Re: Re: From office visit to Hospital tour

[Guest guest]

Sharon...I called the 800#, they do not sell retail. Called and left msg w/pulmodude's nurse. Hopefully I will get a response in a day or two.

Mainly I'm trying to find out if I need a script...WITH a script my ins. will probably pay for it even tho' it is not expensive.

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

Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

just let me know because my offer stands and i do not need repayment. I believe that karma is real and we do not need the money.HONESTLY! so if i can help you i will somehow recieve that back. Actually all of Bruces good advice is payment enough. So you just say the word and its on its way. My email to keep your address safe from online is ratina122003@... so please use it if you need to sharon p ph 2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sharon... I kept your email "just in case" but I can pay for the trainer. The problem is finding one. I may NEED to go Ebay just to find one...

We'll see.

I know your feelings about Karma. I feel the same way.

I call it "Bloom where you're planted".

Take care.

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

Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Thank you, Beth. My first degrees were in physical education and education. My scout troop volunteered with PT's and OT's at United Cerebral Palsy during high school and I had several classes in adapted PE and kenisiology in both graduate and undergraduate classes. It was so frustrating to keep telling my doctors the same things over and over and them not connecting it to oxygen deficiency. My best friend was a nurse that died of cancer twenty years ago so I generally respect and trust medical professionals but have really had my eyes opened by this.

I have always been flexible but got short of breath and fatigued running or hiking. I hiked the Apalation Trail but brought up the back of our group, same with hiking on sand dunes in Florida. I see that I am not alone in thinking I was nuts, it was all in my head, I was just lazy... I couldn't breathe! I gravitated to yoga and ti chi. I have never been into speed or competition, I do things for myself, at my own pace, stop when I feel the need and keep going when it feels good. Thanks again for the feed back.

Margaret

To: Breathe-Support Sent: Sunday, January 25, 2009 3:54:56 AMSubject: Re: Re: From office visit to Hospital tour

Margaret,

I'd just advise a teeny bit of caution when embarking on any upper body exercise. I was taught in rehab and have found it to be true that you are likely to become short of breath more quickly because you are asking your upper body muscles to do double duty. Folks like us with lung disease use our upper body muscles to get air in and out because often our diaphragms and intercostal muscles are 'worn out' something that doesn't happen to people without lung disease. When I am doing upper body exercises I just keep that in mind and slow down or stop when my arms get tired or I feel sob.

I also have to say that it's extremely odd that you say that pt's and other medical people had never heard of your large muscles getting tired when you are low on oxygen. I learned that back in high school biology and than it was reiterated in college anatomy and physiolgy classes (I was a nursing major). And after that when I was in pulmonary rehab it was one of the first things I remember being taught. Large muscles (leg, arm, back etc) need large amounts of oxygen to work efficiently. (I need ridiculous amount of O2 to be able to use the treadmill, 12 liters with a venti mask) If you are short on oxygen that's the first place you are going to feel it.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, January 25, 2009 6:13:48 AMSubject: Re: Re: From office visit to Hospital tour

Good Morning,

I have free weights and an elastic resistance band with handles that closes at the top center of a door and is held by a round ball like thing that holds it in place. I found mine at Sears of all places. These come in three different resistant strengths. I need them to replace the movement of the recumbent bike with handle grips that move in opposition to the leg peddling movement. I really need something for my upper body. I also miss the leg press at rehab. That is the main one I go to Planet Fitness for. All of the PT's and every other medical person that I have mentioned it to say that they have never heard of it before but when I start getting low on oxygen before I even feel it in my lungs, I feel it burn in the muscles of my fanny and the backs of my upper legs. It is both sides of my butt but mostly the back of my upper left leg. Go figure... I also do many exercises that do not require equipment. Many of them

are in the book they gave us in rehab. I had a desk job for years and it seems that I have always known about them. They are in magazines and were in the book they gave me for arthritis. You know, the turning your head from side to side, raising your legs, flexing your foot by pointing your toes up and down and rotating your ankle in both directions, reaching across the front of your body grasping your opposite shoulder twisting from the waist and reaching as far behind you as you can. I have a 2x4 about 2 1/2 feet long that I stand on with my toes stretching up and down by raising up on my toes and letting my heels stretch down to touch the floor below the 2x4 I am standing on.

If you would like more specifics, I could look up the reference information. I am perfectly happy to sit in one position for long periods of time. When I do need that flexibility, I realize just how tight I have allowed myself to become. I first noticed how badly I needed the little 2x4 exercise when I was reaching for something on a top shelf in the kitchen and something really popped. It really does help your overall attitude when you do even a little bit of exercise. Just keep moving!

Margaret

From: sharon prendergast <ratina122003@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, January 24, 2009 6:50:48 AMSubject: Re: Re: From office visit to Hospital tour

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > Last Friday night I was woken up with a sharp pain in my > chest> > > > > (upper> > > > > > > right lung.) These same pains went on and off over the> > > weekend so> > > > > I> > > > > > > called the pulmodude Monday. They schduled my appointment > for> > > this> > > > > > > afternoon.> > > > > > >> > > > > > > Yesterday the pulmo's assistant called and changed my> > > appointment> > > > > to> > > > > > > 10a.m. today. So during my visit I tell the dr. > EVERYTHING. I> > > > >

guess I> > > > > > > knew to expect a long day but, WOW!> > > > > > >> > > > > > > He ordered bloodwork, dopler of my legs and chest CT > looking> > > for> > > > > > > blood clots. After a stop at almost every floor of the> > > > > joint...Thank> > > > > > > God there were NO CLOTS. I fooled myself and "thought" I > was> > > > > about to> > > > > > > go home.. WRONG!> > > > > > >> > > > > > > Now he has scheduled me for an overnight sleep study, a > full> > > PFT> > > > > and> > > > > > > for an added treat I got to play with the nurse in the > hall> > > for> > > > > what> >

> > > > > was supposed to be a 6 minute walk. I think the medical> > > community> > > > > > > should consider changing the name of the so called "6 > minute> > > > > walk" to> > > > > > > be more accurate. Maybe change it to "See How Far You Can > Make> > > > > It."> > > > > > > Anyhow, I did the darned test and flunked! I made it down > the> > > > > hallway> > > > > > > only twice and MADE the nurse take my pulse & O2. O2 was > 84> > > and> > > > > pulse> > > > > > > 156.> > > > > > >> > > > > > > Well now the doc has prescribed an increase in O2. From 3 > LPM> > > on> > > > >

> > demand with exertion to 4 LPM continuos with exertion. > Only> > > my at> > > > > > > home concentrator puts out continuous 4LPM. My prize for> > > being a> > > > > good> > > > > > > girl today is new oxygen equipment! I really miss those > cool> > > red> > > > > > > baloons my pediatrician gave when I was a kid that > said "my> > > doctor> > > > > > > loves me."> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Thank you, Beth. My first degrees were in physical education and education. My scout troop volunteered with PT's and OT's at United Cerebral Palsy during high school and I had several classes in adapted PE and kenisiology in both graduate and undergraduate classes. It was so frustrating to keep telling my doctors the same things over and over and them not connecting it to oxygen deficiency. My best friend was a nurse that died of cancer twenty years ago so I generally respect and trust medical professionals but have really had my eyes opened by this.

I have always been flexible but got short of breath and fatigued running or hiking. I hiked the Apalation Trail but brought up the back of our group, same with hiking on sand dunes in Florida. I see that I am not alone in thinking I was nuts, it was all in my head, I was just lazy... I couldn't breathe! I gravitated to yoga and ti chi.

To: Breathe-Support Sent: Sunday, January 25, 2009 3:54:56 AMSubject: Re: Re: From office visit to Hospital tour

Margaret,

I'd just advise a teeny bit of caution when embarking on any upper body exercise. I was taught in rehab and have found it to be true that you are likely to become short of breath more quickly because you are asking your upper body muscles to do double duty. Folks like us with lung disease use our upper body muscles to get air in and out because often our diaphragms and intercostal muscles are 'worn out' something that doesn't happen to people without lung disease. When I am doing upper body exercises I just keep that in mind and slow down or stop when my arms get tired or I feel sob.

I also have to say that it's extremely odd that you say that pt's and other medical people had never heard of your large muscles getting tired when you are low on oxygen. I learned that back in high school biology and than it was reiterated in college anatomy and physiolgy classes (I was a nursing major). And after that when I was in pulmonary rehab it was one of the first things I remember being taught. Large muscles (leg, arm, back etc) need large amounts of oxygen to work efficiently. (I need ridiculous amount of O2 to be able to use the treadmill, 12 liters with a venti mask) If you are short on oxygen that's the first place you are going to feel it.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, January 25, 2009 6:13:48 AMSubject: Re: Re: From office visit to Hospital tour

Good Morning,

I have free weights and an elastic resistance band with handles that closes at the top center of a door and is held by a round ball like thing that holds it in place. I found mine at Sears of all places. These come in three different resistant strengths. I need them to replace the movement of the recumbent bike with handle grips that move in opposition to the leg peddling movement. I really need something for my upper body. I also miss the leg press at rehab. That is the main one I go to Planet Fitness for. All of the PT's and every other medical person that I have mentioned it to say that they have never heard of it before but when I start getting low on oxygen before I even feel it in my lungs, I feel it burn in the muscles of my fanny and the backs of my upper legs. It is both sides of my butt but mostly the back of my upper left leg. Go figure... I also do many exercises that do not require equipment. Many of them

are in the book they gave us in rehab. I had a desk job for years and it seems that I have always known about them. They are in magazines and were in the book they gave me for arthritis. You know, the turning your head from side to side, raising your legs, flexing your foot by pointing your toes up and down and rotating your ankle in both directions, reaching across the front of your body grasping your opposite shoulder twisting from the waist and reaching as far behind you as you can. I have a 2x4 about 2 1/2 feet long that I stand on with my toes stretching up and down by raising up on my toes and letting my heels stretch down to touch the floor below the 2x4 I am standing on.

If you would like more specifics, I could look up the reference information. I am perfectly happy to sit in one position for long periods of time. When I do need that flexibility, I realize just how tight I have allowed myself to become. I first noticed how badly I needed the little 2x4 exercise when I was reaching for something on a top shelf in the kitchen and something really popped. It really does help your overall attitude when you do even a little bit of exercise. Just keep moving!

Margaret

From: sharon prendergast <ratina122003@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, January 24, 2009 6:50:48 AMSubject: Re: Re: From office visit to Hospital tour

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > Last Friday night I was woken up with a sharp pain in my > chest> > > > > (upper> > > > > > > right lung.) These same pains went on and off over the> > > weekend so> > > > > I> > > > > > > called the pulmodude Monday. They schduled my appointment > for> > > this> > > > > > > afternoon.> > > > > > >> > > > > > > Yesterday the pulmo's assistant called and changed my> > > appointment> > > > > to> > > > > > > 10a.m. today. So during my visit I tell the dr. > EVERYTHING. I> > > > >

guess I> > > > > > > knew to expect a long day but, WOW!> > > > > > >> > > > > > > He ordered bloodwork, dopler of my legs and chest CT > looking> > > for> > > > > > > blood clots. After a stop at almost every floor of the> > > > > joint...Thank> > > > > > > God there were NO CLOTS. I fooled myself and "thought" I > was> > > > > about to> > > > > > > go home.. WRONG!> > > > > > >> > > > > > > Now he has scheduled me for an overnight sleep study, a > full> > > PFT> > > > > and> > > > > > > for an added treat I got to play with the nurse in the > hall> > > for> > > > > what> >

> > > > > was supposed to be a 6 minute walk. I think the medical> > > community> > > > > > > should consider changing the name of the so called "6 > minute> > > > > walk" to> > > > > > > be more accurate. Maybe change it to "See How Far You Can > Make> > > > > It."> > > > > > > Anyhow, I did the darned test and flunked! I made it down > the> > > > > hallway> > > > > > > only twice and MADE the nurse take my pulse & O2. O2 was > 84> > > and> > > > > pulse> > > > > > > 156.> > > > > > >> > > > > > > Well now the doc has prescribed an increase in O2. From 3 > LPM> > > on> > > > >

> > demand with exertion to 4 LPM continuos with exertion. > Only> > > my at> > > > > > > home concentrator puts out continuous 4LPM. My prize for> > > being a> > > > > good> > > > > > > girl today is new oxygen equipment! I really miss those > cool> > > red> > > > > > > baloons my pediatrician gave when I was a kid that > said "my> > > doctor> > > > > > > loves me."> > > > > > >> > > > > >> > > > >> > > >> > >> >>