CF Awareness Month Blog #6 - Clinic

I've posted a lot of very in-depth blogs about my clinic visits and you can read those under my Health Stats tab. But I'll give an overview for this post, too.

Growing up, I went to my CF clinic every three months and once a year, I'd go to the 'big hospital' in Chicago to get my PFTs done on the big machine, chest x-ray, lab work...the works. I had the same doctor for most of my childhood (there was maybe a year where our insurance changed and I had to switch to this awful doctor, but luckily, I got switched back!) and she was excellent. When I was 17-18, she started talking to me about switching to the adult CF clinic. I chose a doctor who had experience with pediatrics and adults because I thought that would be a good transition.

My current adult specialist was referred by my peds doctor and I couldn't be happier with her. She's wonderful!! I met her when I was 18 or 19, the summer between my freshman and sophomore year of college. Tim came with me to that appointment to meet her and I went in with a giant list of questions because I wanted to make sure she knew about me and what I wanted for my health. She was so understanding and patient with me and answered all of my questions that day. Since then, six years later, she's still extremely understanding and full of information. She has taught me so much about my disease and how to take better care of myself. I respect her opinion greatly and I know that when I'm there, she has my best interest in mind and that we're working together to do everything to keep me healthy.

As for my clinic visits themselves, I try to prepare ahead as much as I can. Since my clinic is over 3 hours away, I really try to make the most of my time there. I make a list of questions ahead of time, write down anything I've noticed about my health since I've seen her last, I bring my big medical binder (which everyone always comments on how organized I am) to pull up any recent test results. I make sure to bring a large bag with me for samples or anything I accumulate while I'm there. I also usually pack lots of snacks - this last time I went as far as just packing my lunch bag - because I know I'll be there for a long time and I don't want to stop anywhere nearby (not a good neighborhood) to grab something to eat.

It can be stressful at times to make sure I get in everything I wanted while I'm with my doctor because she's not always easy to reach in between appointments. And I always hate when I go to clinic with a cold, because I feel like its not a true reflection of how I've been feeling over the last three-four months. But luckily my doctor is very understanding of that and she's always great at helping me through it.

Overall, my clinic visits are a big deal to me. It's where I can really see the results of my hard work, my compliance to my treatments and exercise, and get a feel for my weight gain. After I get my clinic results, then I make a plan and act on it for the next few months to see my results again. It's hard when it's only every few months (and so far away) when I go there on a 'bad day', but I just have to remind myself, it's not always about the numbers, it's about how I feel!! 

Eat More & Keep Running

That's what I've taken away from my doctors appointment today. I've been feeling fantastic lately: lots of energy, been coughing up way more mucus than I thought I could possibly have in my lungs (sorry, TMI) from all of my running, less bloating/stomach issues...all around very good! So I was anxious for my doctors appointment today to see if my PFTs would reflect the way I feel....of course they don't! They weren't bad, but they weren't 90 like I wanted.

My current FEV1 is 85% which is only slightly up from last time so it's considered 'unchanged' which is a good thing. As long as it's not going down, then we're good to go. My doctor and the guy who did the PFTs with me both told me that it's good that I'm not going down and I know they're right, it's just frustrating that I've been working so hard at running that I was expecting a bigger result. I was able to give a big sputum sample (sorry again for TMI) today which typically isn't me but I explained to her how I'm getting so much more up from all of my exercise and she was very happy about that. She said that being in the mid-80s could just be my baseline and that anything from 80-120 (someone please explain to me how you can have over 100% lung function) is considered normal so she's very please with where I'm at. I'm not mad about where I'm at because I feel excellent and that's what matters! 


My weight has gone down to 115lbs but we contributed that to the added exercise and burning calories, so I need to continue stuffing my face - even more than I do - so that I can add a few more pounds back on. It seems like, from looking back at my health stats, that 122lbs would be a good goal for me so that's what I'll shoot for. Any suggestions on how to keep weight on while exercising would be excellent. :-)


We also discussed my new job and that Tim and I have to move and depending on my insurance, my goal is to continue going to this clinic. I do NOT want to leave because I love my doctor and nurse, and I'm willing to make the trip as long as insurance allows it. I'll know more about this in a couple months once I get all of the new stuff straightened out. 


So, overall I'm going to keep running at least two miles 2-3 days a week and increase my calorie intake to hopefully gain a few more pounds before my next visit this fall. I'd say that's a pretty good visit. :-)

Annoying

Today's clinic visit was long, to say the least. My appointment was scheduled at 11am, so I left the house around 8:30 to make sure I left plenty of time in case I hit traffic. It wasn't too bad on the roads, so I got to the hospital around 10 and checked into the clinic around 10:15. I brought along my book, Catching Fire, to keep me busy and got about 120 pages of reading in because I didn't get a room until noon!! Of course, they put me in a room and I didn't see the doctor til at least 12:30. This is very unusual for my clinic, so I tried not to get too upset over it, but I was so tired of waiting and of course, very hungry!
My appointment results kind of followed the same trend: annoying. I'm not very happy with my PFTs this time; my first FEV1 was 2.64L which is about 84%, so down about 4% from last time. Now if you would have asked me yesterday what I thought I was going to get, I would have told you it would probably be about the same as last time, but I guess not. I did the test two more times, and they progressively went down a tiny bit each time which really made me irritated.
When I saw the doctor, she said that I sounded hoarse and that I had a 'throat-clearing cough' that I didn't typically have and asked me if I'd been having a lot of post nasal drip. I thought about it for a second and realized that I have been pretty stuffy and having some sinus pressure the past couple days. Yesterday, in fact, all day at work I had a pretty bad headache, so she thinks that my body's working to fight something off. I also had a slight temperature of 99.1 today, so that reassures me that I might be fighting something.
We decided that I need to increase my treatments as much as possible over the next ten days-two weeks to try to fight off whatever I may be catching. I'm hoping that it doesn't go down into my chest and hopefully just stays in my sinuses. If the increase in treatments doesn't help in the next ten days or so, or if I have an increase in thick, green mucus, then I'm going to give her a call and she'll start me on some antibiotics. Even though my lung function is down a little bit, we've decided to not start me on Kalydeco just yet, but to keep it on the back burner as an option for later.
Also, I've been pretty busy with preparing for Great Strides, working after school and tutoring that I've been kind of slacking on my running routine. I'm really hoping as the weather is warming up I won't have to limit myself to only working out on Tuesdays and Thursdays at the gym, but that I can start running outside after work/tutoring any day. So today wasn't as successful as I had hoped, but I can't get discouraged. I need to rid my body of whatever it's fighting off and keep up my running routine to prepare myself for my first 5K in a few months. :-)

Compliance, Doctors, Exercise & Great Strides

First of all I want to say how excited I am that I hit 200 days of compliance with my Vest and nebs yesterday!! Of course the past month or so there have been a couple days where I've only done one treatment in a day, but that was because of my little bought of hemoptysis which I'm happy to say has been gone for a while now. I'm still counting those days as being complaint because I was following doctors orders!

Today has been pretty eventful so far and it's only 3:15. I had the day off work today due a teacher institute day, so I've been taking full advantage of it. I woke up at my usual time of 5:45 today because I had two appointments this morning beginning at 7:45. I got my treatments done, finished my '30 days of blogging' post, got dressed and headed out the door. I had to be at the local hospital at 7:45 to begin my oral glucose tolerance test at 8am. This is a two hour test that tests for diabetes. Patients with CF have a higher chance of getting Cystic Fibrosis Related Diabetes, so my doctor wants me to get checked annually to make sure that I'm not developing CFRD. This is the second time I've had this test done and I'm really not a fan! I had to fast for 12 hours and if you read my post about irritating things, you'll know that you shouldn't mess with my food schedule. I couldn't eat breakfast this morning before the test, so I wasn't a happy camper, but I survived.

Just looking at this is making my stomach turn.

First they make you give a urine sample to make sure there's no sugars in you, then they take your blood and make you drink the most disgusting "orange" flavored glucose drink. (Every time I burp, I still taste that nasty stuff!) Then an hour later they take my blood to test my blood sugar, and then after another hour they take my blood one more time; so that's three pricks in three hours. The last time I had this test done, I think they had to poke me about 7 or 8 times because they kept missing my veins and I was not happy! This time, the lady was awesome and only had to stick me three times. They should be faxing the results to my doctor this afternoon and we'll discuss the results at my next clinic appointment in the beginning of March.

My second appointment this morning was to get a bone density (Dexa) scan. I've had this test done a couple times in the past also and it's to make sure that I am not developing Osteoporosis or the milder form called Osteopenia. I think it's kind of like an x-ray, but there's no vest or anything that I had to wear. I just had to lay down on the table and the machine scaned my legs/hips - very easy. A few years ago when I had it done, the results showed that I had Ostepenia so my doctors put me on 2 calcium + D vitamins a day. I had the test performed in December 2010 and it showed that I had normal bone density! I didn't get the official results from today's test yet, but I took a peek at the technician's screen and it showed a little mark in the green area, so I think my bones are still going strong!

After I left the hospital I met with Michelle from the Cystic Fibrosis Foundation who is in charge of the DeKalb Great Strides walk this year. We talked about the progress being made about local sponsors, donations and how many people/teams are signed up so far! Looks like we're doing great so far with everyone signing up, but now it's time to focus on bringing in those donations and getting some companies to donate/sponsor us for the walk. I'm really excited about the progress we're making, but there's still a lot to be done. I'm planning on going around the town on Monday to a couple different businesses to see if I can get some more sponsors and donations. Oh, and for those of you on Colleen's Friends & Family, the t-shirts arrived today in the mail, so I'll be getting those to all of you shortly. :-)

And because all of that wasn't enough, I decided to take advantage of the above-average temperatures today (about 50 degrees) and go for a run outside. I ran/walked the Great Strides route which is about three miles. It was harder and much windier outside than I thought it was going to be, but it still felt really good to get outside to run. It was also nice to run outside because I was able to cough and spit while running (sorry to be gross, but it's true). When I run in the gym, if I cough and bring up something, I usually just have to swallow it because I don't want to gross out the other people there. Running outside was excellent airway clearance and I think because I was running against the wind at some points, my lungs worked even harder than on a treadmill. I'm still going to keep running at the gym, but I'm going to try to keep increasing my outside running time each week, until it's warm enough to always be outside, to get myself ready for my first 5K. I've found a 5K in a local town that I want to sign up for that's June 16th - so I've got about four months to get my butt in gear!

Normal

According to my doctor, nurse and today's PFT results, I have normal lung function! WOO HOO! I had my clinic visit today at 11:00am, so I left my house around 9 to make sure I gave myself enough time. It only took me an hour and fifteen minutes to get to the hospital today - I think that's record time - there was no traffic! Of course, then I was 40 minutes early by the time I parked, but that's okay, got a little reading in.

I got in right away, they weighed me (same weight, yay!) then put me in a room, took my blood pressure (fine), oxygen levels (99%), and asked me a million questions about my medications and how I'm feeling (wonderful!). Finally, it was time for my PFTs. My goal for today was to get my FEV1 into the 90% range. The first test I did, I got an FEV1 of 88% - not bad, up from last time. I told the respiratory therapist (lady administering the test) that I was really shooting for 90s, so she was really encouraging and she said, "Okay, this time you'll get it." I tried again - same thing, 88%. Tried one final time (they always have me do at least three to get the average) and it was the exact same thing again, so I had to face  the fact that I wasn't getting into the 90s this time. The RT was still very encouraging telling me how 88% is still great, but I was still kind of bummed. When my nurse and doctor both saw my results, they were very pleased and pretty much just told me to keep up the good work!

I know I shouldn't be disappointed, but I kind of am. I have been really trying hard at keeping myself healthy - I was hoping the PFTs would reflect how I'm feeling. I'm at 144 days of compliance with my Vest and nebs, and I've been going to the gym twice a week for two or three months now. I feel much more than just 2% better. I'm definitely not going to stop anything I'm doing because I know it's working because I feel fantastic no matter what the PFTs say. I was glad to see an increase, rather than just maintaining, so I'm just going to keep pushing myself to keep going to the gym because I think that's what really making the difference. It also feels really good to be able to say that I have the lung function of a 'normal' person!

Tim and I have a very busy, travel-filled weekend ahead of us, starting as soon as Tim gets home from work tonight. I'm determined to keep my compliance streak alive even with all of our traveling, so as soon as I finish my PM treatment today, I'm packing up my Vest, nebulizer and accessories into the trunk to come with us on our little road trip across the entire state of Illinois. It'll be tough fitting in all of my treatments, but I can't let 144 days go to waste.

I hope everyone has a very Merry Christmas and I'll be sure to fill you in on all of our activities next week (adorable pictures included).

A Few Little Updates

How appropriate! Instead of Live, Laugh, Love
it's Live, Learn, Love! 

Well, I'm finally back to work as of Tuesday and it's been great being back. The kids don't start until next Tuesday, the 6th, so the past few days have just been with the staff getting things together. I am very happy to say that I will be working in Kindergarten again this year, half in the resource program and half in the special education program. This is kind of something new for me, so I'm definitely looking forward to it. I am going to be working with some wonderful people (staff) so I'm very excited about that, too. I've attended several workshops/seminars over the past few days that have gotten my 'educator brain' going again and it feels so great, I love it! I'm just looking forward to the kids starting and getting into the full swing of things again. Oh, and I'll definitely be keeping track of some awesome 'kinder quotes' again this year and posting them on here for your entertainment! :-)

As far as my clinical trial debate goes (see previous post), I finally emailed back Spring (the person in charge of the study) today. After talking to several people about my dilemma and getting lots of advice from people, I've decided that I really want to participate in the study, but I really don't want to take eight days off of work. It's not good for the kids, for the classroom teacher, or for me if I'm trying to get a job working in that school district. Someone suggested seeing if I could put off the study until next summer so that I wouldn't have to take any days off work - genius! So when I emailed Spring today, I asked if we could start the study in spring (haha), preferably around May. This way I'm not waiting an extra month til June when school is officially out, but by that time of the school year everyone's usually a little burnt out, so a day or two off before the end of the year isn't always a bad thing. I'm hoping that it's not too long of a wait to start because like I said, I really want to help out the CF community by doing this trial. I will update on here as soon as I hear something from Spring, so keep your fingers crossed that they are awesome enough to wait for me!

Finally, I forgot to mention this last week when I posted about my recent doctor's appointment. I asked my doctor about my gene mutations because I wanted to make sure I had the correct information; turns out I was thinking I had one mutation when I had a completely different one. So you're thinking, so what? Well, it actually makes a huge difference! 

To give a quick little background, to have CF you have to get a mutated CFTR gene from each parent (basically) to have CF. Some of those mutated CFTR genes have been identified and they're starting to do research to see if your gene mutation means that maybe you'll have a milder form of CF, or a more severe form, or more lung issues, or more digestive issues, etc. 

I found out last week that I have one of the less common mutations in the CF world when I was thinking that I had the most common one. So this makes a difference because of this post: One Step Closer! They are doing clinical trials for a drug called VX-770, but it is only for patients with the G551D mutation--which I have!!! I, for who knows what reason, was under the impression that I had a completely different mutation and that this drug wasn't for me at all....turns out I was completely wrong. I learned from the doctor last week that I was tested when I was about 3 for my two mutations (one from each parent) and they could only identify one - G551D. Then, when I transferred to the adult clinic when I was 18, my doctor tested me again, because they had made so much progress with CF reseatch, to see if they could identify my other mutation but they still couldn't. I was given this information after my doctor got the results five years ago, but I must not have written it down or something but I'm so glad I asked again. Of course, I didn't realize all of this until I got home from the doctors appointment, so I don't know what my doctor knows about the drug, but I'll definitely be asking the next time I go (in December)--kind of exciting for me to find all of this out. So, I'll definitely be keeping a closer eye on the progress of the VX-770 since I know that it's something that could work for me if/when it becomes available to CF patients!

Clinical Trial?

Yesterday while I was at my clinic appointment, my doctor mentioned something to me about possibly being eligible for a clinical trial. The study is to compare the antibiotic Tobi (which I'm already on) to a new inhaled antibiotic called Levaquin. Currently Levaquin is only available in IV form, but they're hoping to get it approved in the inhaled for because inhaled meds work much faster (according to the study lady, named Spring!).
I haven't signed up for anything yet, I'm just getting the information today and I'm processing it. Obviously it's something that I need to talk to Tim about because Spring said that we are not allowed to get pregnant while I am participating in the study. I think I can put that off for a good cause.
The study will be about six months long. I will be on either the Tobi or the Levaquin (the doctors will know what I am on, but I don't think I will) for 28 days, then I will be off for 28 days and that counts as one cycle. I will have to complete three cycles in the study. The part that I'm hesitant about is all of the clinic appointments. I will have to do an initial appointment to make sure I am eligible for the study while I'm off Tobi. Then if I'm eligible, about two weeks later they will start me on the drug. The first time I take the drug I will do it at the clinic to make sure that I don't have any negative side effects before they send me home to take it - so we're already up to two clinic visits, in other words, two days off work. Then every time I go off and go back on, I have to go to the clinic and get PFTs, blood work, fill out questionnaires and be evaluated by the doctor. In the end, it adds up to eight clinic visits over the 6 month period. I'm just afraid of taking eight days off work. All of the clinic visits will be paid for by the study people and I will get compensation for travel (and free parking!).
There are just several pros and cons, I'm not sure right now. Obviously, I have time to think about it, the lady was extremely nice on the phone today and told me that I can take as long as I need to think about it. I've always wanted to participate in a clinical trial; I think it's such a great opportunity for me to be trying out a new drug (maybe) that could help so many people!
I'd love to hear your input on what you think I should do, or if you've participated in a clinical trial before. This is all new to me so I'm just processing right now. Thanks for listening reading.

Doctor Visit & New Vest!

Had my doctor visit today and it went pretty well (took some pictures for you). I had my PFTs scheduled for 10 and then I would see the doctor at 11:30. So, to start the very long day, I woke up a little before 6:30 so I could get in a set of treatments and some breakfast before I left around 7:20. I got about 20 minutes into my drive when I heard on the radio that traffic looked terrible on pretty much every way into Chicago, so I was not looking forward to my drive! I got backed up in traffic a LOT sooner than I normally do and at one point I was going 30mph and it felt fast. Needless to say, it was a long ride, especially because I had to pee the whole way!! (Sorry for the TMI)

Lovely Chicago morning traffic

Luckily I left with enough time and I pulled into the parking garage at 9:30 and checked into 5E-Pulmonary Procedures around 9:45 for my PFTs at 10...just in time! My pulmonologist wasn't very friendly or encouraging today, so it wasn't very exciting doing my PFTs. Sometimes you get the people who really encourage you and tell you you're doing great, which really helps sometimes, but this lady was pretty crouchy - oh well. She left the room several times, so I took a couple pictures to show you what the full PFT machine looks like. (If she was nicer, I would have asked her to take a picture of me in it...)

The machine on the right is where I sit. On the left is where the pulomonologist sits
and gives me instructions on how to breathe. All of my breathing is recorded on the computer
and made into graphs. 

The blue piece is what I put in my mouth (and I have nose plugs)
and it records all of my breathing.

When some of the tests are performed, the door is closed. Right now the door is open.

I did pretty well, overall, on my PFTs. They didn't go up like I wanted them to, but the best thing is that they didn't go down. The percentage in my small airways went up significantly, thanks to Advair, so I'll be continuing that. I updated everything in my "Health Stats" tab, but here's a quick overview. 

FEV1: 2.70L - 86% which is up a little from last time :-)

FVC: 2.97L - 76% which is pretty much the same. 

I did about 8 different tests today in that machine. I did a few in the beginning, then they give me a nebulizer of Albuterol and she tested me about 4 or 5 more times after that. In the test I breathe normal for a couple breaths, then I take in a deep breath and blow it out as fast as I can, for as long as I can (meanwhile the pulm. is saying "BLOW, BLOW, BLOW!") and then I take a deep breath in at the end, and I relax. I did this about 8 times, plus several different other breathing techniques/tests in between. I was pretty wiped out after, but it felt good. I was able to cough up some lovely samples for them, which they always love. 

After my PFTs were finished around 10:30, I walked down to 4D-Pulmonology to see my doctor. I actually got in a little early to see her, which never happens, so I was pretty excited. (But I missed you, Penny!) 

My doctor's huge binder with all of my files! Lots of paper
work every time. 

My doctor was very please with me keeping my weight the same and keeping my lung function stable/slightly up. She pretty much told me to keep doing what I'm doing and to keep it up. I'm hoping that with continued exercise and compliance with my treatments (haven't missed one since July 30th!) that hopefully my numbers will start going up instead of staying where they are every time. We talked for a while about everything that's been going on and keeping healthy. We decided not to change anything that I'm doing because it seems to be working. As I mentioned before, since the Advair seemed to have a positive affect on my small airways, I'm going to be keeping that up. So I'll be back again in three-four months, depending on when I can get back in. Probably sometime in the beginning of winter. So after we were done chatting, which lasted a while (it's pretty amazing to have such a great relationship with my Dr!), I finally headed out.  

This is the view from the parking garage, right behind my car.
Of course, it's always packed so I had to park on the top level. 

Of course the traffic is still there when I leave at 1:45!

Ahhh! Now this is more like it. Back home! :-)

When I got home, I had a little package waiting for me....my new PINK vest! Here it is!

Losing Hope, But Gaining Motivation

Well, let's face it - it's more than half way through August, most schools have started this week or will be starting next week and I still don't have a teaching job...I'm losing hope. On Monday, I was all pumped about still applying because I was so sure that I was going to get one of those last minute positions that come up. So I emailed over twenty principals about job postings, and I've applied over and over each day online, and all of the responses I've gotten are ones saying, "Thanks for applying, but that position has been filled. Try again next year." They don't exactly say 'try again next year' but pretty much. It sucks. I'm more upset at the fact that I'll have to go through this entire (May-August) application process again next year. It's so frustrating! But, I'm very excited that I still have my teaching assistant job that I had last year, at the same amazing school. :-)  I absolutely love the school I worked at last year (it's where I did my student teaching, too). I'm excited to go back and see all of the kids, and start getting the educator part of my brain going again - it feels so good!

Another positive about me keeping my assistant job is less stress. I think that whenever I get my first teaching job ("maybe next year" -- man, I feel like a Cub's fan!), I'm going to be so stressed out about doing everything right. As an assistant, I still try to do my best with everything I do with the kids, but I definitely don't have as many responsibilities as a classroom teacher.

I think this will be a good time for me to really focus on my health and exercise. Not having the added stress of my own classroom is giving me extra motivation to kick my butt with treatments and exercise. I have a doctor appointment next Thursday - a week from today - so I'm really anxious to see what my PFTs are. I haven't been exercising like crazy, but I've definitely been doing more the past couple weeks than I ever have, so I'm hoping that's helped. I've also been completely compliant with my treatments for three weeks straight - which doesn't sound like much, but it's always been harder for me to get both treatments in on the weekends with stuff going on, but I haven't missed one in three weeks! :-)
If my PFTs don't go up, I'm going to be really bummed because I feel like I've been working my butt off. But I just need to keep doing what I'm doing and I think, and hope, that I'll start to see some awesome results. :-)

Doctor Visits 101

I had my doctors appointment today and it went pretty well, but before I go into more detail, here is some vocabulary and medical terms to help when I go into more detail. 

PFT - Pulmonary Function Test - A series of usually 3 breathing tests to assess my lung function.

FVC - Forced Vital Capacity - Measures the amount of air exhaled when lungs are full to when they're empty.

FEV1 - Forced Expiratory Volume - Measures the amount of air you can forcefully blow out in the first second of the FVC (http://www.getasthmahelp.org/PFT.asp) 

Chest X-ray - I get these to see how much mucus is built up in my lungs - I'll have to see if I can get a digital copy of one to show you.

Blood work - I get blood drawn annually to check my vitamin levels. When I was younger, I never took my vitamins and my levels were very low, but now I am taking them everyday thanks to my lovely pill organizer. Seriously, if I didn't get one, it would make taking all of my vitamins and other oral medications so much more difficult! (People with cystic fibrosis have a hard time absorbing nutrients and vitamins, so I am on a high-calorie diet and take lots of vitamins -A, D, E, and K- to maintain my health and weight.)

Having cystic fibrosis means that I need to see a CF specialist every three to four months to make sure that my lungs (and everything else) are doing well and that I'm staying healthy. When I was younger and in the children's clinic, I only had to go to the hospital for my appointments once a year to get all of my major testing done including my blood work, PFTs and a chest x-ray. My dad used to call this my "thousand-mile check up" because I had to go to the University of Chicago Medical Center in Chicago which was at least an hour away -without traffic - from where we lived. For the other appointments in the year, I was lucky enough to only have to go to a small clinic which was about 30 minutes away and not in the city. 

Now, I still see my doctor (and nurses!) every three to four months, but I am part of the adult clinic and have been since I turned 18. Since the number of patients in the adult clinic is much smaller than the pediatric clinic, I have to go into Chicago for every appointment, even if it's just to see the doctor. It takes me about an hour and a half from where we're living now, with no traffic, and it's about 150 miles round-trip. Today at the doctor, I didn't have to get any major tests do so I thought I'd be in and out, but of course I had to wait forever. I arrived about 45 minutes early because I never know how much traffic I'm going to run into driving into Chicago, so I always give myself an extra hour. 

Here's today's PFT results:

FVC: 2.98 L/second, or 76%, FEV1: 2.61 L/second, or 82%

This is pretty good, the number I usually look at is the FEV1 or the 82% which to me is a B-.

Last doctor's visit on December 9th, my FVC was 4.43 (113% = A++!) and FEV1 was 2.72 (86% - solid B). 

So I obviously decreased which I'm not happy about but I kind of expected, but I'm also getting over my nasty chest cold and I'm on antibiotics so I'm really hoping the next appointment will be a lot better. My last doctors appointment, I was very excited about my results and that's where I'd like them to be so I just need to keep kicking my butt and making sure I'm doing my treatments twice a day and coughing as much as possible to get everything out. I am planning on starting to exercise (which I should be doing, but I'm too lazy) this summer, so hopefully that will also help.

Hopefully this gives you a better understanding of why my doctor appointments are so important and why I do my treatments...and how much one chest cold can affect my lung function. I am always curious to know what "normal" people's PFT results would be just to see how I compare. 

Well, that's all for now. Tim's waiting for me to finish writing this so we can go bring some garage sale stuff to his aunt and uncle's house...he's reading over my shoulder waiting for me! :-) 

A Little...Well, a Lot, of Background!

Before I start randomly posting things, I figured I would give a little background about myself and cystic fibrosis. I am the middle child with two brothers who are 26 and 14, both without CF. My parents had no idea that I would have CF, so they were definitely in for a shock when I was born. Shortly after I was born, I went into surgery to fix the obstruction in my intestines. I lost a little weight due to the surgery, so I had to stay in the hospital until I was back to my birth weight. It took me one month to gain that one pound back, but since then, I haven't been admitted into the hospital!

I don't have too many childhood memories of doing treatments (aka: airway clearance--different ways to make me cough the mucus out of my lungs) or feeling like CF was a burden on my childhood, I feel like I had pretty normal upbringing. I played softball and soccer, was in Brownies for a couple years, and was on the color guard in Middle School where I got to go to Disney World and be in a parade! I do remember that at the beginning of every school year, in elementary school, my mom would give my new teacher a pamphlet about CF so they would have a heads up about me. Also, because I have to take digestive enzymes before I eat (to help digest my food), I had to go to the nurse everyday before lunch to take my enzymes. Today, this has just become second nature to me to take them anytime I eat. I don't leave our apartment without enzymes with me! I had doctors appointments every three months to see my CF Specialist, and once a year I would have to go to Chicago to have a much more elaborate appointment with full Pulmonary Function Tests (PFTs), a blood test, and chest x-rays. My dad referred to this appointment as my "thousand-mile check up." Growing up, the only treatments I had included my nebulizers and chest percussions which my parents had to do manually. Thankfully, I was a very healthy kid!

In middle school, when I was in 7th grade, I got my very first Vest. The Vest is a machine that does my chest percussions for me. It is literally a vest that inflates and hooks up to a machine that shakes to loosen the mucus in my lungs. The machine itself was very heavy, big and bulky. If I ever wanted to move it, I had to drag it around or have my dad carry it around for me. I HATED my Vest when I first got it. I felt stupid when I did it and I felt like it didn't do anything for me. Since it was much more convenient, my parents were much more persistent about me doing my treatments everyday. I came up with every excuse in the book not to do my treatments (I'm tired, I have homework and it makes my writing sloppy when I write, I want to hang out with my friends...)--the one I used most was, "Oh, I just ate. I can't do my Vest because it'll give me a stomach ache." As an adolescent, it was very hard for me to realize the importance of doing my Vest everyday for 30 minutes. It was a constant fight between my parents and I for a couple years. I think I just needed to figure out for myself that it is what I needed to do to keep myself healthy.

I got better with doing my treatments everyday in high school. Especially when my parents wouldn't let me hang out with my friends until they were done. At the time, I thought it was the worst thing ever, but I know it was for my health. In college, I felt so much more independent and knew that it depended on me, and only me, to stay healthy. I felt like I had to prove to everyone that I could do it myself, without the reminder of my parents, and I did! My lung function actually went UP my first year of college because I kept up with them so well. A few years ago, my doctor told me to start doing my treatments twice a day (and I thought once a day was hard!), 30 minutes on the Vest each time, plus whatever nebulizers I'm on (3-4 different medicines depending on the month). This has definitely helped keep my lung function in the upper 80s, which is very close to normal!

I currently go to the University of Chicago Hospital every three months to see my wonderful doctor, Maria Dowell, who is a CF Specialist for children and adults. The clinic is great and I love the staff! I had the same doctor when I was little, Dr. Lester (Which reminds me, I better email her some wedding pictures soon before Dr. Dowell gets on my case about her asking, again!), until I was 18. I still keep in touch with Dr. Lester and usually see her every year at the Great Strides Walks (an entire separate post). When I turned 18, I moved to the "adult clinic" with Dr. Dowell. It felt so good to move up to the adult clinic! Years ago there was not an adult clinic because many CF patients didn't live into adulthood, but now they have their own clinic in the hospital!

I could go on and on about my life with CF, but this would be REALLY long. You'll learn more about it through my other posts. Thanks for reading it all, hopefully it gave you a little better understanding of how I grew up.