here is a litle history on me

[Guest guest]

My parents both smoked i smoked on and off for 28 yrs. Then had a

bout of chest pain and shortness of breath so internal med dr sent me

to cardio for stress test. I was way overweight so they used a drug

to induce stress on my heart everything was fine with my heart but

could not really get my breath back after test. I kept telling dr

this finally after a month shesent me to a pulmonary dr. He checked

me over checked my sats and sent me straight to the hospital with low

sats.

He proceeded to do a lot of tests, a pft and ct scan with contrast.

and sent me home 3 days later i was back to see him with even lower

sats even at rest so back to the hospital and had a cardiac cath done

and breathing treatments and open lung biopsy. The biopsy showed

normal lung tissue. He then sent me home on continous O2 at 2ltrs. I

did a stint of pulmonary rehab with O2 and then just adjusted to O2

and seen pulmonary dr every 6 months. this spring i started maintence

pulmonary rehab and worked my way to not having to use O2 all day

just at night and was able to exercise for full hour with no O2.

Since before going on O2 I have battled depression and anxiety and

ptsd. I was also told I was in moderate kidney failure.

I August I started noticing my breathing getting worse and

Pulmonary dr said my pft was a little worse. My cholesterol med made

my legs hurt and get weak so found out i was alergic to it and spent

4 weeks not exercising. I went to rehab 1 time exercised with O2 but

could not do as much. Then noticed just talking on the phone made me

short of breath and went to internal med dr and with O2 my sats were

fine but was very short of breath. he then walked me in the hallway

and my sats dropped to 82 with O2. So he told me to go toPulmonary dr

and since I also was getting chest pain to go to Cardio. I got an

appointment with pulmonary in a week but called cardio and nurse said

go to er. Went to er and sats kept falling while I layed there so

they kept me in the hospital.

Oulmonary dr seen me and wanted pft and stress echocardigram done.

( I do show Pulmonary hypertension) Cardio said heart fine, pft

better than last one. Sats stayed fairly good in hospital, in fact

resp. therapist took me on small walk with out O2 and sat stayed

above 90 but was extremely short of breath. Pulmonary dr thinks I am

having infiltrates from my reflux going into lungs causing me

problems so am seeing GI dr too lol. When I go up to 3 ltrs it helps

some to bringbreathingback to normal in shorter time. There are times

I feel like I would like a fullmask O2 flowing full blast intead of

nasal cannula especial when on conserver. I do not have a oximeter at

home pulmonary dr des not think i need one.

Well that is pretty much my histroy from here in wisconsin lol.

[Guest guest]

Cathy ... if your bio shows normal lung tissue how is dr dx your PF?

If you can afford the $65 I would surely recommend you get an oximeter anyway...

you will feel better being able to monitor yourself closely. Especially since your sats seem to drop frequently.

You've been through a lot but you are here now, the best place you can be for support, information and sound suggestions.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

here is a litle history on me

My parents both smoked i smoked on and off for 28 yrs. Then had a bout of chest pain and shortness of breath so internal med dr sent me to cardio for stress test. I was way overweight so they used a drug to induce stress on my heart everything was fine with my heart but could not really get my breath back after test. I kept telling dr this finally after a month shesent me to a pulmonary dr. He checked me over checked my sats and sent me straight to the hospital with low sats.He proceeded to do a lot of tests, a pft and ct scan with contrast. and sent me home 3 days later i was back to see him with even lower sats even at rest so back to the hospital and had a cardiac cath done and breathing treatments and open lung biopsy. The biopsy showed normal lung tissue. He then sent me home on continous O2 at 2ltrs. I did a stint of pulmonary rehab with O2 and then just adjusted to O2 and seen pulmonary dr every 6 months. this spring i started maintence pulmonary rehab and worked my way to not having to use O2 all day just at night and was able to exercise for full hour with no O2. Since before going on O2 I have battled depression and anxiety and ptsd. I was also told I was in moderate kidney failure.I August I started noticing my breathing getting worse and Pulmonary dr said my pft was a little worse. My cholesterol med made my legs hurt and get weak so found out i was alergic to it and spent 4 weeks not exercising. I went to rehab 1 time exercised with O2 but could not do as much. Then noticed just talking on the phone made me short of breath and went to internal med dr and with O2 my sats were fine but was very short of breath. he then walked me in the hallway and my sats dropped to 82 with O2. So he told me to go toPulmonary dr and since I also was getting chest pain to go to Cardio. I got an appointment with pulmonary in a week but called cardio and nurse said go to er. Went to er and sats kept falling while I layed there so they kept me in the hospital.Oulmonary dr seen me and wanted pft and stress echocardigram done. ( I do show Pulmonary hypertension) Cardio said heart fine, pft better than last one. Sats stayed fairly good in hospital, in fact resp. therapist took me on small walk with out O2 and sat stayed above 90 but was extremely short of breath. Pulmonary dr thinks I am having infiltrates from my reflux going into lungs causing me problems so am seeing GI dr too lol. When I go up to 3 ltrs it helps some to bringbreathingback to normal in shorter time. There are times I feel like I would like a fullmask O2 flowing full blast intead of nasal cannula especial when on conserver. I do not have a oximeter at home pulmonary dr des not think i need one.Well that is pretty much my histroy from here in wisconsin lol.

[Guest guest]

Cathy

I am also confused about your overall diagnosis. From the biopsy did

they tell you what form of ILD you have? UIP, NSIP, BOOP, DIP, etc.? At

the least it seems some other things are at work, too. I'm not sure I

understand the " normal lung tissue. " Nor does the going from use of

oxygen to being able to exercise an hour with no oxygen seem consistent

with just PF. The last one that got me in all you wrote was him telling

you that you didn't need an oximeter. Every person with PF needs one.

I frankly at this point would want to get to another pulmonologist,

preferably at a teaching hospital with an ILD department and get a

comprehensive diagnosis. They would review all history and take their

own tests. They would even review the slides from the biopsy.

Your kidney damage and PH can certainly be caused and worsened by lack

of oxygen and yet you're told you don't need an oximeter. Have you been

given anything for your PH?

The closest IPF center of excellence to you is probably the University

of Chicago. Many of us have been there.

>

> My parents both smoked i smoked on and off for 28 yrs. Then had a

> bout of chest pain and shortness of breath so internal med dr sent me

> to cardio for stress test. I was way overweight so they used a drug

> to induce stress on my heart everything was fine with my heart but

> could not really get my breath back after test. I kept telling dr

> this finally after a month shesent me to a pulmonary dr. He checked

> me over checked my sats and sent me straight to the hospital with low

> sats.

> He proceeded to do a lot of tests, a pft and ct scan with contrast.

> and sent me home 3 days later i was back to see him with even lower

> sats even at rest so back to the hospital and had a cardiac cath done

> and breathing treatments and open lung biopsy. The biopsy showed

> normal lung tissue. He then sent me home on continous O2 at 2ltrs. I

> did a stint of pulmonary rehab with O2 and then just adjusted to O2

> and seen pulmonary dr every 6 months. this spring i started maintence

> pulmonary rehab and worked my way to not having to use O2 all day

> just at night and was able to exercise for full hour with no O2.

> Since before going on O2 I have battled depression and anxiety and

> ptsd. I was also told I was in moderate kidney failure.

> I August I started noticing my breathing getting worse and

> Pulmonary dr said my pft was a little worse. My cholesterol med made

> my legs hurt and get weak so found out i was alergic to it and spent

> 4 weeks not exercising. I went to rehab 1 time exercised with O2 but

> could not do as much. Then noticed just talking on the phone made me

> short of breath and went to internal med dr and with O2 my sats were

> fine but was very short of breath. he then walked me in the hallway

> and my sats dropped to 82 with O2. So he told me to go toPulmonary dr

> and since I also was getting chest pain to go to Cardio. I got an

> appointment with pulmonary in a week but called cardio and nurse said

> go to er. Went to er and sats kept falling while I layed there so

> they kept me in the hospital.

> Oulmonary dr seen me and wanted pft and stress echocardigram done.

> ( I do show Pulmonary hypertension) Cardio said heart fine, pft

> better than last one. Sats stayed fairly good in hospital, in fact

> resp. therapist took me on small walk with out O2 and sat stayed

> above 90 but was extremely short of breath. Pulmonary dr thinks I am

> having infiltrates from my reflux going into lungs causing me

> problems so am seeing GI dr too lol. When I go up to 3 ltrs it helps

> some to bringbreathingback to normal in shorter time. There are times

> I feel like I would like a fullmask O2 flowing full blast intead of

> nasal cannula especial when on conserver. I do not have a oximeter at

> home pulmonary dr des not think i need one.

> Well that is pretty much my histroy from here in wisconsin lol.

>