Re:Sher

[Guest guest]

Hi Sher, When did you see your Dr. about the SOB?? Did I miss something.

I told My Dr. today I am really sick and tired of this tube in my nose and she said 24/7.

If I'm sitting quite ok but if I am talking and visiting up the nose with the hose..

Take care of you and keep us posted.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

Judy...I sure admire your determination! Yes, I think most of us WILL talk to our Pulmo. I'm having a heart-stress test done to check out the rather constant sob. I wish this didn't have to be so 'hard' on us...all of it....any of it....!

" Don't worry about tomorrow, God is already there " .

Sher ipf 3-06, OR.

On Tue Mar 13 21:12 , 'cbayjpw' sent:

Sher - I saw this on the internet this afternoon. I think we should

all call our pulmonary doctors and ask them about this. Of course,

getting insurance companies to pay for it will probably be a

challenge for everyone. I've been preparing a spreadsheet to track

all of my medical costs since 1 Oct 06 because my insurance carrier

has been messing up some of the claims. Also I have been preparing

a spreadsheet to track my prescription costs as I need to switch my

insurance from my employer health plan to a Medicare supplement

before 31March so I have guaranteed coverage. The medical charges

have totaled just under $30,000 since 1 Oct. and the prescriptions I

am on now would run about $2,400 a month without insurance. So

obviously a Medicare supplement plan and RX Part D is essential.

Hopefully between my Medicare Part B which I started 1 Oct 06 and my

health insurance through my employer will pay for most of the

$30,000. This is my 4th week on sick leave (without pay) and most of

my time has been spent going to rehab sessions, doing breathing

treatments, taking all my meds and sorting through insurance papers

and calling the insurance company for information. My short term

disability insurance kicks in next week and will pay me 60% of my

salary minus my income from social security for 150 calendar days

then long term disability insurance will kick in and run for 15

months. My pulmonary doctor has indicated I may only have 1 year to

live unless I have a lung transplant. I am determined to do

everything I can to prove him wrong. And everytime I see photos of

my grandkids in HI I am even more determined to get better so I can

fly again and go see them again.

Love and Aloha,

Judy - IPF Nov 06

[Guest guest]

Hi Sher

I remember in Spring, 2004, when I was also SOB. But my sat was 90.

When I would rush around my sat would drop in the 80's. I knew this

because my dad had an oximeter and when ever I went to his house, I

would check it. I got 87, etc. and would then sit down and rest.

Exactly a month before I became so ill and on life support (June 26,

2004) on May 28, 2004 I went to see my pul dr at Emory in Atlanta. I

had everything--breathing tests, the walking test, x-ray. I knew I was

SOB. I asked the pul dr if I needed to be on oxygen. He said no that I

did not need it. Up to that point, I always felt like I was borderline

on needing oxygen and I remember it's a hard place to be in. A month

later when I was critically ill in Dalton, Ga hospital, they were asking

my family " Why isn't she on oxygen? " Now I am on oxygen. I know

exactly how you feel. Take care. Jane IPF 12/1999

[Guest guest]

Jane,

I, too, was in this prediciment. When I was first diagnosed, I was on 02 for about 18 months. Then, I began to wean off because my fibrosis had stabalized and I was keeping my numbers up. However, as the months passed, I became more and more short of breath. During that period I was seeing a different doc because of insurance change. She was one of those docs that look at the printed numbers and do not listen to the patient. She acted like my sickness was no big deal. She let me get so sick that I nearly died. When they let me go from the hospital, I was back on 02 and I was so thankful.

I am of the opinion that those 6 minute walks are not a great way to measure 02 need. I think the 24 hour monitor is better. That captures your numbers as you go about regular activities that you do every day. Taking a shower, dressing, getting laundry out of washer, making the bed, getting into the car, etc. etc. It is much more accurate.

Take care and keep breathing..

Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana >> > Hi Sher> > I remember in Spring, 2004, when I was also SOB. But my sat was 90. > When I would rush around my sat would drop in the 80's. I knew this> because my dad had an oximeter and when ever I went to his house, I> would check it. I got 87, etc. and would then sit down and rest. > Exactly a month before I became so ill and on life support (June 26,> 2004) on May 28, 2004 I went to see my pul dr at Emory in Atlanta. I> had everything--breathing tests, the walking test, x-ray. I knew I was> SOB. I asked the pul dr if I needed to be on oxygen. He said no that I> did not need it. Up to that point, I always felt like I was borderline> on needing oxygen and I remember it's a hard place to be in. A month> later when I was critically ill in Dalton, Ga hospital, they were asking> my family "Why isn't she on oxygen? " Now I am on oxygen. I know> exactly how you feel. Take care. Jane IPF 12/1999>

[Guest guest]

Joyce,

Oh I forgot about the 24 hr test! I also had a test wearing an oximeter taped to my finger all night that recorded readings of my oxy and heart rate. That test told me I needed a sleep study and now I wear a C-Pap at night! Maybe that is what Sher needs to convince her dr. I. too never slept well until I got my C-Pap. I had been dealing with symptoms even as a little girl (and I wasn't overweight then). My symptoms, before C-Pap even as an adult consisted of waking up and screaming. I never could figure this out. My hubby and daughter were used to it. I discovered these were smothering attacks. I had a bad one in the hospital after the OLB. I woke up breathless (I was on oxy) and thought I needed a breathing treatment. I remember my mother first started on oxygen only at night before she went full-time with it.

It is hard to talk to our dr sometimes and to get them to listen to us. I gave my dr at Emory a bad report after a visit last July and in Dec. he had straightened up somewhat. I also complained to the administrative head for the Pulmonary Dept there and when I went in Dec. I requested a meeting with her while I was there. I met her and I told her thank you for helping me. She knows who I am now. I had been hearing that the pul dr at Emory that I go to is nationally known. Well, he needs to act better. My friend who had the lung transplant at Emory has a different pul dr.

Sher, walk on the treadmill at a good pace and then check your sat. I did and I got 88 and I qualified for Medicare to pay for oxy. It may be an insurance or medicare problem about getting oxy because drs know they won't pay for it unless it is a certain level. We don't want to get to that level! We want to get better to maintain our lives. So remember "It's all about the money!"

Jane IPF 12/1999> >> >> > Hi Sher> >> > I remember in Spring, 2004, when I was also SOB. But my sat was 90.> > When I would rush around my sat would drop in the 80's. I knew this> > because my dad had an oximeter and when ever I went to his house, I> > would check it. I got 87, etc. and would then sit down and rest.> > Exactly a month before I became so ill and on life support (June 26,> > 2004) on May 28, 2004 I went to see my pul dr at Emory in Atlanta. I> > had everything--breathing tests, the walking test, x-ray. I knew I was> > SOB. I asked the pul dr if I needed to be on oxygen. He said no that I> > did not need it. Up to that point, I always felt like I was borderline> > on needing oxygen and I remember it's a hard place to be in. A month> > later when I was critically ill in Dalton, Ga hospital, they were> asking> > my family "Why isn't she on oxygen? " Now I am on oxygen. I know> > exactly how you feel. Take care. Jane IPF 12/1999> >>

[Guest guest]

Thanks, Sher for the info- I think I was just generalizing and got

carried away about the CPap. And I have read about so many on this board

who don't sleep and honestly I cannot remember who has what and does

whatever to help themselves. Glad you are getting your winks! Jane IPF

12/1999