CF Awareness Month Blog #5 - Diet

As soon as I saw this topic, I shook my head and rolled my eyes...this has been a problem my entire life! Every doctor appointment growing up I just remember them saying. "We'd really like you to gain more weight." Easier said than done! I've posted lots of blogs on the topic of gaining weight, and it's really not fun. The way I see it, is that it's just as hard for me to put on weight as it is for a 'typical' person who wants to lose weight. Currently I'm trying to eat 3,000 calories a day, which may sound very easy. I used to think, "This part of CF is awesome, I can eat whatever I want." But I've really been trying to consume  much healthier 3,000 calories rather than crap...because I feel like crap (and I have to crap) when I'm putting junk into my body.

Basically, with CF, my body does not produce natural enzymes to break down food and absorb nutrients from my food. So if I don't take manufactured enzymes (Creon, Zenpep, etc) then everything goes right through me and it causes lots of bloating and stomach pains = not fun!! So before I eat anything, I have to take my synthetic enzymes to assist my body in breaking the food down and absorbing the nutrients. Even with taking these enzymes, my whole life I've still struggle with gaining and maintaining a 'healthy' weight, based on my BMI:

Generally speaking, your BMI tells you your current weight status. Here are the rankings and what they mean:

• Below 18.5 = Underweight
• 18.5 - 24.9 = Normal
• 25 - 29.9 = Overweight
• 30 and above = Obese (http://www.fitday.com/fitness-articles/nutrition/for-women/whats-a-normal-body-mass-index-for-a-female.html#b)

Right now I am 5'3.5'' tall and weigh 109lbs and using this BMI calculator, my BMI is 19 which is on the very low end of normal. My dietitian and CF doctor would like me to be at least 20-22 (which is 115-125 lbs). My goal is to juggle a full-time, physically demanding job, exercising several times a week, eating 3,000 calories per day and gain weight. To me all of those things don't go together, so I'm hoping that this summer when I'm not working, I'll be less stressed and burning less calories throughout the day which will help me gain weight...we'll see.

Just to give you an idea of what a typical daily diet consists of to achieve 3,000 calories:
Breakfast: 955 calories 
Scrambled Egg (78)
Two sausage patties (380)
Two slices of whole wheat bread w/ peanut butter (375)
8oz of 2% milk (122)

Lunch: 869 calories
Grilled pork chop - dinner leftovers (440)
Barbecue sauce (139)
Potato chips (150)
Yogurt (140)

Snack: 150 calories
One bag of popcorn (150)

Dinner: 1,059 calories
Bigger pork chop (587)
Barbecue sauce (139)
Corn (150)
12 oz of 2% milk (183)

Snack: 296 calories
Apple (126)
Caramel (170)

Total: 3,329 calories for one day - and this is on a good day. It's really hard to not feel like I'm eating all day long on days like this! Plus I'm burning a lot of calories at work because I'm on my feet all day long. Then subtract any calories burned from exercising that night, so this easily drops below 3,000 on those days.

I actually have an app on my phone and about once a week I'll track my calories for the day just to make sure that I'm getting enough. You can imagine how much food we go through in our house with me having to snack all the time!! It gets expensive eating like this! Can you see now why I shake my head and roll my eyes when this topic is brought up, it drives me nuts!! I feel like I am getting better about snacking on higher calorie things more often, it's just frustrating when I'm doing all of this and it's still not working, as in I'm still not gaining weight.

CF Awareness Month Blog #4 - Illness & Admissions

Thankfully, this is something I don't have much experience with. Throughout my whole life, I've been relatively healthy for someone with Cystic Fibrosis. For the past 6-7 years, I've done a much better job taking care of myself and being proactive about my disease which I think has really helped keep me healthier, too. I've never been in the hospital since my surgery as a newborn. I am absolutely terrified for the day to come when my doctor tells me that my infections can no longer be controlled by oral antibiotics and that I have to start IV antibiotics.

Right now anytime that I catch a cold or develop some type of infection, I usually go on a two week round of oral antibiotics, typically Cipro. (I also alternate each month taking an inhaled/nebulized antibiotic TOBI - done every other month so I don't build up a resistance) And each time I go to my CF clinic appointments, I have to give a sputum (mucus) sample so they can test it in the lab to make sure my mucus still susceptible to Cirpo and a couple different oral antibiotics. Over time, a CF patient's body can build up a resistance to antibiotics, then you no longer have them as a choice when you get sick. Once you're body has built a resistance to all oral antibiotics, the only other choice is to receive them through IVs.

As of my last appointment, my mucus is still susceptible to all oral antibiotics...thank goodness!

CF Awareness Month Blog #3 - $$$

Medication plays a huge role in my day to day life and keeps me healthy. I would not be as healthy/successful today if I was not able to afford my medication...I definitely have a love-hate relationship with insurance. Need it, gotta have it, but they're so annoying and have to make things complicated and difficult all the time! There is absolutely no way that I'd ever be able to afford any of my medications or medical care without insurance. 

Doctor visits, for example, without insurance: 1/2 hour (maybe!) with seeing an Endocrinologist this winter = $815.00 without insurance.
CF Clinic visit: $4, 229.00 without insurance -- I have clinic visits 4 times a year ($16,916/year). We do not pay this much, I do have insurance!

I have to take 2-5 digestive enzymes with every meal - I wouldn't be able to eat if I couldn't afford my enzymes. I take a several vitamins daily (that I pay for over the counter...take a walk down the vitamin aisle one day and see how much a bottle of Calcuim+D vitamins are...), oral antibiotics when needed (as long as insurance approves them), plus 4-6 nebulized medications daily along with my Vest. The Vest alone would have been tens-of-thousands of dollars. Not to mention my Pulmozyme which is several thousand dollars a month - without insurance!

With all of this said, I am very, very lucky be this healthy so that I can work full-time and have great benefits. I am able to afford every medication that I need, and all of my insurance deductibles/out of pocket fees. Do I want to have so much in medical expenses per year that I'm able to deduct them from my taxes...no...but if that's what I have to do to keep living the quality of life that I am now...then so be it. Things could be so much worse, and unfortunately there are CF patients who do...

What do I have to complain about? I can afford my medications. I'm happy. I'm healthy. I'm living a wonderful life. :-)

CF Awareness Month Blog #2 - The First Year

To be quite honestly with you, I don't have much information about how my first year of life went overall. Clearly I don't remember it so well, and it's not something my parents and I have ever had a discussion about. I'm not going to sit here and make up with I think happened, because that wouldn't be genuine. Unfortunately my parents and I don't have very many open discussions about my Cystic Fibrosis. I don't think it's something they've yet accepted. Not yet being a parent myself, I can only imagine what it would be like to discover that my newborn baby had a life-threatening disease. But I don't think I'll fully grasp the difficulty until I become a parent.

For those of you who are parents to a newborn/child with CF - embrace it! Educate yourself! Be involved in your child's care, answer their questions and if you don't have the answers, ask their doctor. Fund-raise, join Great Strides, reach out to the CF community -- I promise you, it's one of the most welcoming and supportive communities I've been privileged to be a part of! Yes, CF can be scary, but it doesn't have to be! We're all here to support you and your family! :-)

CF Awareness Month Blog #1

I was diagnosed at birth with Cystic Fibrosis on July 5, 1988. I did not pass my meconium (the black tar-like poop that newborns pass soon after birth), it was actually just stuck up there. When only a few hours old, the doctors told my parents that I needed to go into surgery to fix the blockage....And, I had to be transferred to another hospital in the area to perform the surgery. So my mom was still at the hospital while I was born recovering from giving birth, while I was being taken to a different hospital to have surgery -- I couldn't imagine how much of a wreck she was!

This is the best picture I have of my scars from
my surgery. I have three. Two tiny ones, and then
a weird shaped larger one right above my belly
button. (Don't mind the weird face, I was
cracking up about the height difference between
one of my friends and I!)

The surgery is called a meconium ileus surgery where they needed to go into my intestines and remove the blockage. I don't have too many details about the surgery itself, but as far as I know, it went according to plan. After the surgery, I did have to stay in the NICU (baby intensive care) until I was my birth weight again. From the surgery, I lost about one pound, so they told my parents I was not allowed to go home until very thankful for that!
I gained that pound back. It took me a month (so as you can tell, I've literally been struggling to gain weight my entire life!). Thankfully, after my parents took me home that August day, I have not been hospitalized since, which is a little rare for someone my age with CF and I am
Having the meconuim blockage is a tell-tale sign of a newborn having Cystic Fibrosis. I'm not sure if they performed a sweat test on me after that, probably, but my parents knew right away that I had CF. They had no idea what it was, and I'm sure they were terrified, because in the 80s the prognosis for CF was not very good! But luckily, I've stayed very healthy throughout my childhood, and now I'm doing a much better job of taking care of myself and keeping myself out of the hospital for as long as I can!

Cystic Fibrosis Awareness Month of Blogs

May is Cystic Fibrosis Awareness month, and I found this awesome picture when I searched "Cystic Fibrosis Awarenss" in Google images the other day. I think it's perfect for me to get back into blogging and I think it'll be interesting to share my story with my readers. Stay tuned, starting tomorrow I'll be posting daily blogs about my life with Cystic Fibrosis, each day is a different topic. If you're a blogger and are doing the same thing, please share a link to your blog in my comments section -- I'd love to read yours also! :-)

Clinic Visit

I had my quarterly clinic visit today, which kind of crept up on me this time because Tim and I have been so busy lately. Usually I'm really good about planning ahead with questions, but this time I just showed up! I haven't been feeling the greatest this week. I woke up Saturday with a sore throat and post nasal drip (my first sign of a cold). It's slowly made it's way through my sinuses and now it's in the naggy cough & into my chest stage. I've even noticed that my voice is pretty hoarse tonight -- that could be a combination of hours of singing in the car (to and from Chicago) and coughing!

The past few months I've backed off of exercise, pretty much entirely, because I have been trying to focus on gaining weight. Even though I haven't been running or doing the workout videos, but lungs have been feeling very well since my last appointment...up until this week, of course! I always hate when I'm sick for clinic visits because I feel like it's not a true reflection of how I really have been feeling. I hate seeing low (for me) PFT numbers just because I have a cold. And that's exactly what happened at my appointment today.

As soon as I got into a room, I had one nurse taking my vitals and the other setting up the PFT machine -- they never move this quickly. Oh, and before I got my room, they weighed me in the hall and I was a whopping 109 lbs...still! That means no weight gain since January, but at least I haven't lost anymore! Anyway, once they did my blood pressure, O2 level, and temperature, the guy was ready with the PFT machine. He handed me the mouth piece and told me to start, but didn't give me nose clips. When I asked for them, he said they don't use them anymore - I was totally thrown off, I've never done a PFT without nose clips before! Haha! Either way, I started and as soon as I was on my first inhale, he told me to take a deep breath in. I was caught off guard because I wasn't preparing for it, but I did it anyway. My first FEV1 came out at a 74! Yikes!!! My chest is feeling pretty tight, but I was really bummed to see that low of a number. So I coughed my brains out for a few minutes and while the guy was sitting at the computer, he told me to start whenever I was ready. I said, "Well, I'm ready when you are!" He just told me to start breathing and was not really paying attention - it was quite annoying. This time, my FEV1 was 78 - better, but definitely not where I wanted it to be. As I was coughing from the second test, the nurse took the mouth piece away and I asked if I could do it a third time, he said, "No, this is good enough." Again, I was annoyed. I know that I've done this test a million times in my life so maybe he thought I didn't need to be coached, but to me, it makes so much of a difference when the person is actually paying attention and encouraging me! I'm not blaming him for my low PFTs - I know that my lungs are not feeling well right now and that my numbers probably wouldn't be any higher if I did the test three more times, but I was frustrated that he didn't seem to care.

Anyway, after that was over, I met with the dietitian I met her for the first time last visit, and she's wonderful. She remembered everything we talked about last time (even if she just looked over my chart before she walked in the room - at least she showed interest!) and asked how things were going. I voiced my concerns about still have absorption issues and we came to the conclusion to try adding a probiotic to my daily regimen to see if that helps. She also told me to continue to eat as much as I have been. She said I'm doing everything right, it's just not working yet.
Then she told me that one of my vitamin levels (Vit D) is actually high!!! I've had low vitamin levels as a child and transitioning into the adult clinic, so my doctor up'd my vitamin intake a lot over the past few years! It's finally paid off! I can cut back on the amount of Calcuim + D vitamins I'm taking. :)
We also discussed my lack of exercise. I explained that I stopped running because I felt like it was a major factor in my recent weight loss, but the dietitian explained that I should still really try to exercise as much as I can because it's still very good for my heart and lungs, but just make sure to replace the burned calories as soon as I'm done. Looks like I'll be picking up my running again - which, I'll admit, I've definitely missed!

Finally, I saw my doctor. She, too, was actually just getting over a cold, so she understood how I was feeling. Before I could even say anything about my FEV1, she asked how involved the nurse was. I told her that he wasn't really paying attention and apparently I wasn't the only one of the day to complain. Fortunately, my doctor was actually pleased with my PFTs today. She said that my graph still looks great and symmetrical to my last PFTs, and that my lungs are doing very well considering how I feel. I was glad to hear that she wasn't concerned. She's not too worried about my weight either. It's something that we're working on. She agreed that the probiotic should help and that I need to keep up my calorie consumption.

So just a few minor changes from today's appointment: Cut back on Calcuim + D, add Probiotic daily, increase exercise and continue consuming around 3,000 calories a day. I'm really hoping this combination will be successful for my weight and lung function!

These are my PFT graphs from January 2013

These are my graphs from today - I notice a big difference in the
bottom (don't know that that's for), but the angle of the
top is very similar to the Jan. ones which is great.

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm compiling a list of positive, happy, lucky, fortunate things that are going on in my life or anywhere around the world.

• I'm thankful that Tim & I are still renting our house (in case there was any damage) and that we are not affected by this crazy amount of rain and flooding going on throughout the Midwest.
• A few weeks ago I wrote about how a pregnant cat wandered onto Tim's dad's property. Well this morning she had 6 little kittens! I'm so excited that we'll be able to have a little kitten this summer. I think I'm calling 'dibs' on the brown, black & white one. :-)
• Next week's Thursday post may come on Friday due to my next CF clinic appointment being on Thursday and then we're having a Spring Carnival for our school Thursday evening -- that's going to be a long, busy day!
• This isn't really a positive thought, but I wanted to share this again since I didn't get any responses last time: If you could as an adult CFer any question about their life, what would it be?