we> > > really had a nice trip. I don't know what I would do without them.> > > They have been my rock through all of this. Thank God for my Mama> > > and Daddy!!> > >> > > I hope you all have a great week and now that I am back I hope to be> > > able to keep up with posts better and write more than I have been. I> > > do reads all the posts and think of each and every one of you> > > everyday. You are my air family and you are my rock, as well. Don't> > > know what I would do without you guys, either!! I love you all!!> > >> > > Have a great day!!> > >> > > Caro> > >>

>>

June 20, 2008

I am 47. Didn't have a good day today. Have had a migraine and chest pains all day. Has eased up some now, so am hoping to have a better night. How are you doing?CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: Re: BirminghamTo: Breathe-Support Date: Thursday, June 19, 2008, 9:07 PM

Caro, Wow seems you have been threw alot, If you do not mind how old are you now?

God Bless !!

dragonflymcs

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

< Click on me !!

Re: Birmingham

Hi all, I just had a pacemaker install in my chest because my pulse wasdown 30to 40 and sometime stop altogether it's been 4 days now and feelbetter already. Take care all of you. Guy IPF 03> >> > Hi All,> >> > Sorry I haven't posted in a few days again, but I am back from> > Birmingham. Still don't know anything definite other than the> > diagnosis I already have of UIP. First when I got there, they did> > ABGs (OMG!! It hurt so bad!! I had it done once before and I didn't>

> even feel it, but not this time. She had to pry (her words)). Then> > I had to do PFTs, which showed 57% lung function, compared to the68%> > I had in December. Next, I visited with the doc. Actually there> > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > the Assistant Professor). His name was Dr. , very nice guy.> > He took down all my history and said he thinks I may have pulmonary> > hypertension (which would explain the rapid heart rate). He did exam> > and then goes to discuss with Dr. de Andrade, who comes back in and> > again, very nice guy. He explains that it is very rare in a woman> > under the age of 50 to have pulmonary fibrosis and since I have been> > sick for 6 years already, even more rare, not unheard of, just rare.> > So I am a model case!! Anyhoo, due to this fact that I AM so

rare,> > he thinks there is an underlying disease causing the PF, so I get> > blood work (10 tubes of blood) for various autoimmune diseases. He> > is leaning towards Sjogren's or scleroderma (mostly scleroderma for> > which also there is no cure). Dr. did a heart exam and looked> > at the veins in my neck before talking to Dr. de Andrade who decided> > I needed another chest CT (my last one was in February 2008), so I> > had that done (without contrast thank God!!) and also that I needed> > an ultrasound of my heart to check for blood flow to the heart and> > for any blockages to the valves. All in all, he said if I don't hear> > from them in a week, to call them to get the results. Other than> > that, he didn't change any of my medications, except to decrease the> > prednisone even further to 10 mg a day. He said he wants me

to get> > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > told him I had gained 20 pounds since being on them starting in> > January, and told him I have moon faces and he agreed. He said they> > want me lean and healthy and I did not need to be on that for sure.> > Any weight gain is out of the question, he said. He told me I have> > to keep moving. He told me to eat lean proteins, fruits, and veggies> > and no snacks. He PROMISED me the weight will come off. He said he> > expects me to lose 10 pounds rather quickly. I sure hope he is> > right, because I am miserable and I told him so, too!! He said there> > are no real medications to treat PF, and I knew that, but he said> > when I come back, I can decide either to go with the Imuran and N-> > Acetyl-Cysteine (NAC), which is all the best they know at this

point> > to give patients with PF, or I can try an experimental drug(clinical> > trial), which I don't know what the side effects will be, but I am> > kinda leaning towards doing anyway, because I feel like even if it> > doesn't help me, it may help some other person with this stupid> > disease on down the road and it would be worth it. As for lung> > transplant, I don't yet qualify because my sats are not low enough> > and I am not on oxygen yet. Note that I said "YET." He said the key> > to prolonging oxygen use as long as possible is to stay as activeand> > healthy as possible and that is what I am going to try and do.> > (my grandson) is here with me this summer, and he really> > helps to keep me motivated and I think I need that right now. Also> > the docs were really glad to know that I am in pulmonary rehab

and> > that I am going to stay in the Wellness Program when I get done with> > the rehab program. All in all, even though I did get some not so> > good news, I feel like I got some good news, also, so until nextweek> > or whenever I get the results, I am just trying to keep my self in> > exercise and health mode the best I can and keep going.> >> > So that was my Birmingham visit. My parents went with me and we> > really had a nice trip. I don't know what I would do without them.> > They have been my rock through all of this. Thank God for my Mama> > and Daddy!!> >> > I hope you all have a great week and now that I am back I hope to be> > able to keep up with posts better and write more than I have been. I> > do reads all the posts and think of each and every one of you> > everyday. You are my air

family and you are my rock, as well. Don't> > know what I would do without you guys, either!! I love you all!!> >> > Have a great day!!> >> > Caro> >>

June 27, 2008

Caro,

Excellent news about your heart Caro!! I'm so happy for you!

About the Sjorgren's.... I know exactly how you feel. When Dr. on told me I have some type of "undifferentiated connective tissue disease" and that's what caused my PF I felt like jumping for joy. Then I wondered why I felt that way. I think as humans we just like to have explanations. We like to understand the reasons for things and have them make sense. At least that's how I am. Having a known disease that caused the problem in my lungs is somehow easier for me to take than just a random lightning bolt to the lungs that no one understands and can do nothing about.

Keep looking after yourself and stay strong!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Birmingham

Hi all,Well, finally got a call today from Dr. de Andrade from University of Alabama at Birmingham. The results are in. Ultrasound of my heart was okay. GREAT!! Chest CT showed that he thought my disease is not as advanced as he thought from reading the CT report from my December CT; however, he did not have my previous CT from December to compare with, so I am bringing it to my next visit to see how fast I am progressing. Next came the blood work. Here we go. He said the main thing I want to talk to you about is the blood work. Okay, I am ready. Something is wrong, because the doctor himself called me instead of the nurse. I have never had that happen!! Anyhoo --basically my blood test for Sjogren's antibodies came back positive. So, I don't have scleroderma but I probably do have Sjogren's. At least that would explain why I have PF. He said he doesn't want to base a diagnosis on just a

blood test, so he wants me to have 2 other tests within the next month or so. One is I have to go to an eye doctor and have a test to see how much tears my tear ducts are producing. The other is I have to go to an oral surgeon and get a biopsy on my salivary glands to see how much saliva I am producing. He said a dry mouth is a symptom of Sjogren's. I always have a dry mouth. Have had one as long as I can remember. When I told my mom and dad what the doc said, my daddy told me they had to take me to the doc when I was a baby because my tear ducts were "stopped up" and whatever they did to my eyes, my tears shot across the room and he cried whatever they did to me. The doc told me that Tonya, the nurse, will call me tomorrow or Monday and give me an appointment to go and get the tests done and have a definite diagnosis. He wants to up my Imuran from 100 mg a day to 150 mg a day to be taken in the

mornings instead of twice a day and he wants to continue to decrease my prednisone to 5 mg and within the next few months I will totaly be off of it. I told him I had lost 7 pounds and he said for me to stay healthy, keep exercising, and keep losing weight. The downside is that the I don't qualify for clinical trials if I have Sjogren's. The clinical trials are for IPF and if I have Sjogren's then that is the cause for the UIP which the biopsy showed in January. BUT -- he did say the the Imuran at 150 mg a day should slow down the disease progress significantly so for that I AM ALL FOR IT!! Anything to slow down the use for oxygen or the need for a lung transplant I am all for it!! So, overall, I am really pleased with the report. Even if it means I more than likely have another disease, he said the medication can slow down the progress, so I am happy. Am I wrong to be so excited? Any hope these

days is a good thing to me. At least I kinda sorta know what has been going on with me all this time.If anyone else has a chance to go to one of the 13 facilities that deal with this particular disease PF, definitely GO!! You can't go wrong. Especially if you can go to Birmingham, I would totally recommend it! They are the best!! Wow!! To have a doctor call me personally, I feel SO SPECIAL!! Just totally made my day!!Hope you all have a good night!!Caro

June 27, 2008

Thanks MB --

I think maybe that was it, too. I just needed a reason and now I feel like I have one, even though it doesn't change the eventual outcome, BUT he did say it may prolong it and for that I am extremely grateful!! I am watching my weight everyday, trying to eat healthy (even though I splurge now and then), and trying to exercise whenever I feel like I can. Yesterday I was really tired and only walked the 1 mile and that was the bulk of my exercise for the day. I even took a nap yesterday afternoon for an hour. Couldn't keep my eyes open. I find that when I get extremely tired like that, it usually means I fixing to have another "attack" and get really sick again, so I try and watch for the signs and take better care of myself when I feel like it is coming on again. Doesn't ALWAYS work, but works fairly well most of the time. I just want to enjoy this phase of the disease as long as possible cuz I know

it is only going to get worse from here on out but I try not to think about it and just deal with one day at a time. Does that make sense?

I am ready to start the work day now. Have pulmo rehab at 1P to 3P and really need that workout today since I slacked yesterday -- HEE!! HEE!!

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: BirminghamTo: Breathe-Support Date: Friday, June 27, 2008, 7:16 AM

Caro,

Excellent news about your heart Caro!! I'm so happy for you!

About the Sjorgren's.. .. I know exactly how you feel. When Dr. on told me I have some type of "undifferentiated connective tissue disease" and that's what caused my PF I felt like jumping for joy. Then I wondered why I felt that way. I think as humans we just like to have explanations. We like to understand the reasons for things and have them make sense. At least that's how I am. Having a known disease that caused the problem in my lungs is somehow easier for me to take than just a random lightning bolt to the lungs that no one understands and can do nothing about.

Keep looking after yourself and stay strong!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Birmingham

Hi all,Well, finally got a call today from Dr. de Andrade from University of Alabama at Birmingham. The results are in. Ultrasound of my heart was okay. GREAT!! Chest CT showed that he thought my disease is not as advanced as he thought from reading the CT report from my December CT; however, he did not have my previous CT from December to compare with, so I am bringing it to my next visit to see how fast I am progressing. Next came the blood work. Here we go. He said the main thing I want to talk to you about is the blood work. Okay, I am ready. Something is wrong, because the doctor himself called me instead of the nurse. I have never had that happen!! Anyhoo --basically my blood test for Sjogren's antibodies came back positive. So, I don't have scleroderma but I probably do have Sjogren's. At least that would explain why I have PF. He said he doesn't want to base a diagnosis on just a

blood test, so he wants me to have 2 other tests within the next month or so. One is I have to go to an eye doctor and have a test to see how much tears my tear ducts are producing. The other is I have to go to an oral surgeon and get a biopsy on my salivary glands to see how much saliva I am producing. He said a dry mouth is a symptom of Sjogren's. I always have a dry mouth. Have had one as long as I can remember. When I told my mom and dad what the doc said, my daddy told me they had to take me to the doc when I was a baby because my tear ducts were "stopped up" and whatever they did to my eyes, my tears shot across the room and he cried whatever they did to me. The doc told me that Tonya, the nurse, will call me tomorrow or Monday and give me an appointment to go and get the tests done and have a definite diagnosis. He wants to up my Imuran from 100 mg a day to 150 mg a day to be taken in the

mornings instead of twice a day and he wants to continue to decrease my prednisone to 5 mg and within the next few months I will totaly be off of it. I told him I had lost 7 pounds and he said for me to stay healthy, keep exercising, and keep losing weight. The downside is that the I don't qualify for clinical trials if I have Sjogren's. The clinical trials are for IPF and if I have Sjogren's then that is the cause for the UIP which the biopsy showed in January. BUT -- he did say the the Imuran at 150 mg a day should slow down the disease progress significantly so for that I AM ALL FOR IT!! Anything to slow down the use for oxygen or the need for a lung transplant I am all for it!! So, overall, I am really pleased with the report. Even if it means I more than likely have another disease, he said the medication can slow down the progress, so I am happy. Am I wrong to be so excited? Any hope these

days is a good thing to me. At least I kinda sorta know what has been going on with me all this time.If anyone else has a chance to go to one of the 13 facilities that deal with this particular disease PF, definitely GO!! You can't go wrong. Especially if you can go to Birmingham, I would totally recommend it! They are the best!! Wow!! To have a doctor call me personally, I feel SO SPECIAL!! Just totally made my day!!Hope you all have a good night!!Caro

June 27, 2008

Caro,

So glad that you have intelligent physicians looking after you. Sjogren's is a stepchild in the connective tissue disease world. It is a bear to live with. Be especially cautious about your dental care. I could not take Imuran, but I have been taking Cellcept.

A good doctor will make his own phone calls. The patient deserves it. It takes the same amount of time to tell an assistant what to tell you that it takes to pick up the phone and tell you himself.

With the new information you are better able to fight the fight. Good for 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

>> Hi all,> > Well, finally got a call today from Dr. de Andrade from University of > Alabama at Birmingham. The results are in. Ultrasound of my heart > was okay. GREAT!! Chest CT showed that he thought my disease is not > as advanced as he thought from reading the CT report from my December > CT; however, he did not have my previous CT from December to compare > with, so I am bringing it to my next visit to see how fast I am > progressing. Next came the blood work. Here we go. He said the main > thing I want to talk to you about is the blood work. Okay, I am > ready. Something is wrong, because the doctor himself called me > instead of the nurse. I have never had that happen!! Anyhoo --> basically my blood test for Sjogren's antibodies came back positive. > So, I don't have scleroderma but I probably do have Sjogren's. At > least that would explain why I have PF. He said he doesn't want to > base a diagnosis on just a blood test, so he wants me to have 2 other > tests within the next month or so. One is I have to go to an eye > doctor and have a test to see how much tears my tear ducts are > producing. The other is I have to go to an oral surgeon and get a > biopsy on my salivary glands to see how much saliva I am producing. > He said a dry mouth is a symptom of Sjogren's. I always have a dry > mouth. Have had one as long as I can remember. When I told my mom > and dad what the doc said, my daddy told me they had to take me to > the doc when I was a baby because my tear ducts were "stopped up" and > whatever they did to my eyes, my tears shot across the room and he > cried whatever they did to me. The doc told me that Tonya, the nurse, > will call me tomorrow or Monday and give me an appointment to go and > get the tests done and have a definite diagnosis. He wants to up my > Imuran from 100 mg a day to 150 mg a day to be taken in the mornings > instead of twice a day and he wants to continue to decrease my > prednisone to 5 mg and within the next few months I will totaly be > off of it. I told him I had lost 7 pounds and he said for me to stay > healthy, keep exercising, and keep losing weight. The downside is > that the I don't qualify for clinical trials if I have Sjogren's. > The clinical trials are for IPF and if I have Sjogren's then that is > the cause for the UIP which the biopsy showed in January. BUT -- he > did say the the Imuran at 150 mg a day should slow down the disease > progress significantly so for that I AM ALL FOR IT!! Anything to > slow down the use for oxygen or the need for a lung transplant I am > all for it!! So, overall, I am really pleased with the report. Even > if it means I more than likely have another disease, he said the > medication can slow down the progress, so I am happy. Am I wrong to > be so excited? Any hope these days is a good thing to me. At least > I kinda sorta know what has been going on with me all this time.> > If anyone else has a chance to go to one of the 13 facilities that > deal with this particular disease PF, definitely GO!! You can't go > wrong. Especially if you can go to Birmingham, I would totally > recommend it! They are the best!! Wow!! To have a doctor call me > personally, I feel SO SPECIAL!! Just totally made my day!!> > Hope you all have a good night!!> > Caro>

June 27, 2008

Hi Joyce,

You have Sjogren's, too, right? Can you tell me anything about it? All I know is he said it affects your tear ducts, your salivary glands, your joints, and your major organs and if it is primary Sjogren's, then that is all it is (plus the UIP), but if it is secondary Sjogren's, then there could be other autoimmune diseases, such as lupus, rheumatoid arthritis, or scleroderma. I only read that off the Internet. Would love to know how it has affected you personally if you feel like telling. Hope you are doing well. I am so glad to hear from you. I am just wondering what kind of bear I am dealing with now. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: BirminghamTo: Breathe-Support Date: Friday, June 27, 2008, 1:35 PM

Caro,

So glad that you have intelligent physicians looking after you. Sjogren's is a stepchild in the connective tissue disease world. It is a bear to live with. Be especially cautious about your dental care. I could not take Imuran, but I have been taking Cellcept.

A good doctor will make his own phone calls. The patient deserves it. It takes the same amount of time to tell an assistant what to tell you that it takes to pick up the phone and tell you himself.

With the new information you are better able to fight the fight. Good for 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

>> Hi all,> > Well, finally got a call today from Dr. de Andrade from University of > Alabama at Birmingham. The results are in. Ultrasound of my heart > was okay. GREAT!! Chest CT showed that he thought my disease is not > as advanced as he thought from reading the CT report from my December > CT; however, he did not have my previous CT from December to compare > with, so I am bringing it to my next visit to see how fast I am > progressing. Next came the blood work. Here we go. He said the main > thing I want to talk to you about is the blood work. Okay, I am > ready. Something is wrong, because the doctor himself called me > instead of the nurse. I have never had that happen!! Anyhoo --> basically my blood test for Sjogren's antibodies came back positive.

> So, I don't have scleroderma but I probably do have Sjogren's. At > least that would explain why I have PF. He said he doesn't want to > base a diagnosis on just a blood test, so he wants me to have 2 other > tests within the next month or so. One is I have to go to an eye > doctor and have a test to see how much tears my tear ducts are > producing. The other is I have to go to an oral surgeon and get a > biopsy on my salivary glands to see how much saliva I am producing. > He said a dry mouth is a symptom of Sjogren's. I always have a dry > mouth. Have had one as long as I can remember. When I told my mom > and dad what the doc said, my daddy told me they had to take me to > the doc when I was a baby because my tear ducts were "stopped up" and > whatever they did to my eyes, my tears shot across the room and he > cried whatever they did to me. The doc told me

that Tonya, the nurse, > will call me tomorrow or Monday and give me an appointment to go and > get the tests done and have a definite diagnosis. He wants to up my > Imuran from 100 mg a day to 150 mg a day to be taken in the mornings > instead of twice a day and he wants to continue to decrease my > prednisone to 5 mg and within the next few months I will totaly be > off of it. I told him I had lost 7 pounds and he said for me to stay > healthy, keep exercising, and keep losing weight. The downside is > that the I don't qualify for clinical trials if I have Sjogren's. > The clinical trials are for IPF and if I have Sjogren's then that is > the cause for the UIP which the biopsy showed in January. BUT -- he > did say the the Imuran at 150 mg a day should slow down the disease > progress significantly so for that I AM ALL FOR IT!! Anything to > slow down the use

for oxygen or the need for a lung transplant I am > all for it!! So, overall, I am really pleased with the report. Even > if it means I more than likely have another disease, he said the > medication can slow down the progress, so I am happy. Am I wrong to > be so excited? Any hope these days is a good thing to me. At least > I kinda sorta know what has been going on with me all this time.> > If anyone else has a chance to go to one of the 13 facilities that > deal with this particular disease PF, definitely GO!! You can't go > wrong. Especially if you can go to Birmingham, I would totally > recommend it! They are the best!! Wow!! To have a doctor call me > personally, I feel SO SPECIAL!! Just totally made my day!!> > Hope you all have a good night!!> > Caro>

June 27, 2008

Caro,

Yes, I do have Sjogren's, along with RA, Lupus and various other forms of connective tissue disease. Many of the symptoms and tests for Lupus overlap.

The worst part of Sjogren's is what it does to your teeth and gums. Because Saliva is in short supply, bacteria grow rapidly and plaque gathers and stick to the gum line. Then of course comes decay and gum disease. It makes you susceptible to sore throat and canker sores.

Then there are the salivary glands which get stopped up beause there is not enough flow to keep them cleaned out. If you ever feel like you have the mumps, it is Sjogren's. Go directly to an ENT and they will dialate the duct and instant relief. This also happens under the tongue and it is soooooo painful.

There is medication that helps. I don't take it because I am taking every other drug on the market. Drink lots of water and use sugar free lemon drops.

I never did all that biopsy and other testing. Just diagnosed with bloodwork and symptoms. I have had a tumor removed from my parotid gland due the Sjogren's. It was quite an adventure. While the incision was healing, I had saliva run out of my face at the sight of food, etc. Very attractive!

Get Biotene toothpaste, mouthwash and other assorted products. Keep your mouth wet and clean. Good luck.

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> >> > Hi all,> > > > Well, finally got a call today from Dr. de Andrade from University of > > Alabama at Birmingham. The results are in. Ultrasound of my heart > > was okay. GREAT!! Chest CT showed that he thought my disease is not > > as advanced as he thought from reading the CT report from my December > > CT; however, he did not have my previous CT from December to compare > > with, so I am bringing it to my next visit to see how fast I am > > progressing. Next came the blood work. Here we go. He said the main > > thing I want to talk to you about is the blood work. Okay, I am > > ready. Something is wrong, because the doctor himself called me > > instead of the nurse. I have never had that happen!! Anyhoo --> > basically my blood test for Sjogren's antibodies came back positive. > > So, I don't have scleroderma but I probably do have Sjogren's. At > > least that would explain why I have PF. He said he doesn't want to > > base a diagnosis on just a blood test, so he wants me to have 2 other > > tests within the next month or so. One is I have to go to an eye > > doctor and have a test to see how much tears my tear ducts are > > producing. The other is I have to go to an oral surgeon and get a > > biopsy on my salivary glands to see how much saliva I am producing. > > He said a dry mouth is a symptom of Sjogren's. I always have a dry > > mouth. Have had one as long as I can remember. When I told my mom > > and dad what the doc said, my daddy told me they had to take me to > > the doc when I was a baby because my tear ducts were "stopped up" and > > whatever they did to my eyes, my tears shot across the room and he > > cried whatever they did to me. The doc told me that Tonya, the nurse, > > will call me tomorrow or Monday and give me an appointment to go and > > get the tests done and have a definite diagnosis. He wants to up my > > Imuran from 100 mg a day to 150 mg a day to be taken in the mornings > > instead of twice a day and he wants to continue to decrease my > > prednisone to 5 mg and within the next few months I will totaly be > > off of it. I told him I had lost 7 pounds and he said for me to stay > > healthy, keep exercising, and keep losing weight. The downside is > > that the I don't qualify for clinical trials if I have Sjogren's. > > The clinical trials are for IPF and if I have Sjogren's then that is > > the cause for the UIP which the biopsy showed in January. BUT -- he > > did say the the Imuran at 150 mg a day should slow down the disease > > progress significantly so for that I AM ALL FOR IT!! Anything to > > slow down the use for oxygen or the need for a lung transplant I am > > all for it!! So, overall, I am really pleased with the report. Even > > if it means I more than likely have another disease, he said the > > medication can slow down the progress, so I am happy. Am I wrong to > > be so excited? Any hope these days is a good thing to me. At least > > I kinda sorta know what has been going on with me all this time.> > > > If anyone else has a chance to go to one of the 13 facilities that > > deal with this particular disease PF, definitely GO!! You can't go > > wrong. Especially if you can go to Birmingham, I would totally > > recommend it! They are the best!! Wow!! To have a doctor call me > > personally, I feel SO SPECIAL!! Just totally made my day!!> > > > Hope you all have a good night!!> > > > Caro> >>

June 28, 2008

Caro,

Yes, the pain you describe could certainly be Sjogren's. I don't know why dentists are not better schooled to recognize the symptoms. I have had my jaw lock up with one of those spasms while eating out and the people with me think that I am having a stroke. I can not even move or speak until it passes. It happens when I see or smell something really delicious and my glands are trying to salivate and can't. Just miserable.

I just don't see the necessity for that biopsy torture they are suggesting. Mercy!

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> > >> > > Hi all,> > > > > > Well, finally got a call today from Dr. de Andrade from University of > > > Alabama at Birmingham. The results are in. Ultrasound of my heart > > > was okay. GREAT!! Chest CT showed that he thought my disease is not > > > as advanced as he thought from reading the CT report from my December > > > CT; however, he did not have my previous CT from December to compare > > > with, so I am bringing it to my next visit to see how fast I am > > > progressing. Next came the blood work. Here we go. He said the main > > > thing I want to talk to you about is the blood work. Okay, I am > > > ready. Something is wrong, because the doctor himself called me > > > instead of the nurse. I have never had that happen!! Anyhoo --> > > basically my blood test for Sjogren's antibodies came back positive. > > > So, I don't have scleroderma but I probably do have Sjogren's. At > > > least that would explain why I have PF. He said he doesn't want to > > > base a diagnosis on just a blood test, so he wants me to have 2 other > > > tests within the next month or so. One is I have to go to an eye > > > doctor and have a test to see how much tears my tear ducts are > > > producing. The other is I have to go to an oral surgeon and get a > > > biopsy on my salivary glands to see how much saliva I am producing. > > > He said a dry mouth is a symptom of Sjogren's. I always have a dry > > > mouth. Have had one as long as I can remember. When I told my mom > > > and dad what the doc said, my daddy told me they had to take me to > > > the doc when I was a baby because my tear ducts were "stopped up" and > > > whatever they did to my eyes, my tears shot across the room and he > > > cried whatever they did to me. The doc told me that Tonya, the nurse, > > > will call me tomorrow or Monday and give me an appointment to go and > > > get the tests done and have a definite diagnosis. He wants to up my > > > Imuran from 100 mg a day to 150 mg a day to be taken in the mornings > > > instead of twice a day and he wants to continue to decrease my > > > prednisone to 5 mg and within the next few months I will totaly be > > > off of it. I told him I had lost 7 pounds and he said for me to stay > > > healthy, keep exercising, and keep losing weight. The downside is > > > that the I don't qualify for clinical trials if I have Sjogren's. > > > The clinical trials are for IPF and if I have Sjogren's then that is > > > the cause for the UIP which the biopsy showed in January. BUT -- he > > > did say the the Imuran at 150 mg a day should slow down the disease > > > progress significantly so for that I AM ALL FOR IT!! Anything to > > > slow down the use for oxygen or the need for a lung transplant I am > > > all for it!! So, overall, I am really pleased with the report. Even > > > if it means I more than likely have another disease, he said the > > > medication can slow down the progress, so I am happy. Am I wrong to > > > be so excited? Any hope these days is a good thing to me. At least > > > I kinda sorta know what has been going on with me all this time.> > > > > > If anyone else has a chance to go to one of the 13 facilities that > > > deal with this particular disease PF, definitely GO!! You can't go > > > wrong. Especially if you can go to Birmingham, I would totally > > > recommend it! They are the best!! Wow!! To have a doctor call me > > > personally, I feel SO SPECIAL!! Just totally made my day!!> > > > > > Hope you all have a good night!!> > > > > > Caro> > >> >>

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