What's Cystic Fibrosis Clinic Like?

& of Course my Results:

I realized this morning as I sat down to start this blog entry that even though I go to clinic between 4-6 times a year, I have never REALLY explained it.


Cystic Fibrosis Clinic is where most CF patients go to talk with their doctor & care team about their health (various aspects of it).

A CF Care team is usually compromised of a:

• CF Doctor/specialist- who exams you, discusses treatments, trials, meds, overall health & prescribes anything you may need (exams, X-rays, meds, etc).
•  Nurses or P.As.- Assist the doctor with tasks & usually is the person you talk to on the phone when you are sick.
• Respiratory therapist - they help you do your breathing tests, discuss therapies, etc
• Physical Therapist (or Athletic Trainer)- helps you get active and gain/ or lose weight (whichever you need, usually with CF it's the former)
• Dietician- helps you focus on how you need to eat, choosing good foods, or tips to help with weight.
• Social Worker- Helps deal with emotional issues, maybe grief from losing a loved one with CF, coping with being in the hospital, juggling all the treatments, they can even help find financial assistance needed for meds & college.

My doctor doesn't have a social worker, he does answer & deal with most those problems himself, or seeks an outside source. ALL CF care centers/ certified clinics must have one, but Doc. B is a private practice. Not having the social worker is the only negative I have seen so far between his Private Practices & Clinics. 

CF clinics can take a long time & a good chunk of your day, especially if you have to drive far. For me here is a typical day when I have Cystic Fibrosis Clinic:

Drive 2 hours & 45 minutes to the extension office (if I'm going to his main office it's an additional 45 minutes).  When I arrive I get taken to my room right away (just in case another CFer comes in). We then have our weight, height, blood sugar taken, and pulsox readings done. We wait in our room, until we see the Respiratory therapist. We go to the testing room, where we do a couple different breathing tests, by blowing into a mouthpiece. There are 2 different tests they do. One checks your normal breathing pattern. But the other test is the one that I consider the single BIGGEST factor in Clinic. That's the breathing test where they check your FEV1 / FVC which can tell basically how much lung function a person has. It tells how much air we are able to force out in the first second, which is representative to our capacity. Then we wait in our rooms again for the rest of the team: Physical Therapist, Dietitian, and social worker. The physical therapist may do some exercises to see how strong you are, they may give you suggestions for ways to work out or help you get more active. The Dietitian may ask what foods you eat, offer some nutritional supplements to try, talk about better foods to eat, give you recipes or tips to help.

 [Note: I only see the dietitian & physical therapist maybe once or twice a year. I'm very aware of food/nutrition, working out, etc. They suggest tips & ideas, but I don't struggle a ton with either of those areas - besides Gastrointestinal & cerebral palsy problems which I see specialists for]

After you have seen the whole team, then Doc will come in, listen to your lungs, do an exam, and ask questions about your health lately. Talk about options for clinical trials (if you fit any), refer you to specialist for secondary problems, give suggestions, order exams, and make decisions on how you are doing (whether you need antibiotics oral or IV or are doing well).  Then usually on the way out I schedule my next appointment with the receptionist & we head out. 

Typically, an appointment start to finish takes two hours, so we bring books or stuff to do! But with the (average) 6 hours of driving, it makes for a long day. So Andrew usually goes with me. Which means every few months he uses his day off during the week to take me to docs. He does this a lot actually. He's been with me for GI docs, Arthritis Docs, Exams. They only thing he doesn't usually go with for is simple lab draws.If Andrew isn't able to make my mom or a friend goes with. I could go by myself, but that would super boring. I mean sometimes I go to appointments every single month, some months every single week.

Since we are so far from home, we usually have to eat dinner on the way (pack sandwiches or something) & then eat dinner out after the appointment. My appointment was at 4pm yesterday. We had dinner afterwards with a couple friends that live in that town, which makes the whole trip a lot more pleasant. We got home around midnight last night. So it was a late night, but a good day! 

So here were my Clinic results. I'm the same lung function. Doc said I dropped like 1% and my weight 103 lbs. 1% is not something to worry about, unless I keep trending downward. But, with my new online support workout/walking goal of 3-4 x a week (check it out on my FB), he is hoping to see if go up at the next appointment around Christmas! As far as weight, it's stable ish. But at one point I was around 108 lbs and super healthy. That is the goal!!!!! But, since I'm having REALLY bad GI problems again, it's been difficult. Doc is calling my GI specialist and another specialist to discuss all the problems & hopefully solve it! I told him about my eye problems & hope after my eye appointment that will be solved! So lots to tack care of in the next few months! But, excitingly, I may be starting another clinical trial soon! I will keep you all posted about it! YAY YAY YAY! Read why participating in Clinical Trials is so important to me & the future of CF medicine, right here! 

Clinics are always a little stressful for me, so I'm always thankful for every positive note at clinic I have! These appointments tell us how we are doing healthwise, which can be scary. I mean this isn't a regular doctor appointment where you get a script for an infection and your are better. It isn't like a regular doctor exam, where typically everything looks good & you go home with nothing to worry about. We go to the doctors so regularly, it is important to stay on top of our health, so it doesn't deteriorate. Every day we see CFers need lung transplants, or struggle to breath. We watch our peers & friends pass away while battling the disease. So clinics can tell us a lot. Big topics are discussed. Lung transplants, Ivs, hospitals, surgeries, research, etc.. So they are intense, even scary sometimes. But I love Clinics too, they help me stay on track & fight my CF. So while Clinics stress me out, I am VERY thankful for my CF Care team & Clinic!

I will keep on top of everything and we will see where I am in  few months! I've been walking every other day. Today marks my third walk so far. We did 1.24 miles in 27 minutes. It was a pretty hilly trail, so I'm just impressed I did the whole thing! Whew. Now, my sister & I are chilling at starbucks and studying.

 If you want to help me stay active, join the online support & post your workout/walk posts on my personal (if you are friend/family) or anyone can post to CF facebook page!  So far two of my cousins have posted, which is awesome! So thank you to everyone who is encouraging me! This is the biggest way I can make an impact in my lung function & overall health!

Much LOVE!