Mama-Sher

April 8, 2008

'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH ......deteriorate faster........what sheer utter NONSENSE.....get yourself to a decent Specialist....... PRONTO.......

If our Bugle Boy wasn't on the road right now you'd be getting a REALLY DETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition....BRAIN, HEART....LIVER.....starving these of O2 is what will cause your WHOLE body to deteriorate faster!

OMG I can NOT believe you were advised this!

Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF!

in OZ

in Oz

April 17, 2008

Leanne.... thanks for the words of encouragement. I am glad I bought this oximeter. I don't carry it around in my hand, but when I need to check I'm glad I have it.

Hope you are feeling up to par.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Sher,

Very Proud of you and your getting on the treadmill!! Keep up the good work. Exercise is so important, but sometimes so hard to do especially for the SOB..... Anyone who exercises be sure to check with your doctor if it's ok. We certainly don't want people to be exercising and having their saturation dropping...A very good reason for pulmonary fibrosis patients to have pulse oximeters. The only way I feel safe is knowing where my saturation is at all times when exercising.

Leanne

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April 21, 2008

Mama-Sher, I don't want you to have a lung bio. There are many trials that are ongoing at the present time and surely, they will find some relief for all of us! CT scans are good detectors of scarring, especially if you have an HRCT. Have you had a scan? Kerry did not have a lung bio and she doesn't have to. Judy had a lung TX and she did not have to have one either. I am sure different medical facilities have their own requirements. In the STEP Trial, part of the protoccol is to examine the biopsy slides and I have no idea what they want to look for in connection with the trial. That in addition to HRCT, echo, EKG, lots of blood to give them, PFTs, 6MW(at MY rate of speed) I am going this Friday for all of the above. Except I will be signing for them to get my biopsy slides. (I think they should just keep them, I have taken them there TWICE!)

came home last Thursday because she had a doc appointment on Friday. We made a decision this weekend. is going to move back home. Eddie & I cannot afford to have two households. Her doctor brought this up because I had said it was getting hard for us. is to find a temporary job until she can find a graphic design job. She has a hot prospect in Chattanooga at the Times/Free Press newspaper. My brother is calling someone he knows there and his best friend is calling someone else. Also, his son-in-law is in charge of the design department. has put in applications at two stores in the Outlet Mall at I-75 and has been to the temp agency that helped my niece. She also applied at a hotel next to I-75. 's lease is over at the end of June. We have to pay rent for for May & June. This is going to be tricky because Eddie & I are going to San . Since we are paying rent to the end of the lease, we don't really have to rush and move her back to Dalton. The past weekend has been hard & upsetting. A lot of me wants close around to be with me. But I want her to have a job. Eddie wants to cut back on the hours of his second job because he is absolutely pooped!

My sister's father-in-law finally passed away. Yes, I said finally because he has been so pitiful. Last August, he had a stroke, and put on hospice. He went to the nursing home. He started doing better at the nursing home, taking care of himself somewhat and then he falls out of the bed. At first, he is ok, then they find him unconscious. He's back in the hospital. He rallies around, seeming alert, but then he goes into a coma. The hospital wants him to leave now and he's still living. He goes back to the nursing home last Monday, and he died this morning. The funeral is Wednesday afternoon and that is my exercise day. I really don't want to give up my exercise day because I am going to Emory on Friday. Well, maybe I will. If I don't exercise, I can't stay stable. I will quit agonizing and then it will all work out. The agony that this man went through really got to me. My sister told me that he would cry (while he was in a coma) and then they would give him morphine. It took him a very long time to die.

Tomorrow I have a doctor appointment at my rehab doctor in Chattanooga, Siskin Rehab Hospital.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

April 22, 2008

Jane.....thanks for your post! No worry, this gal ain't havin' no lung bio!! When I was asked to join a trial my first impression was good....until the requirement for the bio. I'm just too old....not that nearly 70 is "so old" but it's too old for ME to have a bio. Life is fairly steady for me right now and I'm not wanting to make waves. I have other chronic health issues that have to be considered as well.

Yes, I've had HRCTs and everything else you mention you are going to have. More than once. Hence my decision not to have a bio. I/Dr. thinks we can tell by my tests what is happening. At least right now. Just like when my dx was changed from IPF to NSIP. By watching tests/scans and having only about a 5% change in about 2 years, IPF didn't appear to be a correct dx. Yes, it's still PF but a different strain, as you know. Also my echo was "normal" but there are some things in the results that bear watching....I will see Dr. soon.

I understand the necessity for to come home AND to have a job. Eddie can only do so much, he's not a machine. I'm sure WANTS a job and then she can be close AND work. It would seem if she is close by...or in the home...she can be so much help for you. Maybe a good "trade off" for now....you can all help each other!

Sad story about your sister's FIL. Crying while in a coma really tugs at the heart!

Hope your appt. goes well today. Keep us posted.

Hugs.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Mama-Sher

Mama-Sher, I don't want you to have a lung bio. There are many trials that are ongoing at the present time and surely, they will find some relief for all of us! CT scans are good detectors of scarring, especially if you have an HRCT. Have you had a scan? Kerry did not have a lung bio and she doesn't have to. Judy had a lung TX and she did not have to have one either. I am sure different medical facilities have their own requirements. In the STEP Trial, part of the protoccol is to examine the biopsy slides and I have no idea what they want to look for in connection with the trial. That in addition to HRCT, echo, EKG, lots of blood to give them, PFTs, 6MW(at MY rate of speed) I am going this Friday for all of the above. Except I will be signing for them to get my biopsy slides. (I think they should just keep them, I have taken them there TWICE!)

came home last Thursday because she had a doc appointment on Friday. We made a decision this weekend. is going to move back home. Eddie & I cannot afford to have two households. Her doctor brought this up because I had said it was getting hard for us. is to find a temporary job until she can find a graphic design job. She has a hot prospect in Chattanooga at the Times/Free Press newspaper. My brother is calling someone he knows there and his best friend is calling someone else. Also, his son-in-law is in charge of the design department. has put in applications at two stores in the Outlet Mall at I-75 and has been to the temp agency that helped my niece. She also applied at a hotel next to I-75. 's lease is over at the end of June. We have to pay rent for for May & June. This is going to be tricky because Eddie & I are going to San . Since we are paying rent to the end of the lease, we don't really have to rush and move her back to Dalton. The past weekend has been hard & upsetting. A lot of me wants close around to be with me. But I want her to have a job. Eddie wants to cut back on the hours of his second job because he is absolutely pooped!

My sister's father-in-law finally passed away. Yes, I said finally because he has been so pitiful. Last August, he had a stroke, and put on hospice. He went to the nursing home. He started doing better at the nursing home, taking care of himself somewhat and then he falls out of the bed. At first, he is ok, then they find him unconscious. He's back in the hospital. He rallies around, seeming alert, but then he goes into a coma. The hospital wants him to leave now and he's still living. He goes back to the nursing home last Monday, and he died this morning. The funeral is Wednesday afternoon and that is my exercise day. I really don't want to give up my exercise day because I am going to Emory on Friday. Well, maybe I will. If I don't exercise, I can't stay stable. I will quit agonizing and then it will all work out. The agony that this man went through really got to me. My sister told me that he would cry (while he was in a coma) and then they would give him morphine. It took him a very long time to die.

Tomorrow I have a doctor appointment at my rehab doctor in Chattanooga, Siskin Rehab Hospital.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

April 22, 2008

Mama-Sher, has given me some new ideas on how to deal with our dileminna in our home. I am going to look into it. I went to see my rehab doctor today. He told me I was doing great and to come back in two months and he would probably prescribe some physical therapy for my left arm which is weaker because of the ARDS I suffered from. Take care. I am taking one day at a time this week. Tomorrow is the funeral, but I have decided that exercise comes first for me so I will visit the funeral home in the morning around 12 noon and then go back home and get ready for my class. I am not going to the funeral at 3:00 so I can finish exercising and teach the 3 year old choir for my sister at 5:30. I don't think she will be up to that. Toodles to you, Mama-Sher,

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Jane.....thanks for your post! No worry, this gal ain't havin' no lung bio!! When I was asked to join a trial my first impression was good....until the requirement for the bio. I'm just too old....not that nearly 70 is "so old" but it's too old for ME to have a bio. Life is fairly steady for me right now and I'm not wanting to make waves. I have other chronic health issues that have to be considered as well.> Yes, I've had HRCTs and everything else you mention you are going to have. More than once. Hence my decision not to have a bio. I/Dr. thinks we can tell by my tests what is happening. At least right now. Just like when my dx was changed from IPF to NSIP. By watching tests/scans and having only about a 5% change in about 2 years, IPF didn't appear to be a correct dx. Yes, it's still PF but a different strain, as you know. Also my echo was "normal" but there are some things in the results that bear watching....I will see Dr. soon.> I understand the necessity for to come home AND to have a job. Eddie can only do so much, he's not a machine. I'm sure WANTS a job and then she can be close AND work. It would seem if she is close by...or in the home...she can be so much help for you. Maybe a good "trade off" for now....you can all help each other!> Sad story about your sister's FIL. Crying while in a coma really tugs at the heart!> Hope your appt. goes well today. Keep us posted.> Hugs.> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> > Mama-Sher> > > > Mama-Sher, I don't want you to have a lung bio. There are many trials that are ongoing at the present time and surely, they will find some relief for all of us! CT scans are good detectors of scarring, especially if you have an HRCT. Have you had a scan? Kerry did not have a lung bio and she doesn't have to. Judy had a lung TX and she did not have to have one either. I am sure different medical facilities have their own requirements. In the STEP Trial, part of the protoccol is to examine the biopsy slides and I have no idea what they want to look for in connection with the trial. That in addition to HRCT, echo, EKG, lots of blood to give them, PFTs, 6MW(at MY rate of speed) I am going this Friday for all of the above. Except I will be signing for them to get my biopsy slides. (I think they should just keep them, I have taken them there TWICE!)> > came home last Thursday because she had a doc appointment on Friday. We made a decision this weekend. is going to move back home. Eddie & I cannot afford to have two households. Her doctor brought this up because I had said it was getting hard for us. is to find a temporary job until she can find a graphic design job. She has a hot prospect in Chattanooga at the Times/Free Press newspaper. My brother is calling someone he knows there and his best friend is calling someone else. Also, his son-in-law is in charge of the design department. has put in applications at two stores in the Outlet Mall at I-75 and has been to the temp agency that helped my niece. She also applied at a hotel next to I-75. 's lease is over at the end of June. We have to pay rent for for May & June. This is going to be tricky because Eddie & I are going to San . Since we are paying rent to the end of the lease, we don't really have to rush and move her back to Dalton. The past weekend has been hard & upsetting. A lot of me wants close around to be with me. But I want her to have a job. Eddie wants to cut back on the hours of his second job because he is absolutely pooped! > > My sister's father-in-law finally passed away. Yes, I said finally because he has been so pitiful. Last August, he had a stroke, and put on hospice. He went to the nursing home. He started doing better at the nursing home, taking care of himself somewhat and then he falls out of the bed. At first, he is ok, then they find him unconscious. He's back in the hospital. He rallies around, seeming alert, but then he goes into a coma. The hospital wants him to leave now and he's still living. He goes back to the nursing home last Monday, and he died this morning. The funeral is Wednesday afternoon and that is my exercise day. I really don't want to give up my exercise day because I am going to Emory on Friday. Well, maybe I will. If I don't exercise, I can't stay stable. I will quit agonizing and then it will all work out. The agony that this man went through really got to me. My sister told me that he would cry (while he was in a coma) and then they would give him morphine. It took him a very long time to die. > > Tomorrow I have a doctor appointment at my rehab doctor in Chattanooga, Siskin Rehab Hospital. > > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

May 22, 2008

Mayleen...thanks for the update on your ILD....I wish I had something I could suggest for you but I don't. With all you know and you find no solutions yet I don't have any thing I can add. My limited knowledge is focused only on IPF.

Your problems sound overwhelming and I'm sorry there seem to be no answers.

Don't give up. There have to be solutions somewhere..............

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

To dragonfly

I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.

I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be rude to you if you are needing us.

I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.

How are you dealing with a disease we CAN help with?

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

May 22, 2008

>

> Mama-Sher,

>

> I first was diagnosed the MCS Nov/2006, In Jan 2007, I was

given celebrex, I had a GI Bleed, I was hospitalized, before the

hospital my lungs were clear, I had 2 scans, In the hospital my

lungs were clear, had 1 scan. Two weeks later I went to the

immunologist who had ordered another scan, then I had ILD in 2

weeks.

>

> My physician, when I told him I had MCS ignored me, he gave

me all the wrong stuff, in the hospital I had to stop the nurses

from giving me latex, I had a reaction to antibiotics, and the worse

was the Surgeon, he was wearing cologne although posted all over my

room, door, and chart, in the OR when they took me down to do the

colonoscopy. I complained because I was having difficulty breathing

they ignored me, I asked for oxygen, they gave me nothing, even

refused me my inhaler, got the wrong sheets, gave me plastic to

breathe threw, the respiratory therapist came in so full of dryer

sheet or detergent scent, I could not breathe. All I have to show

for my visit to the big house is IDL. They also could have possibly

suppressed my damaged immune system even more and when I went back

home got it then. One or the other. Word of caution if your home is

mold infested do not let someone give you steroids. Never. I told my

doctor and he ignored

> me. Last time I went to see him, he wanted to give me more

steroids. I said for what, so I can come back next week with

something new. In 1 month I was on 14 medications and gettign

worse. They could not find what was wrong with me. They did not

want to accept the MCS, now I'm paying for it.

>

> Then I go to the pulmonologist the immunologist sent me

to. He asked me to make a decision about having a biopsy, I

agreeded to have it. Then he finds out aboiut MCS and did want to do

the biopsy. He wanted me to go blow threw plastic I was reactive

to.

>

> Basically I needed a colonoscopy, did not get it because of

MCS, needed biopsy of my lung, did not get it because of MCS. I am

without care because of MCS. If anyone in Florida can find a Doctor

who is not afraid of my MCS maybe I can see someone for the ILD.

Meanwhile I am without care. and I have no Immune system, like many

here.

>

> Have any idea where I go from here ????? I am clueless, so I

am trying to deal with it myself by getting info on oxygen systems,

cannot find anyone like me. Who cannot get care because you have a

double whammy docs do not know what to do. If hey cannot figure it

out, that leaves just me.

>

> Basically I have a disease that interferes with the other. It

is probably the most ironic situation to be in. I do not belong here

nor there. No one like me to get imput from. No doctor to guide

me. What is a person to do?

> I know nothing of IDL I am here for someone to teach me

something. However not about meds because I cannot take that, nor

any other medicine. I need oxygen to save our lives when my ceiling

collapses. And I have to figure this out myself with no Doctor.

> God Bless !!

> dragonflymcs

> Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

>

> To dragonfly

>

> I've been waiting for you to post to us about the disease we have

in common and how you are coping with whatever problems you may be

having or already solved.

> I'd like to hear to hear more about you Mayleen. I'm feeling

overwhelmed with so many other things you post that I don't read all

your posts any longer. I don't want to be rude to you if you are

needing us.

> I know you are dealing with a lot because of your living

conditions and other health problems for which I have no suggestions.

> How are you dealing with a disease we CAN help with?

>

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

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

>

May 22, 2008

--Maykeen ,

there is only one way, you have to find a good doctor, have you

tried all the centres of excellence that Bruce keeps telling us

about? i hope and pray you find one,

love

Geeta

- In Breathe-Support , dragonflymcs

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