Re: GERD HElp please

[Guest guest]

,I just got the results from National Jewish and even though I have taken omeprazole for 10 years and tagamet before that I still apparently have "esophageal dysmotility" and "laryngeal penetration" (sounds like its related to sex hey?) So basically I get to put 2 bricks under the front of my bed to raise the head or if I'm lucky my kids will buy me the mattress genie for Christmas. They want me to have a transplant too, but I'm too heavy right now to even be evaluated. My hope right now is to stay stable. I'm working on losing weight but as we all know that is really hard. They want to up my Imuran and hopefully get me off the Pred. Are you on oxygen? Do you know what your PFT scores are. I think I would rather live stable as I am (and I need 8-10 liters on exertion that contemplate transplant right now. But that is such a personal decision that I would never say yay or nay to anyone else. Just my humble opinion.Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

laura

contact the National Transplant Assistance Fund (NTAF)

they will provide you with information about fundraising

www.transplantfund.org

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: GERD HElp pleaseTo: Breathe-Support Date: Thursday, December 3, 2009, 4:44 PM

Welcome to the NEW Members!

Hi friends this is laura.

I wen to see the doctor in Houston and he thinks I need a transplant.

Now, because I dont have the money for the deposit to start the evaluation I will have to start doing a fundraising. I dont know how, but I will find out.

The doctor mentioned to me that the acid reflux is damaging my lungs too. I iddnt know that, i read about it here in your messages but I take omeprazole and i dont feel heartburn. The doctor told me that even if i dont feel heartburn the acid reflux is damaging my lungs. I was shocked! He told me he could see in my Ct Scans the damage in my esophagus.

please any of you that have GERD or acid reflux disease, let me know what treatment are you on, I need to find a good gastro doctor to take care of this.

Also, if any of you has had fibrosis for a long time, tell me what meds are you on, please, i need to speak with my doctors because I cant beleive there is nothing else to do other than a transplant.

HELP!!!!!!

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 2, 2009, 1:34 PM

Thanks for that bruce....... .....I don't know what stage I'm in been several years since dx..I only know I need o2 when I'm mobile...... ..4 usually up 6 6 on inclines..usually 0 to 2 when rested

Since I'm partially paralyzed I get tangled up in the hoses......big mess

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 2, 2009 1:21:33 PMSubject: Re: new to the group

Stages still wouldn't tell you because the diseases are sounpredictable. Plus we'd need different for all the different forms. Ithink just live the best you can and take nothing for granted at all.Because you could spend forever in whatever you'd call stage 2 or youcould go straight from stage 1 to the end. Biggest thing is avoidingcomplications so that you do make sure you go the complete path.Now, personally, I do sort of have my own mental concept and have usedit in planning my future.First, I think of how I've been since diagnosis. I was immediately onoxygen so no pre-oxygen period for me. Low to moderate oxygen and ableto be pretty functional. 0-5 lpm depending on what I'm doing.Next, I think of the period in which my oxygen needs are considerablyhigher and I'm requiring 6-10 lpm when active. At that point I picturemyself far less able to do certain things but still

able to do many withoxygen.Then, I think of the period of 10 lpm and more when I've lost mostmobility. I try to surround myself at home with my favorite things. Ibring in hospice at the right time as the oxygen requirements increaseand their effectiveness decrease.But I have no idea how long any stage or if I'll see them all. I've justthought ahead of how I want to be at the various levels of the diseaseI've seen many reach.There are studies underway trying to find the keys to predictingprogression but thats still research. Meanwhile we all need to live. Youwere an excellent example with your trip. I personally missed a lot ofstages by not being diagnosed when I should have been. My FVC was 44%and my DLCO was 38% the first time either was ever measured and I wasput on oxygen that same day.>>> Subject: Re: new to the group> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, December 2, 2009, 8:26 AM>>>

Â>>>>>>> Patti,> Welcome to Breathe Support!! It's lousy that you have reason tolook for a group like this but I hope that you find it as helpfulas I have over the last 3 and a half years.> It sounds like you are doing all the right stuff. I'm so happy to hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm inEXACTLY the same condition I was at that time. I've been stable for 3and a half years. We have a member who is I think ten or twelve yearsout from diagnosis and is stable. So the moral of the story is, there isno expiration date tatooed on your fanny!> Please

continue to read and ask whatever questions you have. We'rehere to help!>> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â> Â>>>>>>> From: emma0850 napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 1, 2009 10:35:47 PM> Subject: new to the group>> Â>> Hello everyone.... .I just found this group today and I couldn't behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in my lung bases. Iwent through the entire ordeal of test after test and was told it was somild that they thought it may have been there for years. I continued todo all the follow up tests each year and until now it had remainedunchanged. This past month the tests showed

it has now progressed to theentire lung area. My PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation on the internet and most of the info I read just scares me.They make it sound like a death sentence. Again I am so happy to findthis group!!>

[Guest guest]

Dyane...you crack me up! "laryngeal penetration" (sounds like its related to sex hey?)" C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Thu, December 3, 2009 2:08:46 PMSubject: Re: GERD HElp please

,I just got the results from National Jewish and even though I have taken omeprazole for 10 years and tagamet before that I still apparently have "esophageal dysmotility" and So basically I get to put 2 bricks under the front of my bed to raise the head or if I'm lucky my kids will buy me the mattress genie for Christmas. They want me to have a transplant too, but I'm too heavy right now to even be evaluated. My hope right now is to stay stable. I'm working on losing weight but as we all know that is really hard. They want to up my Imuran and hopefully get me off the Pred. Are you on oxygen? Do you know what your PFT scores are. I think I would rather live stable as I am (and I need 8-10 liters on exertion that contemplate transplant right now. But that is such a personal decision that I would never say yay or nay to anyone else. Just my humble opinion.Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to

the group> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was

at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of

you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

,

I also have GERD. Before diciding on a treatment, you may want to see your gastrointerologist first. I say this from personal experience after trying to treat it through my local family doctor. The indascope showed ulcers, hiatal hernia, and pallops (Yes they can happen in the esophagus.). I take KAPIDEX in the morning and RAGLAN at night. Also I put 3 bricks under each leg at the head of my bed. I have to keep crwling back up through the night. My GIRD is better now. I also have been told to avoid coffee, soft drinks, garlic and onion, peppermint, pepper and other hot spices, and I was told not to drink liquids just before or during meals. Also I eat less, though I had already put myself on a strict diet when first diagnosed with IPF so as to loose enough weight to make a difference in my O2 needs.. I hope with time that GERD won't be part of my lung problem, as I also suspect it may be now.

Because so much more was found than GERD in my case, I strongly recommend a visit to a gastrointerologist. The scope isn't that bad at all. After that, I decided to schedule a colonoscopy. I hope you are able to get help for you GERD, and maybe that will also help with getting your PF satable.

Who believes that hard times help us appreciate the good times even more.

[Guest guest]

,Well it does! and I swear isn't motility one of the things they check for sperm when you are having fertility problems? Sure sounds like my esophageal and larynx are mixing their naughty bitsDyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> > >> > >> > > From: Beth mbmurtha@> > > Subject: Re: new to the group> > > To: Breathe-Support@ yahoogroups. com> > > Date: Wednesday, December 2, 2009, 8:26 AM> > >> > >> > > Â> > >> > >> > >> > >> > >> > >> > > Patti,> > > Welcome to Breathe Support!! It's lousy that you have reason to> > look for a group like this but I hope that you find it as helpful> > as I have over the last 3 and a half years.> > > It sounds like you are doing all the right stuff. I'm so happy to hear> > you are going to the University of Chicago. They have a great reputation> > and I'm certain you will learn a ton regarding your own situation and> > how to approach the new realities.> > > Take things one step at a time and please don't panic about what you> > read on the internet. I was diagnosed 3 and a half years ago and I'm in> > EXACTLY the same condition I was at that time. I've been stable for 3> > and a half years. We have a member who is I think ten or twelve years> > out from diagnosis and is stable. So the moral of the story is, there is> > no expiration date tatooed on your fanny!> > > Please continue to read and ask whatever questions you have. We're> > here to help!> > >> > > Â> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > Â> > > Â> > >> > >> > >> > >> > >> > >> > > From: emma0850 napa73 (AT) comcast (DOT) net>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Tue, December 1, 2009 10:35:47 PM> > > Subject: new to the group> > >> > > Â> > >> > > Hello everyone.... .I just found this group today and I couldn't be> > happier to find all of you! My name is Patti.....I am 59 yrs old and was> > told three years ago that I had pulmonary fibrosis in my lung bases. I> > went through the entire ordeal of test after test and was told it was so> > mild that they thought it may have been there for years. I continued to> > do all the follow up tests each year and until now it had remained> > unchanged. This past month the tests showed it has now progressed to the> > entire lung area. My PFT had dropped from 79 to 60 in two years. I still> > feel just fine but the doctor says it is time for Prednisone. I have an> > appt in Chicago this month with a new doctor. I have read volumes of> > information on the internet and most of the info I read just scares me.> > They make it sound like a death sentence. Again I am so happy to find> > this group!!> > >> >>