Re: Squeaky Wheel Approach

[Guest guest]

sounds like you need to get yourself to a teaching hospital that specializes in ILDs

your body tells you when you need to use O2, just think of it as your best friend

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Squeaky Wheel ApproachTo: Breathe-Support Date: Friday, April 17, 2009, 9:36 AM

Hi Stephani,

I am in the same place you are although I've had open biopsy. I also live in Utah. St. , to be exact. I've had 3 pulmonologists and the only thing they ever offer is the comparison of scan and pft in comparison to the last. Tells me NOTHING! PFT looks about the same as a year ago. No change in scan. Even so, I am SOB much of the time and this past week is the first time I actually thought I could use O2.

I called his office yesterday for advice. Since a huge exposure to my trigger, mold, I have been on 40mg of pred a day with very little results. Also on Advair inhaler (high dose) and Qvar. Using Albuterol which doesn't help much and eating cough drops like candy. To get to the point, I left a message and asked his nurse to "run it by him" as they said, and call me with advice. Never heard from them. There are only two in this practice. So, it would be off to Salt Lake (300 miles) or Vegas (120 miles) if I want to get demanding. Too darn weak and tired to get demanding. Also, if anyone has advice as to someone to see in the Huntington Beach CA area I'd be interested. Near Long Beach Memorial. I have family there and they would be most helpful in getting around.

I am about ready to confront them with the squeaky wheel routine. Possibly I will squeak a bit louder today and get some results.

ann, Interstitial Pneumonitis 1997, Hypersensitivity Pneumonitis 2004 (biopsy)

[Guest guest]

sounds like you need to get yourself to a teaching hospital that specializes in ILDs

your body tells you when you need to use O2, just think of it as your best friend

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Squeaky Wheel ApproachTo: Breathe-Support Date: Friday, April 17, 2009, 9:36 AM

Hi Stephani,

I am in the same place you are although I've had open biopsy. I also live in Utah. St. , to be exact. I've had 3 pulmonologists and the only thing they ever offer is the comparison of scan and pft in comparison to the last. Tells me NOTHING! PFT looks about the same as a year ago. No change in scan. Even so, I am SOB much of the time and this past week is the first time I actually thought I could use O2.

I called his office yesterday for advice. Since a huge exposure to my trigger, mold, I have been on 40mg of pred a day with very little results. Also on Advair inhaler (high dose) and Qvar. Using Albuterol which doesn't help much and eating cough drops like candy. To get to the point, I left a message and asked his nurse to "run it by him" as they said, and call me with advice. Never heard from them. There are only two in this practice. So, it would be off to Salt Lake (300 miles) or Vegas (120 miles) if I want to get demanding. Too darn weak and tired to get demanding. Also, if anyone has advice as to someone to see in the Huntington Beach CA area I'd be interested. Near Long Beach Memorial. I have family there and they would be most helpful in getting around.

I am about ready to confront them with the squeaky wheel routine. Possibly I will squeak a bit louder today and get some results.

ann, Interstitial Pneumonitis 1997, Hypersensitivity Pneumonitis 2004 (biopsy)

[Guest guest]

They have classified me as having IPF (don't know the cause), though I suspect

mold as well. I have used prednisone, albuteol, a nebulizer and all kinds of

other junk that just really threw my blood tests WAY OUT OF WHACK. I finally

told them I wouldn't take all of those drugs and opted for glucophage to control

the prednisone induced diabetes II, hyzaar for my blood pressure and simvastatin

(a half dose... 20 mg) to control my cholesterol. My last blood test put

everything back to normal (after 3 years). My A1c for diabetes was 5.7... which

is really good for a diabetic. I am on 2 liters of oxygen at night but if I get

stressed or really fatigued, I will lay down for a half hour and plug into the

O2 generator. My regular doctor put me on the O2 as I couldn't get in to see a

pulmonologist for a month an a half initially. That is a another story....

Good luck and check drug interactions carefully.

Take care,

Stefani

>

> Hi Stephani,

> I am in the same place you are although I've had open biopsy.  I also live in

Utah. St. , to be exact.  I've had 3 pulmonologists and the only thing

they ever offer is the comparison of scan and pft in comparison to the last. 

Tells me NOTHING!  PFT looks about the same as a year ago. No change in scan. 

Even so, I am SOB much of the time and this past week is the first time I

actually thought I could use O2.

>

> I called his office yesterday for advice.  Since a huge exposure to my

trigger, mold, I have been on 40mg of pred a day with very little results.  Also

on Advair inhaler (high dose) and Qvar.  Using Albuterol which doesn't help much

and eating cough drops like candy.  To get to the point, I left a message and

asked his nurse to " run it by him " as they said, and call me with advice.  Never

heard from them.  There are only two in this practice.  So, it would be off to

Salt Lake (300 miles) or Vegas (120 miles) if I want to get demanding.  Too darn

weak and tired to get demanding.  Also, if anyone has advice as to someone to

see in the Huntington Beach CA area I'd be interested.  Near Long

Beach Memorial.  I have family there and they would be most helpful in getting

around.

>

> I am about ready  to confront them with the squeaky wheel routine. Possibly I

will squeak a bit louder today and get some results.  

>  ann, Interstitial Pneumonitis 1997, Hypersensitivity Pneumonitis 2004

(biopsy)

>