Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Mama Sher trust me i do understand. i am thankful that the doc allowed me to try decreasing the prednisone..Now i know i can't be without it.. We do increase it if i have other symptoms going on. My osteopenia grew up to osteoporosis. My left eye has mild glaucoma.. and the other small issues.. i have a great eye doc who is viligent with looking after me.. So now i can rest assure and with the LORD it is going to be okay. One day at a time... It is sad that we all have to go through these different things. But prednisone is something i realize i can't be without so just take a deep breath and chug along.. all is well.. I am finding out that somethings going on is the scleroderma.. So knowledge is good.. thanks to all that help with this, as i find the docs dont have all the answers. have a great day.. GOD bless. patti, 7'06 ipf, 2'07 Pulm.HTN, raynaud's, scleroderma, etc.. > > > > I've been on Pred. for 7 mos and it helped me a great deal. However, > > my MD did mention that I was the exception rather then the rule. The > > side affects are pretty rough, swelling, abdominal cramps, weight gain > > etc. So, I would check into it first before refusing it. I had > > experienced some of the side affects, not all but it is tough to take. > > > > Jim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hi folks, I've been on prednisone since 1999. I get bone density test every 2 years, liver tests monthly, and about 1500-3000 mg calcium with vitamin D. Weight fluctuates but not badly. Tried to wean me off of the prednisone and I went into a terrible lupus exacerbation. Because of the liver problems and lupus have to stay on 5mg unless hospitalized and solumedrol is then administered by IV. So far no real bad side effects. Thank God for that. All faith, no fear! ette SLE 99, TTP 99, PF noted 99, MI 01, MS 04, AH/PBC 04, PF & PH 06, Spinal Stenosis C, T & L 08, Hypersomnia 09, Anemia 09... Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 ette i really don't think i know you, but am amazed by your huge bowl of alphabet soup after your name, and of course some of them i don't recognize at all but glad the low dose of prednisone works for you stay as well as you can Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: peggyTo: Breathe-Support Date: Tuesday, June 9, 2009, 10:05 AM Hi folks,I've been on prednisone since 1999. I get bone density test every 2 years, liver tests monthly, and about 1500-3000 mg calcium with vitamin D. Weight fluctuates but not badly.Tried to wean me off of the prednisone and I went into a terrible lupus exacerbation. Because of the liver problems and lupus have to stay on 5mg unless hospitalized and solumedrol is then administered by IV.So far no real bad side effects. Thank God for that.All faith, no fear!ette SLE 99, TTP 99, PF noted 99, MI 01, MS 04, AH/PBC 04, PF & PH 06, Spinal Stenosis C, T & L 08, Hypersomnia 09, Anemia 09...Sent from my Verizon Wireless BlackBerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Gosh Patti... I'm just so sorry you have all these things to cope with! Most of the board deals with more than I do... I'm very lucky. I'm getting more and more anxious to get to the UWMC for a complete eval... all docs confirm PF but apparently, after 3 plus years, it's a very slow progressing strain. I'd like to know WHAT it is, not only for me but to share the info w/ others who may be like me and not have the eval at a training hospital. I seem to remember MB mentioning that NSIP is slow...but I may not be remembering info. correctly. Enjoy you day! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: peggy Mama Shertrust me i do understand. i am thankful that the doc allowed me to try decreasing the prednisone..Now i know i can't be without it.. We do increase it if i have other symptoms going on. My osteopenia grew up to osteoporosis. My left eye has mild glaucoma.. and the other small issues.. i have a great eye doc who is viligent with looking after me.. So now i can rest assure and with the LORD it is going to be okay. One day at a time... It is sad that we all have to go through these different things. But prednisone is something i realize i can't be without so just take a deep breath and chug along.. all is well.. I am finding out that somethings going on is the scleroderma.. So knowledge is good.. thanks to all that help with this, as i find the docs dont have all the answers. have a great day.. GOD bless. patti, 7'06 ipf, 2'07 Pulm.HTN, raynaud's, scleroderma, etc.. > >> > I've been on Pred. for 7 mos and it helped me a great deal. However, > > my MD did mention that I was the exception rather then the rule. The > > side affects are pretty rough, swelling, abdominal cramps, weight gain > > etc. So, I would check into it first before refusing it. I had > > experienced some of the side affects, not all but it is tough to take.> > > > Jim> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Thank you things just keep piling.. me i am okay it is the doc at temple... good grief.. i love the font you are using.. Can't wait for your info.. i do go to a training hospital, but ....... Have a great night.. finishing up at the office.. see i work really hard.. lol.. am lucky and blessed... patti -- In Breathe-Support , " Sher Bauman " wrote: > > Gosh Patti... I'm just so sorry you have all these things to cope with! > Most of the board deals with more than I do... I'm very lucky. > I'm getting more and more anxious to get to the UWMC for a complete eval... all docs confirm PF but apparently, after 3 plus years, it's a very slow progressing strain. I'd like to know WHAT it is, not only for me but to share the info w/ others who may be like me and not have the eval at a training hospital. > I seem to remember MB mentioning that NSIP is slow...but I may not be remembering info. correctly. > Enjoy you day! > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Re: peggy > > > > > > Mama Sher > trust me i do understand. i am thankful that the doc allowed me to try decreasing the prednisone..Now i know i can't be without it.. We do increase it if i have other symptoms going on. My osteopenia grew up to osteoporosis. My left eye has mild glaucoma.. and the other small issues.. i have a great eye doc who is viligent with looking after me.. So now i can rest assure and with the LORD it is going to be okay. One day at a time... It is sad that we all have to go through these different things. But prednisone is something i realize i can't be without so just take a deep breath and chug along.. all is well.. I am finding out that somethings going on is the scleroderma.. So knowledge is good.. thanks to all that help with this, as i find the docs dont have all the answers. have a great day.. GOD bless. patti, 7'06 ipf, 2'07 Pulm.HTN, raynaud's, scleroderma, etc.. > > > > > > > > I've been on Pred. for 7 mos and it helped me a great deal. However, > > > my MD did mention that I was the exception rather then the rule. The > > > side affects are pretty rough, swelling, abdominal cramps, weight gain > > > etc. So, I would check into it first before refusing it. I had > > > experienced some of the side affects, not all but it is tough to take. > > > > > > Jim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Thanks Barb, I am always here lurking a lot anymore. lol Seems like there are so many newbies that are gettingall the information they need so I read and watch how it changes flavors. Seems the more things change the more they are the same.. lol My daughter sent me some pictures from her phone today and there is such a good one of you, BethLeanne, Jane and me. I can't separate them but she is going to send them individually then I'll post it.. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Miz Peggy: Glad to hear from you. I wuz worried 'bout ya! B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 mary beth i have lincare the 3 times that i wnt down the shore this summer, lincare supplied me with a concentratror for Jill's apt., and as many c tanks as i asked for at home, they give me liquid o2, but for a weekend down the shore they send c tanks the c tanks are heavy, compared to the marathon jerry carried them on the beach for me or we used the baby's wagon with jerry pulling the wagon Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: PeggyTo: Breathe-Support Date: Monday, August 10, 2009, 7:31 AM Peggy, I actually heard from Wally while I was in Virginia. He's fine and so is Corbin...no worries there. I did use those tanks all week. They were really heavy but as long as they were in the cart it was ok. I definitely noticed the difference in weight while pulling them. The thing that really irritated me was the fact that we couldn't open them. We even broke one of those little plastic tools trying and we could not open ANY of the 8 of them. Once opened them with a wrench from his workshop at his house, he closed them by hand. After that we were fine. It was really aggravating to say the least. I think the time has come for me to make the switch to either Lincare or Apria. This would not have happened with one of them. As much as I like the people at my little regional company here in Durham, the options they offer are somewhat limited and anything I want when I travel is on my dime now that I have Medicare. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, August 9, 2009 10:33:28 PMSubject: Re: I'm really back / 02 tanksOh MB, That is just horrible. How on earth did they expect you to even open them?? IDIOTS.. So you had to use them the whole time ? I am so happy you had such a memory building week. And next year I think a month is VERY doable. So glad to see you back here where you belong.. the kids have been restless. LOL nothing from Wally for a while.. hummmm... Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Well as much as I'd rather be back on the beach I am right here in my living room in Durham. Today I took Matt and to Greensboro to get the bus back to Boone. They were laden with their luggage, souveniers, a cooler and their bicycles.... It was comical watching them make their way towards the bus terminal. We had a really wonderful week. We had rain twice, both times in the evening which was perfect. Other than that the weather was hot and sunny....just what you want in a beach week. Cape is a historic little town on the southernmost end of the Delmarva peninsula. Very very quiet and very very peaceful. We arrived their last Saturday. I had brought my own concentrator and 6 E tanks. I had arranged with my local provider to have a provider in the Cape area deliver 8 additional E tanks to me on Monday August 3. Now because I am with a regional provider (as opposed to a national provider like Apria or Lincare) I knew I was going to have to pay for the tank delivery in Cape since Medicare will only pay one provider at a time. What did surprise me was that the charge for these E tanks was $20.50 each. That's approximately twice what my local provider charges for them. Outrageous to say the least but it was my vacation and I had no choice but to pay it. It turns out that this provider charges vacationers more than their regular customers. Long story short I paid the money and the tanks were delivered first thing Monday morning. The delivery guy could not have been nicer, introduced himself, we chatted about the town. He told me where he lived.... about 4 blocks away, was the music minister at one of the churches in town....really nice guy. He proceeds to bring the tanks in. The tanks were E tanks but instead of green on top and then metal on the bottom these were painted green all over. They were clearly labeled oxygen though so I didn't think too much of it. So the guy leaves and we go about our day. A couple of hours later I attempt to lift one of the tanks so that I can attach my conserver. I could just barely lift it.....surprised I tried another one....very very heavy about twice as heavy as a normal E tank. My son and I examined it and came to the conclusion that it was IRON. Iron!!! Are you freaking kidding me? You supply a disabled person with IRON oxygen tanks??!!! But wait, it gets better. My son lifted it and put it in my cart and I went to attach the conserver... .could not open the tank. I tried, my son tried, tried. It would not budge. We tried every tank he had delivered. We could not open any of them. How insane is that? My son says, 'we should go to his house and tell him to open them'. Brilliant. had mentioned he was having lunch at home and by this time it was noon. So I hooked up one of my tanks that I brought from home, my son hoisted one of the iron tanks on his shoulder and off we went. I knocked on the door and opened it and the look on his face was priceless. Complete bewilderment. I explained what the issue was and to his credit he was both horrified and embarrassed. He came right over and used a heavy duty wrench to open the tanks and at that he struggled. I questioned the iron tanks and he said, 'yeah they're old but that's what we use. most of our customers aren't really very ambulatory'. So the rest of the week was uneventful from an oxygen point of view. We had a great time, I walked, the kids rode bikes, we fished, caught crabs, ate lots of seafood, got lots of sunshine. We swam, played scrabble, cards and watched movies in the evening. We shared one bathroom without killing each other (if anything is a miracle that is LOL) It was just a really wonderful week and my next goal is to be able to do it again next year but next year I want to rent a house for a month! I can dream can't I? Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Peggy: So glad to see you back on board, but sorry you are going through a rough patch. I'm sure it is a relief not to do PFTs anymore! Rest, rest, rest! B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 To: Breathe-Support Sent: Thursday, August 27, 2009 7:39:21 AMSubject: Peggy Peggy, I'm glad you got that over with. It sounds like it was an exceptionally long day. I'm also glad you are going to have an echo. Let's see if any of your sob is due to pulmonary hypertension. Maybe there is something they can do for some of it. The plans that UF have for an ILD dept are very exciting and good for all of us really. When patients have access to specialists and more research and education gets done all of us benefit! Today you should do nothing but rest, rest, rest and I know you will. I have my sister and the kids around this week We are having alot of fun but by Saturday morning I know I will be whooped! Hugs, Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 26, 2009 10:20:16 PMSubject: Hi group, I got back from my Dr. around 7PM sure a long day. I was unable to do the PFT's. I knew I didn't have that kind of air anymore.. The DLCO was just impossible. I have coughed today until I am aching like crazy. But I did it. I am to have an echo ASAP. they will call me with the appointment. You know I am not looking forward to that with my fiber-cystic problem.. Anyhow I am not doing anymore PFT's. YEAHHHH I think. My lungs have all sorts of noises going on. I will get more info when I have the echo. If you want to do some interesting searching google UF Pulmonary Dept. My Drs pic is there ( not a very good one ) lol but they are building the web site. There is a Dr. Ibrahim Faruqi, M.D., MPH. He is starting a IPF clinic at UF. Dr Antony is very excited about it . He is already working on it. They will have a full clinic with support group and every kind of a Dr. IPF patients may need. Sounds amazing. I am to tired to think straight right now so if I think of anything else---later. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 "Hard heart" is not a medical term that I'm aware of. What are we talking about? Was someone told this by a doctor? Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, September 13, 2009 3:23:13 PMSubject: Re: Update from Jewish MB, Nurse ... what does a hard heart mean ?? Any idea. 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." Joyce, Congratulations! ! I'm so happy to hear you are stable and that it's safe to reduce your oxygen. That's such positive news!! Sounds like you had a great trip though 80mph going up mountains sounds a little scary to me...LOL Oh and I wouldn't worry about 10 feet less on the 6 minute walk. All that means is you were walking a teeny bit more slowly. It's not a big enough difference to get excited about. So keep doing what you're doing cause it's working! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support <Breathe-Support@ yahoogroups. com>Sent: Sunday, September 13, 2009 12:09:28 PMSubject: Update from Jewish It was a good journey. The car was stupendous and got 48 mpg going 80 mph up tremendous mountains! Stopped at the painted desert and the petrified forest on the way home and the painted desert was breath taking! The petrified forest was a bust. You can see more petrified wood at the vendors surrounding the park. Jewish was wonderful as usual. Dr. Cosgrove said there was no change. All my tests were the same and he considered that good news. He told me that my biopsy showed I did have permanent scarring and there were indications that even though it was the birds that caused it that it might continue but the fact that it had stopped right now was a positive. He also told me if I had kept the birds for a year longer there would be no reversing it and it might as well be IPF so I guess I am very lucky that I went to Jewish and didn't pay attention to my pulmodude hear in Prescott. The only change was the 6 minute walk. I did 10 feet less but my 02 didn't drop as far. 6 months ago my 02 dropped to 92 using 4lpm and this time it dropped to 95 using 4lpm. He said I could drop my 02 to 3 instead of 4 lpm. He is hoping that eventually just sitting around I won't need oxygen at all and only need it when I get up and go out. This, is good news! I am glad I am home. I got home on Friday evening and yesterday all I did was sleep. I slept and slept and slept. I never realized I was so tired. Joyce Rudy AZ birds Quote Link to comment Share on other sites More sharing options...
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