Guest guest Posted January 17, 2006 Report Share Posted January 17, 2006 on 1/17/06 5:29 PM, dianequinlan@... at dianequinlan@... wrote: I am new to this group....I am 54 and have been on oxygen for over a year. I have a severe curvature of the spine and have been somewhat short of breath for years....never smoked....but when my shortness of breath got worse, I went for testing and was diagnosed with pulmonary fibrosis...I was seeing a pulmonologist at a lung center who told me that although I had pulmonary fibrosis, it was not the main problem and was stable....recently, I went for a second opinion and this pulmonologist says that I have PF, probably idiopathic. He sent me for another PFT and CT scan. I get really winded just doing the least little thing. I will go back to the physician who ordered more tests in about a week...I'm really terrified about everything I read about IPF....doesn't seem to be anything that can be done...my doctor talked about prednisone as an option....and another drug that is $50,000 a year....he said he does have a patient on it that is paid by their insurance So, I decided to join this group and see if I can learn more...I was a pediatric nurse for 25 years before this and took care of many children with cystic fibrosis....but I never heard about PF until I was diagnosed. -- Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hi Diane I'm sorry to read about your diagnosis, all of us in the Breath Support Group have had a similar diagnosis and are at varying stages of the disease. It is terrifying to read about and to contemplate, but with time you do learn to accept what is and try to make the most of it. We've been given a chance to put our lives in order and make our peace with God and family. Most people don't get that opportunity. I'm working with a Pulmonary Specialist at Mass General in Boston. She has advised me not to go on Prednisone, it has terrible side affects and tests have shown it has very little value for IPF. She has prescribed N-Acetyl Cysteine (NAC) an over the counter product that has been approved by the AMA and works to loosen the mucus build up in the lungs and is also a good antitoxin. She has also prescribed Advair (a prescription inhaler). I was on Actimmune, (which is the Interferon gamma-1b that is currently being tested for IPF) that is the $50,000. medicine you were referring to (Actually, it's closer to $70,000 a year). I was on it for two months (3 shots a week) and found it too debilitating for me and have gotten off of it and feel much better. I made an appeal to my prescription drug company and they approved coverage. The drug didn't work for me, it may well work for others. Let's hope. I hope this note is of some help and that you'll find some comfort in being apart of this group. Tim -- _______________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Thanks for your wonderful thoughts. Actually it is my husband of 25 years that has PF. He is a very strong man, although his numbers are quite low, he rarely uses his oxygen. We were surprised this most recent doctor's visit to find out how serious PF is. He has had it for at least 5 years, slowly getting worse. This past Christmas when we parked in disabled parking we were still feeling like we were taking the space from some one who really needed it. I am glad to have this group, nice to hear about all the new meds, lifestyle changes, and the compassion and understanding of all in the group. People I work with ask about my husband but I don't know what to say. It is hard to explain to people that my husband, who looks perfectly fine, will not get better. People always ask if he was a smoker. I guess they want to think as long as they don't smoke they won't get it. Or perhaps we want to find blame, a reason. Anyhow, thanks again -------------- Original message -------------- Hi Diane I'm sorry to read about your diagnosis, all of us in the Breath Support Group have had a similar diagnosis and are at varying stages of the disease. It is terrifying to read about and to contemplate, but with time you do learn to accept what is and try to make the most of it. We've been given a chance to put our lives in order and make our peace with God and family. Most people don't get that opportunity. I'm working with a Pulmonary Specialist at Mass General in Boston. She has advised me not to go on Prednisone, it has terrible side affects and tests have shown it has very little value for IPF. She has prescribed N-Acetyl Cysteine (NAC) an over the counter product that has been approved by the AMA and works to loosen the mucus build up in the lungs and is also a good antitoxin. She has also prescribed Advair (a prescription inhaler). I was on Actimmune,(which is the Interferon gamma-1b that is currently being tested for IPF) that is the $50,000. medicine you were referring to (Actually, it's closer to $70,000 a year). I was on it for two months (3 shots a week) and found it too debilitating for me and have gotten off of it and feel much better. I made an appeal to my prescription drug company and they approved coverage. The drug didn't work for me, it may well work for others. Let's hope. I hope this note is of some help and that you'll find some comfort in being apart of this group. Tim-- _______________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 - I understand where you are coming from when you say your husband looks good, but is actually very ill....I have this same thing...people look at me and think I'm OK...I think it's hard for people to understand....they tell me "you look great" or "you sound great" Plus, I think it's hard for others to think that I have such a serious problem. It's so hard for me to accept....I don't know that I have. I want to live for a long time...I've been through breast cancer and multiple surgeries...I'm tough and optomistic...so I continue to think that way. Every once in awhile, that feeling creeps back in and terrifies me, but I find something to do that I enjoy and I'm OK. It is nice to have a group to talk to...who understand what it's like to feel this way. --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 Diane, When we park in diabled parking I always limp when people are looking. We have had some very cruel people question our eligibility to park there. My husband won't wear his oxygen in public, but he has walked clear back to the car to sit with it on while we are at the mall. He is so proud. I tell him that if he broke his leg he would use crutches. He has one of those small back pack types, I think it is attractive. You have been through a lot. Remember, my husband has had this a long time and he is still working full time as an electrician. I have assumed a greater amount of the chores, but that just got me in shape. I have noticed some promising advances in regards to treating the symptoms of this disease. The longer we can keep it under control, the more advances in lung transplantation. I am optimistic about my husband's future. Believe me, I am not done with him yet! -------------- Original message -------------- From: dianequinlan@... - I understand where you are coming from when you say your husband looks good, but is actually very ill....I have this same thing...people look at me and think I'm OK...I think it's hard for people to understand....they tell me "you look great" or "you sound great" Plus, I think it's hard for others to think that I have such a serious problem. It's so hard for me to accept....I don't know that I have. I want to live for a long time...I've been through breast cancer and multiple surgeries...I'm tough and optomistic...so I continue to think that way. Every once in awhile, that feeling creeps back in and terrifies me, but I find something to do that I enjoy and I'm OK. It is nice to have a group to talk to...who understand what it's like to feel this way. --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 I don't feel comfortable downloading unknown files. Sorry,.......Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Dear Arlen, Actually, you have a copy of the patient information handbook. I mailed it to you some time ago from our office. That was the document Tim was so kindly trying to share with anyone. If any of you would like a hard copy of the patient information handbook, just send me your address to my personal e-mail address: ls_pulmonaryfibrosis@.... Hope this eases some of the confusion. Leanne Storch Executive Assistant Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60622 P F It takes your breath away Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 , you should tell your husband that it doesn't matter what other people think...plus they are total strangers...who cares about them?? He is only hurting himself by not using the oxygen all the time....this will only cause his heart to work harder and he could develop heart failure. Your body needs a certain level of oxygen all the time....I used to feel self conscious when I started wearing oxygen...but then I figure why should I hide in the house?? If people look at me, I either just look away or...if I'm feeling spunky...I stare back and smile! So, tell him that he should care only about himself and the people who love him!! --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Thanks Diane for your advice. We are going shopping this week end, well actually Saturday. Bruce is going to the hospital on Sunday to have his sleep tested. We mentioned to his Doc that he coughed all night and when he did sleep he snored. I had asked about his fatigue during the day. I think most of it is that he is hiding his illness from his employer. Because of that he does not wear his oxygen at work. I'll let you all know if there is info you all may find useful when he gets his sleep results. By the way, he has to go to this appointment in Seattle during the play-offs. He has to miss the game! Oh well, GO SEAHAWKS! -------------- Original message -------------- From: dianequinlan@... , you should tell your husband that it doesn't matter what other people think...plus they are total strangers...who cares about them?? He is only hurting himself by not using the oxygen all the time....this will only cause his heart to work harder and he could develop heart failure. Your body needs a certain level of oxygen all the time....I used to feel self conscious when I started wearing oxygen...but then I figure why should I hide in the house?? If people look at me, I either just look away or...if I'm feeling spunky...I stare back and smile! So, tell him that he should care only about himself and the people who love him!! --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Here is some advice for you from the voice of experience. I also did not use the oxygen when I should have been. I kept working and ignoring the problem, so now I am in end stage PF, on Hospice, and have CHF often. It comes & goes. Yes, you have to protect the organs. I ended up with enlarged heart, irregular heart beat & this CHF. Good Luck to you. Bee from Ohio Re: Hello everyone! Thanks Diane for your advice. We are going shopping this week end, well actually Saturday. Bruce is going to the hospital on Sunday to have his sleep tested. We mentioned to his Doc that he coughed all night and when he did sleep he snored. I had asked about his fatigue during the day. I think most of it is that he is hiding his illness from his employer. Because of that he does not wear his oxygen at work. I'll let you all know if there is info you all may find useful when he gets his sleep results. By the way, he has to go to this appointment in Seattle during the play-offs. He has to miss the game! Oh well, GO SEAHAWKS! -------------- Original message -------------- From: dianequinlan@... , you should tell your husband that it doesn't matter what other people think...plus they are total strangers...who cares about them?? He is only hurting himself by not using the oxygen all the time....this will only cause his heart to work harder and he could develop heart failure. Your body needs a certain level of oxygen all the time....I used to feel self conscious when I started wearing oxygen...but then I figure why should I hide in the house?? If people look at me, I either just look away or...if I'm feeling spunky...I stare back and smile! So, tell him that he should care only about himself and the people who love him!! --Diane Quinlan dianequinlan@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 I've been a nurse for most of my life...when the doctor told me I had to wear oxygen, I did...they told me I didn't need it at night, but then I had a sleep test done which showed I have some apnea, but my oxygen level goes down. So, it's 24/7 for me, too. I never thought about taking it off because it's inconvenient. For those of you who do, think about this for a moment...all the organs in your body work within a narrow range of parameters....your blood is constantly controlled so that it isn't too acidic or too basic...the pH of your blood is 7.35 - 7.45....if your pH drops down to 7...6.8 (which isn't that far from 7.35) you are in big trouble...and it won't take much more to die. Oxygen is the same way....it is VITAL to sustain life.....and we can't store oxygen away, like we can fat....so we need to have it all the time. That means not for just 10 hours a day, or when you get home from work or only when you are exerting yourself. The body is an amazing machine...it recognises the brain, heart, lungs, and liver as the most important...if you go into shock, that's where the body sends blood to.....when you are that sick, many times your hands and feet are very cold....that's because your body doesn't put the same importance in them as it does for your brain and heart. So, if your doctor told you that you need oxygen, you need it all the time. I think most of us have been living with PF long before we knew what it was.....do you remember that feeling that something just wasn't right? I had myself tested for diabetes (which was normal), because I knew something was wrong and I didn't know what it was. You will probably develop congestive heart failure because your heart has to work harder because it's trying to get the oxygen level up by pumping the heart faster. The heart can only do this for so long. So, please, I beg of you as a nurse and a new friend, get that oxygen on....give it a name....decorate that ugly bag it comes in.....whatever suits your personality..... --Diane Quinlan dianequinlan@... , The o2 needs to be worn mainly when active. I was doing house work then sitting with my o2 to catch my breath.. I decided of all things I didn't need was brain damage to go with IPF.. but really tell your Dad to look around. There are people with O2 every where I go. on 1/20/06 4:05 PM, dianequinlan@... at dianequinlan@... wrote: Quote Link to comment Share on other sites More sharing options...
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