New to the Group

[Guest guest]

Welcome MaggieSorry you need us Glad you found usYou sound a lot like me ('no one puts Baby in a corner') I tell my kids they will have to take me out kicking and screaming!You also sound well informed, not freaked out about the 2-5( again I can hear myself saying ok so what do we do about it) I can't help you with Texas but I'm sure Bruce and others can fill you in on that. I went to NJH this year (my 7th from dx) and I LOVED THEM. They found the autoimmune connection everyone thought about but never had proof of. If thats where you go Drs. Soloman, Fischer and others will help you see what you can see.Again welcome to the wonderful people in the Air family, Beth, Bruce, Peggy, the Joyce's, Stefani, , , and Jack and Merf , from oz, from Scotland, and all the others who will make you feel like a sister.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!".">> Hi all,> I have been lurking now for a few weeks and reading the posts which are very informative, so it's time to get involved.> > My name is Maggie , I am 64 y/o and live close to San , TX.> > I have been diagnosed with ILD, IPF in early 2007. I actually had been doing OK (I thought) until I got sick this Oct & took a sudden turn for the worse. I am now on oxygen 24/7, NAC, prednisone & using a C-PAP with oxygen & got the dreaded prognosis of 2-5 yrs. > > My pulmonologist referred me to UTHSC in San for a biopsy 10/08, but because of no insurance & I was stable with no significant problems, we decided to hold off for awhile. This past summer I started experiencing shortness of breath (SOB) especially with exertion & I contributed it to the horrendous heat we had. In October, I was exposed & caught a virus & I was really sick. My SATS were in the 60s & 70s I was treated with antibiotics & prednisone upped to 20mg & oxygen. My x-rays & CTs showed marked progression of this disease and I was referred back to the San docs to again schedule the biopsy.> > Well I never got to see the surgeon, Dr. , he sent in Dr. L. Angel who is one of the dept heads and on the lung transplant team to talk to me. They decided not to do the biopsy since the scans gave a great picture of the IPF, was told I would eventually need a lung transplant-maybe!!! but my age & wt is against it; oxygen 24/7; wt loss; possible cellsept, pulmo rehab, and the dreaded 2-5 yr expiration date, and I had to quit my job because of the exposure to illnesses that would compromise my lungs further. He knows my pulmodoc well & sent his recommendations.> > My response was you can't get rid of me that fast, I have too much to do in life. My first thought was: "I moved to Tx 3 yrs ago and already got a death sentence". I have already lost 11 lbs toward my goal, I got over the bug and feel much better. I applied for SSD & was approved in 6 days, but that won't start for a few months. I really didn't know about NSIP/UIP until I read about this from the group & I am researching everything. My hubby Brad is wonderful & is a great support to me.> > I have a few questions for the group. Has anyone been to the San Health Science Center & what is your opinion? I'm not unhappy with them, but I don't hear to much about them. Does Houston have a good program/transplant team? Is anyone in any of the clinical trials that I read about? I have lots of family in Colorado & have consider going to NJH for further F/U and other opinions.> > That's it in a nutshell & thank you for all the info that is provided.> I intend to be an active member & contribute to the group also.> > Maggie>

[Guest guest]

Hi Dyane & everyone,

Thank you all for the hearty welcome - I appreciate it. No - I am not wigged out with the 2-5 rating. LOL. When I was first "told" I had mild fibrosis in my lower lung bases almost 3 yrs ago - I sort of researched it and was surprised at the prognosis. I put it in the back of my mind, but it was always on the fringe & I was ignoring it- thinking I feel too good for this to happen to me. The only symptoms was a dry hacky cough & very tired by the end of a work day - but who knew! As I became more short of breath this summer, I knew what was going on & was looking forward to having the biopsy for a "definite diagnosis".

When the SA doc sat me down - I took my husband's hand, looked at him said "here it comes - I know what he is going to say"...and he did. That is when it upset me, but I am got over it fast as I had to face the facts - I've got to do this for myself - I don't have time to dwell on this. Since almost 3 yrs have gone by since the 1st diagnosis, I already beat the 2-5 rule - now it is 3-5 yrs or Infinity and Beyond!! quote - Buzz Lightyear. LOL.

What I hated was quitting my job - I have been a Physician Assistant for 20 yrs and an RN for 25 yrs before that. I was working part time as needed in Family practice & Urgent Care. Before that - I loved my full time job in Internal Medicine. Of course I was exposed to every germ, virus, bacteria of every human that walked into that clinic and got so sick in October - I wished that I could die. I knew better & kicking my own butt for putting myself in that compromised position & know I should have quit months maybe years ago. Sigh!

I am feeling pretty good & have an app't next month for more PFTs & a gazillion questions to ask. Sometimes I think what happens is that doctors think that because I am a medical provider I should know everything that is going on with me. Wrong! I tell them I am a patient with an incurable disease & need to be treated accordingly. Don't mess with me - I am not a doctor - I need answers & help to lead the most productive life I can NOW - who knows what tomorrows destiny will be.

Whew - that was quite a rant - but it felt good to open up to folks who know what is happening. Thanks for listening folks. Hugs to all you courageous, wonderful people & have a good evening. Maggie

PS - I don't know how to put in those signature thingees either.

Subject: Re: New to the groupTo: Breathe-Support Date: Saturday, December 12, 2009, 2:12 PM

Welcome MaggieSorry you need us Glad you found usYou sound a lot like me ('no one puts Baby in a corner') I tell my kids they will have to take me out kicking and screaming!You also sound well informed, not freaked out about the 2-5( again I can hear myself saying ok so what do we do about it) I can't help you with Texas but I'm sure Bruce and others can fill you in on that. I went to NJH this year (my 7th from dx) and I LOVED THEM. They found the autoimmune connection everyone thought about but never had proof of. If thats where you go Drs. Soloman, Fischer and others will help you see what you can see.Again welcome to the wonderful people in the Air family, Beth, Bruce, Peggy, the Joyce's, Stefani, , , and Jack and Merf , from oz, from Scotland, and all the others who will make you feel like a sister.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!"."

>> Hi all,> I have been lurking now for a few weeks and reading the posts which are very informative, so it's time to get involved.> > My name is Maggie , I am 64 y/o and live close to San , TX.> > I have been diagnosed with ILD, IPF in early 2007. I actually had been doing OK (I thought) until I got sick this Oct & took a sudden turn for the worse. I am now on oxygen 24/7, NAC, prednisone & using a C-PAP with oxygen & got the dreaded prognosis of 2-5 yrs. > > My pulmonologist referred me to UTHSC in San for a biopsy 10/08, but because of no insurance & I was stable with no significant problems, we decided to hold off for awhile. This past summer I started experiencing shortness of breath (SOB) especially with exertion & I contributed it to the horrendous heat

we had. In October, I was exposed & caught a virus & I was really sick. My SATS were in the 60s & 70s I was treated with antibiotics & prednisone upped to 20mg & oxygen. My x-rays & CTs showed marked progression of this disease and I was referred back to the San docs to again schedule the biopsy.> > Well I never got to see the surgeon, Dr. , he sent in Dr. L. Angel who is one of the dept heads and on the lung transplant team to talk to me. They decided not to do the biopsy since the scans gave a great picture of the IPF, was told I would eventually need a lung transplant-maybe!!! but my age & wt is against it; oxygen 24/7; wt loss; possible cellsept, pulmo rehab, and the dreaded 2-5 yr expiration date, and I had to quit my job because of the exposure to illnesses that would compromise my lungs further. He knows my pulmodoc well & sent his recommendations.> > My response was

you can't get rid of me that fast, I have too much to do in life. My first thought was: "I moved to Tx 3 yrs ago and already got a death sentence". I have already lost 11 lbs toward my goal, I got over the bug and feel much better. I applied for SSD & was approved in 6 days, but that won't start for a few months. I really didn't know about NSIP/UIP until I read about this from the group & I am researching everything. My hubby Brad is wonderful & is a great support to me.> > I have a few questions for the group. Has anyone been to the San Health Science Center & what is your opinion? I'm not unhappy with them, but I don't hear to much about them. Does Houston have a good program/transplant team? Is anyone in any of the clinical trials that I read about? I have lots of family in Colorado & have consider going to NJH for further F/U and other opinions.> > That's it in a nutshell & thank you for

all the info that is provided.> I intend to be an active member & contribute to the group also.> > Maggie>

[Guest guest]

Hey Maggie. Rant all you want. You are just saying what you feel and there is

nothing wrong with that. This is the best group of people I have ever been

blessed to get to know. My prayers are with you and stay strong.

Merf 62 IPF 05

> >

> > Hi all,

> > I have been lurking now for a few weeks and reading the posts which are very

informative, so it's time to get involved.

> >

> > My name is Maggie , I am 64 y/o and live close to San , TX.

> >

> > I have been diagnosed with ILD, IPF in early 2007. I actually had been doing

OK (I thought) until I got sick this Oct & took a sudden turn for the worse. I

am now on oxygen 24/7, NAC, prednisone & using a C-PAP with oxygen & got the

dreaded prognosis of 2-5 yrs.

> >

> > My pulmonologist referred me to UTHSC in San for a biopsy 10/08, but

because of no insurance & I was stable with no significant problems, we decided

to hold off for awhile. This past summer I started experiencing shortness of

breath (SOB) especially with exertion & I contributed it to the horrendous heat

we had. In October, I was exposed & caught a virus & I was really sick. My SATS

were in the 60s & 70s I was treated with antibiotics & prednisone upped to 20mg

& oxygen. My x-rays & CTs showed marked progression of this disease and I was

referred back to the San docs to again schedule the biopsy.

> >

> > Well I never got to see the surgeon, Dr. , he sent in Dr. L.

Angel who is one of the dept heads and on the lung transplant team to talk to

me. They decided not to do the biopsy since the scans gave a great picture of

the IPF, was told I would eventually need a lung transplant-maybe!!! but my age

& wt is against it; oxygen 24/7; wt loss; possible cellsept, pulmo rehab, and

the dreaded 2-5 yr expiration date, and I had to quit my job because of the

exposure to illnesses that would compromise my lungs further. He knows my

pulmodoc well & sent his recommendations.

> >

> > My response was you can't get rid of me that fast, I have too much to do in

life. My first thought was: " I moved to Tx 3 yrs ago and already got a death

sentence " . I have already lost 11 lbs toward my goal, I got over the bug and

feel much better. I applied for SSD & was approved in 6 days, but that won't

start for a few months. I really didn't know about NSIP/UIP until I read about

this from the group & I am researching everything. My hubby Brad is wonderful &

is a great support to me.

> >

> > I have a few questions for the group. Has anyone been to the San

Health Science Center & what is your opinion? I'm not unhappy with them, but I

don't hear to much about them. Does Houston have a good program/transplant team?

Is anyone in any of the clinical trials that I read about? I have lots of family

in Colorado & have consider going to NJH for further F/U and other opinions.

> >

> > That's it in a nutshell & thank you for all the info that is provided.

> > I intend to be an active member & contribute to the group also.

> >

> > Maggie

> >

>

[Guest guest]

Hi Erna,

I started to chuckle when I read your message about the Oxygen cord and the vacuum cord. I envisioned such a site. It takes me so much longer to vacuum now since I have to do a dance with those cords. I think I should just try to vacuum quickly with out the O2 and then rest with it.

AB

To: Breathe-Support Sent: Sun, December 6, 2009 4:18:09 PMSubject: Re: Re: new to the group

Hi, All Sometimes complain that my dog has a bigger longer than mine…… I would love to make a picture someday my oxygen hose and vacuum electrical hose knotted up together and the dog having a ball playing around my tangle of cords. So thank you for the suggestions about the male and female cord since sometimes I a web of cords. here is a pdf file with the female swivel I saw them at Amazon.com also. I also was thinking for anyone who is good at little mechanical projects… Do you know the retractable electrical vacuum cleaner cords? Would it not be wonderful if they had something like this with oxygen cords… Or something like this with oxygen tubing Talk to you later, Erna ---it is a beutifual day and needs to be enjoyed.....

Erna

1992 bird fanciers syndrome CAD & MI 2004

ILD 2008 NSIP 2009 Washington State

From: Chatty_katt3@ yahoo.com <chatty_katt3@ yahoo.com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Saturday, December 5, 2009, 10:36 AM

To use the oxygen in the shower, take the oxygen off and toss the cannula tubing over the shower door or shower curtin pole. Put the oxygen back on and step into the shower.

The best thing to lessen the oxygen knotting up is ask for a SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivel connection that connects the tubing to the concentrator. I believe it is called either a male connector, or a female connector. I am sure someone on here knows the proper name. It is about 3 inches long and connects a swivel end to the tubbing and has a tubbing type connector on the other end to connect to the concentrator. Some oxygen suppliers don't seem to know about this. I had a site that showed a picture of it, but I can't find it. Someone on here probably can find it.

Marcia

[Guest guest]

Adrienne

Not saying vacuuming is one of them but there are certain activities

even within the house where the portable is easier to handle than the

hose. I don't seem to have as many issues with the hose as many of you

but I do know others who use their portables when doing certain

household things. Another situation is using a powerchair in the house.

In that situation I've known others who used their portables hooked to

the chair.

> >

> >

> >>From: Chatty_katt3@ yahoo.com <chatty_katt3@ yahoo.com>

> >>Subject: Re: new to the group

> >>To: Breathe-Support@ yahoogroups. com

> >>Date: Saturday, December 5, 2009, 10:36 AM

> >>

> >>

> >>Â

> >>To use the oxygen in the shower, take the oxygen off and toss the

cannula tubing over the shower door or shower curtin pole. Put the

oxygen back on and step into the shower.Â

> >>

> >>Â The best thing to lessen the oxygen knotting up is ask for

a SWIVEL connector that connects the tubing to the cannula.Â

That helps somewhat, but better yet if you can also get a swivel

connection that connects the tubing to the concentrator. I believe

it is called either a male connector, or a female connector. I am

sure someone on here knows the proper name. It is about 3 inches long

and connects a swivel end to the tubbing and has a tubbing type

connector on the other end to connect to the concentrator. Some

oxygen suppliers don't seem to know about this. I had  a

site that showed a picture of it, but I can't find it. Someone on

here probably can find it.   Marcia

> >>

> >

>

[Guest guest]

did you ever think about vacuuming while using the portable o2--

less tubing to get tangled with the vacuum cord

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: new to the groupTo: Breathe-Support Date: Sunday, December 13, 2009, 2:13 PM

Hi Erna,

I started to chuckle when I read your message about the Oxygen cord and the vacuum cord. I envisioned such a site. It takes me so much longer to vacuum now since I have to do a dance with those cords. I think I should just try to vacuum quickly with out the O2 and then rest with it.

AB

From: Erna <vrolijk50 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, December 6, 2009 4:18:09 PMSubject: Re: Re: new to the group

Hi, All Sometimes complain that my dog has a bigger longer than mine…… I would love to make a picture someday my oxygen hose and vacuum electrical hose knotted up together and the dog having a ball playing around my tangle of cords. So thank you for the suggestions about the male and female cord since sometimes I a web of cords. here is a pdf file with the female swivel I saw them at Amazon.com also. I also was thinking for anyone who is good at little mechanical projects… Do you know the retractable electrical vacuum cleaner cords? Would it not be wonderful if they had something like this with oxygen cords… Or something like this with oxygen tubing Talk to you later, Erna ---it is a beutifual day and needs to be enjoyed.....

Erna

1992 bird fanciers syndrome CAD & MI 2004

ILD 2008 NSIP 2009 Washington State

From: Chatty_katt3@ yahoo.com <chatty_katt3@ yahoo.com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Saturday, December 5, 2009, 10:36 AM

To use the oxygen in the shower, take the oxygen off and toss the cannula tubing over the shower door or shower curtin pole. Put the oxygen back on and step into the shower.

The best thing to lessen the oxygen knotting up is ask for a SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivel connection that connects the tubing to the concentrator. I believe it is called either a male connector, or a female connector. I am sure someone on here knows the proper name. It is about 3 inches long and connects a swivel end to the tubbing and has a tubbing type connector on the other end to connect to the concentrator. Some oxygen suppliers don't seem to know about this. I had a site that showed a picture of it, but I can't find it. Someone on here probably can find it.

Marcia

[Guest guest]

Bruce,

Thanks for that suggestion. You are right that it would make more sense for me to use my portable when I do house work. To be honest I'd much rather have someone else do the housework, but we know how that goes LOL.

Adrienne

To: Breathe-Support Sent: Sun, December 13, 2009 3:00:30 PMSubject: Re: new to the group

AdrienneNot saying vacuuming is one of them but there are certain activitieseven within the house where the portable is easier to handle than thehose. I don't seem to have as many issues with the hose as many of youbut I do know others who use their portables when doing certainhousehold things. Another situation is using a powerchair in the house.In that situation I've known others who used their portables hooked tothe chair.> >> >> >>From: Chatty_katt3@ yahoo.com <chatty_katt3@ yahoo.com>> >>Subject: Re: new to the group> >>To: Breathe-Support@ yahoogroups. com> >>Date: Saturday, December 5, 2009, 10:36 AM> >>> >>> >>Â> >>To use the oxygen in the shower, take the oxygen off and toss thecannula tubing over the shower door or shower curtin pole. Put theoxygen back on and step into the shower.Â>

>>> >> The best thing to lessen the oxygen knotting up is ask fora SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivelconnection that connects the tubing to the concentrator. I believeit is called either a male connector, or a female connector. I amsure someone on here knows the proper name. It is about 3 inches longand connects a swivel end to the tubbing and has a tubbing typeconnector on the other end to connect to the concentrator. Someoxygen suppliers don't seem to know about this. I had  asite that showed a picture of it, but I can't find it. Someone onhere probably can find it.   Marcia> >>> >>

[Guest guest]

I have been 10 years with UC, and was just given this book 2 weeks ago, I read

it and I am diving in......I usually go 2-3 yrs without a flare up and then they

last 2 months or so and all is well. BUT this time for what ever reason, I

flared and I cannot get it to go back I have been 7 months now bleeding, which

also makes this odd, because I am having normal bowel movements 1-2 time a day

only bleeding a few other times a day. Very annoying, I am a mother of 4 young

children who works and is busy like every other mom out there. I have lost some

weight not alot maybe 10lbs in total, and have continued to do my workout

routine. I have never been a betting kind a girl...but I am betting it all on

this SCD Diet!!! Fingers crossed!