Re: Haven't written in awhile

[Guest guest]

Hi Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his

heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05)

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[Guest guest]

Cyndi,

Good to hear from you again. I was thinking of you the other day and wondering about your dad. I had a angioplasty and stent in June. Like your dad, it came as a complete surprise and I did not think I was having symptoms. But, I was so weak and out of breath all the time. I was amazed how much different I felt afterwards. Make sure he keeps moving after he gets home because blood clots are a real possibility. I walked back and forth through the house a lot.

I am hoping that he will see improvement in his symptoms now. Was the rest of his heart o.k. Did he have a stent?

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA

>> HI Everyone,> I have been going crazy lately, and haven't had time to write but have> really tried to stay on top of all the postings. The slumber party> sounds like fun! I'm sorry for all of you that are experiencing> difficulites with your children. Hang in there...life is so unfair> sometimes. Teri I am so sorry to hear about Jon, I was praying it> would work for him. When my dad was put on oxygen we all felt the> same pain you are feeling now. It feels like the end...but it does> get better...and it is by no means the end. Hang in there...what type> of oxygen did they put him on. My dad is on liquid and does well with> it. It is small and travels well for him so far. He has the Helios> system. Hang in there....> > My dad had a heart cather test on Monday only to be rushed to another> hospital for an emergency angiosplam (sp?) It was very scary. His> artery going into his heart was 99% blocked and it was only time until> he suffered a heart attack. His pulse before the test was always in> the 115-125, since the test it is in the 70-85. It is amazing. As> scary as it was it was a blessing in disguise. God was looking out> for him again.> > Today we went to the UCLA event for IPF? Did anyone else go? We> thought it was wonderful, and appreciate all the Coalition did to make> it happen. (Thanks Leann! :-) They were straight forward and> although they admitted they know nothing about the disease or don't> have a cure...it felt good knowing that they were in fact trying. > They are having another one in April or May. We look forward to that.> They had over 200 people there...and were only thinking about 40> would originally show up. HELLO...WE NEED A CURE! > > Have a wonderful night everyone! I've missed posting with you all!> Cyndi (DAD PF 12/05)>

[Guest guest]

Hi Cyndi, We went to the UCLA seminar too, and I'm sorry we missed you, though I did try searching; it was a big crowd! My name was misspelled: Graydl, spelled the way it sounded over the phone. Yes,the seminar was very informative,well-organized and well-presented. Our daughter-in-law, at lunchtime even asked the 3 doctors, standing near-by if my husband's aneurysm should be repaired - it had already been nixed by the cardiologist and nephrologist- they also agreed that the the risk would be too great to the lungs. Afterwords I asked Therese Geiger about Pulmonary Fibrosis Foundation , if they worked together with them, she replied that PFF did not want to.What a shame, their resources could be pooled. If it hadn't been for PFF I would not have found this

support group, nor would we have known about the seminar, through ! Now we're signed up with the Coalition, too! I get on the computer about 3x a week and then there's lots of E-mail! I often share many of your thoughts with my husband, Bob.He's even getting to know some of you and thus he's not alone in his frustration, sometimes! Through Leanne and some more checking we've switched over to liquid and Bob likes it.Thanks, Leanne! But our Inogen comes in handy too! Love to you all Gretel (husband PF 10/02) aspengrove232003 wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear

about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the

Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05)

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Good Morning Joyce,Yes, he had a stent. They checked the rest of his heart and it seems good. It did not show signs of Pulmonary Hypertension, so as you know that is good. I hope you have a wonderful day!Cyndi (DAD PF 12/05)Joyce wrote: Cyndi, Good to hear from you again. I was thinking of you the other day and wondering about your dad. I had a

angioplasty and stent in June. Like your dad, it came as a complete surprise and I did not think I was having symptoms. But, I was so weak and out of breath all the time. I was amazed how much different I felt afterwards. Make sure he keeps moving after he gets home because blood clots are a real possibility. I walked back and forth through the house a lot. I am hoping that he will see improvement in his symptoms now. Was the rest of his heart o.k. Did he have a stent? Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> HI Everyone,> I have been going crazy lately, and haven't had time to write but have> really tried to stay

on top of all the postings. The slumber party> sounds like fun! I'm sorry for all of you that are experiencing> difficulites with your children. Hang in there...life is so unfair> sometimes. Teri I am so sorry to hear about Jon, I was praying it> would work for him. When my dad was put on oxygen we all felt the> same pain you are feeling now. It feels like the end...but it does> get better...and it is by no means the end. Hang in there...what type> of oxygen did they put him on. My dad is on liquid and does well with> it. It is small and travels well for him so far. He has the Helios> system. Hang in there....> > My dad had a heart cather test on Monday only to be rushed to another> hospital for an emergency angiosplam (sp?) It was very scary. His> artery going into his heart was 99% blocked and it was only time until> he suffered a heart attack. His pulse before the test was

always in> the 115-125, since the test it is in the 70-85. It is amazing. As> scary as it was it was a blessing in disguise. God was looking out> for him again.> > Today we went to the UCLA event for IPF? Did anyone else go? We> thought it was wonderful, and appreciate all the Coalition did to make> it happen. (Thanks Leann! :-) They were straight forward and> although they admitted they know nothing about the disease or don't> have a cure...it felt good knowing that they were in fact trying. > They are having another one in April or May. We look forward to that.> They had over 200 people there...and were only thinking about 40> would originally show up. HELLO...WE NEED A CURE! > > Have a wonderfu! l night everyone! I've missed posting with you all!> Cyndi (DAD PF 12/05)>

[Guest guest]

Hi Gretel,I was reading name tags looking for you as well. There were so many people there. Did you husband end up going as well? The traffic was very bad...but worth it because the seminar was so done so well. Have a great weekend.Cyndi (DAD PF 12/05)Gretel Hines wrote: Hi Cyndi, We went to the UCLA seminar too, and I'm sorry we missed you, though I did

try searching; it was a big crowd! My name was misspelled: Graydl, spelled the way it sounded over the phone. Yes,the seminar was very informative,well-organized and well-presented. Our daughter-in-law, at lunchtime even asked the 3 doctors, standing near-by if my husband's aneurysm should be repaired - it had already been nixed by the cardiologist and nephrologist- they also agreed that the the risk would be too great to the lungs. Afterwords I asked Therese Geiger about Pulmonary Fibrosis Foundation , if they worked together with them, she replied that PFF did not want to.What a shame, their resources could be pooled. If it hadn't been for PFF I would not have found this support group, nor would we have known about the seminar, through ! Now we're signed up with the Coalition, too! I

get on the computer about 3x a week and then there's lots of E-mail! I often share many of your thoughts with my husband, Bob.He's even getting to know some of you and thus he's not alone in his frustration, sometimes! Through Leanne and some more checking we've switched over to liquid and Bob likes it.Thanks, Leanne! But our Inogen comes in handy too! Love to you all Gretel (husband PF 10/02) aspengrove232003

<2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday

only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone!

I've missed posting with you all!Cyndi (DAD PF 12/05) Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

HI Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF 12/05)john closs wrote: Hi Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are

experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him

again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers.

[Guest guest]

Hi Cyndi, 4 of us went, my husband in wheel chair because he can't walk too far, our son and wife, the nurse. Yeah, traffic was horrendous, glad we ourselves did not have to drive. Gretel wrote: Hi Gretel,I was reading name tags looking for you as well. There were so many people there. Did you husband end up going as well? The traffic was very bad...but worth it because the seminar was so done so well. Have a

great weekend.Cyndi (DAD PF 12/05)Gretel Hines <grtl_hns> wrote: Hi Cyndi, We went to the UCLA seminar too, and I'm sorry we missed you, though I did try searching; it was a big crowd! My name was misspelled: Graydl, spelled the way it sounded over the phone. Yes,the seminar was very informative,well-organized and well-presented. Our daughter-in-law, at lunchtime even asked the 3 doctors, standing near-by if my husband's aneurysm should be repaired - it had already been nixed by the cardiologist and nephrologist- they also agreed that the the risk would be too great to the lungs. Afterwords

I asked Therese Geiger about Pulmonary Fibrosis Foundation , if they worked together with them, she replied that PFF did not want to.What a shame, their resources could be pooled. If it hadn't been for PFF I would not have found this support group, nor would we have known about the seminar, through ! Now we're signed up with the Coalition, too! I get on the computer about 3x a week and then there's lots of E-mail! I often share many of your thoughts with my husband, Bob.He's even getting to know some of you and thus he's not alone in his frustration, sometimes! Through Leanne and some more checking we've switched over to liquid and Bob likes it.Thanks, Leanne! But our Inogen comes in handy too! Love to you all Gretel (husband PF 10/02) aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for

him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann!

:-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

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[Guest guest]

Hi Cyndi, Most of the time I feel tired and if left on my own I would probably stay in p.j.'s all day and do nothing. I wonder if that is depression or because I am so darn tired or a little bit of both. However, I thank G-d for my husband and children because they are so very good to me and make sure I don't sit around the house too much. One of our daughters even brings over our dinner twice a week to give , my husband, a rest. Unfortunately, all of the meds that I tried so far do not work, I go for another cat scan thos mon th but I know I am fading rapidly and try not to dwell on it. But, today is a beautiful day, the sun is shining and some of the bulbs are already popping their heads out of the ground so I am thankful. Have a good day and thanks for responding Louise/ipf/96/Ca.

wrote: HI Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF 12/05)john closs

<lobofroto> wrote: Hi Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to

write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since

the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers.

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[Guest guest]

Louise,You have a wonderful family. My dad says we are the reason he keeps living. We don't let him dwell on his illness either. People say God only gives us what we can handle...I believe this...but man does he push us to our limits sometimes! :-) Where is northern california do you live?Cyndi (DAD PF 12/05)john closs wrote: Hi Cyndi, Most of the time I feel tired and if left on my own I would probably stay in p.j.'s all day and do nothing. I wonder if

that is depression or because I am so darn tired or a little bit of both. However, I thank G-d for my husband and children because they are so very good to me and make sure I don't sit around the house too much. One of our daughters even brings over our dinner twice a week to give , my husband, a rest. Unfortunately, all of the meds that I tried so far do not work, I go for another cat scan thos mon th but I know I am fading rapidly and try not to dwell on it. But, today is a beautiful day, the sun is shining and some of the bulbs are already popping their heads out of the ground so I am thankful. Have a good day and thanks for responding Louise/ipf/96/Ca. <2kidsformesbcglobal (DOT) net> wrote: HI

Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars

such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no

means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that

they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call

rates.

[Guest guest]

Hi Cyndi, I live in Folsom, about 40 miles from Sacramento. Louise wrote: Louise,You have a wonderful family. My dad says we are the reason he keeps living. We don't let him dwell on his illness either. People say God only gives us what we can handle...I believe this...but man does he push us to our limits sometimes! :-) Where is northern california do you live?Cyndi (DAD PF 12/05)john closs <lobofroto>

wrote: Hi Cyndi, Most of the time I feel tired and if left on my own I would probably stay in p.j.'s all day and do nothing. I wonder if that is depression or because I am so darn tired or a little bit of both. However, I thank G-d for my husband and children because they are so very good to me and make sure I don't sit around the house too much. One of our daughters even brings over our dinner twice a week to give , my husband, a rest. Unfortunately, all of the meds that I tried so far do not work, I go for another cat scan thos mon th but I know I am fading rapidly and try not to dwell on it. But, today is a beautiful day, the sun is shining and some of the bulbs are already popping their heads out of the ground so I am thankful. Have a

good day and thanks for responding Louise/ipf/96/Ca. <2kidsformesbcglobal (DOT) net> wrote: HI Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi

Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children.

Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did

anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

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HI Louise, We go to Folsom about 4 times a year. I like the outlet malls and the old town is great. Our good friends live in Loomis. It is so beautiful up there. Have a great Sunday! Cyndi (DAD PF 12/05)john closs wrote: Hi Cyndi, I live in Folsom, about 40 miles from Sacramento. Louise <2kidsformesbcglobal (DOT) net> wrote: Louise,You have a wonderful family. My dad says we are the reason he keeps living. We don't let him dwell on his illness either. People say God only gives us what we can handle...I believe this...but man does he push us to our limits sometimes! :-) Where is northern california do you live?Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, Most of the time I feel tired and if left on my own I would probably stay in p.j.'s all day and do nothing. I wonder if that is depression or because I am so darn tired or a little bit of both. However, I thank G-d for my husband and children because they are so very good to me and make sure I don't sit around the house too much. One of our

daughters even brings over our dinner twice a week to give , my husband, a rest. Unfortunately, all of the meds that I tried so far do not work, I go for another cat scan thos mon th but I know I am fading rapidly and try not to dwell on it. But, today is a beautiful day, the sun is shining and some of the bulbs are already popping their heads out of the ground so I am thankful. Have a good day and thanks for responding Louise/ipf/96/Ca. <2kidsformesbcglobal (DOT) net> wrote: HI Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF

since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a

heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a

wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

Hey Cyndi, next time you are in Folsom give me a call and we would love to have you all over for lunch, dinner or whatever. If you ever need a place to camp out we have the extra bedroom as well. Louise/ipf/96/ca wrote: HI Louise, We go to Folsom about 4 times a year. I like the outlet malls and the old town is great. Our good friends live in Loomis. It is so beautiful up there. Have a great Sunday! Cyndi (DAD PF

12/05)john closs <lobofroto> wrote: Hi Cyndi, I live in Folsom, about 40 miles from Sacramento. Louise <2kidsformesbcglobal (DOT) net> wrote: Louise,You have a wonderful family. My dad says we are the reason he keeps living. We don't let him dwell on his illness either. People say God only gives us what we can handle...I believe this...but man does he push us to our limits sometimes! :-) Where is northern california do you live?Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, Most of the time I feel tired and if left on my own I would probably stay in p.j.'s all day and do nothing. I wonder if that is depression or because I am so darn tired or a little bit of both. However, I thank G-d for my husband and children because they are so very good to me and make sure I don't sit around the house too much. One of our daughters even brings over our dinner twice a week to give , my husband, a rest. Unfortunately, all of the meds that I tried so far do not work, I go for another cat scan thos mon th but I know I am fading rapidly and try not to dwell on it. But, today is a beautiful day, the sun is shining and some of the bulbs are already popping their heads out of the ground so I am thankful. Have a good day and thanks for responding Louise/ipf/96/Ca.

<2kidsformesbcglobal (DOT) net> wrote: HI Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, I am so glad you were able to go to the seminar put on by the

Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying

itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit

happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Everyone is raving about the all-new Yahoo! Mail beta.

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[Guest guest]

Louise you are so sweet! I would love to meet you! Cyndi (DAD PF 12/05)john closs wrote: Hey Cyndi, next time you are in Folsom give me a call and we would love to have you all over for lunch, dinner or whatever. If you ever need a place to camp out we have the extra bedroom as well. Louise/ipf/96/ca <2kidsformesbcglobal (DOT) net> wrote: HI Louise, We go to Folsom about 4 times a year. I like the outlet malls and the old town is great. Our good friends live in Loomis. It is so beautiful up there. Have a great Sunday! Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, I live in Folsom, about 40 miles from Sacramento. Louise <2kidsformesbcglobal (DOT) net> wrote: Louise,You have a wonderful family. My dad says we are the reason he keeps living. We don't let him dwell on his illness either. People say God only gives us what we can handle...I believe this...but

man does he push us to our limits sometimes! :-) Where is northern california do you live?Cyndi (DAD PF 12/05)john closs <lobofroto> wrote: Hi Cyndi, Most of the time I feel tired and if left on my own I would probably stay in p.j.'s all day and do nothing. I wonder if that is depression or because I am so darn tired or a little bit of both. However, I thank G-d for my husband and children because they are so very good to me and make sure I don't sit around the house too much. One of our daughters even brings over our dinner twice a week to give , my husband, a rest. Unfortunately, all of the meds that I tried so far do not work, I go for another cat scan thos mon th but I know I am fading rapidly and try not to dwell on it. But, today is a beautiful day, the sun is shining and some of the bulbs are already popping their heads out of the ground so I am thankful. Have a good day and thanks for responding Louise/ipf/96/Ca. <2kidsformesbcglobal (DOT) net> wrote: HI Louise,I heard the one at UCSF was great. I can't believe that 300 people were at that one. It is great to see so many people, but sad to realize that so many people's lives are effected by this disease. You have had IPF since 1996? My grandma was diagnosed in 1996 with it too, and she fought hard until 2004. Then a year and a half later we found out my dad had it. How are you feeling? Have a wonderful weekend.Cyndi (DAD PF

12/05)john closs <lobofroto> wrote: Hi Cyndi, I am so glad you were able to go to the seminar put on by the Coalition For Pulmonary Fibrosis @UCLA.. I was fortunate to be able to attend the one @UCSF in November, there were over 300 people there. It would be wonderful if seminars such as these were provided all over the country. I learned so much and everyone was wonderful in assisting me with oxygen and a wheelchair. Louise/ipf/96/California aspengrove232003 <2kidsformesbcglobal (DOT) net> wrote: HI Everyone,I have been going crazy

lately, and haven't had time to write but havereally tried to stay on top of all the postings. The slumber partysounds like fun! I'm sorry for all of you that are experiencingdifficulites with your children. Hang in there...life is so unfairsometimes. Teri I am so sorry to hear about Jon, I was praying itwould work for him. When my dad was put on oxygen we all felt thesame pain you are feeling now. It feels like the end...but it doesget better...and it is by no means the end. Hang in there...what typeof oxygen did they put him on. My dad is on liquid and does well withit. It is small and travels well for him so far. He has the Heliossystem. Hang in there....My dad had a heart cather test on Monday only to be rushed to anotherhospital for an emergency angiosplam (sp?) It was very scary. Hisartery going into his heart was 99% blocked and it was only time untilhe suffered a heart attack. His pulse before the test was

always inthe 115-125, since the test it is in the 70-85. It is amazing. Asscary as it was it was a blessing in disguise. God was looking outfor him again.Today we went to the UCLA event for IPF? Did anyone else go? Wethought it was wonderful, and appreciate all the Coalition did to makeit happen. (Thanks Leann! :-) They were straight forward andalthough they admitted they know nothing about the disease or don'thave a cure...it felt good knowing that they were in fact trying. They are having another one in April or May. We look forward to that.They had over 200 people there...and were only thinking about 40would originally show up. HELLO...WE NEED A CURE! Have a wonderful night everyone! I've missed posting with you all!Cyndi (DAD PF 12/05) Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Everyone is raving about the all-new Yahoo! Mail beta. Want to start your own business? Learn how

on Yahoo! Small Business.