Looking at colleges for my CFer

Jane

Digital opinion leader
It really depends on how independent your child is. My son commutes from home which is a good choice for him. He goes to a State University that has a wonderful disabilities office. They have helped him with priority registration, priority parking, letters to his professors etc. You might want to ask about accommodations etc just like you would do in a high school.

I'm sure other people will add to this list but here are a few things to look for:

Distance from dorms or parking to classes or dining hall.
Private room
Disabilities office
Distance from clinic and pharmacy
 

sabrina77

New member
Hi janddburke--

I graduated from college last May. It was a great experience and I learned more about myself during that time. My first year of college I lived at home and went to the local college. The following year I moved out of state and went to school in Denver. I was there for 4 years. I had such a wonderful and I find myself missing Denver. I graduated with a degree in Elementary Education, but have reevaluated if I really want to put my health at risk to be a teacher. I would say there are many factors when choosing a college for your child. Do you want your child to live at home, in student housing, or on their own. Is there a CF clinic near by? The cost of the college is another factor. What programs or degrees is your child interested in? I tried to rush through college and finish my requirements, but I now wish that I had taken time to take classes from my favorite teachers and classes that interested me. I went to the National Jewish hospital CF clinic and I loved their clinic. I really miss it, but it is too far for me to travel to now that I am no longer in Denver. Just like any school, there are germs and bacterias floating around, so it is still essential that all meds and therapies are kept up with. I had several infections during college but most were treatable with oral and inhaled antibiotics. I did have one tune-up while I was in school though. I explained my medical history and brought dr's notes to my teachers and they were all very understanding and helpful about my situation.

If you have any questions I am more than happy to answer or help out as best as I can.

Sabrina
 

Aboveallislove

Super Moderator
The advise I give my parent friends of non-CFers I think is even more important for CFers--college is expensive. Don't get you/your child buried in debt studying in a field they will never be able to pay off. It's not fair, but for CFers that more important because they need to consider future careers that are safe, have flexibility, good benefits, as well as that they enjoy. I truly think the best way is to go backwards--where does your child want to do after they graduate? How do you get there? How much can you afford to borrow so that you can work and survive in that field. What schools provide educational options to not just train you for that field but get you a job in that field. How expensive are they and what are the other options. Not many 17 years olds know what they want to do. But there are sadly so many students taking on piles of debt and then being behind the 8 ball when its time to graduate and they have no real employment options. I just finished helping dear friends with this analysis and there son ended up choosing the "more expensive" school because it also had more opportunity for employment in a field which he was interested and with great internships was likely cheeper. I'm happy to bounce ideas around on this front if you want. Others can probably help more on the practicailities of "close to CF center," "provide clean student housing," etc. etc.
 

hstaloch

New member
I think the main thing to pay attention to is what your student is looking for-- I was diagnosed just before going to college in Boston and didn't change any of my plans. I ended up transferring later on to be closer to home (for more reasons other than solely CF) but it has been nice living closer to my family in Minnesota (I'm about to start my senior year).

At both schools, disability offices have provided their services such as intitial letters to my professors informing them of my situation and suggestions of modifications I may need to the syllabus, etc. in the event I were to get sick. I've never actually needed to use these 'guidelines' but it has been a great way to get to know my professors at the start of each semester. The disability office usually writes a fairly standard, unspecific letter; however, I meet with the professor to discuss the situation and tell them specifics, about my CF, how I most likely won't need any special treatment, etc.

For me, it's been very convenient having two great CF centers very close to my schools. It completely depends what kind of setting your child's looking for- obviously, more urban is oftentimes easier to be closer to a CF center but if your child's going to be more comfortable in a rural setting they may very well be more healthy as well!

One more thing about dorms- at first, I was worried about having to do my vest/treatments with someone else right there everyday but I was completely up front with my roommates (I was in an apartment style/suite) and they were extremely supportive- sometimes even encouraging me to do my vest before we went down to the dining hall! I think people want to be supportive and understanding so you have to give them the chance to do so. If for some reason, your student's dorm/roommate situation isn't working out, I'm sure their request for a change would be taken very seriously considering the circumstances. Unless your student is really set on being in a single, I'd encourage them to do the regular double room- they won't feel as isolated and that first roommate can be a great link to other friends, someone to eat with, go out with, etc.

These are just things that came off the top of my head! If you are curious about anything else or have any other questions, feel free to let me know!
 

kosdancer

Member
I am about to start college, so I haven't gotten in to meet professors or anything like that, but I can tell you what we have done thus far!

When I was looking, I looked within driving distance of home (meaning about 10 hours for the longest drive, 7 for the next-longest.) I didn't really intend to leave the state without a scholarship, but I knew that I would be moving out of home for sure. We didn't worry about being close to CF centers or anything really related to CF with my original search process. I had a major in mind and I looked for top programs in that major, as well as schools that offered a lot of variety so that if I did change my mind, I would have other options that would also get me a job.
I applied to 6 schools; 4 out of state, 2 in state, 3 that I would consider back ups, and 3 that I knew I had a good shot of getting in, but didn't anticipate any scholarships. I approached applying just like all my friends did, for the most part.
Once I knew a bit more about where I had been accepted and where I would probably be going, I started looking more seriously as far as doctors. Even in February (3 months before the deadline) I had it down to 2 schools. The one I picked is a 7 hour drive. I guess some time around April we discussed with my doctor here what he wanted to do for college. In June we drove up and met the CF team at my university, and they seem very good and very much in line with my own doctor. We started talking to disability services in April. I got approved about a month ago. They have set me up in a private apartment so that I don't have to worry about other people's germs and can have my own space.

I guess my biggest pieces of advice:
-Don't worry about it too much right now. If your CFer isn't at all independent, maybe steer towards places closer to home, and certainly keep cost in mind, but there are scholarships (for CF kids!) so don't count out a school due to cost until you have to.
-When you have made a decision, contact disability services. If you wait to long, they will be unable to assist you with your housing needs; most schools close housing May 15, and they need to know about your issue before that. In addition, at my school there are only monthly meetings to get approved by DS, so if I'd waited I would've had major problems.
-Talk about what you want in a dorm room. If your CFer will be too shy to do their treatments in front of others or if you are worried about germs as I was, think about a private room. I know that I get sick when I spend time with sick people, so I didn't want to put myself in that type of situation, not to mention worrying about meds being moved and such. At first I was very much against having a roommate until I really thought about what it would mean and how it could potentially be a big issue. Also, the traditional hall-style dorm isn't for me. Leaving your room and remembering your key every time you have to wash a neb or get a drink is a pain. I didn't want to do it. You need to at least have an idea of what you want when you approach DS.
-Keep your doctors in the loop and see what they think. They have dealt with this before and may think of things you don't know about.
-If your kid may be going far away, visit the CF team. If I had hated my team, there is one other nearby, but even if there weren't, it probably wouldn't have been a deal-breaker for the school. That being said, they need to know that you're coming so if there's an issue, you're an established patient.
Ok I'll stop now - let me know if you have any questions!
 

Aboveallislove

Super Moderator
kosdancer,
Are you really JUST going to be a freshman? Holy cow--are you on top of things (and an amazing writer--I wish 10% of my college students could write as cohertently as you do!) Your summary above should be a how-do pamphlet! You are going to definitely excel in college and whatever you do. Best wishes!!
 

kosdancer

Member
Thank you so much! I really am just about to start college, promise! I work very hard and it is nice to hear that it pays off!
 

Aboveallislove

Super Moderator
I actually have tears in my eyes for you kosdancer because I KNOW you must have worked very hard to get where you are and from your great note above, I know in my heart you'll do so great--not just academically, but taking care of yourself and doing yourself and your family proud. Shoot me a PM once you get started if you want to pick my brain from a professor's standpoint on anything. Good luck!!
 

janddburke

New member
thank you all so much for your help. I am all for her going away to school with certain limits of course. I am going to share all this feedback with her (we have a 4 hour drive to another school this week)
Kosdancer - may I ask which school you chose and which major?
you are truly wise beyond your years and i wish you much luck.
 

kosdancer

Member
Aboveallislove - thank you again! It's crazy to look back on all the preparation and learning over the last 18 years and know that it paid off and my parents have actually prepared me to go off by myself, but I definitely feel ready! And I may take you up on that - what do you teach?
janddburke - I chose UNC Chapel Hill, they gave me an amazing scholarship and I couldn't turn them down! It is a 7 hour drive for us, but I think it's a great opportunity to be on my own as well as being a little further than we wanted! I will be some sort of chemistry major, ultimately I want to research CF or possibly cancer. And thank you!
 

Aboveallislove

Super Moderator
Kos,
Sorry, I missed your note. I teach accounting and law (previously to undergrads and now to grad students via distance-learning), so a totally different area. I'm not at all a science person, but if there is anything practical I can every help with, please do let me know and best of luck!
 
Janddburke -- So glad to hear your daughter is on the college track. I learned so much well beyond academics by going away to school (UCSB). I went 2 hours away from home but honestly wish I went further. My homesickness and living in the past by going home on weekends delayed the adjustment. Having a CF center (and/or hospital if tune-ups are a reality) relatively close would be ideal. I had a laid back doctor who saw me once/year which I was fine with at the time but in hindsight I wish he or I was more aggressive. Although my college experience was extremely positive I lost a bit of lung function.

I have been an SAT tutor for some time now and just recently started an SAT-prep scholarship program for CFers. Please visit links below and let me know if your daughter is interested in raising her SAT score this fall. She could be my first scholar :)

Anyone reading this post, please "like" my Facebook page below and I'll add $1 to the fund! Looking to spread the word and help some CFers get into their dream colleges in the near future!
 

TarHeelBlue2007

New member
I'm reposting a reply I made a few weeks back to someone regarding college advice...their main question was about roommates, but I also gave a few pointers on college in general based on my own experience.

Kosdancer, I'll message you, but that's really cool what you're looking to do! I finished at UNC-CH in 2007 (chem major) and am now doing research too. You'll love it here!


"I had a very positive experience w/ my roommates at college, and with my roommates since, and w/ college in general. I think good communication and planning is key. Some specific tips:
(1) Let the roommate know up front what to expect. Supply them w/ the key info, including the fact that having CF is not a death sentence, so that they don't look it up from a biased source (i.e. crazy people on the internet).
(2) Discuss w/ your roommate about your treatment routine and what that will entail. One roommate I had couldn't study that well when my neb was going b/c of the noise...we simply mandated that certain times of the day I was free to do my nebs, and if he wanted to study, he could try to, but my nebs took priority. But, understand that playing loud music would have done the same thing, so it was more just roommates getting along than CF.
(3) Discuss w/ your roommate the importance of keeping your personal info (i.e. having CF) private...you should be able to tell people that you have CF if/when you want to, and they need to respect that.
(4) Be prepared for questions from roommates/new acquaintances/friends/friends of friends/hookups/etc about why you have nebs and pills and a cough. I often found that telling people "I have this lung thing...it's kind of like asthma," while technically not true, was enough for most people to understand, and to not be afraid of me coughing.
(5) Investigate campus health services beforehand, and note if there is a doc w/ CF training in town. If it's a smaller college, then you may be the first CFer to go to that campus health. A planned visit to meet a doc at the campus health service over this summer (maybe during orientation) to discuss your health needs might be a good idea. Getting a doc that will communciate with the CF doc that takes care of you now would be ideal.
(6) Have a discussion w/ your CF nutritionist about college food. Often, dining hall food is loaded w/ fat, which can be a problem for CF pancreas. Having a plan about which items are likely to be easier on your GI system will be good...I had success w/ waffles/cereal/fruit for breakfast, sandwiches or a single slice of pizza for lunch, and watching the pasta (it's loaded w/ oil so it won't stick together).
(7) Talk to campus academic services beforehand about an emergency plan in case you need to go into hospital. Better to have one hammered out early than to be making one while calling the dean on your way to the hospital.
(8) See if you can make your roommate help you w/ your stuff, but don't overburden them...they shouldn't have to feel like your caretaker. At the same time, don't resent them if they are trying to help you...it's easy to roll your eyes at a parent when they remind you to do some nebs, but a roommate who reminds you doesn't have to...they're probably just trying to help.

Feel free to PM me if you have any other questions. Cheers!"
 
T

tarheel

Guest
Aboveallislove - thank you again! It's crazy to look back on all the preparation and learning over the last 18 years and know that it paid off and my parents have actually prepared me to go off by myself, but I definitely feel ready! And I may take you up on that - what do you teach?
janddburke - I chose UNC Chapel Hill, they gave me an amazing scholarship and I couldn't turn them down! It is a 7 hour drive for us, but I think it's a great opportunity to be on my own as well as being a little further than we wanted! I will be some sort of chemistry major, ultimately I want to research CF or possibly cancer. And thank you!

Not that I ever wanted to go there or anything, hahaha.
I'm a Sophomore this year at a small private college
I love it- I think the most important thing to consider is how you "fit" at the college. For me, I basically knew when I visited for the first time that this was where I wanted to go to college. (I only looked at colleges that had my major- Graphic Design)
My other advice- they'll probably need a car for medical emergencies if they're not commuting from home. I learned that Freshman year (parents were CONVINCED I did NOT need a car. 4 calls of "You need to be in the ER ASAP" later... car!)
 
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