Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Rant n' Rave--I think that was a very good rant and rave and I feel the same way--not dead yet but having major complications, and I do mean major despite my amasing height and astonishing weight and pink cheeks (facial), or appearan ce of being as we say in Spanish of being " rosada y gordita,; " I am just plain rosa (as my surname, maiden one) implies, and definitly " gorda, " which means in Spanish " chubby! Now I was not chubby until I had seven joint eplacement sur geries and major osteoarthritis set in, but I am not the 120 lbs. I was before then either; my previous all time high was 134 at 5' 10.5 inches tall! The joys of aging, which as Kathy , wcf, at 59, says rightly, are a privilege denied to many. I am 66 and try hard not to rant and rave too much, even about my youngest who is 38--I think--wcf, and doing very well. I try to be thankful, but it is hard and the s Hopkins classification of cystic fibrosis as being " classic, " " non-classic, " or " cf-related! " does not really help. I have always assumed that the difference, regardless of mutations was in gene penetration, but I had best shut up for now, anyway. I love to you all, n Rojas, who appreciated the previous Rant n Rave! > I have seen references made a couple of times now stating that > doctors have told parents that their child has a " mild " > or " moderate " case of CF. How can this be possible? Thats almost > like saying you are only kind of pregnant. I understand that CF > effects everyone differently and to different extremes. However, I > find it hard to beleive that there are different levels. How can you > have cf " mildly " ? You may not have extreme symptoms, but would'nt > you think that there is a difference between symptoms and the actual > disease. This bugs me. I would hate to think the doctors are saying > this to help ease the pain for the parents/child which I think is > misleading. lived with this disease for 9 years with no > complications, no severe or extreme symptoms, so does this mean that > she went from a " mild case " to a more " moderate case " , whats next? > Will she graduate to " well its not that bad yet " case which will > eventually lead to " theres no stopping it now " case? I just feel > like if a doctor tells someone that their case is mild, then he is > telling them that #1, it won't get any worse and #2, there is a > chance that it will get better. Its just crazy. > > I could go on for another 2 hours, but will spare you all. Must be > pms. Hmmm, no wonder my husband went out of town to go fishing for > the weekend. So now you all get to listen to me rant and rave > > Thanks! > e > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 n, I absolutely love your attitude and you are a real inspiration to me, if not to all of us here! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 e, thank you, and given the week I have had I had thought that I was just an old grouch--permanently, all of a sudden! Love and appreciation, n, the grinch Re: Rant n Rave > n, > I absolutely love your attitude and you are a real inspiration to > me, if not to all of us here! > > > e > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Yeap, that is just a fallacy, nothing more. To me it is as mild as the bugs that the patient will culture. > I have seen references made a couple of times now stating that > doctors have told parents that their child has a " mild " > or " moderate " case of CF. How can this be possible? Thats almost > like saying you are only kind of pregnant. I understand that CF > effects everyone differently and to different extremes. However, I > find it hard to beleive that there are different levels. How can you > have cf " mildly " ? You may not have extreme symptoms, but would'nt > you think that there is a difference between symptoms and the actual > disease. This bugs me. I would hate to think the doctors are saying > this to help ease the pain for the parents/child which I think is > misleading. lived with this disease for 9 years with no > complications, no severe or extreme symptoms, so does this mean that > she went from a " mild case " to a more " moderate case " , whats next? > Will she graduate to " well its not that bad yet " case which will > eventually lead to " theres no stopping it now " case? I just feel > like if a doctor tells someone that their case is mild, then he is > telling them that #1, it won't get any worse and #2, there is a > chance that it will get better. Its just crazy. > > I could go on for another 2 hours, but will spare you all. Must be > pms. Hmmm, no wonder my husband went out of town to go fishing for > the weekend. So now you all get to listen to me rant and rave > > Thanks! > e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2003 Report Share Posted October 24, 2003 e, When Eilish was dx we were praying that they would tell us she had it mildly or slightly. All the specialist said to us (as we asked numerous hoping for the answer we wanted) was that there is no defining mild, moderate etc. As some kids are sicker when younger then go through years pretty well, and others sail though until teens and then wham! I think it might be the 'symptoms' at the time they may be describing but that can change from day to day. (Australia) Rant n Rave I have seen references made a couple of times now stating that doctors have told parents that their child has a " mild " or " moderate " case of CF. How can this be possible? Thats almost like saying you are only kind of pregnant. I understand that CF effects everyone differently and to different extremes. However, I find it hard to beleive that there are different levels. How can you have cf " mildly " ? You may not have extreme symptoms, but would'nt you think that there is a difference between symptoms and the actual disease. This bugs me. I would hate to think the doctors are saying this to help ease the pain for the parents/child which I think is misleading. lived with this disease for 9 years with no complications, no severe or extreme symptoms, so does this mean that she went from a " mild case " to a more " moderate case " , whats next? Will she graduate to " well its not that bad yet " case which will eventually lead to " theres no stopping it now " case? I just feel like if a doctor tells someone that their case is mild, then he is telling them that #1, it won't get any worse and #2, there is a chance that it will get better. Its just crazy. I could go on for another 2 hours, but will spare you all. Must be pms. Hmmm, no wonder my husband went out of town to go fishing for the weekend. So now you all get to listen to me rant and rave Thanks! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 > I have seen references made a couple of times now stating that > doctors have told parents that their child has a " mild " > or " moderate " case of CF. How can this be possible? Thats almost > like saying you are only kind of pregnant. Thank you for your post e because this is one of my pet peeves as well. I am thankful my son is relatively symptomless at the time being but that does not mean it will last forever. It pisses me off that friends and doctors minimize the impact of the disease by saying he must have a " mild " form. While the stats are getting better every year for longevity the fact of the matter is many of our kids are not going to see 40. It's a dumb thing to say and I take every chance to nicely reeducate anyone who says it to me. jan Quote Link to comment Share on other sites More sharing options...
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