Re: March info.

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Sandy, I can't find the info so I will have to ask...HEY GROUP. Does anyone have the information or the March Pow Wow.. ??????? 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."  What are the details on the "pow wow" in Florida in March?   Sandy IPF 3/08, FloridaFrom: Peggy To: Breathe-Support Sent: Monday, January 12, 2009 11:17:02 AMSubject: Re: newly diagnosedVery well said Beth, Just want to add we are having a group pow-wow meeting in Orlando in March.If your interested. Oh I forgot about your animals.. well the information is available if you need it.  ;)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." <1.3050307159>Joyce,The first thing I'd like to say is I am so sorry that you are going through this. It's a nightmare and all of us understand how you feel. The confusion,anger, frustration, fear, it's all very familiar to any of us who have this illness.I'm going to jump in here though you will get other replies as more folks see your post. The very first thing I would suggest is that you purchase an oximeter if you don't already have one. Here's a link to an FDA approved model that is only $65.http://www.portable nebs.com/ choiceoximeter. htmOnce you have it, use it. Monitor your oxygen levels during different activities. Don't let your O2 fall below 90. Below 90 for more than a few minutes is dangerous for many reasons. When cells are deprived of oxygen, they die. Brain cells, heart cells, kidney cells, liver cells etc. Low O2 will shorten your life. When you talk about doing becoming dizzy in aerobics that concerns me. You need to make sure your oxygen level stays up while you are exercising. Exercise is good but safety is paramount. You can go a long way to insuring that safety with an oximeter. It will give you the information you need to keep your oxygen at a safe level. The biopsy is a very difficult question. You've had one with a bronchoscope. That was a biopsy. The trouble is that takes lung tissue from the top of your lung. This type of lung disease almost always starts in the lower lobes of our lungs and that can't be accessed by a bronchoscope. That's why the doctors what you to have a surgical lung biopsy. I had one and if I had it to do over again, I would.  Others feel very differently. It is invasive surgery and can be risky. Mine provided me with information that changed the way I was treated. That's why I see value in having it. We have members who have had it and got no information that was useful and consequently regret having gone through it. We have one member who had a VATS (the type of biopsy you are talking about) recently. He expected to be in the hospital two days and ended up being in the hospital over a week and had some complications.All that said, you can get an awful lot of information from pulmonary function tests, ct scans, echocardiograms etc. It sounds like they are keeping an eye on you pretty well in that regard. Please know that your pulmonologist is being paid by you to perform a service. Part of that service is to give you information. This is not magic!! Don't be intimidated. Show up at your next appointment with a list of questions and don't leave till they are answered. Take someone with you (a family member or friend) who can help keep you on track and provide moral support. The most important thing you can do is take care of yourself. Eat well, get some safe exercise, keep your O2 levels up, get plenty of rest. You are not alone in this. In July of 2006 I stumbled on to this group and it changed my life. You will find some of the best people on the planet in this group. You are not alone, you are not alone, you are not alone. There is no expiration date tatooed on your bottom. You are not going to die next week. Life goes on, it's different but it's still very sweet.  Beth in North CarolinaModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: JOYCE RUDY <greycharlie@ q.com>To: Breathe-Support@ yahoogroups. comSent: Monday, January 12, 2009 10:24:23 AMSubject: Re: newly diagnosedHi Beth, I have asked questions of my pulmonologist but he says he can't answer my questions as to what has caused the scaring or what type I have unless he does a biopsy in which they open up my lungs and look inside with a camera and take larger hunks of my lung. I recently had a bronschopocy and it showed pulmonary fibrosis but no inflamation and no TB. He said it would be lucky if he found anything. I am afraid of the biopsy he wants because it is so intrusive. I would have to be hospitalized for at least 2 days and I have 7 birds and 5 dogs and one of my dogs is diabetic. I cannot be away from home for 2 or more days! Besides, it is scary to think that they cut open your lung! He says he can't do any prognosis without it. I am on oxygen 24/7 since they gave me all sorts of pulmonary tests and it has increased my quality of life tremendously. He didn't really discuss the results of the tests with me. It all seems so magical. I didn't know that they tested for all those things in the pumlonary tests until I read your handbook. He said nothing. In fact when I go in to see him he doesn't say anything. I see him for him to listen to my lungs and ask me afew questions. I see him maybe every 3 months. I am really afraid of having the biopsy done. My friends say I should avoid that at all costs. That it is too dangerous and if I get worse I will just get worse and if not then not. I cannot take steroids and have no inflamation in any case. It is so hard for me to grasp that I may die. I take aerobics twice a week and Aquafit (water aerobics) twice a week. My friends ask me how I can take these things and have a problem. My doctors encourage me to continue. I am active and the oxygen has made it so I can garden and stuff. It is difficult in all my aerobics classes. I often have to stop and wait for the dizziness to pass but when it does I keep going. I am confused as to how you are supposed to conserve energy and at the same time exercise. For instance...Costco is a huge store. Do I ride in the cart to conserve my energy or do I walk thru the store? So far I have chosen to walk thru the store...but, is that right? I am just confused. Anyway, my doctor won't answer any questions because he says he doesn't know anything if I don't take the biopsy. He said the pieces of lung that he gets from the bronschopocy isn't enough to make a diagnoses. So I wonder why he did it? I live in the Mountains of AZ . Prescott AZ and am quite a distance from any university with a medical school. The closest would be in Tuscon and that is a whole days drive for me and I couldn't leave my animals over night. Part of my problem is money. I have so little of it and part is that my friends aren't able to help me with taking care of my dogs and birds if I need to be away over night or in the hosptital. I think they don't want me to have the biopsy and are making it as difficult as possible for me to have it. And, some simply cannot help..too far away. I was diagnoesed first by a Xray and then by a CAT scan and finally by a bronschospocy. Is it really necessary to have the biosey? I mean what can they do to help me even if they find out what is causing it if I cannot take steroids? It is hard to make a decision when you have so little information to make the decision. Joyce  newly diagnosedHi all! My name is Joyce and I am newly diagnosed with Pulmonary Fibrosis. My pulmonologist has not said I am terminal nor has my primary physician. I did ask my PP and she admitted that she had a patient who died of it in 7 years. I don't know what to make of this. She also said that Yes it ends in death. I am on oxygen. I am confused. Should I be concerned? I don't feel like I am going to die. Thank you, Joyce