Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 I have just gotten out of the hospital with my diagnosis. The doctors did not eve ntell me what it was- I have to research it online. Where do I go from here ? I have no health insurance- so family is looking into welfare/medicaide for me- can anyone talk me though their initial days? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 , I have to say, you sound exactly like I did two years ago. I was diagnosed during a hospitalization in June of 06. I was hospitalized on Memorial Day of 06 with O2 sats in the low 70's and in congestive heart failure. I had worked on the Friday before the holiday and by Monday I was in the ICU. I was in the hospital a bit over 2 weeks and had an open lung biopsy while I was there. I was fortunate in many ways. The pulmonologist on call the night I was in the ER was a blessing to me. He was fairly knowledgable and extremely kind and I later found out had an amazing office staff. He also knew his own limitations and referred me to a specialist in interstitial lung disease at Columbia Presbyterian Hospital in NY. I was discharged from the hospital on O2 24/7. I went home to a hospital bed and all kinds of equipment in my home. I felt like I was having an out of body experience. My life was totally out of control and I had no idea what was going on. I was also on high doses of prednisone which though it stablized my disease, it de-stablized my mood, my blood sugar and my reflux. I was a mess for weeks! it was terrifying for me. I was 46 just about to turn 47, a single mother of a 21 year old son. I had a responsible job Though I loathed it, I still wanted to do right by my employer and felt awful that I wasn't at work doing what I felt I should be doing. Gradually over that summer things got better tiny bit by tiny bit. I realized as Peggy is so fond of saying that there was no expiration date tatooed on my bottom, and I stopped fearing dropping dead the next day. I saw the specialist in NY, had more tests, got more information and started to make peace with this. I started pulmonary rehab. That was HUGE!! I can't say enough about what a difference that made and not just physically. It gave me something concrete I could do to take care of myself and improve my overall condition. If no one has mentioned rehab to you, ask about it. Now over two years later, I'm still here. I consider myself very fortunate. I've stayed stable and I'm able to be relatively active within my specific limitations. It's not the life I expected or planned but I'm still here and that's the important thing. I'm here to be a Mom to my son who though he's 23 and lives on his own still needs Mom now and then. I can enjoy being Aunt Mare to my 11 nieces and nephews and a sister to my siblings. And in many ways most importantly be a daughter to my parents. I have no idea what the details of your situation are. It's likely they are at least somewhat different from mine and the course of your illness will be yours alone but we're all in this together. I hope that you find the friendship and support here that I have. This group of people is the best I've ever met anywhere!! If you ever feel like you want to talk on the phone my phone # is listed in the contact list on the group website! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive where do I begin? I have just gotten out of the hospital with my diagnosis. The doctors did not eve ntell me what it was- I have to research it online. Where do I go from here ? I have no health insurance- so family is looking into welfare/medicaide for me- can anyone talk me though their initial days? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 You're so very early that to even try to figure it all out is overwhelming. Just don't panic and understand you have more control over things than you feel right now. We have people here with no insurance getting excellent treatment. We have PF and many of us are enjoying life a great deal. I might be able to guide you a little better if you don't mind sharing a bit more as to how he came up with the diagnosis, who you've been referred to, what you've been told the next step is. You learn, you ask, and then you make informed decisions. > > I have just gotten out of the hospital with my diagnosis. The doctors > did not eve ntell me what it was- I have to research it online. Where > do I go from here ? I have no health insurance- so family is looking > into welfare/medicaide for me- can anyone talk me though their initial > days? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 > > > > I have just gotten out of the hospital with my diagnosis. The doctors > > did not eve ntell me what it was- I have to research it online. Where > > do I go from here ? I have no health insurance- so family is looking > > into welfare/medicaide for me- can anyone talk me though their initial > > days? > > > I might be able to guide you a little better if you don't mind sharing a > bit more as to how he came up with the diagnosis, who you've been > referred to, what you've been told the next step is. You learn, you ask, > and then you make informed decisions. I was diagnosed after several chest xrays, a cat scan, a lung biospy and blood work. My heart was also tested thouroughly,a eccocardiogram, 3 ekgs, and I was montitered for 24 hours in the telemetry ward. I live in Buffalo NY and am under the care of the pulimnary team from St phs. There was no next step- they discharged me, and told me to call " within 1-2 weeks " for a follw up. I have been short of breath for years- I thought I was out of shape, or it was ashma. I went to the ET when I was told my lips were blue. I was maintaining a pulse/ox of 88- 92% on nasal cannula at 4 LPM. They are weaning me off a low dose of streiods started at the hospitaL, AND i HAVE zanax, albuterol treatments to do at home. My life is totally different. I was self employed- I can no longer do that job. My independence is being whittled away- I have family coming to live with me ( I have been on my own for 14 years ). My Boyfriend does not live with me- we have only been dating 18 months. I am on oxygen 24/7.I have not even started medicare paperwork, alothugh a case worker came to see me in the hospital the day after I was admitted. Im scared-and I know I have not even started to let emotions out yet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 I thought I was out of shape and allergies. Most of us had no idea. I had no idea what PF was. I'm going to try not to totally overwhelm you but a few very important points I do want to make. 1-OXYGEN is your friend. I know you think of being on oxygen 24/7 as terrible, but maintaining your saturation levels above 90% at all times is crucial to protecting other organs. If you don't yet have an oximeter, then most of us would advise getting one and we can direct you to some for as little as $65. 2-Control your own medical care and that starts as you've done here with education. Get copies of all tests, all CT's and biopsy reports. Read, understand what you can, ask us, and most importantly ask your doctors. When diagnosed you don't know enough to have questions but next time you see them I'd suggest taking a written list just so I'd cover them all. Did they tell you what form of PF your biopsy indicated or what it showed? I ask because the various forms are quite different. Do you have related diseases like any form of autoimmune disease? 3-It's your life and there will be choices to make. They are yours, not any of ours, not your doctors. There are no absolutes. You'll have to choose whether to take Imuran and Prednisone, whether to try for clinical trials, and whether to try for a transplant. Those are all very personal decisions. 4-There is more help out there than you know. Many here will point you but its there to help you through the period before social security, to help with filing, and to help after. 5-I know all you've heard so far is talk of a terminal disease and death, regardless of what has been said. However, I'm here to tell you as are many others here that life can be good after diagnosis. It's not what we dreamed of. In some ways quite honestly mine is better as I'm focusing on the right things and enjoying whatever time I have. We're all here to support you. We all understand what its like to have this disease even though its different for each of us as is life. We laugh and cry together. We enjoy life and suffer pain together. Mostly we're just here to listen and support. > > > > > > I have just gotten out of the hospital with my diagnosis. The > doctors > > > did not eve ntell me what it was- I have to research it online. > Where > > > do I go from here ? I have no health insurance- so family is > looking > > > into welfare/medicaide for me- can anyone talk me though their > initial > > > days? > > > > > > I might be able to guide you a little better if you don't mind > sharing a > > bit more as to how he came up with the diagnosis, who you've been > > referred to, what you've been told the next step is. You learn, you > ask, > > and then you make informed decisions. > I was diagnosed after several chest xrays, a cat scan, a lung biospy > and blood work. My heart was also tested thouroughly,a > eccocardiogram, 3 ekgs, and I was montitered for 24 hours in the > telemetry ward. I live in Buffalo NY and am under the care of the > pulimnary team from St phs. There was no next step- they > discharged me, and told me to call " within 1-2 weeks " for a follw up. > I have been short of breath for years- I thought I was out of shape, > or it was ashma. I went to the ET when I was told my lips were blue. > I was maintaining a pulse/ox of 88- 92% on nasal cannula at 4 LPM. > They are weaning me off a low dose of streiods started at the > hospitaL, AND i HAVE zanax, albuterol treatments to do at home. > My life is totally different. I was self employed- I can no longer do > that job. My independence is being whittled away- I have family > coming to live with me ( I have been on my own for 14 years ). My > Boyfriend does not live with me- we have only been dating 18 months. > I am on oxygen 24/7.I have not even started medicare paperwork, > alothugh a case worker came to see me in the hospital the day after I > was admitted. Im scared-and I know I have not even started to let > emotions out yet. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 , It's amazing how completely I can empathize with what you're feeling especially in regard to your loss of independence. I am now on Social Security Disability and can no longer work. I no longer live alone. My parents and I moved to Durham NC last December. I put what was left of my savings into the building of our new home. I love my parents dearly but I miss my independence and privacy. This is not the life I thought I would have but when I consider the alternative....well I'd still rather be here than not. It will take time for you to "let your emotions out". There is no right way to do this. You just get through it as best you can and learn gradually what you need to do to take care of yourself! We're here whenever you need us! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Re: where do I begin? > >> > I have just gotten out of the hospital with my diagnosis. The doctors> > did not eve ntell me what it was- I have to research it online. Where> > do I go from here ? I have no health insurance- so family is looking> > into welfare/medicaide for me- can anyone talk me though their initial> > days?> >>I might be able to guide you a little better if you don't mind sharing a> bit more as to how he came up with the diagnosis, who you've been> referred to, what you've been told the next step is. You learn, you ask,> and then you make informed decisions.I was diagnosed after several chest xrays, a cat scan, a lung biospy and blood work. My heart was also tested thouroughly, a eccocardiogram, 3 ekgs, and I was montitered for 24 hours in the telemetry ward. I live in Buffalo NY and am under the care of the pulimnary team from St phs. There was no next step- they discharged me, and told me to call "within 1-2 weeks" for a follw up. I have been short of breath for years- I thought I was out of shape, or it was ashma. I went to the ET when I was told my lips were blue. I was maintaining a pulse/ox of 88- 92% on nasal cannula at 4 LPM. They are weaning me off a low dose of streiods started at the hospitaL, AND i HAVE zanax, albuterol treatments to do at home. My life is totally different. I was self employed- I can no longer do that job. My independence is being whittled away- I have family coming to live with me ( I have been on my own for 14 years ). My Boyfriend does not live with me- we have only been dating 18 months. I am on oxygen 24/7.I have not even started medicare paperwork, alothugh a case worker came to see me in the hospital the day after I was admitted. Im scared-and I know I have not even started to let emotions out yet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Hey Beth, See ya SOON.. Love & Prayers, PeggyFlorida, IPF/UIP"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." ,It's amazing how completely I can empathize with what you're feeling especially in regard to your loss of independence. I am now on Social Security Disability and can no longer work.I no longer live alone. My parents and I moved to Durham NC last December. I put what was left of my savings into the building of our new home. I love my parents dearly but I miss my independence and privacy. This is not the life I thought I would have but when I consider the alternative....well I'd still rather be here than not.It will take time for you to "let your emotions out". There is no right way to do this. You just get through it as best you can and learn gradually what you need to do to take care of yourself!We're here whenever you need us! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Re: where do I begin?> >> > I have just gotten out of the hospital with my diagnosis. The doctors> > did not eve ntell me what it was- I have to research it online. Where> > do I go from here ? I have no health insurance- so family is looking> > into welfare/medicaide for me- can anyone talk me though their initial> > days?> >>I might be able to guide you a little better if you don't mind sharing a> bit more as to how he came up with the diagnosis, who you've been> referred to, what you've been told the next step is. You learn, you ask,> and then you make informed decisions.I was diagnosed after several chest xrays, a cat scan, a lung biospyand blood work. My heart was also tested thouroughly, a eccocardiogram, 3 ekgs, and I was montitered for 24 hours in the telemetry ward. I live in Buffalo NY and am under the care of the pulimnary team from St phs. There was no next step- they discharged me, and told me to call "within 1-2 weeks" for a follw up. I have been short of breath for years- I thought I was out of shape, or it was ashma. I went to the ET when I was told my lips were blue. I was maintaining a pulse/ox of 88- 92% on nasal cannula at 4 LPM. They are weaning me off a low dose of streiods started at the hospitaL, AND i HAVE zanax, albuterol treatments to do at home. My life is totally different. I was self employed- I can no longer do that job. My independence is being whittled away- I have family coming to live with me ( I have been on my own for 14 years ). MyBoyfriend does not live with me- we have only been dating 18 months. I am on oxygen 24/7.I have not even started medicare paperwork, alothugh a case worker came to see me in the hospital the day after I was admitted. Im scared-and I know I have not even started to letemotions out yet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 ... I'm always sad to see a newbie join us but I know you are in the best place you can be to live with this disease. I'm one of the older members (70) and was dx (diagnosed) 3-'06. I was fairly stable until about 2 months ago and had a bit of progression in my IPF. It's not uncommon to have stable periods and then a downslide. NONE of us progress in the same way . I'm sorry you had to find out about this disease online...that's how I found out too. I had no idea what Pulmonary Fibrosis is so of course I went to the web. I gasped so loud my husband, Rich, came running to see what was wrong with me. "My God, I'm going to die" I said to him... I was sure I was going to die in the next week, called my family around and stayed in a daze for weeks. Gradually I calmed down and by then it was time for PFTs (Pulmonary Function Tests). They consist of a 6-min walk, blood work, x-rays, a C-scan and probably something else that slipped my mind... None of it is painful. The breathing tests can be tiring, depending on where you are in your progression. Stay close to the board, gather all information before you make any major decisions, such as a lung-bio and like Peggy says, 'don't panic', you aren't going to die next week. I'll watch for where you live. Glad to see you have family for support. God Bless MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! where do I begin? I have just gotten out of the hospital with my diagnosis. The doctors did not eve ntell me what it was- I have to research it online. Where do I go from here ? I have no health insurance- so family is looking into welfare/medicaide for me- can anyone talk me though their initial days? Quote Link to comment Share on other sites More sharing options...
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