Re: Sher

[Guest guest]

Sher,

If your sats drop into the 80's when you exert yourself then you certainly do need the oxygen for exertion. If you rebound that quickly, then it is safe to put the O2 aside when you sit down.

I did not realize (and I really should have asked) that you had not been checked for pulmonary hypertension.

I do feel much better now that you are under the care of someone who will get to the bottom of your issues and do whatever will help.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, October 18, 2009 5:06:35 PMSubject: Re: Sher

 MB....oh thank you for telling me that sob can be caused by PH!

Perhaps you will remember, that soon after I joined the board, my constant concern has been about sob, (now worse) and yet my sats would be low 90s. So I didn't use 02. I do not want to have PH added into my records but at LEAST it explains a reason for the sob.

What do I do when I am sob then? I know of course the pursed lip breathing... I'm thinking Dr. Raghu's reports will state that my 6mw went to 88 and then right back to 90. Dr. R. said he didn't think I needed o2 (except at night).

The o2 has become a 'crutch' for me but maybe I don't need it when I'm out and about. I certainly get sob but sats jump back to 90 even when they dropped to 87--88.

Dr R says 'this disease is very confusing and hard to understand".

I will go now and look at PH...

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Sher

Hey Ladybug, How is it going ?? I do hope you are having good days. I think of you and just know you are hurting is upsetting. Keep us posted.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

[Guest guest]



I feel better too. I'm going to call in the morning and see if there is an email I can use to his nurse. I have many questions I did not ask...after we were gone is when I thought of them, of course.

He asked me to come back in three months, regardless of the results of the tests. He asked me if the 2 hour trip would bother me. Too see him again? I would drive twice that far.

I'm feeling confident that his overlooking my care will bring results or at least attention to my needs.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Sher

Hey Ladybug, How is it going ?? I do hope you are having good days. I think of you and just know you are hurting is upsetting. Keep us posted.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

[Guest guest]

Sher

To get to a doctor experienced with the disease always turns out to be

worth the drive. Glad you did it. Hope for others who have been on the

fence it will encourage them to get to an IPF Center or Excellence or

other Interstitial Lung Disease Center.

>

> I feel better too. I'm going to call in the morning and see if there

is an email I can use to his nurse. I have many questions I did not

ask...after we were gone is when I thought of them, of course.

> He asked me to come back in three months, regardless of the results of

the tests. He asked me if the 2 hour trip would bother me. Too see him

again? I would drive twice that far.

> I'm feeling confident that his overlooking my care will bring results

or at least attention to my needs.

> MamaSher; 71, IPF 3-2006, OR.

> Don't fret about tomorrow, God is already there!

> Sher

>

>

> Hey Ladybug, How is it going ?? I do hope you are having good

days. I think of you and just know you are hurting is upsetting.

> Keep us posted.

>

>

>

>

>

>

>

>

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

>

> " I believe that friends are quiet angels who lift us to our

feet,

> when our wings have trouble remembering how to fly. "

>

[Guest guest]

The information we get here on the board is so valuable. I didn't think I was a 'newbie' any longer but I see as dx change or treatment changes or something 'new' creeps in, I sure am a newbie again.

What is so good is that we can all learn from each others experience.

I especially encourage our members to seek out a new dr. if the one you have is not a good fit. I changed drs 4 times, ended back with the one I first left...I have never had much confidence in him and now that we have moved I can look again and will.

There are certain tests we need...such as a blood gas and and echo done, every year unless it's indicated sooner. My PH was missed because I had one of each of these tests in the past 3 years. That is too long. I have nearly all the symptoms for PH and could have been on medication!

Dr Raghu spotted it on my first visit with him!

I also have learned why I'm so tired. I mean down and can't get up most of the time tired. Go no place, do nothing to speak of.

I needed these answers. I've been really hard on myself.

You members out there, you new ones...learn from what information comes out of the board...

Love ya all..

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Sher>>> Hey Ladybug, How is it going ?? I do hope you are having gooddays. I think of you and just know you are hurting is upsetting.> Keep us posted.>>>>>>>>>> Love & Prayers, Peggy> Florida, IPF/UIP 2004>>> "I believe that friends are quiet angels who lift us to ourfeet,> when our wings have trouble remembering how to fly.">

[Guest guest]

your information is invaluable. thanks.

BSK

To: Breathe-Support Sent: Sun, October 18, 2009 5:47:21 PMSubject: Re: Re: Sher

The information we get here on the board is so valuable. I didn't think I was a 'newbie' any longer but I see as dx change or treatment changes or something 'new' creeps in, I sure am a newbie again.

What is so good is that we can all learn from each others experience.

I especially encourage our members to seek out a new dr. if the one you have is not a good fit.. I changed drs 4 times, ended back with the one I first left...I have never had much confidence in him and now that we have moved I can look again and will.

There are certain tests we need...such as a blood gas and and echo done, every year unless it's indicated sooner. My PH was missed because I had one of each of these tests in the past 3 years. That is too long. I have nearly all the symptoms for PH and could have been on medication!

Dr Raghu spotted it on my first visit with him!

I also have learned why I'm so tired. I mean down and can't get up most of the time tired. Go no place, do nothing to speak of.

I needed these answers. I've been really hard on myself.

You members out there, you new ones...learn from what information comes out of the board...

Love ya all..

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Sher>>> Hey Ladybug, How is it going ?? I do hope you are having gooddays. I think of you and just know you are hurting is upsetting.> Keep us posted.>>>>>>>>>> Love & Prayers, Peggy> Florida, IPF/UIP 2004>>> "I believe that friends are quiet angels who

lift us to ourfeet,> when our wings have trouble remembering how to fly.">

[Guest guest]

Sher

While he may suspect PH, don't jump the gun too far yet. Have you had an

echocardiogram of any sort yet? That might give an indication but then

the right heart catheter is the only way to know for certain. My echos

indicated possibility of PH but I came out clean on the heart catheter.

(Thats the wire in the heart thing).

This serves as a reminder to everyone to have regular echocardiograms

and if there is any sign of possible PH to get a right heart catheter.

It's an easy procedure that answers the question.

> >

> > I feel better too. I'm going to call in the morning and see if

there

> is an email I can use to his nurse. I have many questions I did not

> ask...after we were gone is when I thought of them, of course.

> > He asked me to come back in three months, regardless of the

results of

> the tests. He asked me if the 2 hour trip would bother me. Too see

him

> again? I would drive twice that far.

> > I'm feeling confident that his overlooking my care will bring

results

> or at least attention to my needs.

> > MamaSher; 71, IPF 3-2006, OR.

> > Don't fret about tomorrow, God is already there!

> > Sher

> >

> >

> > Hey Ladybug, How is it going ?? I do hope you are having good

> days. I think of you and just know you are hurting is upsetting.

> > Keep us posted.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Love & Prayers, Peggy

> > Florida, IPF/UIP 2004

> >

> >

> > " I believe that friends are quiet angels who lift us to our

> feet,

> > when our wings have trouble remembering how to fly. "

> >

>

[Guest guest]

sher

i'm really glad that dr raghu (spelling???) wants to follow you every three months

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: SherTo: Breathe-Support Date: Sunday, October 18, 2009, 6:07 PM

 I feel better too. I'm going to call in the morning and see if there is an email I can use to his nurse. I have many questions I did not ask...after we were gone is when I thought of them, of course.

He asked me to come back in three months, regardless of the results of the tests. He asked me if the 2 hour trip would bother me. Too see him again? I would drive twice that far.

I'm feeling confident that his overlooking my care will bring results or at least attention to my needs.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Sher

Hey Ladybug, How is it going ?? I do hope you are having good days. I think of you and just know you are hurting is upsetting. Keep us posted.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

[Guest guest]

Oh Sher, it's a joke...I've used that expression all my life for things that are universal. Someone has the flu---been there, done that....Someone has car problems---been there, done that....bought the t-shirt sort of means you've got the scars to prove it!Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: <monicatejeda1@ yahoo.com>Subject: PainTo: Breathe-Support@ yahoogroups. comDate: Friday, November 20, 2009, 4:53 PM

I was diagnosed with ILD 2 weeks ago. Currently recovering from lung biopsy. My biggest complaints have been shortness if breath and cough. The only pain / discomfort i have felt is from the biopsy. Its scary because i dont know what more to expect. I am now on O2 and just love the fact that i can breathe.Any input will be greatly appreciated. / 36 / ILD 11-09 / Columbia, SC

[Guest guest]

Oh Sher I wish you hadn't reminded me that I am out of Yardley Lavender.. I look it up then don't have my card here or some such thing then I forget. OK I am giving a mission.. I think maybe bed bath and beyond may carry it. I am gonna call. NOW.....I know you know God is with you and so many talking to him on your behalf. So just get into your princess mode and be waited on.. ;DPeggy, FloridaIPF 2004Always praying for my PEEPS----- "Sher Bauman" wrote:

>

> 

Peggy... I'm so pleased to read that your days are 'usually good'.

I rather imagine that coughing enough to bring up the gunk is necessary of course.

Your days sound about like mine.

Yeah, here comes another Thanksgiving. Seems like the last one was only a few months ago, not another year gone by.

Well, the RHC will be later today. I need to get busy packing a little bag. I will be staying overnight because the procedure is done so late in the day. I really don't mind staying...makes me feel a bit more secure. I'm a big wimp I am!

I think of you often too. Every time I see a bar of Yardley Lavender bar soap I think of you. It's my favorite too and when I buy it, there you are! When I smell it, there you are! I know the rest of my life will give me these memories of you dear heart.

It's still amazing to me how this board gives us true "love" relationships.

The written words and the "voice" of the personality come thru' so strongly that we can really feel the love. The guys as well as the gals.

Collectively we form a 'bridge over troubled waters' that will never cave in.

Chances are we will never meet personally but know I have genuine feelings of 'love' for you...

MamaSher; 71, IPF 3-2006, OR.> Don't fret about tomorrow, God is already there!

> Re: To cough or not to cough...

> >

> Sher, I cough enough to get rid of the gunk but several times a day I just can't seem to stop and my chest has heart attach type pain, it feels like my breast bone but i am sure it is muscle. The morphine relaxes the muscles and the pain stops. I haven't had any bad coughs since early this AM. > When I first get up I always have a good 4 or 5 min. cough. then morphine, coffee & toast ( with apple butter) and I am good until lunch. If the cough starts again I can tell when it is going to be a long bout so I have another cocktail..LOL s name for morphine. > Today has been good. then my days are usually good. I read and play in my computer> talk on the phone. get exhausted and go to bed around 10:30 PM. I am looking forward to Thanksgiving and seeing the GROWN Grands.. I can hardly believe they are adults.> is 14 so I make her be my baby..lol > > Take Care Sher. I think of you so often and the pain you go through. I just hate it. I think ONE thing would be enough for us to have. > > I don't know why I can't just get up and do what ever I want. If I weren't so tired I would give it a shot. lol wishful thinking.. always hope for tomorrow.> >

> Love & PrayersPeggy, Florida

> IPF 2004> >

[Guest guest]



Peggy..... believe it or not, I get the Lavender at the Dollar Store!

My princess mode lasted only 2 days but it was nice to just be waited on!

I'm sure you are full of T-day goodies as we are. Lysa is such a good cook.

Now to be thinking of Christmas!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: To cough or not to cough...

> >

> Sher, I cough enough to get rid of the gunk but several times a day I just can't seem to stop and my chest has heart attach type pain, it feels like my breast bone but i am sure it is muscle. The morphine relaxes the muscles and the pain stops. I haven't had any bad coughs since early this AM. > When I first get up I always have a good 4 or 5 min. cough. then morphine, coffee & toast ( with apple butter) and I am good until lunch. If the cough starts again I can tell when it is going to be a long bout so I have another cocktail..LOL s name for morphine. > Today has been good. then my days are usually good. I read and play in my computer> talk on the phone. get exhausted and go to bed around 10:30 PM. I am looking forward to Thanksgiving and seeing the GROWN Grands.. I can hardly believe they are adults.> is 14 so I make her be my baby..lol > > Take Care Sher. I think of you so often and the pain you go through. I just hate it. I think ONE thing would be enough for us to have. > > I don't know why I can't just get up and do what ever I want. If I weren't so tired I would give it a shot. lol wishful thinking.. always hope for tomorrow.> >

> Love & PrayersPeggy, Florida

> IPF 2004> >

[Guest guest]

Peggy... a quick reply this morning before I get in the shower...

I have things I need to do today and instead I sit in front of my laptop all day!

Thanks for your prayers. I felt the prayers from all the members. I'll be anxious to see the cardio-gal in 10 days and get all the testing results and talk with her.

Other than feeling tired (nothing new) I'm doing pretty good.

I hope you are doing pretty good today as well.

I HAVE to get busy doing what I need to do. Guess I'm hating to get started putting my medical notes/tests together in one sectioned expanding file. Dr Raghu wants me to hand carry what ever transpires between seeing him and going back in January.

I can hardly believe how I've changed. Me, the detail person, never put off to tomorrow what can be done today, two speeds; fast and faster. lol.

Yes, it would be great if we could have a few get together and meet. I'm worried about Kathy..in Olympia. I've written I think three times. She is always good to respond. I'll give her a call later.

Bye for now. Love ya.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Sher

Sher I am so thrilled that you are doing well. I was praying for you. I hope you NW folks can get together. That would be so wonderful.I wouldn't trade anything for the times we have had together.Later, Love, Peggy