I would really appreciate your help

[anonymous]

I have posted the following message on the teenage/young peoples boards but would also really appreciate the input of any adults:

Hi, my name is Joanne and I am a PhD student at Liverpool John Moores University. I am conducting a research project on the transition to adulthood for young people with CF. I will be looking at a number of transitions including: transition from school to further education, employment or training; transition to financial independence, transition to independent living and transition from pediatric to adult care.

Through my research I hope to find out what external factors affect this transition for young people with CF. The factors I feel would be important are, firstly the people around you such as family members and friends and secondly, places such as school and hospital. However, I would really like to give young people with CF themselves to opportunity to identify the factors they feel are important. I would really appreciate it if anyone with CF would reply to this message and let me know whether you feel the factors I have identified are ones that would influence the transition to adulthood. I would also really like to know if there are any other factors you feel would affect the transition that should be included in the study.

A later stage of this research will be to carry out interviews with young people with CF. Your responses will be used to help me devise the interview questions. If you want to respond but dont want this to be used in the study you can just state this. Your identities will remain anonymous at all times.

Unfortunately I will not be able to reply to any of your messages as to do so I would need written consent from both you and a parent/carer. You are not obliged in any way to respond to this message but I would be very grateful to anyone who does.

Many Thanks

Joanne

 

[Mockingbird]

The financial trasition was the most difficult. Especially since my parents insurance company ws threatening to cut me off. I didn't really ever have a problem with the other two transitions.

 

[anonymous]

For me all these transitions weren't really hard except for the financial part a little. When I got kicked out of my dads house at 18, I immediately applied for SSI and that has got me by for 3 years now. I recently got a full time job which I love but am debating on whether I have enough energy for it or if I need something simpler. Going from Pediatric CF care to adult care wasnt too hard but very sad. A CF child gets very attached to the people who care for him or her at the CF center, so I had to say my goodbyes without a choice.<img src="i/expressions/face-icon-small-frown.gif" border="0"> Anyway, I hope I explained some of what your needing.

 

[anonymous]

This is a long winded one so prepare yourself!

Something my husband keeps mentioning and seems to really bother him is the fact that in a Pedi clinic, you go for like a 2 hour visit and get rotated around from the doctor to the dietician, then the nurse, then do your PFT's with respiratory, then talk to a social worker, and anyone else they might think you need to see. When he transitioned to an adult clinic, He saw the nurse and doctor one day. Then he had to schedule another appointment to see the dietician (who was in another building of the hospital), then another appointment with the social worker in another building of the hospital for another day, then come in early another day to PFT's. It's like the clinic (and we've experienced this with 3 different clinics-one of them a military clinic) had no regard for the fact that even though he has CF, he does try to live a normal life-had a full time job, and now is a full time (plus) student. He doens't have time to come back on 5 different occasions for about an hour or more each time. For that reason, he was really pushing to go back to the pedi clinic. It was simply much more convenient and much much less time consuming.

I also have to agree that the financial aspect makes things difficult to. Not only is is difficult to transition off parents insurance to your own, or no insurance at all, but the adult clinics seem to be much less involved in assisting parents with insurance issues- and they arise often because CF is not a widely recognized disease. For example, it has taken us 7 appeals (in 9 months), and now we have a court hearing to fight our insurance just to get Boost Plus shakes. It could have all been avoided if our current clinic got a little more involved and provided some medical background from a nurse (the doctor wrote one letter and then gave up) and more letters from the doctor, a letter from a dietician-to the Insurance companies explaining the MALABSORPTION part of CF and why so many calories and fat is important and how a CF er eating 5500-6000 calories of SOLID food in one day is going to kill his already badly functioning digestive system. I know many other CFers do a lot better digestive wise (even with the use of digestive enzymes) when they alternate meals as a solid meal, and then a protein shake or a boost (ensure) plus shake that is already broken down and less work for the body to do. My husband has gained 10lbs alternating his meals (which he eats every 2 hours) this way. But the boost shakes cost us $375 every month and I am suporting us and putting him through school, so....

My husband took 2 years off after HS to work and then decided to go to college. He attended Washington State University Pullman campus for 2 years as a full time student, and then as a result of my military move to San Diego, he became an online student. Since he did his "lowere level" classes already, he is able to complete the rest of his degree online at WSU. This has been SO beneficial to him, he is still a full time student (took 20 credits last semester) but it is at his own pace and if he isn't feeling good one day, he doesn't have to go to school to get his homework or turn in his assignments-it's all online. In some of his classes in the first 2 years, his teachers graded not only on work but also on attendance. He had to re-take 3 classes he failed because he missed too many days. Even though he had a doctors note EACH and every time, 2 of the 3 teachers had a rule that you could have 5 excusesed or unexcuesed absences and then after that your grade was marked down 5%, even if the subsequent absesnces were excuesed with a doctors note. Well, he missed about 3 days a month on average (sometimes as many as 6-7) so you can understand why he failed. The third class he failed was because the teacher refused to give him homework to take hom eafter, about the 7th or 8th class he missed because she thought he was "skating" through. She didn't have a % markdown for missing classes, but because he didn't show up for a few classes and she wouldn't give him the homework assignment, he failed to turn in about 1/4 of the required assignments and therefore failed. Now, I am not sure if Mark ever disclosed his CF to the teachers (his advisor knew) because he is really secretive of it (I don't know why???) so he just took the failures and swallowed it and re-did the classes (which ended up costing us about $2000 for paying for classes he already took). THis really angers me because he wasn't skating by and although it is his bad because I don't think he disclosed his CF to his teachers (which prevents us from any recourse or getting our $$$$ back), a doctors note should still be good enough. I believe if he disclosed his CF, these % markdowns for missing class (yet still completing assignments) probably would have been protected by the ADA (Americans Disability Act). But that is all hindsight now.

Another thing about CF into adulthood, all the CF clinics we have talked to have been readily eager to inform us that most men with CF have Congenital Bilateral Absense of the Vas Deferens, thus preventing pregnancy via intercourse-yet they have no recommendations/solutions/insight as to what can be done about it for those who want children, other than "You should consult a fertility/infertility clinic". Many insurance companies don't have infertility benefits, and before couples shell out a few hundred for a consultation, they would like to know if being a biological father is ever going to be beneficial. After many frustrating years of researching, and by the suggestion of another user on this site who has a CF Fertility website geared towards female CF issues, <a target=new class=ftalternatingbarlinklarge href="http://www.geocities.com/murrensnaturemama/index.html">http://www.geocities.com/murrensnaturemama/index.html</a> I put together a website regarding male infertility, some background information and our personal struggle, success stories and the procedures that a man and his spouse must go through to become biological parents. <a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</a>. More information needs to be avilable to adults about these sorts of things, both male and female!

Hope this helps,


Julie (wife to Mark 24 w/CF)

 

[anonymous]

Joanne, one last thing, I see you mentioned that you will not be able to respond without conscent (HIPPA???). I would actually really like to talk to you about this research and can provide a conscent if you provide me a fax number or an address to send the conscent to.

Julie (wife to Mark 24 w/CF)