Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Gwynne: Never would have a problem with your non response. I know any poll like that leaves out some options of answers. I just was curious and find the spread to be reflective of the differences in both the medical community and our own decisions. I think it does show how complicated the issue is. I would have loved to have further broken it down by form of PF since Prednisone is believed to help some but not to help IPF by most doctors. You mentioned change in barometric pressure. I never noticed until today the " respiratory index " on weather.com. It is based on a variety of weather conditions and 10 is best while 1 is worst. Needless to say ours was a 1 today. It reflects high winds, unusual cold, and low wind chill as well as hot, humid, stagnant air. So, I don't know how its calculated, but what we are feeling actually has an official measurement. You might all find it interesting to go to weather.com and enter your location and see if it correlates at all to actual experiences. Dr. Pepper? No wonder giving up carbonated drinks wasn't too difficult. lol. > > , > Thank you so very much for the beautiful prayer. I will print, > save, and put it in my collection of favorite prayers. God bless you. > > Leanne, changes in barometric pressure can also cause migraine. > I know first-hand more about this than I care to know. ugh. > I totally empathize about the loss of travel. But I have to believe > there are places yet to go with new lungs for us someday. > And a PFers tour sounds like an absolute blast! > I can't help wondering if Ambien is right for you, simply because of > the limited number of hours that you're able to sleep. Maybe it's just > hard to slow down your MOchine, girl. I'm glad you're not sleepy > during the day - that's miserable. That happens to me a lot, but I'm > fortunate enough to take naps regularly. Otherwise, I wouldn't be > able to stay as active as I am at this stage. > > Jim, > Wishing you a smooth let-down off the Prednisone. It's so tough > for so many, and no big deal for others. Seems to me that one > med is probably one of the top three hottest topics on this forum, > the others being 02 delivery methods, and to transplant or not. > > , > You manage not to break anything during the party, then burn a > rice pot!? Silly girl. Hey, but I'm impressed with anyone who's > bilingual! > > , > Your doctor's credibility fell in my eyes. Anyone who knows about > IPF, or does even a minimum of internet research, knows that > clubbing is common among IPFers and others with lung disease. > > Hey Gang, > Nobody responded to my computer question about why some > posts have started coming in unreadable, i.e. encrypted. What's > that about? I hate to think I'm missing ANYONE's post!!!! > > Bruce, > I didn't respond to the first poll, because I don't drink carb. drinks. > Many years ago I preferred Dr. Pepper. Sorry. I'm not going to > respond to the Pred poll either. I'm on it, but it's impossible to say > if it has or hasn't helped. There's a pretty good argument either way. > Anyway, I just didn't want you to feel I was being rude or ignoring > you, since you're always such a gentleman. > > Sher, > You're very generous to offer to counsel anyone in need. I'm SO > glad you're getting a new lady Fellow and hope you get the best > possible care at the new hospital. You've been through more than > enough unprofessionalism and insensitivity for one lady. I know, > because so have I! It's insane to have to make advocating for > oneself a full-time job, which it is with this disease. > > Lou, > I hate it that you're coughing and feeling so crappy. There's so much > fear that can creep into those of us battling for our breath. I hope > those meds kick in RIGHT AWAY! Sending gentle hugs to you and > prayers for God's peace. Remember that God IS in the mix and that > it's all in God's time - tougher to live and accept than to say, I > realize. > We're here for you. > > Beth, > Bravo, you're settled and pretty stable... both very good. It's great > news that your trip to Duke went well, although I certainly hope > you won't have another long-term diagnosis to deal with. Enough > already! We want all the details either way, of course. > > Jon and Teri, > Congratulations. This sounds like a very good move for you, Jon. > Now be a good boy so Teri won't kick you out of the house! Is > everything still rosy for the baby? > > You all mean so much to me. You have touched me deeply. > > Love and blessings, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Gwynne 1st.... as you say, we shouldn't have to advocate for ourselves until it does become a tiring job. I'm so glad there is understanding here. Others say I'm too hard to please or misunderstand. Even if yes, I still deserve good, credible care for a fatal illness. I'm not having trouble reading any posts so can't offer any help there. Wow, what wonderful friends you have! God does work in mysterious ways and you can't know what results all your efforts will bring to this disease. What a blessing for you. Bruce! Oncologist? You have cancer too? I must have missed that or is this your first mention of it? Are you comfortable sharing how advanced it is?Sometimes I wonder how much are we to endure! Your reply to Sandie is very sensitive and caring. More so than my own. I tend to get right to the point and as I said, it's hard to generalize, in writing especially. Joyce... I don't know anything about Rituxan or even Cellcept except for what I read on the board. I pray God will give you Wisdom dear heart. Love to all. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Sher: Don't think I have cancer but not completely sure. Probably all related to the IPF. But, my first neck and chest CT was done for swallowing and gastro issues and in that course swollen lymph nodes were found. Then sent to oncologist. Second CT done two months later and no change. Oncologist doesn't believe i have lymphoma (swollen nodes are 1.5-2.0 cm) although only way to know would be biopsy. However, at current level if I did have it, he might well not treat it yet, if ever. Now these CT's did show the lung scarring but no one was looking at that until pulmonologist looked later and did another, detailing inspiration and expiration. So, I will continue to have follow up CT's for pulmonology and also for the oncologists. But, unless some change in size of lymph nodes, oncologist will do nothing. See, I get more for my money when I get CT's....let's see, my last were looked at by Gastrointologist, Neurologist, Primary, Pulmonologist and Oncologist. Fortunately, they are in same building and all but oncologist in same practice and the CT's are done in their office. I was biggest user of CT equipment for a couple of months with two neck and chest, one chest/lung, and one abdomen and pelvic set. > > Gwynne 1st.... as you say, we shouldn't have to advocate for ourselves until it does become a tiring job. > I'm so glad there is understanding here. Others say I'm too hard to please or misunderstand. Even if yes, I still deserve good, credible care for a fatal illness. > I'm not having trouble reading any posts so can't offer any help there. > Wow, what wonderful friends you have! God does work in mysterious ways and you can't know what results all your efforts will bring to this disease. What a blessing for you. > > Bruce! Oncologist? You have cancer too? I must have missed that or is this your first mention of it? Are you comfortable sharing how advanced it is?Sometimes I wonder how much are we to endure! > Your reply to Sandie is very sensitive and caring. More so than my own. I tend to get right to the point and as I said, it's hard to generalize, in writing especially. > > Joyce... I don't know anything about Rituxan or even Cellcept except for what I read on the board. I pray God will give you Wisdom dear heart. > > Love to all. > > Sher; ipf 3-06; OR. > Don't fret about tomorrow, God is already there! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Bruce...Well I sure hope you do not have cancer! Yes, I agree, the C-scans are informative. I have my fingers crossed your tests remain clean from cancer. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
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