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Rainman
01-19-2004, 04:29 PM
I am a 46 yr old father with a 19 yr old cf daughter. She lives at college 4 hrs away. She was treated atchildrens hospital treatment center with good results until last 8 months. currently in transition from pediatric care to adult care doctor. pft's have dropped almost 50 percent in last 12 months and include a case of pnuemonia 4 months ago. want to change docs as adult cf care not as aggressive/urgent with treatment ...not sure where to go from here. this is a long story ( just like evryone else's I'm sure ) but feel we are losing the battle from a time and physical condition satndpoint. Cant really pinpoint why the rapid decline in pft's but am williing to take my daughter anywhere to get 2nd opinion -look to either confirm current treatment-condition or psossible alternatives. Dr's take position this is"normal CF progression " but I want to be sure as I feel pfts have dropped too much too fast and feel there should be someway to treat.Rainman

DianeRuizC
01-19-2004, 06:02 PM
She will be fine. Make sure she's taking all her meds as told and doing her exercize and she'll be fine. Try changing clinics again. Faith and prayer are also very important and do work! I'll have her in my prayers <img src="i/expressions/face-icon-small-smile.gif" border="0"> best of luck.

anonymous
01-19-2004, 08:10 PM
Well Ray, welcome to the life of a college age CFer. You daughter is an adult now, and she has adult needs that requires adult treatment. The adult clinic is where she needs to be. You are going to feel like you are out of the loop now. Docs will only share info w/ you when she ok's it and she is incharge of her care. Most of us, especially women, experiance a decline when we go to school. The reason is, no matter how responsible we were/are, adjusting to college is tough w/ or w/o CF. It is a wonderful time of learning and growing, testing limits and unfortunatly getting sick. Over the next few years, she will actually learn for herself how to manage her life. Remember when you were young? You had all the adults giving you advice and telling you what was best, but you still had to learn for yourself. It can be nerve racking for parents to have to sit by and watch their "babies" get sick more often, or more severe, but remain faithful that you raised an independant, smart and brave daughter, and then watch her become an independant, smart and brave woman. I was super healthy until I went to school, never hospitalized, and then suddenly got sick every semester! After a few years ( I also had to figure out how to buckle down in class, but that's a different story) I got the hang of it. I'll be graduating in May! My best advice is be supportave. It sounds like you are close enough for emergencies. Let her negotiate the smaller stuff. I know there is a feeling among parents that none of it is small stuff when it comes to our health, but you have to let her make her decisions now. She will learn from them.If your daughter wants a college penpal who has been through it, or if you need a little advice from this [email protected] yr old w/ CF in COCSU, Go Rams!

Rainman
01-19-2004, 10:03 PM
THANKS FOR THE VOTE OF CONFIDENCE. MY REAL CONCERN IS THAT I FEEL THAT THE CHANGE IN DOCS AND HER OVERALL TREATMENT HAS RESULTED IN THE OVERALL POOR RESULTS. SHE DID WELL HER FIRST YEAR IN COLLEGE AND WE FELT THAT THE DOWNTURN SHE EXPERICNED LAST SUMMER WHEN SHE SWIRCHED TO ADULT CFF DOC WOULD BE ADDRESSED AND CORRECTED DURING THE SUMMER AND THEN SENT HER BACK TO SCHOOL IN THE FALL. THEN WE HAD TO BRING HER BACK HOME IN MID SEPETEMBER, SPENT A FEW WEEKS IN HOSPITAL ETC WITH THE IDEA WE COULD STEM THE DECLINE AND SEND HER BACK IN EALRY JANUARY TO RESUME HER STUDIES. BOTTOM LINE WITH THE CHANGE IN DOCTORS SHE WENT FROM A CFF CLINIC THAT WAS VERY EASY TO ACCESS AND IMPLEMENT CHANGES IN TREATEMENT TO AN ADULT DOC THAT FRANKLY IS VER INACCESSABLE AND HARD TO GET A HOLD OF. LIKE EVERYONE ELSE WE ARE ALL TRYTING TO BUY AS MUCH TIME AS POSSIBLE.VERY FRUSTRATING FOR MYSELF AND MY WIFE AND ALSO MY DAUGHTER. THERE OUGHT TO BE A BETTER WAY.

Diane
01-19-2004, 10:16 PM
Hi Ray, I commend you for being so supportive, and wanting to help your daughter so much. It might not be bad idea to try to find another cf doctor that treats adults. There is nothing worse than a doctor that you cant seem to ever get a hold of. Encourage your daughter to get into some sort of physical acitvity if she is able to. Staying active is very important to our lungs. A 50% decrease in pft's is a big decrease. If it were me i would want to rule out that something else isnt going on other than " normal cf progression". good luck and keep us informed, we care<img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane

anonymous
01-19-2004, 10:16 PM
Since you seem to be at an acredited CF care center, I'd voice this concern to the local CF foundation chapter. They may be able to get the ball rolling for you, and it's important that they know if their docs are missing the mark. Something else that may contribute to her decline,... in the past few years, I've cultured out some new bacteria, developed CF diabetes, changed birth control,... bunches of new stuff has come up and I've spent alot of time getting blood drawn, sitting in the hospital and figuring it all out. Good luck.Debbie22 yr old w/ CF

Jenny
01-19-2004, 11:39 PM
Rainman-Hi, I am 22 with CF, and when I was 18 I started getting more sick and hospitalized every year, but my lung function only dropped about 25-30%, not 50! I was told at age 19 that I should be transfered to the adult clinic becuase the doctors were trained to deal with issues that adults have that children don't. I seen the doctor and had no connection with her at all. I didn't feel she was right for me. I went back to the pediatric clinic and started seeing a nurse practitioner who sees children but was studing adults too, and she has worked wonderfully with me to help me learn what treatment will realistically work for me. I trust her and most of all she listens to what I have to say about medications and treatments that I don't feel work for me, so I'll try alternatives, and my opinion is always involved in the outcome. So make sure your daughter does have the right doc, it does make a difference, they recomend different meds and treatments. I've gone through 4 before I found the right one.Good luck, I hope she feels better.

anonymous
01-20-2004, 05:03 AM
I too have a college age daughter with cf. She had a rapid decline in health her sophmore year and found an adult cf center for treatment, it made a world of difference to find a team of doctors and nurses who were willing to try different meds and therapies. It seems though that the things that have made the most difference have been discovered by trial and error. She cannot handle a fatty diet and many foods seem to affect her breathing also. Living away from home in an apartment with five other girls has presented problems also....dirty bathroom, really scarey fridge and a humid beach community. We bought two air purifiers ( very embarrassing for a 20 year old ) but her lung functions are back up and she has not had to be on antibiotics for quite awhile.Finding the right doctor or even nurse to connect with really helped, it's hard I think at this age for girls to see thier friends go with no sleep and live on coffee and junk food and its no big deal - I know my daughter has had to struggle with the time and effort it takes to stay healthy. I think the first two years with her away at college have worn on me even more than the sleepless nights when she was little. Hang in there and if you don't feel comfortable with her care its worth the travel time to find some help.Go with your gut instinct, (well maybe not if it is like mine.....just pack her up and take home) hope all is well.e read

anonymous
01-20-2004, 07:01 PM
To the woman who last posted-I am a 20 yr old college student like your daughter, and i was interested in how you said certain goods effect her breathing. I too think that certain foods cause more inflammation that makes me cough more, or makes everything feel a little stiff. These foods i find are usually wheat and white flour carbs, etc, pasta.. Anyway, i do not have a problem with fatty foods but am still interested in what your daughter finds works for her. caitlin

anonymous
01-20-2004, 07:16 PM
Ray,I am a 31 year old male with CF. I just recently went to an appointment with my doctor and actually asked why I still had to go to the pediatric clinic in order to see my CF doctor. The answer I got actually made sense. Your daughter's been oing to the same pediatric CF clinic her whole life and they know her progression. The know how the disease has affected her as she has grown and know what kind of treatments work or don't work. They told me that this is very important in helping to keep my CF in check because knowing how they've treated me in the past can help them in seeing how the disease will progress in the future. It also aids them in choosing a proper treatment for the future. The only difference for me now is that I now see and adult respiratory specialist at the pediatric CF clinic, but I still see the same head nurse that I've seen since I was a child. Maybe it's worth going back to the pediatric doctors to see what they have to say. They know best how she has been for most of her life. Hopefully this helps you a little. Believe me, I know its a tough decision to make.SMG

anonymous
01-20-2004, 11:35 PM
I am not sure where you live, but I think the adult care at Stanford is superb. Good luck.

anonymous
01-21-2004, 03:32 AM
caitlin----I am always so amazed that there are so many out there with similar situations, my daughter cut down on dairy this year and feels it has improved her digestion and lung function. Ice cream is bad and I think she drinks Lactaide milk instead of regular. I know coffee and chocolate make her feel gross but that kind of universal. She has this thing for cranberry juice but I know she really has to keep up on her acid blockers. It seems like she craves red meat at times but takes a day or two to regroup after eating alot of it. Her freshman year in the cafeteria was rough. She is kind of touchy about her diet cause' we bug her about being too skinny.....I'm trying not to bug too much but its really hard. Hope you are happy and well. I would appreciate any advice from college students on what would be helpfull and not over-bearingly motherish behavior.e read

Rainman
01-21-2004, 11:54 AM
Thanks for the reply. Unfortunaletly , returning to the pediatric side of the equation is not an option , or at least not one the pediatric care side is willing to discuss. Seems to me there is internal politics going on but that is my opinion. We approached the pediatric side and they said they would only be able to treat our daughter for another 2 years at Children's Hospital ( she would be 21 then)and then she would have to go to a different hopsital the "transition" doctor works for. Again, my basic concern is the lack of responsiveness from the care center at this stage. When we try and call the new transition doc. we cannot get a hold of her. Even her assigned nurse is slow to respond. As a parent you want things addressed as soon as possible as even small issues/changes have possible major ramifications.I am sure the "transition" doctor is feeling we ( my wife and I ) are in denial and that the current health situation is just a case of the way life with CF is but I am just not willing to leave it at that.I also realize teh trasnsition doc is probably overwhelmed in work as well as the flu and other illness issues have increased patient needs...Other than IV treatments and normal therapy etc. her treatment has been basically the same for the last 7-8 years with Pulmozyme and Tobi being the only routine treatments prescribed. I read all the time about research in trials /research ect. but really have not seen anything that seems to be ever implemented....not trying to be so negative ....just very frightened and concerned at this stage. I received call from our daughter yesterday and drove 8 hrs ( 4 each way ) to pick her up from school as she felt she just could not stay there and function.Packing her up and bringing her home was very emotional and difficult to do....We have been in contact with several of daughters previous docs that have moved from the pediatric center but the geography is difficult.

anonymous
01-21-2004, 02:02 PM
I had to get packed up my first year of school ,too. It was ver sad, and I was very uspet. I felt like I was never going to do anything with my life, and that I should just give up. I thought that all my profs were going to think that I was dumb or lazy because I was leaving school, or that people wouold think I was using my CF as an excuse. I just had to get in the mindset that this is MY life and I have to only worry about what I am doing. Debbie22 yr old w/ [email protected]

anonymous
01-21-2004, 03:23 PM
Not trying to pry but assume you resolved those issues and made it back to school? Part of the problem is my daughter picked a college in a very hilly area and her dorm room was on 3rd floor with no elevator. I am sure that probably helped last year as it made her excercise without calling it that. Did you go into hospital fro a while to treat the problems that forced you out? Sorry if I am asking too many personal questions.

anonymous
01-21-2004, 08:36 PM
Oh, ask away. If my experiance can help anyone or bring them comfort, I'll talk till I'm blue in the face. Things got eaiser when I realized that my care-free days were only a memory and that I had to do some things for myself that I hadn't. I had grown up "normal", everyone knew I had CF and I was very open about it, but other than coughing every now and then or poping an enzyme, it was easy for people (myself included) to forget about it. The came college! no curfew, no parents, no rules, what a blast! Until I started noticing that I had a hard time climbing the stairs, and my clothes weren't fitting so well, and I coughed more, and just didn't feel good. I was in a private dorm room thanks to a doc's letter, but other than that I didn't think anything was going to set me apart. I thought if I just kept on doing what I had all along that I would be fine...not true! It never really occured to me that no matter how healthy you are, CF is a PROGRESSIVE disease. And I realized that there were little things that had made a big difference that I never noticed at home. For one, I often skipped breakfast because I wanted to sleep in, or just didn't feel like walking to the caf. (the food was awful, too). I had always woken up to a hot meal from my mom. Second, when you have communial space, you get embarassed sometimes about your meds, therapy and try to hide it, thinking that you're trying to not bother anyone. You just want to be normal, and be able to stay up all night, and spontaneously drive to Mexico, and eat Raman noodles, and get your homework done, and date, and party...and CF doesn't fit in. If you grew up only having to do minimal therapy and hardly getting sick, you have a hard time adjusting when it's suddenly in your face.There were a few reasons that I declined that were discovered. I was diagnosed w/ CFRD and began insulin therapy w/ Humalog, a fast acting insulin. That helped me gain weight and improve my lung functions. I was culturing out new microbacteriums and began antibiotics. I had osteoperosis in my spine and started meds for that. I started getting very serious with my nutrition, making sure that I was getting quality as well as calories. You'd be amazed at what just a few months of crappy diet can do to you. I budgeted my money better, making food my top priority. I started telling all my profs about my situation and what my needs might be, and registered with the students with disabilities office. I found out that I was entitled to a special parking permit on campus ( I just upgraded to a state issued handicapped tag). I took enough classes to be a full time student, but not a full load. The hardest part was learning to say no more often than not when it came to going out. My second year, I lived in a house w/ 3 other girls and it was tough. I have lived by myself ever since and I think it has made a HUGE difference. Having my own space, and learning to love time to my self has made it eaiser for me to not go out all the time, and not to feel lonly when the house empties out. It's eaiser to say, "I can't go out b/c I haven't done my nebs yet". My grades have also improved. I had to shed a few friends, and surrounded myself with people that made my life eaiser (those that went to class, didn't party as often, ate right, did yoga). That part was hard, too. I had to put aside my childish notions of friendship and realize that some friends may not be good for me and my health. It's taken a while, but it got [email protected]

anonymous
01-22-2004, 12:10 AM
Debbie I totally agree with alot that you said about college. I went to college in DC for two years, and it was definitely difficult at times. I had made up my mind that I would rely mostly (this became entirely) on exercise instead of chest PT. My whole life since I was diagnosed at 2 my mom made me do chest pt every day (except chistmas), but by the time I was about 16 i started to skip some. Since I didnt get sick very often at all, and since I exercised, my docs said that it would be ok but they would have to see how it went and i would have to exercise for at least 30 minutes a day, cardio. Anyway, the first 3 months of college I did very well, and my pft's were higher than when i had left. However, i caught mono in January and this was when the problems began. Basically, if you are well, exercising is great, but when you can exercise with mono, then it is not so great. To me it was not even an option to attempt to do my PT in front of my roommates. It always amazes me when I tell someone I have CF, and then they say something like "I saw this thing on TV where people had to get like HIT, on thier BACKS.....you dont have to do THAT do you?" and they have this disgusted look on thier face. So obviously i have, in many cases, quickly replied NO!. As much as i exercised those 2 years, it was always hard if i had a small setback, like a cold, to bring yourself back up to normal with just exercise, especially if you're tired. Anyways, to make a long story short it got difficult to even do a simple cleanout, because i automatically had to miss class and stay home, since I lived a plane ride away from school. Plus, I HATED where i went to school. So i transferred after my second year to a school back up in Boston, half an hour from my house. I DO NOT live at home (no way) but in an apartment ALONE, and like Debbie, this has made all the difference. I also just got the vest which has made a huge difference, it is so easy to do, and i feel that it helps me in a way that chest pt never did. I never used to feel the difference from Chest pt...i just "knew" it was working. Now i can actually feel the difference with the vest, its amazing, and so easy. However, its not that I am modest but certain things i just dont feel comfortable doing in front of others, so I dont know that I could ever live in a dorm with people and Strap on my vest. Something about CF therapy just LOOKS so bizarre, its too bad. I can only do the vest in front of my parents and my boyfreind. Believe it or not freinds that I have known since I was 2 dont even really understand that I do Chest pt, i think they just have a vague idea. However, two of my freinds came over unexpectadley and saw it, I felt like such a loser but it was like I was caught with a sex toy or something (!) and they just shrugged, like "ok, sounds like its good for you..." Anyway, living on my own has made all the difference, i buy my own food from whole foods, cook, go to bed early, and go out when i want to. No matter how hard i tried in DC to eat well, sometimes it just wasnt possible; now i have my car and can go wherever i need to. And when i do my cleanout at the end of Feb. i can start out at home, but still not miss class, and hopefully finish up my treatment in my apartment. In retrospect i realize that it is so much better for me to be here, but the reality of why I left my school in DC was based 99 percent on that fact that I really didnt like the school, but now I see that maybe that was a blessing in disguise. There are certainly ways to take care of yourself in college, but it takes a lot. Not being in the midst of people who can eat nothing all day or eat pizza all day and stay up till 2 am is a good thing. If i had stayed in DC i think i would have requested a single. My life is different than others, but i try not to think about the things I cant do, and instead think about the fact that I do not think it is really important that a person live a "crazy drunken college life." I never thought that college was supposed to be the best time of your life...god, thats when you do the least! Basically, i think college is the hardest for every person with CF, not because of slacking off or anything, but because your life drastically changes and you sort of dont expect it. Even if you dont drink a lot in college for example, a little bit in college could be once a week, where for the majority of your life you didnt drink AT ALL, and even in high school it was a lot less. To go from that to twice a week is a big difference in the big picture. ok this was long, hope it helped maybe!-Caitlin

anonymous
01-22-2004, 12:13 AM
Hi my name is Jessica. I am 21 years old and have CF. My health went way down when I started college also we (the doctors and I) think that it is because we are more busy and sleep less and honostly do not take the time to take as good of care of ourselves at college as we would when we are at home. when we are not at home. it just gets so old always having to take medicine and do treatments...the list goes on and on. just keep checking on your daughter and she will get back into the same routine of taking care of herself. remember this is probably her first dose of real freedom.

anonymous
01-22-2004, 01:11 AM
Ray - There is nothing more frustrating than doctors who don't listen, or don't understand. I hate going into the hospital, the thing about CFer's is that we (I believe most do) have a routine and that whole balance gets upset when in the hospital. I remember moving from Pediatrics to the Adult pulmonology in the clinic that it took a bit, but I never had a doctor not be concerned with my care. If care isn't good we walk a fine line between good and really sick. You need to seek out an adult pulmonologist who knows CF. I suggest the CF foundation, local chapter if you have one. I don't know what state you live in. In the midwest I know of a few places that have CF centers, that is their goal to take care of CFer's kids an adults.I wish I could help. Just tell your daughter to keep her head high and to do all her treatments and get rest, but yet remain active. I am guessing her long function has dropped due to the pneumonia, has she been cultured for any Pseudomonas aeruginosa. That is the tricky one, and usually when lung function can take a dive, if not properly taken care of.Take care, good luck -Female 26 w/CF

anonymous
01-23-2004, 08:50 AM
. Hello, I also witnessed agreat decline in health during my 1st year in college, before that i was normal but since then i am anything but normal, i am not being able to even go to college or do anything. I lead a very unproductive life for the time being. I think it is the way CF works, it gives you good time for a while and then kicks your ass.