Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 In a message dated 7/14/2003 9:00:06 AM Central Daylight Time, john3699@... writes: > i am a mother of three wonderful girls ages 10, 6, and 3. my three year old > has recently been diagnosed with c.f. (3/21/03) i have a friend who had a > daughter that died from c.f. about 4 years ago at 18. she had just graduated > h.s. and the day she died she got an acceptance letter to a college. i don't > know much of what to expect or anything so i am scared. > I know how you feel I have 3 daughters also and they are 10, 9, and 6 and my 10 year old and my 6 year old has CF. It has been just 4 years since we were diagnosed but it seems like yesterday. You will go through a lot of ups and downs but the best advice I can give you is learn everything there is about CF and then you will realize how close they are to a cure and how they have come a long way with treatments. When we were first diagnosed our doctor told us that he expects there to be a cure in 10 years I told him I am holding him to it. He has 6 more years to get it done. You have found a GREAT group!! There is a lot of experience her including adults that have CF and lots of GREAT parents that have been dealing with CF longer then I have. So if there is any questions in you mind ask away we are all here for you. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 Howeeeeeeeeee, We all know what you are feeling to some degree. All persons with CF are different . Rarely are 2 cases exactly alike. It sounds like you are doing just what you should . Getting to know about this dreaded CF. I will be happy to send you some info booklets -tapes, etc that might help you & also clear your brain some from trying to learn it all in a day. My granddaughter is almost 19 years old(Aug 3) & is a student away at college up in the N.C. mountains in BOONE. She was in high school the states #1 in cross-country running.Soooooooo. Let yourself see, hear all about the problems....BUT SEE the many good results from all the new treatments , care/clinics, & education we all share. SEND ME YOUR MAILING ADDRESS & I WILL SHIP TO YOU INFO. There are many folks on line on this and several other CF lists that are over 50-60-and even 70 .................so that should brighten your day some. Always remember that no two are exactly alike. ..we can & do learn from others & how they handle different symptoms, signs, appearances, & feelings. We can learn about all the different equipment-who /what/when/how they are used. We can learn how are feelings at different stages in our lives & our wee ones lives & it us AND how others handles- All these things really help us all handle the many phrases we will have to go thru as our children do WEE ARE TRULY A SUPPORT GROUP TO EACH OTHER .....even more so then our friends at home & in many cases our families. EDUCATION ....AWARENESS is the secret to " getting through " this. With much love & sincere caring, special wishes for you & yours. Love & hugs, GrandmomBEV introductions i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 Welcome. I am sorry to hear about the diagnosis but we are happy to have you here. any questions?-ask away. We are all happy to answer. everyone here is very helpful. This is a great group! My daughter, , is 4 & 1/2 now. She was diagnosed at 9 & 1/2 months. Mom of , 4 & 1/2 with CF Visit our group at http://groups.msn.com/TeamJane for some CF info, and our experiences. introductions i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 Our 11 month old, Abby (I also have 3 girls, Kelsi, 6 Chloe,2) was diagnosed at 5 mos. and we were devastated. I have learned a lot since then and am still learning. I recommend reading up to date information and being very diligent with CPT. For good basic information read " Cystic Fibrosis: A Guide for Patient and Family " by Dr. Orenstein. Although you feel overwhelmed now that will soon pass and you will move forward in your education about CF - what to be aware of, alert to and what NOT to worry too much about. There is much reason for optimism these days as you will learn. This forum has helped me tremendously. Your daughter needs you to be at the top of your " Mama " game right now so hang in there. I hardly qualify to be giving a lot of advice since I'm also new to this but my wife and I have certainly come a long way in the last 6 mos. Sincerely, Joe Reams > i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 I wish that I could say something to take your fear away, but only time can do that. SO MUCH has changed in the past 18 years. We have medicines now that weren't available then and there are many exciting trials being conducted that could greatly improve things for people with CF. My grand daughter has CF. She is 18 months old now. I cried for 24 hours straight, when we found out. I only cry once and while now. It's hard when things aren't perfect for someone that you love so much. I think that I have the cutest, sweetest grand daughter in the world (as all Grandma's do). Gale > i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 i had to complain and stress my concern over katelyn's diarrea and cough (constant especially the diarrea) for months and months before they took things seriously and ran test after test. i first had her sweat test in columbus (where we live) and they never bothered to tell us the results. then we took her to Riley Hospital for Children in Indianapolis (where she now gets her treatments). i love how helpful they are. i will put her picture in the photo gallery (as well as her sisters) when we get a scanner. everyone in/on this website is so helpful and friendly--i am so glad i found it. thanks to everyone for welcoming us. Morey wrote:Welcome again Beth, I am happy to know you, and hope to get to know you better. what happened that made you or your doctors suspect Katelyn has cf? We (they, whoever) made Oct cf awareness month because thats when it is in Austrailia. love, M mom of age 19 wcf and Nick age 21 nocf Re: introductions > my name is beth (john is my husband) my daughters names are amanda--10 w/o c.f., ashley--6 w/o c.f., and katelyn--3 w c.f. i find the fact that c.f. awareness week is in oct. and ashley and katelyn's birthdays are in oct. very interesting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 my mailing address is 16200 E. 265 N. lot #41 Columbus, Indiana 47203 (Beth ) and in advance--thanks. Beverley Donelson wrote: Howeeeeeeeeee, We all know what you are feeling to some degree. All persons with CF are different . Rarely are 2 cases exactly alike. It sounds like you are doing just what you should . Getting to know about this dreaded CF. I will be happy to send you some info booklets -tapes, etc that might help you & also clear your brain some from trying to learn it all in a day. My granddaughter is almost 19 years old(Aug 3) & is a student away at college up in the N.C. mountains in BOONE. She was in high school the states #1 in cross-country running.Soooooooo. Let yourself see, hear all about the problems....BUT SEE the many good results from all the new treatments , care/clinics, & education we all share. SEND ME YOUR MAILING ADDRESS & I WILL SHIP TO YOU INFO. There are many folks on line on this and several other CF lists that are over 50-60-and even 70 .................so that should brighten your day some. Always remember that no two are exactly alike. ..we can & do learn from others & how they handle different symptoms, signs, appearances, & feelings. We can learn about all the different equipment-who /what/when/how they are used. We can learn how are feelings at different stages in our lives & our wee ones lives & it us AND how others handles- All these things really help us all handle the many phrases we will have to go thru as our children do WEE ARE TRULY A SUPPORT GROUP TO EACH OTHER .....even more so then our friends at home & in many cases our families. EDUCATION ....AWARENESS is the secret to " getting through " this. With much love & sincere caring, special wishes for you & yours. Love & hugs, GrandmomBEV introductions i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 i kept your email so i could thank you. katelyn is doing well. the tapes can help those in the family (and friends as well) understand this disease. i need to show it to my mother-in-law yet; she is under the impression this is something a person can get better from. anyway thanks so much for the information--it's soooo helpful!!!! keep in touch. beth bennett Beverley Donelson wrote: Howeeeeeeeeee, We all know what you are feeling to some degree. All persons with CF are different . Rarely are 2 cases exactly alike. It sounds like you are doing just what you should . Getting to know about this dreaded CF. I will be happy to send you some info booklets -tapes, etc that might help you & also clear your brain some from trying to learn it all in a day. My granddaughter is almost 19 years old(Aug 3) & is a student away at college up in the N.C. mountains in BOONE. She was in high school the states #1 in cross-country running.Soooooooo. Let yourself see, hear all about the problems....BUT SEE the many good results from all the new treatments , care/clinics, & education we all share. SEND ME YOUR MAILING ADDRESS & I WILL SHIP TO YOU INFO. There are many folks on line on this and several other CF lists that are over 50-60-and even 70 .................so that should brighten your day some. Always remember that no two are exactly alike. ..we can & do learn from others & how they handle different symptoms, signs, appearances, & feelings. We can learn about all the different equipment-who /what/when/how they are used. We can learn how are feelings at different stages in our lives & our wee ones lives & it us AND how others handles- All these things really help us all handle the many phrases we will have to go thru as our children do WEE ARE TRULY A SUPPORT GROUP TO EACH OTHER .....even more so then our friends at home & in many cases our families. EDUCATION ....AWARENESS is the secret to " getting through " this. With much love & sincere caring, special wishes for you & yours. Love & hugs, GrandmomBEV introductions i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 I am very happy you received . I do hope it will help some. It isn't doom & gloom any more either. I just got back from a conf. in CA about Cf. Very knowledgeable Doc's & researchers -as well as many families & clinicians too. We shared so much info I feel stuffed BUT all very good. So many more things are in the health pipelines & being worked on. We are seeing a light. You know , folks get diagnosed (DX) all the time with various diseases. and they don't all die .....That is how CF is going to be before your wee one is in College. Look at POLIO. & MONO.---some other things We will have great maintance drugs as they do also with Diabetes. YES. We will beat this dreaded CF .................................. Have a great weekend. Let me know if I -we can help you in any way. LOVE & HUGS, grandmomBEV. introductions i am a mother of three wonderful girls ages 10, 6, and 3. my three year old has recently been diagnosed with c.f. (3/21/03) i have a friend who had a daughter that died from c.f. about 4 years ago at 18. she had just graduated h.s. and the day she died she got an acceptance letter to a college. i don't know much of what to expect or anything so i am scared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 Speaking of mother-in-laws!!! My father-in-law's second wife (step-MIL) decided one day when they were visiting to really tick me off about CF!! Mark and his dad had headed down to the basement so he could show his dad some projects he was working on, and she decided to launch into a speech about how " she and Mark (as in Mark Sr.) had been doing research on the web, and everything they found said that CF comes from the mother's side, so it came from you " --EXCUSE ME?????? I'd like to know what " research " they found and had read--I proceeded then to explain to her that yes, it is a genetic disease, but it comes from BOTH sides, not just one. I drew her a simple genetic diagram, and she still insisted she was right, and was very superior about it. I then went and got a few of my books and sent them with her to read, and pointed out the part about it coming from both parents, and how 1:17 to 1:20 Caucasians are carriers. Boy, did she tick me off that day--it wasn't the misinformation, as much as the way she said it, and how she even threw one comment in about how " if you hadn't give it to him, he wouldn't have it " , like it was my FAULT or something! Grrrrrr... Frustrating!! Oh, well...so goes life--always gotta be somebody who gets on one's nerves! S., mom to Cody (7, pwcf), DJ (9, nocf), and a (14, nocf) RE: introductions > i kept your email so i could thank you. katelyn is doing well. the tapes can help those in the family (and friends as well) understand this disease. i need to show it to my mother-in-law yet; she is under the impression this is something a person can get better from. anyway thanks so much for the information--it's soooo helpful!!!! keep in touch. beth bennett > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 We have similar frustrations with some of our relatives. When we let the family know about Patti's diagnosis so that the cousins of my husband and myself could be warned, with out fail every great grandparent said " Well she didn't get it from my side! " I guess and I are just freak anomalies then. ;-) love, Dawn mom of 4, 7 and under, the youngest wcf RE: introductions > i kept your email so i could thank you. katelyn is doing well. the tapes can help those in the family (and friends as well) understand this disease. i need to show it to my mother-in-law yet; she is under the impression this is something a person can get better from. anyway thanks so much for the information--it's soooo helpful!!!! keep in touch. beth bennett > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 Geez Louise, ! What kept you from gingerly grinding a high-heeled shoe into the top of your step-mother-in-law's foot or accidently sprinkling arsenic into her tea? It sounds like she was talking about hemophilia or male-pattern baldness. Those DO come from the mother's side! To this day, nearly 20 years later, I still remember telling my mom-in-law about the positive sweat test. I'd gone to her house to pick up (she babysat for us the day we went for the test). When I told her the test was positive, she asked what CF was, so in a nutshell (after nearly 20 years, I've still not been able to give a nutshell description), I mumbled something though I don't remember what I said. She replied, " Well, all I can say is don't have any more kids! " Uh, yeah. Like that was uppermost in my mind at that moment. Every time after that whenever my father-in-law coughed, she'd wonder if maybe he had CF because " he always had bad lungs. " Gee, and I thought it was because he smoked unfiltered Lucky Strikes cigarettes every day since he was 11 years old that had something to do with those bad lungs. Later, after my father-in-law died of a heart attack, my mom-in-law went to the doctor for a check up. Her doctor had retired so she had to see a new doctor. He asked her how long she'd smoked. She got really ticked off an insisted she'd never smoked in her life. He held up her x-ray and said, " Never? " Then shook his head, diagnosed her with asthma and prescribed an inhaler. Her father was a lifelong smoker; she married at age 17 and her husband was a smoker so her lungs never stood a chance until her husband died and she finally got to live alone with clean air. But she doesn't see the connection between the secondhand smoke, she thinks she has asthma because her husband had bad lungs and because her grandkids have asthma. Ya gotta love mother-in-laws... otherwise we'd all be in jail for spiking their tea with arsenic. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 In a message dated 7/30/2003 4:15:35 PM Central Daylight Time, codybug@... writes: > Speaking of mother-in-laws!!! > > My father-in-law's second wife (step-MIL) decided one day when they were > visiting to really tick me off about CF!! Mark and his dad had headed down > to the basement so he could show his dad some projects he was working on, > and she decided to launch into a speech about how " she and Mark (as in Mark > Sr.) had been doing research on the web, and everything they found said that > CF comes from the mother's side, so it came from you " --EXCUSE ME?????? I'd > like to know what " research " they found and had read--I proceeded then to > explain to her that yes, it is a genetic disease, but it comes from BOTH > sides, not just one. I drew her a simple genetic diagram, and she still > insisted she was right, and was very superior about it. I then went and got > a few of my books and sent them with her to read, and pointed out the part > about it coming from both parents, and how 1:17 to 1:20 Caucasians are > carriers. Boy, did she tick me off that day--it wasn't the misinformation, > as much as the way she said it, and how she even threw one comment in about > how " if you hadn't give it to him, he wouldn't have it " , like it was my > FAULT or something! Grrrrrr... Frustrating!! > > Oh, well...so goes life--always gotta be somebody who gets on one's nerves! > S., mom to Cody (7, pwcf), DJ (9, nocf), and a (14, nocf) > Just wait until someone says well aren't you worried that they might give it to the ones that don't have CF!!! uneducated people drive me CRAZY!!!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 This is why we are trying to raise awareness!! We shouldn't have to explain CF! Other people don't have to explain Cancer or Asthma. People don't know about it because the media doesn't talk about it. How about writing to the local paper of the town you grew up in and asking them to run a story about CF during CF Awareness Week? (Oct, 12-18) If they run a story about CF, maybe you willonly have to explain things to the people who don't read the paper........That is what I'm thinking of doing. Re: introductions > > Just wait until someone says well aren't you worried that they might give it > to the ones that don't have CF!!! uneducated people drive me CRAZY!!!! Deb A > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 I don't know if this topic is over (as I've been engrossed in my Harry Potter books) or even if I have the right idea. When Eilish was younger people used to ask me does it mean she wont be able to walk. That used to puzzle me, but I think they were muddled up with muscular dystrophy. Also a patient in our clinic argued black and blue his old Uncle had Cf, he caught it working in the mines. I said that its genetic blah blah blah! And said it was probably asbestosis or something like that. But nope he wouldn't hear of it. It is frustrating people don't know much, but I always try to remember how much did I know before Eilish? Nothing. We thought she'd drown in her fluid. (Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 That is a great point of view. Some in our community think Zach has spina bifida and wonder if he will ever walk normally. I can understand their confusion, Zach has very delayed gross motor skills and even at 17 months tumbles a lot when he tries to walk. It is frustrating when people seem so ignorant of CF, but I guess they are the ones that need the education the most. If we did not have an intern alert us to CF, we never would have thought to have Zach tested later. We had no idea what CF was. Sara > So sure we get tired of saying, " No, he hasn't outgrown it; yes, he > still needs his enzyme... " But perhaps these are tests of *our* > patience and willingness to be awareness messengers? > > Kim Quote Link to comment Share on other sites More sharing options...
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