Re: All the terms and types of PF

[Guest guest]

Joyce,

Oh color me cynical, color me confused, color me frustrated but most importantly color me STILL ALIVE!

As for what your chart said, I suppose you could say that your PH is secondary to your connective tissue disease and that the fibrosis is somewhere there in the middle. If you never had the connective tissue disease you likely never would have had either the fibrosis or the PH right? Who knows why they write what they write on our charts.

Wanna hear something funny? The first time I saw Dr. on at Duke was last December. I got a copy of the dictated note in the mail a couple of weeks later. In the examination part of the note, Dr on stated, "Patient is pleasant, overweight woman with a normal gait in spite of using a walker." I stopped reading....HUH? A walker??? What on earth is he talking about. I never used a walker in my life. The only thing I had with me that day was my rolling backpack with two D tanks in it. I just tucked that away till I went to see him again and I asked him about it. He read it and proceeded to turn red to the roots of his hair. He could not have been more mortified. He apologized profusely and actually admitted he was probably thinking of someone else while he was dictating my note. I mean he had the medical facts right cause he had my chart in front of him when he was dictating but was describing my physical appearance from

memory. We both had a good laugh and moved on. He won't forget who I am anymore I'd imagine.

I guess my point is they're human too, they make mistakes. They use words we don't understand and sometimes write different things on our charts than they tell us. Which is why it's so important to do what you always say, remember we're going to battle against this disease, we're fighting for our lives and we have to look out for ourselves. We can't afford to treat the doctors like gods, they're human just like us. We MUST ask questions over and over until we understand and research on our own, seek out support if we want to LIVE!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

[Guest guest]

MB... I remember in some recent notes a previous Dr. wrote "pt lives alone. She has a cat and a dog".....geeze. I'm married and have no cat!! lol

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

All the terms and types of PF

MB,

Even with open lung biopsy and countless HRCTs and scans....my disease has been labeled just about every one of the terms. The very first thing it was called was Lupus Pneumonitis, which didn't sound so bad. I knew nothing about nothing. Each time I see a different pulmonologist or go through testing at another facility, the diagnosis comes back different. And yes, even Idiopathic. At the end of it all, which seems closer every day, a duck is still a duck. An ugly duckling!

Cynical, yeah. Smarter than ten years ago, yeah. Alive, yeah. Happy about that, yeah. Thankful, oh yeah. They can call it whatever they want. I know it is plain old Pulmonary Fibrosis secondary to numberous autoimune diseases or to medications like Methotrexate for those diseases.

When I got my diagnostic list from my recent hospital stay, there were 8 different diseases, etc. listed. The top one said Severe Pulmonary Hypertension due to Connective Tissue Disease. Under that was End Stage Pulmonary Fibrosis. I would have thought it would say the hypertension was due to the fibrosis. Which it was. Any ideas, nursey?

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> ,> You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > I find it so confusing trying to sort out the terminology! > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive

[Guest guest]

Sher,

That is about how well they listen. Good grief. I don't think Rich looks like a feline!

Hugs, Joyce D.> >> > ,> > You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > > I find it so confusing trying to sort out the terminology! > > Beth > > Age 48 Fibrotic NSIP 06/06> > > > Change everything. Love and Forgive>

[Guest guest]

Hahahaa Joyce...no, no felines here! I think he may wish for 9 lives tho'...he gets tired earlier.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: All the terms and types of PF

Sher,

That is about how well they listen. Good grief. I don't think Rich looks like a feline!

Hugs, Joyce D.> >> > ,> > You're right most doctors do call it pneumonitis but either word is correct. The definition of both words is an inflammatory illness of the lung. Most of us think of pneumonia as an infection that is treated with antibiotics. If I were guessing I'd say that's how our type of lung disease came to be referred to as pneumonitis, meaning an inflammatory illness of the lungs not involving an infection. > > I find it so confusing trying to sort out the terminology! > > Beth > > Age 48 Fibrotic NSIP 06/06> > > > Change everything. Love and Forgive>

[Guest guest]

Joyce,

I was told yesterday that I have pulmonary hypertension. I asked how the hell was that possible as I've been on O2 since November and the echo that I had in november and in February didn't show PH. The tx doctor said that the trigger from the dms that caused the PF is probably now causing scarring to the blood vessels. If this is right (and in my experience I'll be given lots of different explainations before any agree) then that would be why they have said that the PH is due to the connective tissue disease rather than the PF.

I wonder what else this bloody DMS has got in store for me!

Love Ze xx> >> > ,> > You're right most doctors do call it pneumonitis but either word is> correct. The definition of both words is an inflammatory illness of the> lung. Most of us think of pneumonia as an infection that is treated with> antibiotics. If I were guessing I'd say that's how our type of lung> disease came to be referred to as pneumonitis, meaning an inflammatory> illness of the lungs not involving an infection.> > I find it so confusing trying to sort out the terminology!> > Beth> > Age 48 Fibrotic NSIP 06/06> >> > Change everything. Love and Forgive>