Ok, it's a novel, and it jumps around a bit but I hope it helps you out a bit, and if you want to email me, please feel free to do so at division902@hotmail.com
Ok, here goes a bit of history on my husbands CF and what his life has been like from when I met him 5 ½ years ago.
This is from his mother: He was diagnosed at 18months by a sweat test because he had failure to thrive, which was really noticed by his mother after she stopped breastfeeding him. At that point he was put on enzymes and his parents were instructed to give him daily chest physiotherapy. At first, it was only to be done in the morning to help clear the mucous that builds up. It was an hour session that was done with him laying across his mothers legs for about 15 minutes, then laying off the side of the bed with his head down for about 15-30 minutes and then more if he could tolerate it. After that he would cough a lot and be able to produce some good mucous out of his lungs, which he would spit out. They now have Chest Physiotherapy vests that cut this time in half and dont require a parent/family member to actually do it , the vest does all the work. He and his mom had a lot of sessions where he learned how to cough deeply (starting at about 24 months). This was done so he would be able to produce mucous for his doctors to test instead of them always having to swab the back of his throat, and so he would learn how to get this stuff out of his lungs when he felt the need to. There werent really CF meds back then other than CIPRO for a lung infection, so that is pretty much all he took.
A while after his diagnosis his parents split up, not because of him but because of previous marital problems. Before this happened, his mother stayed home with them 2-3 days a week and the other 2-3 days they would go to daycare so his mom could help out his dad in the store and to give them some time to socialize, he has a brother who is 2 years older than him-no CF, as well as a sister who is about 10 years older and also no CF. After the split his mom had to work full time and she was a part time college student, so the boys were in daycare pretty much every day from 6am-6pm (sometimes longer) from when he was 2 ½ until he started kindergarten. Looking back, his mom says she wished she could have stayed home with them, but she feels the early exposure (although not when he was a very venerable infant) to other kids, germs and the socialization really helped him feel normal.
Throughout elementary, Junior High and High school he was very active in sports, always participated in PE although he need his inhaler on occasion to continue to participate. The doctors were too fond of this (they have learned a lot since the 80s) and sort of discouraged this. He was determined though, and played on indoor and out door soccer teams until his Junior year in High school. He did not participate his last year because he wanted to focus on school. He continued to be athletic, doing cardio of some type 3 or more times a week, and in the summer after his Senior year he started lifting weights. He put on about 15lbs of weight (in muscle) that summer and he hasnt stopped lifting weights since that time. He has digestive issues (so gaining weight was a big success) and lung issues associated with CF, but manages them pretty well with his enzymes and the medications he now takes.
He was in the hospital a few times, and admitted as a toddler when they were trying to diagnose him. Then in his elementary years, and some JR high and high school he was in the hospital participating in studies for Cystic Fibrosis such as DNase (pulmozyme-which thins the mucous in the lungs and makes it easier to bring up, usually recommended to take BEFORE chest physiotherapy) and TOBI (nebulized [inhaled] antibiotic that is created in this form just for CFers). Other than being in the emergency room a few times for pneumonia he hasnt had any hospitalizations since he was a child.
I met him when he was 19 and at this time he was using just his digestive enzymes, and cipro (to fight the infrequent-usually 1 a year or less-lung infections he would get). He would see the CF doctor once every 3 months (he usually tried to drag it out longer, but I would drag him in there to see them) and sometimes once every 6 months if they said he looked great. When he was 22, he ran into a lung infection where he cultured pseudomonas and Staph Aureaus (bugs that CFers grow frequently) and for the first time he was put on a 28 day regime of TOBI, this time as a patient and not a study participant. That cleared up the infection and he wasnt on tobi, or any other CF related drugs until right after his 25th birthday this past October. He got another bug that he just couldnt get rid of so his doctors put him on 28 days on 28 days off (for 4 months) of Tobi. When he started to build a bit of a resistance to the Cipro (that they also had him on during this time) they put him on Colistin (colymycin Parentheal-you have to reconstitute it with normal saline and sterile water then mix it up and put it in the nebulizer). This is a harsher medication that some patients seem to have a problem with but he did just fine. It wasnt until 3 months into it and we were getting ready to go to invetro that we noticed around the same time he started this medication, his testosterone level, FSH level and LH level became non-existent (and we were just getting ready to do a sperm retrieval and use it for invetro). Now, this is just our experience so please dont jump to any conclusions, but please be cautious before using this medication because the label clearly states there have NOT been reproductive studies done, I am pushing for that with this company though.
Since October 2004, (right after his 24th birthday) we started doing chest physiotherapy not only in the morning but also at night (which we never did before) and then in November he got a vest www.thevest.com which he used for 2 ,10 minute sessions in the morning (a little break for him to cough, or he could do straight 20 minutes) and the same thing at night, he started using TOBI off one month, on the next, he was started on the colistin (which we have since discontinued, and his Testosterone, FSH and LH have returned to normal-but theres no telling if any damage has been done), and he was also put on a proton inhibitor for recurrent heartburn, something I guess he has experienced all his life but never really brought up to anybody. They tried prilosec, but he didnt really like how that worked for him so we are going to try a few others. They also put him on allegra because he does have some slight allergies that he had always attributed to his CF, but hat are relieved a bit with this medication.
All in all, he is pretty healthy and leads what I would call a normal life (what is normal anyways, really?). He has been a full time (plus) student the last three years and this fall will be his last year in college and he graduates with a degree in international business administration. His CF related therapies take about 30-45 minutes in the morning and 30-45 in the evening (they use to take a lot longer when it was manual chest PT), he goes to the gym M-F in the afternoons for about 2 hours to lift weights, and then 2-3 times a week in the morning, he will go to the gym on my base when he drops me off for work and do 30 minutes of cardio. He does eat a lot, and I mean a lot of food a day. He usually aims for getting about 4500-6000 calories in (this large amount started when he was about 19, the summer of lifting weights) and about 200-225 grams of protein in everyday. This sets us back quite a bit of money every month.
Through the military it might benefit you to look into the program for persons with disabilities (even though I see CF far from being a disability-sometimes anything helps) which will cover an additional $1000 over what tricare will cover every month. If you find you arent maxing out tricare, you might want to look into it for something tricare wont cover. Like, they wont cover boost shakes for my husband (Same thing as ensure instant drinks, just cheaper) but I am fighting that with tricare right now. They may cover pediasure or something for your little guy because the regulations are different with infants and children though. We are also on food stamps and that helps out a lot with out monthly expenses. I am not sure of your husbands pay grade and whether or not you live in base housing, but if you do live in base housing, they can only count the BASE pay and BAS (and I believe the separation pay or special pay if the two of you are geographically separated). That might be to your advantage if you live in base housing, we dont so they count by BAH and we almost werent elgible for food stamps, especially since its just the two of us right now. The military also has a program called family supplemental allowance which if you qualify based on all income and the size of the household, they just pay your husband that extra dollar amount every month in his base pay. Its the militarys attempt to keep military members above the 130% poverty line, and you can get up to $500 extra a month. They say, that while you get the FSS, you cant get food stamps also, but thats not true because you can still be getting FSS, and not be getting enough (since the max is $500) so you would qualify for food stamps. This may not seem all that important to you now, but if Logan does have CF, he will eat you out of house and home as he grows and its important to maintain his weight to keep him his healthiest.
My husband attributes his health to fact that he has always been WAY over the weight requirement for his height, which leaves him less susceptible to the colds and such that go around because his immune system is able to fight it off. He is currently 6ft and 185lbs but that fluctuates up to 195 and down to about 170 if he gets sick. He has had to work hard to get his weight that high (in his sophomore and junior year he was about 511 and only 145lbs, then his SR year he started focusing on his food intake and went up to about 165-170, then the summer of weightlifting he took it all the way up to 185).
If you have any questions to me that you dont want to post here please feel free to email me at division902@hotmail.com, just put CF in the subject line.
Julie (wife to Mark 24 w/CF)
Logan did taste different-he tastes saltier.