Guest guest Posted July 4, 2009 Report Share Posted July 4, 2009 Welcome Jerry...glad to have you with us. You're in the best place you can be as we fight our mutual disease. I was dx (diagnosed) 3+ years ago and holding fairly stable. Had a bit of progression but nothing drastic. I'm on O2 w/exertion and always at night. Tell us in what State you live, age, married, kids, family to support your illness? Keep coming back, you'll like us. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 I am glad to have found you all. This modern technology is really something. I am really looking forward to getting to know you all more in time. On June 13, 2005, I had a confirming lung biopsy for IPF. From that time to March of 2006, I required oxygen therapy. By March of 2006 I no longer required oxygen therapy. By loosing 50 pounds and exercising each day, I lessoned the load on my heart and lungs, and hopefully I can avoid that problem of an enlarged heart. I have decided that exercising is fine, as long as one gets enough oxygen and has no physical reasons for not exercising. One of my good friends gave me his mountain bike, and soon I decided that I could begin riding again. This October I hope to make 100 miles in the Mississippi MS Bike Ride. Last year I managed to ride 80 miles the first day. I am also considering getting together a fund-raiser for PFF. I walk 6 miles every day, rain or shine, and Dr. Lasky has photos of when I was on oxygen and then on my bike ride last year. I love going down to Tulane and having check-ups. Each time, Dr. Lasky asks me if I remember coming in with that big oxygen tank the first time I saw him July 26, 2005. I had been told by 2 other pulmonologist that I could expect to live probably 2 years. And really, these have been the best 4 years of my life. I have been closer to my wonderful friends and family, and as youu know so well, we never take any day from here on for granted. I hope each of you have had a great 4th celebration. I am here in Vaiden MS for a fea days with Mom and Dad. These old country roads are great for walking. When I get back to Coffeeville, I hope to get to know you all better and catch up on all the many posts I have received through this group. Take care and thanks for the warm welcome. Jerry Who believes that hard times help us appreciate the good times even more. Subject: Re: Thank YouTo: Breathe-Support Date: Saturday, July 4, 2009, 11:15 AM Jerry, Welcome! I'm glad you found the group. I'm also glad that you've done so well over the last 4 years. 80 mile bicycle rides...WOW! that's impressive. How impaired is your lung function? I take it you are not on supplemental oxygen...or are you? I'd love to hear more of your story. Thanks for joining us! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Jerry Brown <jerryb888 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, July 4, 2009 6:58:50 AMSubject: Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 .. I graduated from the Mississippi School F?T Blind in 1972, and then from Mississippi State in 1976 with a degree in business management. After being diagnosed, I retired from work, for at the time, my lung function was lower than now. I have thought about going back to work, and who knows. Mostly I want to stay as well as I can for as long as I can. I have no children, though I am close to my neices and nephews. Mom and Dad are still liveing, and I have 3 brothers and a sister. Besides bicycling, I enjoy gardening and photography. Oh yes, I forgot to mention that I also cane chairs sort of part-time. That seems to be picking up. So good to hear that you are still up and going. Knowing that you are still hanging in there really inspires me, and I know as time goes on, that is what will make the difference with all of us. Have a happy 4th weekend. I am excited about getting to know you all! JerryWho believes that hard times help us appreciate the good times even more. Subject: Re: Thank YouTo: Breathe-Support Date: Saturday, July 4, 2009, 5:22 PM Welcome Jerry...glad to have you with us. You're in the best place you can be as we fight our mutual disease. I was dx (diagnosed) 3+ years ago and holding fairly stable. Had a bit of progression but nothing drastic. I'm on O2 w/exertion and always at night. Tell us in what State you live, age, married, kids, family to support your illness? Keep coming back, you'll like us. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Jerry...what an attitude you have! Wonderful. And it's made even better by the way you are living your life. It's a great idea to have a fund raiser for PFF. You most certainly are a good example for losing weight and exercising. Keep on keepin' on friend... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Jerry, What an awesome story. Keep peddling and breathing deep. You are one of the very blessed members. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. . I graduated from the Mississippi School F?T Blind in 1972, and then from Mississippi State in 1976 with a degree in business management. After being diagnosed, I retired from work, for at the time, my lung function was lower than now. I have thought about going back to work, and who knows. Mostly I want to stay as well as I can for as long as I can. I have no children, though I am close to my neices and nephews. Mom and Dad are still liveing, and I have 3 brothers and a sister. Besides bicycling, I enjoy gardening and photography. Oh yes, I forgot to mention that I also cane chairs sort of part-time. That seems to be picking up. So good to hear that you are still up and going. Knowing that you are still hanging in there really inspires me, and I know as time goes on, that is what will make the difference with all of us. Have a happy 4th weekend. I am excited about getting to know you all! JerryWho believes that hard times help us appreciate the good times even more. From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Thank YouTo: Breathe-Support Date: Saturday, July 4, 2009, 5:22 PM Welcome Jerry...glad to have you with us. You're in the best place you can be as we fight our mutual disease. I was dx (diagnosed) 3+ years ago and holding fairly stable. Had a bit of progression but nothing drastic. I'm on O2 w/exertion and always at night. Tell us in what State you live, age, married, kids, family to support your illness? Keep coming back, you'll like us. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Jerry, You're an inspiration and what a great story to post on this site. Thanks and keep on walking, wheeling and moving. Peggy E. > > > > Subject: Re: Thank You > To: Breathe-Support > Date: Saturday, July 4, 2009, 11:15 AM > > > > > > > > > > > > Jerry, > Welcome! I'm glad you found the group. I'm also glad that you've done so well over the last 4 years. 80 mile bicycle rides...WOW! that's impressive. > How impaired is your lung function? I take it you are not on supplemental oxygen...or are you? I'd love to hear more of your story. > Thanks for joining us! >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > From: Jerry Brown <jerryb888 (AT) yahoo (DOT) com> > To: Breathe-Support@ yahoogroups. com > Sent: Saturday, July 4, 2009 6:58:50 AM > Subject: Thank You > > > > > > > > > I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. >  > Jerry > > Who believes that hard times help us appreciate the good times even more. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 So good of you to say those things Sher. I am right there with you in needing some encouragement some days. That was especially hard just after the biopsy, when I couldn't have dreamed of living as I do now. My goal at first was to be able to go without oxygen therapy while sitting quietly. Although I like walking on these country roads, walking on a treadmill lets me measure my oxygen level and keep track of progress. On a side note, when I was on oxygen therapy, I got many more hugs after church than I do now. I keep looking at that empty tank under my bed and wondering if I should..... JerryWho believes that hard times help us appreciate the good times even more. From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Thank YouTo: Breathe-Support@ yahoogroups. comDate: Saturday, July 4, 2009, 5:22 PM Welcome Jerry...glad to have you with us. You're in the best place you can be as we fight our mutual disease. I was dx (diagnosed) 3+ years ago and holding fairly stable. Had a bit of progression but nothing drastic. I'm on O2 w/exertion and always at night. Tell us in what State you live, age, married, kids, family to support your illness? Keep coming back, you'll like us. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Dear Jerry, What a wonderful and inspiring story your life has been since you have been diagnosed with IPF. I love to see what people write, no matter whether it's a good day or bad, it's been so helpful to me.I lost 75 pounds five years ago. I was only recently diagnosed with IPF, but I'm so thankful now. I still count calories, weigh myself, and WATCH MY SALT intake, because I gain water weight so easily.I googled pulmonary rehab and found the Huff and Puff site that was recommended on this site. My doctor never recommended rehab, but I feel even though I'm not on O2 that I slip and do the opposite of what I'm probably supposed to do, which is breathe in through my mouth instead of my nose. I enjoy bike riding too, but have only gone short distance-probably the most was 15 miles. I need to monitor my pulse while doing different kinds of exercise. I know one day while on the treadmill on room air I was in the mid 90's, the next day I dropped into the high 80's.The thing that scares me the most is shortness of breath and the occasional scattered chest pain-that could be anterior or posterior. The doctor said my heart is fine after an EKG and stress test.I don't think it's the arthritis because it's not an ache, it's sharper and more fleeting than that. Or maybe this is just something that is common with this disease. If you or anyone has experienced this let me know. Welcome to the group,PJ from Ohio Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Dear PJ, As I was traveling over to Vicksburg with Mom and Dad, I realized how much I was missing sitting at a keyboard and chatting with my new-found friends. Well your story is inspiring to me. Loosing weight and sticking to an exercise schedule can be on of the hardest mind sets with which we have to cope. 75 pounds is tremendous, and keeping it off is even more of an accomplishment. Otherwise you might possibly require oxygen therapy now, and who can tell about the condition of your heart and the discomfort of not being able to supply yourself with that oxygen fix we so sorely need. Just from a layperson's point of view, it would seem that an association of more pain and discomfort in conjunction with lower o2 readings would be of some concern. I would be less concerned about there being no apparent cause and effect. Just as a rule of thumb and to stay very cautious, I slow down if O2 readings drop below 90%. I would suppose your doctor has dismissed the idea of asthma or some other logical reasons for your wide range of O2 readings. I say this because my levels are fairly constant from one day to the next, though over time they have gradually increased. By breathing as you mentioned, I can up my readings by as much as 2%.I sometimes forget when I'm walking to ZZ Top:) I need to keep that salt business in mind. Keeping down the likelyhood of pulmonary hypertension is so important to us. If you and your doctor decide that biking is fine, I can tell you that I am a tortus going up hills on purpose: Then I point my nose forward and let the wind blow. I can do that hour after hour by good-sense pacing. Up to a point, my body can compensate for poor lung function. Hang in there. I had a little pep in my step tonight on my walk. JerryWho believes that hard times help us appreciate the good times even more. From: Beth Subject: Re: Thank YouTo: Breathe-Support@ yahoogroups. comDate: Saturday, July 4, 2009, 11:15 AM Jerry, Welcome! I'm glad you found the group. I'm also glad that you've done so well over the last 4 years. 80 mile bicycle rides...WOW! that's impressive. How impaired is your lung function? I take it you are not on supplemental oxygen...or are you? I'd love to hear more of your story. Thanks for joining us! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Jerry Brown To: Breathe-Support@ yahoogroups. comSent: Saturday, July 4, 2009 6:58:50 AMSubject: Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 Sher, that little yellow fellow you added looks a lot like me on a treadmill. I was diagnosed with IPF before my lung biopsy of June 13 2005. I am 54 now living in Mississippi with my sister and husband Sidney. Sometimes I stay with Mom and Dad here in Vaiden. I consider Vicksburg to be my hometown since I worked there at International Paper for 17 years as a food stand operator. I also stay with friends in and Vicksburg. My best friend Flo drives me down to New Orleans to see Dr. Lasky every 4 to 6 months. She and her husband Steve live in Vicksburg, and I have many friends there I try to get out and see. I also love walking in the Vicksburg Military Park, once my favorite biking place. I don't have the wind to climb those tretuous hills like in the olden days. I have walked that 17 miles within the past year. Oh yes, that empty oxygen tank should go back to the folks in Durant where I got it. I overlooked it when I was taking them back 3 years ago. I am ashamed about the tank, but not the hugs:) JerryWho believes that hard times help us appreciate the good times even more. From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Thank YouTo: Breathe-Support@ yahoogroups. comDate: Saturday, July 4, 2009, 5:22 PM Welcome Jerry...glad to have you with us. You're in the best place you can be as we fight our mutual disease. I was dx (diagnosed) 3+ years ago and holding fairly stable. Had a bit of progression but nothing drastic. I'm on O2 w/exertion and always at night. Tell us in what State you live, age, married, kids, family to support your illness? Keep coming back, you'll like us. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2009 Report Share Posted July 7, 2009 Jerry .... I'm glad for you that you have a circle of friends/family that you socialize with. Most of you here in the group are a lot younger than I and I do not socialize like I used to. Once my health issues began to 'take over' I slowly became rather reclusive. Keep on keepin' on... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2009 Report Share Posted July 9, 2009 Sher i didn't know Rich might have heart surgery whenever it happens, i wish him the best and a speedy recovery Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thank YouTo: Breathe-Support Date: Wednesday, July 8, 2009, 1:51 PM Jerry .... I think of our group as a social outlet as well. Just about every topic has crossed the board. As far as the year I was born, no need...my age; 70, is in my signature... as is my home State, OR. I love living in OR., the green trees and clear water...in most places. We are about 25 mi south of Portland, and east of I-5 about 6 mi...Canby. A wonderful little town where every visitor wants to live. A little park in the center of town, even a white gazebo where Sunday concerts are held. It's as great as it sounds. We live close enough that we hear the concerts from home. Flo is obviously a great friend! Or at least curious. lol I'm married, husband Rich, (previous husband killed by a drunk driver).I personally have 3 kids w/kids of their own. 5 grkids and 2 grt/grkids. All live within 35 miles. Rich's two boys live ,one, in Portland, one in PA. I used to be a counselor, never retired just had to stop working...health reasons. I'm a freelance writer and don't do much of that anymore either. So what I was I 'aint' and what I'd like to be I 'caint'...hehehe We are planning on moving in about 30-45 days if all goes well. Puts us literally 5 min from our daughter, Lysa. Can't get much closer unless we move in! As both our health gets worse we need to be closer to her. Rich is probably looking at heart surgery in a few months. Well, there. You asked me what time it is and I told you how to build a watch! lol. Have a good day today. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2009 Report Share Posted July 9, 2009 Pink.... thanks about Rich. His heart has been a problem for some years. About 7 years ago his doc told him he had about 5 years...congestive heart failure. Well, he started exercising and gradually built up to 5 days a week, treadmill and weights and believe it or not doc said after about 3 years, he could see no sign of CHF. But then there were other problems....now it's a heart valve that doesn't work properly and blood gets into the heart. Rich says if it will make him feel better...do it! He's become more sob, more tired, changed exercise from 5 days to 3 days/wk and now does it only when he feels strong enough. He does still golf once a wk. but now has to ride a cart. He doesn't look or act his 79 years but I can see him slowing down. Reality sucks! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thank You I was diagnosed with IPF 4 years ago. I am seeing Dr. ph Lasky of Tulane University. Although my lung function is impaired, I was able to bicycle 80 miles twice last year. I am looking forward to sharing and learning from you in this group. Happy 4th of July to all. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Hello all, Just wanted to say thank you for the birthday wishes. It meant so very much to me. Thank you for the kind words. I love you all and am so blessed in so many ways I just can't count them all... God bless this very special air family. Leanne Storch Executive Director Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60642-2642 www.pulmonaryfibrosis.org P F A cure is just a breath away Quote Link to comment Share on other sites More sharing options...
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