Re: Hey Dear Friends. Please help me today

January 12, 2009

Oh ML, please don't apologize for where you are or what you write. We care and feel helpless we can't do more.

I'm going to leave the O2 (med) suggestions to those who know more about it. I'm on 2L and have no experience w/what troubles you...

I do know how hard it has been and still is for you to cope with doing less and less. One good eye has to add to the frustration.

We just have to accept the things we cannot change dear heart and it's so hard to do.

I am sending you warm Mama Sher hugs!

I love you and thanks for staying in touch with us.

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

Hey Dear Friends. Please help me today

Last night I had an awful time going to bed. Earl started me on the Zithromyacin (TRI=PAK) that pulmo gave me a while back because 2 days ago I have been spitting up phlem (no blood or color),just phlem in clumps, I am in no pain, but I was so weak last night, Earl helped me into bed. Gave me .5mg xanax to calm me down, 1 tri-pak pill, and he was thinking I might be starting an infection somewhere. I know he did the right thing. Well I slept pretty good I guess. I have the patch over my left eye as otherwise I can not see right. Please excuse any errors. Before he left for work, (he had to make his own lunch, I couldn't do anything except sit this morning, don't know what's going on). I called my PCP and Martha is the drs. nurse, they know me very well. She told me I had an Echocardiogram just before my big lower back surgery on June 26, 2006. That was the date of the surgery. So I was approved by Henrico Doctors Hosp. for the major surgery which went well and no problems since. Thank God. Anyhow, o gosh, wait a min, I have to think. I talked to Martha about going off the Crestor because of the muscle weakness and she said Earl and I both did the right thing, and also about starting the TRI-PAK last night. I am so scared and I am not in any pain, Thank you God. You friends here right now I need a hug from you and you have helped me so much. I have been wearing my oximeter all last night before bed, not good at all, in low 70's and mid 80's. Also this morning and now too. It fluctuates from 95 when I am totally still like right now down to 85 and below (and my oximeter is same as pulmo's) when I get up to go across the hall to bathroom (TRI-PAK) causing that, ha, not funny, it drops immediately to 71. Takes a few minutes to come back up, maybe 2 minutes. That's a long time for me when you are waiting to breathe right.I have an awful headache today, should I go ahead and take a 2 tylenol on top of the tri-pak?My left eye is hurting some but don't forget, I had surgery on 23rd of Dec. Eye looks good and clear and doing the drops all like I should be.I talked to Martha about PH, and told her there was a new medicine like Bruce said, tracleer and revatio. She is going to talk to my PCP about it. They will fax the info to my pulmo about the results of the echo in 2006. It just seems these past 2 wks that something really wierd is going on, I can not control this terrible disease that now has me by the throat and won't let go. No matter what I do or don't do, I can not sit all day long, sit sit sit. Not right.I'm sorry. LOu

January 12, 2009

Lou

You must have an echocardiogram. Plain, Simple....must. You also really

need if there is anyway possible to see a new pulmonologist who can

answer your questions and has knowledge about the disease. Just because

he comes by your house doesn't mean his advice is on target. You need an

overnight oximeter recording as well. You really need help understanding

what is going on. You can't be dropping to 71 oxygen saturation. Get to

a new doctor. Please.

>

> Oh ML, please don't apologize for where you are or what you write. We

care and feel helpless we can't do more.

> I'm going to leave the O2 (med) suggestions to those who know more

about it. I'm on 2L and have no experience w/what troubles you...

> I do know how hard it has been and still is for you to cope with doing

less and less. One good eye has to add to the frustration.

> We just have to accept the things we cannot change dear heart and it's

so hard to do.

> I am sending you warm Mama Sher hugs!

> I love you and thanks for staying in touch with us.

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

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

>

> Hey Dear Friends. Please help me today

>

> Last night I had an awful time going to bed. Earl started me on the

> Zithromyacin (TRI=PAK) that pulmo gave me a while back because 2

days

> ago I have been spitting up phlem (no blood or color),just phlem in

> clumps, I am in no pain, but I was so weak last night, Earl helped

me

> into bed. Gave me .5mg xanax to calm me down, 1 tri-pak pill, and he

> was thinking I might be starting an infection somewhere. I know he

> did the right thing. Well I slept pretty good I guess. I have the

> patch over my left eye as otherwise I can not see right. Please

> excuse any errors. Before he left for work, (he had to make his own

> lunch, I couldn't do anything except sit this morning, don't know

> what's going on). I called my PCP and Martha is the drs. nurse, they

> know me very well. She told me I had an Echocardiogram just before

> my big lower back surgery on June 26, 2006. That was the date of the

> surgery. So I was approved by Henrico Doctors Hosp. for the major

> surgery which went well and no problems since. Thank God. Anyhow, o

> gosh, wait a min, I have to think. I talked to Martha about going

> off the Crestor because of the muscle weakness and she said Earl and

> I both did the right thing, and also about starting the TRI-PAK last

> night. I am so scared and I am not in any pain, Thank you God. You

> friends here right now I need a hug from you and you have helped me

> so much.

>

> I have been wearing my oximeter all last night before bed, not good

> at all, in low 70's and mid 80's. Also this morning and now too. It

> fluctuates from 95 when I am totally still like right now down to 85

> and below (and my oximeter is same as pulmo's) when I get up to go

> across the hall to bathroom (TRI-PAK) causing that, ha, not funny,

it

> drops immediately to 71. Takes a few minutes to come back up, maybe

> 2 minutes. That's a long time for me when you are waiting to breathe

> right.

>

> I have an awful headache today, should I go ahead and take a 2

> tylenol on top of the tri-pak?

>

> My left eye is hurting some but don't forget, I had surgery on 23rd

> of Dec. Eye looks good and clear and doing the drops all like I

> should be.

>

> I talked to Martha about PH, and told her there was a new medicine

> like Bruce said, tracleer and revatio. She is going to talk to my

> PCP about it. They will fax the info to my pulmo about the results

> of the echo in 2006. It just seems these past 2 wks that something

> really wierd is going on, I can not control this terrible disease

> that now has me by the throat and won't let go. No matter what I do

> or don't do, I can not sit all day long, sit sit sit. Not right.

>

> I'm sorry.

> LOu

>

January 12, 2009

Lou

You don't make a decision on PH based on faxing information on a June

2006 Echocardiogram. Just the fact we see Tracleer and Revatio referred

to as new medications is wrong. There is nothing new about them.

Tracleer was approved in 2001 and Revatio in June 2005.

Please get to someone knowledgeable about PF.

>

> Last night I had an awful time going to bed. Earl started me on the

> Zithromyacin (TRI=PAK) that pulmo gave me a while back because 2 days

> ago I have been spitting up phlem (no blood or color),just phlem in

> clumps, I am in no pain, but I was so weak last night, Earl helped me