Re: Update after pulmo doc - hate to even call him a doctor

[Guest guest]

Sunny, I was just thinking last night that I could use some reglan. I used to take it and it worked great for me. I can't believe that that is all they have for it. I have also take prilosec and prevacid. I'm not sure about your surgery but my sister has esophageal surgery. She had to have it redone later. I'm sorry to say that she had it done in Spokane and I don't think much of the medical care around here. I have had 3 major surgeries and 3 stents in my heart in the 4 1/2 years since I moved here. Some of it didn't go so well. Now I wasn't diagnosed with this as early as I should have been. I hope that you have good luck. The doctor's can't be all bad. I have had both bad and good since I've been here but the bad ones were too bad. My sister's surgery may not have been the same. I'm not sure exactly what they did to her. Beverley

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

[Guest guest]

Sunny.... I so sense your frustration and anxiety. I'm sending you a special big MamaSher hug!

Out of curiosity...why would pulmodude 'refuse' the 24 oximeter? Or....perhaps he doesn't need the information. You already know your nighttime O2 is dropping and you will be going on night O2.

I'm betting he doesn't need anymore "nighttime" info.

You say 'now it's just PF'.....isn't CAN something different? I'm thinking that's why pulmodude referred you to Gastro.

I know how frustrating it is to see one doc then another doc...everyone has a specialty now. I've posted about this before.

(If your gastro found PF he'd send you to the pulmodude....)

Hang on Sunny. One day at a time or in our cases, one doc at a time.

You'll feel better after you've seen the Gastro guy.

Our biggest job is to advocate for ourselves and that usually means coordinating our care and where we get it.

I have a Gastroguy too.

Keep on keepin' on friend.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho

[Guest guest]

Sunny.... I so sense your frustration and anxiety. I'm sending you a special big MamaSher hug!

Out of curiosity...why would pulmodude 'refuse' the 24 oximeter? Or....perhaps he doesn't need the information. You already know your nighttime O2 is dropping and you will be going on night O2.

I'm betting he doesn't need anymore "nighttime" info.

You say 'now it's just PF'.....isn't CAN something different? I'm thinking that's why pulmodude referred you to Gastro.

I know how frustrating it is to see one doc then another doc...everyone has a specialty now. I've posted about this before.

(If your gastro found PF he'd send you to the pulmodude....)

Hang on Sunny. One day at a time or in our cases, one doc at a time.

You'll feel better after you've seen the Gastro guy.

Our biggest job is to advocate for ourselves and that usually means coordinating our care and where we get it.

I have a Gastroguy too.

Keep on keepin' on friend.

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

Update after pulmo doc - hate to even call him a doctor

Hi Everyone,

Just got home from pulmo dude. Refused to let me do 24 hour oximeter! My O2 at night is dropping to 83% so will go on night oxygen. So anyway I don't have IPF any more. Now it's just PF because they found out why my lungs are scarring so badly and why I can't breathe. I have Chronic Aspiration Neuritis (spell incorrectly I am sure). I am aspirating so much stomach contents that it is and has been scarring my lungs badly that's why I am down to 40% capacity. Pulmo doc says there are only two treatments: Raglan (which I am extremely allergic too) or surgery. He has referred me to gastro guy for surgery which in his words "is very intense". Anyone ever had or know anyone who has had this type of surgery. My gastro dude isn't back until Monday and I really want to know if they are going through my abdomen. or throat or where? I am so upset. How can there be only one drug to treat this? There are a hundred to treat everything else. Normal stain of stomach oil in lungs is about 55. Mine was 142. Doc says without the surgery my lungs will continue to deteriorate and I will get worse and worse. Said the pain in my chest is esophageal spasm and it hurts like a very bad word but there is nothing he can do about it. That's gastro guy's department. Believe it or not pulmo doc said "I just diagnose this I don't treat it." Go see gastro guy and come back to me in 2 months. & *^ & **** & ^^%^ & **!!!!! And that's how I feel about all of it.

Sunny, PF '09 & whatever else could possibly be wrong with the human body, Idaho