To Sue

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Hi Sue, Welcome to our Board. Sorry you have to join us. Hopefully you'll get the help you need. It's a very compassionate and giving group. I'll answer some of your questions and I'm sure you will get more replies...but here goes. On the weight issue, I've had IPF over five years. I also was quite a bit over weight - probably around 80 lbs. I was told in order to get a lung transplant the weight had to come off. I joined WW and lost roughly 60 lbs. I told myself that it was my life we were talking about. I made the commitment that I was going to do it over the long haul. Everyone has to find something that works for them. Weight Watchers worked for me. I also walk every day for an hour. I think more importantly it's making a commitment to yourself that you are going to do this for you. It isn't an

easy fix. It took over a year for the weight to come off. Start off slow. Slow and steady. So, I did get listed in October 2007 for a single lung transplant. THen, in January when I went for my pfts, I had improved and the pulmonologist felt at this time it would be better for me to be on hold. My quality of life is pretty good. I still work full time at the Pulmonary Fibrosis Foundation. I'm pretty active. So in other words, I need to get "sicker" before they will transplant me. Anyway, whatever you can do to lose the weight is SO important. We want to be as healthy as we can otherwise. I know that some days are difficult. My doc says if you don't move it you lose it and he is right. When I don't walk for a day or two, I find myself sluggish. I'm only sharing this because I fought the weight for a LONG time. When I realized that it was necessary for me to lose the weight in order to live

is when it became imperative. Trust me, it's literally one day at a time. Over the long haul. As Zena says, don't look at it like I have to lost 100 lbs. Break it down into smaller goals. You do feel better. Gastric Bypass has its share of problems. Hopefully you will be able to lose the weight with a good program. As far as the oxygen situation, do you have a national oxygen provider? I have Apria and all I do is call them and let them know that I need oxygen wherever I'm going and they deliver it. They'll deliver a concentrator and tanks. If you are driving somewhere, you would just need to take what you would need for the car ride. It's nice you have the Portable Oxygen Concentrator. Hope this helps. Again, welcome to our group. Leanne uip 1/03 IllinoisSue Dassel

wrote: Hello everyone: I just found this group and I’m hoping to get some answers to questions. I am 62 and was diagnosed in 9/07 with NSIP – a form of pulmonary fibrosis. I ignored my shortness of breath symptoms until I had 2 really bad respiratory infections and then one test led to

another. I had a lung biopsy in Sept. and since that time have become dependent on oxygen—in short I am convinced this biopsy made my condition worse. I am currently on 3 L of O2 sitting and 6 exerting. I am about 100 lbs overweight and I’ve been told that I need to lose weight in order to be eligible for a lung transplant and also losing weight would help my breathing. Having always been overweight to varying degrees all my life, in my wildest dreams, I will never be able to lose that amount of wt. I have been put on Prednisone (20 mg to start and now at 5) and Cellcept, both are immunosuppressants. I was “approved” for a banding procedure or gastric bypass before this diagnosis and that is probably the only way I can lose that amout of weight. My pulmonary doc says to try to lose the wt first and then if that doesn’t work go for the least invasive surgery. Has anyone else faced this? Can someone tell me the logistics of using oxygen on a road trip. If I have to carry enough oxygen E-tanks to get m through a week road trip, not only would I not have enough room for luggage, but we would be a “rolling bomb “if we got in an accident. I can use a portable oxygen concentrator riding in the car, eating or sitting

in a motel room. I still need the 6 liters on exertion and I’m not sure how to get this. Has anyone had experience with this logistical nightmare. Thanks for listening and any help you can give me. Sue

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