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]

Hi Sunny,

Well I hope you got some sleep last night. You must have been exhausted after the day you had yesterday. Your pulmo is quite a charmer isn't he? Wow, he must have been absent the day they teaching about bedside manner in medical school.

My guess is that you have chronic aspiration pneumonitis (as opposed to neuritis). Pneumonitis is any inflammatory condtion of the lung and chronic aspiration just means you've been aspirating stomach contents into your lungs over a long period of time.

The surgery he is talking about might be a "Nissen fundoplication". What they do in this surgery is wrap the upper part of the stomach completely around the lower part of the esophogus. Afterwards whenever the stomach contracts (such as when you are eating) it squeezes the lower esophogus and prevents acid and stomach contents from moving up as they have been doing. If this is the surgery your doctor is referring too it is usually done through the abdomen with a laporascope and is done with two or three tiny incisions and recovery is not difficult. I'm not sure if this is what your doctor is talking about though because he referred to it as very "intense" so it's possible that he's talking about a different surgery that I'm not familiar with. The Nissen fundoplication is done at Duke on every lung transplant patient, post transplant. They do this to protect the new

lungs from stomach acid. Since Gerd is such a common problem with pulmonary fibrosis patients they feel this is a fairly simple precaution to take.

In your position I would still continue to pursue a second pulmonary opinion. Your pulmo's attitude concerning your oxygen needs is reprehensible. His out and out refusal to order a relevent test boggles my mind. He won't even do a 6 minute walk with you....

In any case, it does sound as though you are on the way to getting some answers. Keep the faith, we're all here behind you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, April 23, 2009 9:17:51 PMSubject: 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