CT scan vs X-ray

At every clinic appointment, I have go to the lab for x-rays. This past appointment, my doctor expressed the need for a CT scan (aka CAT scan) after viewing my x-rays.

So, what's the difference? 

Chest x-ray: left lateral

X-rays are the most commonly used imaging technique. Your body is positioned between the machine and photographic film. The machine sends electromagnetic waves through your body exposing you internal structure. The level of radiation is not harmful but you should inform the technician if you are or might be pregnant. Bones, tumors, and dense matter will appear as white or light on the image.The process takes only a few minutes.

A CT scan takes a 360 degree picture of internal organs, vertebrae, and the spine. It is more similar to an MRI than an x-ray. You can think of it as a highly sophisticated x-ray. Depending on the reason for the CT scan, a contrast dye might be used to make structures more visible. 

Types of dye include barium- which is used for gastro-intestinal CT views or iodinated which is used intravenously to highlight the vessels and tissue changes.

Chest CT can demonstrate various lung disorders:
-old or new pneumonia, show advancements of pneumonia
-tuberculosis
-COPD/emphysema 
-inflammation or other diseases of the pleura, the covering of the lungs
-diffuse interstitial lung disease

CT machine at BUMC

-lung cancer
-congenital abnormalities.

The machines used for CTs and x-rays also differ. The CT machine looks like a big donut and you lay on a bed that runs you through the center of it. There are receptors and x-ray tubes that spin around you and make a humming sound as they take pictures of your organs. 

Image captured: 

Radiation exposure of CT scans is higher than other forms of imaging.


Please remember, I am NOT a physician, radiologist, or in the medical field. I write based off of my knowledge and experience. 


Resource

The Fault In Our Stars-3 half K giveaway!

Thank you to all of July's visitors!  To celebrate 3,500 visitors this month, I'm giving away a brand new copy of The Fault In Our Stars! To enter to win, like my cycling page and comment "entered to win."

 

www.Facebook.com/rebeccascyclingjourney

 

The winner will be announced by midnight CT this Thursday   

 

 

 

 

Good luck!

-B.

How I Clean My Neb Cups

It is extremely important to properly clean and store your nebulizer cups. It can be time consuming, and if you're like me (college student status), it can be difficult to find a clean, dry, safe place to store them. Here's some information about how I clean and store my nebz.

According to Pari.com, a leading company for respiratory equipment, the cups are designed to last about 6 months from the first use with proper cleaning. Some neb cups have timestrips to remind you when to replace them. Depending on what medication you're putting in the cup, the lifespan can be shortened. For medicines like Tobi, specialized cups are available. I highly recommend that when you get sick, you replace all of your cups to better control the bacteria and prevent a relapse. The hospital I go to offers 3-4 cups per visit. I am very adamant about grabbing a few extras to have around just in case.

Purchase one like this here

Cleaning: Immediately after the  every treatment rinse the nebulizer thoroughly. This will prevent buildup of leftover medication and saliva. You can either allow them to soak in warm water for 5-7 minutes and hand wash them, or toss them in the dishwasher.  You can purchase a basket like the one pictured on Amazon, at Target, and other nearby stores. They're generally used for baby bottles, but I find that they are also beneficial in storing the neb cups to avoid having them fly throughout the dishwasher. Always place the basket on the top rack. If you place them on the bottom, you run the risk of leftover gunk falling from the top rack and melting them! DO NOT wash the tubing! *Please make sure your dishwasher is cleaned regularly. You can find instructions on how to do that here.* Be sure to rinse with STERILE water! Allow them to air dry if you choose the handwash method.

Disinfecting: Every other day, after you've finished your nebz and cleaned them, you can do a low level disinfecting. Pari suggests the following mixture:

Mix a solution of 1 part distilled white vinegar and 3 parts warm tap water in a clean bowl. Soak the nebulizer parts (except the tubing and mask) for 60 minutes, then rinse thoroughly.

Alternatively, mix a solution using Control III® Nebulizer Disinfectant and follow manufacturer’s instructions. Rinse thoroughly.

You can also disinfect your nebulizer parts by boiling in a clean pot of water for 10 minutes. Be sure to keep a close eye on them while you're boiling them...you don't want them to warp or melt because it can decrease their effectiveness. 

According to CFF.org, you can:
boil your nebs for 5 minutes, microwave for 5 minutes, dishwasher for 30 minutes, electric steam sterilizer OR you can use the cold methods: soak in 3% hydrogen peroxide for 30 minutes, soak in 70% isopropyl alcohol for 3 minutes

Some compressors have filters made into them. It's always best to change these when you notice they're starting to become discolored, usually a yellow color. The recommended time to change your filter out is every 6 months.

Educational post, right?

WRONG. We all have lives, families, school, jobs, and other duties. While it would be great if we could do this EVERY day, it is seemingly unreasonable. I highly encourage you to do the aforementioned cleaning instructions, however, there are ways to adapt them to accommodate...LIFE.

-Designate your neb cups for certain medications and label them. You can use masking tape, a label, or just a permanent marker to identify what's flowing through your cup. Albuterol, hypertonic saline, Tobi, Pulmozyme, etc

-After each use, rinse thoroughly with hot water. Allow to air dry. 

-Store them in an air tight container until the next use

Clean and disinfect them as the aforementioned instructions recommended once a week. 

Breathe Easy,

-B.

PARI FAQ

High Sodium Tips

CF affects the body's epithelial cells- cells that are found in sweat glands, pancreas, and lungs amongst other places. A mutation in these cells causes an imbalance of water and salt in the body.

CF bodies secrete more sodium in their sweat than an average person. Because there is a decreased amount of salt and water outside of the cells, the mucus becomes very thick and difficult to cough up.

It is important for people with CF to consume higher amounts of sodium. This can prove difficult for many. A couple of suggested items are:

Gatorlytes- 780 mg of sodium, 400 mg of potassium

360 mg of sodium, 13 mg of calcium, 25 mg of magnesium, 100 mg of potassium

Clif Shot Bloks are delicious and have 50 mg of sodium per serving. They're inexpensive and I bet kids would love them- just like gummy snacks! They come in a variety of flavors like black cherry, strawberry, mountain berry, citrus and more.

Be sure to discuss any new items such as the above mentioned to your doctor and/or dietician for more information regarding your health. If you have elevated potassium levels or other complications, it may be best to ask your doctor if these are right for you. When consuming these, make sure adequate amounts of water are also consumed. 

Google this

It's important to note that what you read on the internet isn't always true. Shocking, I know! With the information and advice posted on my blog, I encourage you all to take the information I relay to your doctor, respiratory therapist, social worker, etc. (This is CLEARLY stated at the top of my blog page as well as throughout each post)

When receiving a diagnosis as severe as Cystic Fibrosis, the mind is naturally curious. Technology has become our primary source of information, but with this, we must use caution. Doing a simple Google search can be beneficial when searching from credible sites such as CFF.org When looking for educational information, these tips can help:

What is the host site? (blogger.com, a school ".edu," etc)
Who is the author? (An educator, advocate, researcher, physician, student, etc)
How recent is the source? (As well all know, information regarding Cystic Fibrosis specifically changes constantly, information from 10 years ago may not be applicable today)

While the internet is indeed a great resource, it can be damaging at times. Below are a few CF websites that are reliable.


http://www.cff.org/
http://www.nhlbi.nih.gov/health/health-topics/topics/cf/
http://kidshealth.org/teen/diseases_conditions/digestive/cystic_fibrosis.html



-B.

You are what you eat...

According to the Cystic Fibrosis Foundation website: 

CF Diet – In CF, a high-calorie, high-fat diet is vital for normal growth and development in children, and offers adults a way to maintain optimal health. The dietitians at CF Foundation-accredited care centers work with patients and their families to map out the best diet for each person.
Nutrition and general lung health are closely linked. People with cystic fibrosis may need extra calories to compensate for the malabsorption of nutrients. These extra calories also help to meet the greater energy needed for breathing. In fact, for children with CF, extra fat calories are good for fueling normal growth and development. 

There are right and wrong ways to maintain a high calorie diet.

Calories do not have to come from bad sources. There are ways to increase fats and calories while also increasing nutrition. There is a direct correlation between diet and health. The food that we consume serves as information to our body...when the body receives the information it determines how to use it. By sending our body incorrect information, we can confuse the metabolic process causing our health to decline. The nutrients packed in food enables the cells in our body to do their job. Food plays an important role in our growth, development, and maintenance. Without proper nutrition, the aspects of functioning can be negatively influenced. 

Here are some good choices that both incorporate high calorie and good fats:

Peanut butter- rich in protein, healthy fats, and aids in muscle mass buildup and cardiovascular health. Just two tablespoons of peanut contains appox 200 calories and upwards of 16g of good fat.

Avocados- rich in B6, C, E, K, potassium, magnesium, and folic acid and they have approx 380calories and 35g of fat (medium to large California avocado).

Olive Oils – have 124 calories and 14g of fat per tablespoon. The Mayo Clinic has findings that some research shows that MUFAs (monounsaturated fatty acids – healthy dietary fats) may also benefit insulin levels and blood sugar control, which can be especially helpful if you have insulin problems related to diabetes.

Eggs – 1 large egg contains 70 calories and 5g of fat with 6g of protein. Even though eggs sometimes get a bad rap for higher levels of cholesterol, the tradeoff is they are rich in natural B vitamins (B2, B6, and B12).

Nuts- help control blood glucose levels, rich in fiber and protein. One ounce has about 160-190 calories and 16g of fat. Mixed nuts are both rich in vitamins and minerals. My only concern here is that nuts are also high in dietary fiber, so watch out how many you consume in one sitting!

Bananas- rich in vitamin A, thiamine, B6, fiber, folic acid. Bananas have almost doubled the calories of other fruits- a large one has about 120 calories.

Granola- (w/nuts, whole wheat, molasses, honey)  loaded with fiber and essential oils, one cup is roughly 597 calories.

Dried fruit- loaded with calories, about 400 in one cup!

Various fruits and vegetables have calming effects on the cells, anti-inflammatory properties, and serve as antioxidants.

Health benefits of various fruits and veggies:

Carrots- beta carotene, anti-inflammatory effects, reduces bile and fat in the liver

Oranges – 1 large orange has 65mg of vitamin C, which helps push glycolysis and strengthens hair, nails, arteries and veins.  

Watermelon- vitamin C, antioxidant, muscle relaxant

Cucumber- vitamin K

Kiwi- natural enzymes (proteases), sleep aid

Apples- boost immune system, blood sugar regulation

It can be really hard to go from eating a ton of Twinkies, ice cream, and burgers to controlling your diet. I've slowly transitioned from junk food to healthy food with junk treats!

I try to eat kiwis and pineapples daily, they have natural enzymes (proteases) that break down the proteins. I've also started drinking Bolthouse Carrot juice mixed with orange juice. This really alleviates the late night coughing spells since carrot juice is super high in Vitamin A.

Having CF doesn't justify eating whatever you want. If anything, we should be more cautious with what we put in our body. Our bodies are sensitive and already weakened, by consuming so much processed junk, our bodies are working twice as hard to break that food down and maintain a pattern of homeostasis. When it comes to empty calories, we aren't really benefiting ourselves.

Know what you eat. Here is a great website to be able to look up different foods and their nutritional content. Let’s see what you all come up with for healthy choices!

http://nutritiondata.self.com/

Good eats! 

B.

Going on a vacation?

Paris, France 2007

It can be overwhelming, you know, living with CF and trying to maintain a normal life. We all like to live as carefree as possible, enjoy good food with great company, and take a nice summer vacation with our loved ones. I LOVE to travel. Unfortunately, I won’t be doing much of it until I finish my degree. I’ve been to France, Germany, Hawaii, Washington, Missouri, Florida, and Oklahoma (does that one REALLY count?!).

Like most people, I procrastinate. On everything, especially packing! To ensure you enjoy your vacation as much as possible, and with as little worry as possible, I’ve composed the following list to help.

-Talk to your doctor about where you’re going, when you’re going, and how you’re getting there. Some destinations (international) require additional vaccinations. In addition to that, your doctor can provide you with a certified letter stating your medical condition and a list of medications that you must take. This comes in handy at the airport when you take your nebulizer on board, medications, etc.  Organize your doctor’s note, list of medications, emergency contact list, and insurance documents in a folder and secure it. Ask your doctor about a Flutter (replaces the use of the Vest)

-Create an emergency contact list: doctors, nurses, family members, etc. Also be sure that those who are staying behind have a way to contact you.

-Make a list of medicines, supplies, snacks, etc. that you will need to take with you. If you have medication that needs to be refrigerated, invest in an insulated cooler or make prior arrangements for the flight, hotel, etc. Make sure all medications retain their original labels. Order refills before you depart to ensure the correct quantity of medication while you’re away.

-Pack extra tissue, toilet paper, lysol wipes and hand sanitizer

-Proceed with regular packing: clothes, sunscreen, walking shoes, sandals, extra towels, headphones, phone chargers, books, etc.

Resources:

The TSA offers special accommodations for those with medical conditions

Information for using o2, nebulizers, etc while in transit

I invested in a Pari portable nebulizer in 2007 and it is amazing. It comes with a car charger, carrying case, and wall charger. It's about the size of a cassette player (remember those?) and is very quiet when in use. 

Normalcy.

...Where to begin? 

Cystic Fibrosis is often referred to as an invisible disease. Those affected may look fine, sound fine, and overall, interact and perform like "normal" people. However, we are far from it. 

Our bodies work hard to simply breathe. We have to consume about 2.5x the calories of a "normal" person in order to maintain our weight. This means eating when we aren't hungry...forcing something down. In addition to that, a handful of pills with each meal, breathing treatments to alleviate pressure, mucus, and congestion throughout the day. Exhaustion. I can't speak for others, but I am always exhausted. Once I stop and let the daily momentum subside, I become aware of restlessness, fatigue, pain here and there. I have nerve damage from PICC lines. Shooting pains up and down my arms are a regular occurrence. Coughing fits that last from minutes to hours, the inability to comfortably sleep.

I recently received a message from someone regarding my personal, work, and exercise involvements. For those of you who follow me on IG or FB, you are aware that I am training for a 60 mile bicycle ride for the CF foundation. 

Why?

Why do I push myself beyond my limits? Why do I willingly wreak havoc on my lungs, joints, and mental processing? 

Because I want to be normal.I don't want to be treated any differently due to my genetic makeup. I don't want to be seen as using my illness as an excuse to passively live life. 

Yes, I am aware of the consequences. Yes, I have done too much and landed in the hospital. 

I've been hospital free for almost 1 year (last visit was only 4 days, no IV antibiotics at home, transitioned to oral upon discharge). 

I know my limits, but I also know my exceptions. 

Some inevitable day, I will succumb to the disease that so quietly ravages my body. The bacteria that are dormant can flare up and rob me of my life. 24 hours in a day and I strive to make every hour count...work...work harder...keep working, push, push harder. 

Every unexpected cough, every fuzzy x-ray, every "antibiotics for two weeks, CT scan in a week, follow up in a month" instills the fear that this it "it." The infection that will scar my lungs, require extensive IV antibiotics...

So,

please don't tell me I "do too much," or I'm "pushing it." I know my body. I know the consequences. I know that someday I may not be able to casually walk up a flight of stairs, much less ride a bike.

I know.

Sincerely,

B.

Pulmozyme Patient Assistance Program

Pulmozyme was one of the first medications I was prescribed after my diagnosis! Back in the day, they used to let us mix it with albuterol to decrease time spent on treatments. I also used to save the tops of the vials and turn them in at the clinic for prizes like gift cards!

If you take Pulmozyme, there is a great resource available to you. Genentech offers a co-pay program to help with out of pocket expenses. I just signed up and it took a few minutes. You enter your demographic information, answer a few questions, and you can print your co-pay assistance card immediately after your submission. The discounted amount varies depending on your insurance type, income, household number, etc. If you are on Tricare or Medicaid you may not qualify for this benefit.

Sign up here !

Hope this helps!