Re: Call from Pulmo at 11:30 this morning

[Guest guest]

hi Bruce and Everyone, Bruce thanks for all your help with your suggestions on the costume for halloween. My sister made a great lizzie borden. kinda scary! thanks also for the info on the respironics muscle trainer. I use it everynight while doing hidden objects game on computer to keep my brain right. I have notice a difference in my deep breathing and when i talk on the phone everyone says i dont gasp for air anymore. having asthma always made me sound as if i was running uphill. Also i do not know if it is the trainer or what but my o2 has increased while my liter flow has gone done from 3l to 2l. thanks again

sharon p ph 2008

Subject: Re: Call from Pulmo at 11:30 this morningTo: Breathe-Support Date: Wednesday, November 5, 2008, 12:35 PM

LouYOU DID IT!!!!!!!!!! !!You got him to listen and made your points and just didn't take no foran answer. He understood you're looking at your oximeter and also thatthe drop to 12.5 was probably not good for you, at least right now.Now, as to the Helios. You've very close to outgrowing it. Puritan also makes the CompanionT1000 which goes to 15 lpm. On liquidyour next step up is it and typically one needs two of those as on eightliters it only gives you a bit over two hours.I know it was a tough day but take pride in standing up and insisting onthe attention and talk you needed. Shouldn't be so hard to get but wehave to force our way sometimes.>> Patience is the word I need to

practice in my brain. It is a word> that none of us like, but I really need it now in my life.>> #1. We had just come home about 10 minutes before he called, he had> called earlier to leave a message that he would call back. He did at> 11:30. OK. When he called I got the phone, had oxy. level on #6,> and I sat down in the chair in the l/room. I told him to wait a> second as I had to cough a bit. He said to me: "I will call back in> a few minutes", I said: OH NO!! It's NOT going to get any better!!!> Then he was quiet. I told him I had just come in from a visit with> my GP, I will explain that as my #2 point. Anyhow, I just flat out> told him "I am living this disease and I just don't feel that anyone> has a right to tell me a limit as to how high my oxygen should be, I> put it where it is comfortable when I need it. I turn it down> faithfully when I don't

need so much, unfortunately #5 is not near> enough for me anymore. I put it on 6 and 7 and sometimes 8 if I am> not getting the SATS I need on 90 or above and to keep my body on> the "safe" side. He said: ok then, put the oxygen as high as you> need it and it will NOT hurt you if your body needs it. If I didn't> need it high and WAS using it high, then there would be a possibility> of "progressive deterioration to the lungs", but if your body is> telling you that you need more, then use it, by all means. He also> noticed (since we talked 10 days ago when he lowered the prednisone> to 12 1/2 mg daily) that my breathing was terrible, he said go back> up to 15mg right away and don't wait, you know now that anything less> than 15 is not at all good for your lungs. He could tell I was> struggling to talk. He talked to me a few minutes longer and wanted> to make sure my

questions were answered. I think I kind of told him> I was so uncomfortable with my oxygen levels. So he was agreeable.>> #2. This morning early, Earl and I went to our Dr.s for fasting> blood work, he has a different one than me in the same office. I> have a wonderful GP (female) fantastic AND beautiful.>> She noticed my breathing was difficult when she checked my lungs and> seemed to think I needed more oxygen. Unfortunately I had the Helios> with me (liq oxy) tank and it was already on #6. So I pressed on.> Then she looked at the blue veins that have arisen on the left side> on my forehead above the eyebrow that arose 2 days ago. I told her I> had been having headaches on the left side of my "numb" head. She> said it was because my body chemicals were changing and also age was> relavent to it, and the meds I am on too. Not to worry. Told her>

about my appt with Eye surg. on 23rd coming up. She was happy to> hear that. Also she game me a higher dose of xanax, before (.025)> and I was taking only half of one of those, so she upped it to a new> xanax prescription to (.5) which she said would help my anxiety with> this disease a lot. My Pulmo said so too that the increase in the> xanax at this point would do me a lot of good. I also asked GP about> the numbness in my legs, feet and thighs at night, and she said it> was probably a lack of enough oxygen to the lower body.>> I laid up on the examinging table and she examined my right breast on> the outside where I told her it hurt, she could not feel any lumps,> but did say she noticed quite a bit of redness there, knowing well it> should be looked at asap. She is making an appt for another> mammogram for me and they will call me.>> Today is

Earl and My 26th Wedding Anniversary so after getting our> Dr. visits in, fasting blood work for cholesterol checks, we finally> went to breakfast together and ate in silence. The coffee was> fantastic Peggy and MB. Face Stuffing time when you go for fasting> blood work.>> So, nuff with the docs. for awhile, I hope. The morning was pretty> thorough but satisfying for me. My GP could not believe it has been> over a year now since I have had the oxy. on 24/7.>> It is a lovely day today, and I voted yesterday, did my civic duty> which I have always done when it comes to voting, then I can't> complain. ha>> My GP noticed I was not my jovial self at all this morning because of> my breathing. She told me not to lose that wonderful part of> yourself, your sense of humor. But with more oxygen on a steady> basis, you should get it back in a

hurry.>> I LOVE YOU THIS DAY> MARY LOU - RICHMOND VA (74)> IPF - 02>

[Guest guest]

Lou, I'll add my atta-girl to the others. I have always known the squeaky wheel gets the oil. The pendant you are referring to is such a pain on the ears and nose. It is like a garden hose. I amsupposed to be using one but it lasted about two min. Keep on keepin on lady.. I'm proud of you. Love & Prayers, PeggyFlorida,  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]

WOW Lou it sounds as though you really managed to 'get it out'...all your pent-up feelings about YOUR reality. It also sounds as if you got thorugh to your Puomo at long last.....GREAT news....now I will hope to hear that you're more comfortable!

One of the best things about a good paRtnership is the freedom to eat in silence....Happy Anniversary!

lotsa,

>> Patience is the word I need to practice in my brain. It is a word > that none of us like, but I really need it now in my life.> > #1. We had just come home about 10 minutes before he called, he had > called earlier to leave a message that he would call back. He did at > 11:30. OK. When he called I got the phone, had oxy. level on #6, > and I sat down in the chair in the l/room. I told him to wait a > second as I had to cough a bit. He said to me: "I will call back in > a few minutes", I said: OH NO!! It's NOT going to get any better!!! > Then he was quiet. I told him I had just come in from a visit with > my GP, I will explain that as my #2 point. Anyhow, I just flat out > told him "I am living this disease and I just don't feel that anyone > has a right to tell me a limit as to how high my oxygen should be, I > put it where it is comfortable when I need it. I turn it down > faithfully when I don't need so much, unfortunately #5 is not near > enough for me anymore. I put it on 6 and 7 and sometimes 8 if I am > not getting the SATS I need on 90 or above and to keep my body on > the "safe" side. He said: ok then, put the oxygen as high as you > need it and it will NOT hurt you if your body needs it. If I didn't > need it high and WAS using it high, then there would be a possibility > of "progressive deterioration to the lungs", but if your body is > telling you that you need more, then use it, by all means. He also > noticed (since we talked 10 days ago when he lowered the prednisone > to 12 1/2 mg daily) that my breathing was terrible, he said go back > up to 15mg right away and don't wait, you know now that anything less > than 15 is not at all good for your lungs. He could tell I was > struggling to talk. He talked to me a few minutes longer and wanted > to make sure my questions were answered. I think I kind of told him > I was so uncomfortable with my oxygen levels. So he was agreeable. > > #2. This morning early, Earl and I went to our Dr.s for fasting > blood work, he has a different one than me in the same office. I > have a wonderful GP (female) fantastic AND beautiful.> > She noticed my breathing was difficult when she checked my lungs and > seemed to think I needed more oxygen. Unfortunately I had the Helios > with me (liq oxy) tank and it was already on #6. So I pressed on. > Then she looked at the blue veins that have arisen on the left side > on my forehead above the eyebrow that arose 2 days ago. I told her I > had been having headaches on the left side of my "numb" head. She > said it was because my body chemicals were changing and also age was > relavent to it, and the meds I am on too. Not to worry. Told her > about my appt with Eye surg. on 23rd coming up. She was happy to > hear that. Also she game me a higher dose of xanax, before (.025) > and I was taking only half of one of those, so she upped it to a new > xanax prescription to (.5) which she said would help my anxiety with > this disease a lot. My Pulmo said so too that the increase in the > xanax at this point would do me a lot of good. I also asked GP about > the numbness in my legs, feet and thighs at night, and she said it > was probably a lack of enough oxygen to the lower body. > > I laid up on the examinging table and she examined my right breast on > the outside where I told her it hurt, she could not feel any lumps, > but did say she noticed quite a bit of redness there, knowing well it > should be looked at asap. She is making an appt for another > mammogram for me and they will call me.> > Today is Earl and My 26th Wedding Anniversary so after getting our > Dr. visits in, fasting blood work for cholesterol checks, we finally > went to breakfast together and ate in silence. The coffee was > fantastic Peggy and MB. Face Stuffing time when you go for fasting > blood work.> > So, nuff with the docs. for awhile, I hope. The morning was pretty > thorough but satisfying for me. My GP could not believe it has been > over a year now since I have had the oxy. on 24/7. > > It is a lovely day today, and I voted yesterday, did my civic duty > which I have always done when it comes to voting, then I can't > complain. ha> > My GP noticed I was not my jovial self at all this morning because of > my breathing. She told me not to lose that wonderful part of > yourself, your sense of humor. But with more oxygen on a steady > basis, you should get it back in a hurry.> > I LOVE YOU THIS DAY> MARY LOU - RICHMOND VA (74)> IPF - 02>