Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Diane, I have managed care insurance and THEY pick my provider for me. Joyce >> It's funny that you should mention Apria....before I became disabled, I worked as a pediatric nurse in home care....I worked near Philadelphia....I took care of some kids who needed IV antibiotics or some other treatment from us...but they had Apria for respiratory equipment...like ventilators and oxygen. I thought they were a terrible company....they had bad patient education....weren't available when patients needed them....I felt really bad for the patients. I told them when they complained about Apria that they had a right to choose another company if they weren't happy. Honestly, I'm surprised that they are still in business!> I have Neighbor Care....I picked them because I worked with them when I took care of home care patients....it was a little rocky in the beginning, but they did fix the problems I was having....they are responsive and the people who deliver my oxygen are very nice. > There are a lot of home care companies out there....but it seems like some of them just have medical equipment and just deliver it and then leave. > What companies are you guys using? This is a great place to talk about who we like and who we don't.> > --> Diane Quinlan > dianequinlan@... > > > Joyce,> You don't by any chance use Apria do you? We've> been having the same sort of problems.> Chris> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 It comes in spray gel or tube and can be pruchases at Wallgreens, Wal Mart and I am sure many other drug stores. AYR Nasal Gel > > I purchased the Nasal Ayr and LOVE it!! Got it online. It worked so well... > > -- > Diane Quinlan > dianequinlan@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Barb, I think it has to do with how EXTENSIVE the honeycombing is. Anyone else know? Joyce > > > > > The suppliers that I have> > > had are not> > > helpful. I have dug for every piece of information.> > > When I first went> > > on oxygen they gave me that big E tank to take when> > > I went out. Well,> > > that thing is real easy... NOT.. to drag around when> > > you are too weak to> > > spit. It has been like pulling teeth to get info or> > > help. Every time I> > > call they have a new person working. I either get no> > > information or> > > wrong information. So, you just have to be a pest> > > and keep seeking> > > information. I am still finding out info right here> > > on this site and I> > > have been at this for six years.> > > > > > Be strong!> > > > > > Joyce> > > > > > > > > > > > > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Barb, The biopsy pathology reports say that the findings are compatible with systemic lupus or connective tissue disease. This was already a long term illness. Because I did not tolerate approved drugs to suppress my immune system and counteract the disease, the Rheumatologist prescribed Cellcept. It is an organ transplant rejection drug. It is not FDA approved for autoimmune disease. But docs are using it and it worked for me. (I had periods when my lung disease would remain stable. Then a couple of episodes of infection and pneumonia which worsened it.) My insurance is now telling me that they will no longer approve this drug after 6 years. I am appealing this decision and will fight. We will see. God is in control. Whatever decision is made it will be to his glory. If you get to come to Louisville to see the doctors at Jewish Hospital, you will get Good Advice. I will be interested then, to hear from you because my insurance denied my seeing them. As you can tell, I am real pleased with our insurance plan. Hope to you, Joyce > > > > > The suppliers that I have> > > had are not> > > helpful. I have dug for every piece of information.> > > When I first went> > > on oxygen they gave me that big E tank to take when> > > I went out. Well,> > > that thing is real easy... NOT.. to drag around when> > > you are too weak to> > > spit. It has been like pulling teeth to get info or> > > help. Every time I> > > call they have a new person working. I either get no> > > information or> > > wrong information. So, you just have to be a pest> > > and keep seeking> > > information. I am still finding out info right here> > > on this site and I> > > have been at this for six years.> > > > > > Be strong!> > > > > > Joyce> > > > > > > > > > > > > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Diane, I like the Nasal Ayr better, but I am cheap. I use K-Y Think I will spring for some. My daughter bought it for me a couple of years ago. Can you get it at a drugstore? Hugs, Joyce >> I purchased the Nasal Ayr and LOVE it!! Got it online. It worked so well...> > --> Diane Quinlan > dianequinlan@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Ginger, My Rheumatologist and Pulmanologist got together and decided it was possibly the gram of cytoxin that I am taking monthly. Cytoxin is the one thing that I haven't taken. Because I did not tolerate Immuran or Methotrexate, I think it was surmised that I would not tolerate Cytoxin. I know it is very effective if you can tolerate it. This is great news. Stable is GOOD! You may move on up from that scooter to a Harley soon!!!! Hugs, Joyce>> > > > Sorry, but here I go again, Joyce. How have the Dr's kept your disease from > progressing so fast. I think I just might have to inform my pulmonary dr. > on how to do it. > > Barb> > > > > Just thought I'd share this. My last CT scan 2 weeks ago showed no more > progression at the time. My Rheumatologist and Pulmanologist got together and > decided it was possibly the gram of cytoxin that I am taking monthly. They have > decided to schedule me for another year of treatment. We shall see.> kiss kiss.> ~Ginger~> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Because I did not tolerate Immuran or Methotrexate, I think it was surmised that I would not tolerate Cytoxin. Joyce, They tell me that cytoxin is used in Chemotherapy. I take such a minimal amount, along with some meds to protect the bladder and for nausea. Have had no ill effects at all. I have heard of two others who take it orally. Not sure how that is working for them. When approached with the idea of the cytoxin, I thought what have I got to loose? God bless you and the wonderful support and encouragement you so faithfully show me. kiss kiss ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 When I was diagnosed I had Honeycombing in the bottom of both lungs. I think that is just this nasty disease. Peggy on 3/28/06 11:10 PM, janne5303 at joycedalton29@... wrote: Barb, I think it has to do with how EXTENSIVE the honeycombing is. Anyone else know? Joyce > Barb, > I am 61. Was diagnosed with PF (secondary to Lupus which I have had since age 33) in 1997 at biopsy. I had been coughing horribly and having pleuisy type pain for 8 years by then. The docs have treated Lupus and have kept my fibrosis from moving so fast. However, I am in end stage (honeycombing and developing bronchiectasis, pft's poor). I was on oxygen, then got off for awhile after rehab, but within a year or so I had to go back on 24/7. > These have been good years. I wonder if I would have appreciated these years as much ha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Hey Ginger: What are the meds you take and mg for protecting your bladder and help with nausea. I believe I am going to tell my pulmonary dr. about this. He is wanting me to go on Viagra. Says it will help me breathe better. I have done some research and it has been used in studies. Mountain climbers use it to deal with the altitude change. BarbTongueDancer2U@... wrote: Because I did not tolerate Immuran or Methotrexate, I think it was surmised that I would not tolerate Cytoxin. Joyce, They tell me that cytoxin is used in Chemotherapy. I take such a minimal amount, along with some meds to protect the bladder and for nausea. Have had no ill effects at all. I have heard of two others who take it orally. Not sure how that is working for them. When approached with the idea of the cytoxin, I thought what have I got to loose? God bless you and the wonderful support and encouragement you so faithfully show me. kiss kiss ~Ginger~ Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Barb, I have a cytoxin treatment Friday. I will get the exact correct names of the meds I am given for the nausea and bladder protection. Tell me about the Viagra perscription...how does it help in the breathing and does the insurrance pay for it? kiss kiss ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 You might want to think about calling the insurance company...they won't want to deal with a home care company if they get lots of complaints about them. I don't know....it really bothers me that insurance companies are a for profit organization....why do they need to make a huge profit?? Same with drug companies....do you ever see where these places are located? They have their corporate headquarters on a huge piece of prime real estate....and it cost a fortune to build and maintain them! Why?? They should break even...not make a large profit. If only we could do something to change that!! --Diane Quinlan dianequinlan@... -------------- Original message -------------- Diane, I have managed care insurance and THEY pick my provider for me. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 when were you diagnosed?? Re: Re: O2 problems When I was diagnosed I had Honeycombing in the bottom of both lungs. I think that is just this nasty disease. Peggyon 3/28/06 11:10 PM, janne5303 at joycedalton29@... wrote: Barb, I think it has to do with how EXTENSIVE the honeycombing is. Anyone else know? Joyce > Barb, > I am 61. Was diagnosed with PF (secondary to Lupus which I have had since age 33) in 1997 at biopsy. I had been coughing horribly and having pleuisy type pain for 8 years by then. The docs have treated Lupus and have kept my fibrosis from moving so fast. However, I am in end stage (honeycombing and developing bronchiectasis, pft's poor). I was on oxygen, then got off for awhile after rehab, but within a year or so I had to go back on 24/7. > These have been good years. I wonder if I would have appreciated these years as much ha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 In Sept 2004, I go back to my DR April 5, PFT test, 6 min walk ( HAHAHA that has to be a joke.) I might make three. I can't believe I said that. I used to walk forever and not feel it.. This disease is CRAZY. I'll ask about the honeycombing. God Bless y'all Peggy on 3/29/06 11:19 PM, Kim L Jelen at kimtom@... wrote: when were you diagnosed?? Re: Re: O2 problems When I was diagnosed I had Honeycombing in the bottom of both lungs. I think that is just this nasty disease. Peggy on 3/28/06 11:10 PM, janne5303 at joycedalton29@... wrote: Barb, I think it has to do with how EXTENSIVE the honeycombing is. Anyone else know? Joyce > Barb, > I am 61. Was diagnosed with PF (secondary to Lupus which I have had since age 33) in 1997 at biopsy. I had been coughing horribly and having pleuisy type pain for 8 years by then. The docs have treated Lupus and have kept my fibrosis from moving so fast. However, I am in end stage (honeycombing and developing bronchiectasis, pft's poor). I was on oxygen, then got off for awhile after rehab, but within a year or so I had to go back on 24/7. > These have been good years. I wonder if I would have appreciated these years as much ha Quote Link to comment Share on other sites More sharing options...
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