Cystic Fibrosis Awareness

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Hello friends, Alanna here! As you know May is Lyme disease awareness month but it is also Cystic Fibrosis awareness month as well. This is something I am so incredibly passionate about getting awareness out there for. Because of one family I have grown to love so deeply and consider as my own family. I have adored them from the moment that I met them. They are so loving, so kind, so passionate, and love life to its full potential.

Today I have the privledge to share this incredible family with you all.

After you read this I know you will fall in love with them just as I have and hopefully learn why getting awareness for CF is so important. That being said here are the stories of THE RUDD FAMILY:

Aimee’s Story:
THROUGH THE EYES OF A PARENT

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Twenty seven years ago we were told “Your child has Cystic Fibrosis.” What does this mean?? What is wrong with my baby girl?? Is she going to be ok??
What this meant 27 years ago was that our daughter had a life expectancy of 18 years. She would never get married. She would never have children. She would have a very difficult life. The picture that they painted was a bleak one.
After my husband and I learned about the disease our family motto became “no regrets.” We were goingto give our daughter the best life we could. We did treatments faithfully, we gave her her medication with out missing, and we lived life to the fullest. If she only had 18 years to live we wanted it to be the best 18 years she could have.
Three years later she was blessed with a sister who also had cf. What a team they made. They could relate to what each other was going through. Five years later they were blessed with a sister who didn’t have cf. What a cheerleader for her sister she became.
As we raised our family we taught our children they could have anything in life they wanted. Cf was something they had, it was not who they were. Cf was something we had to deal with but we could still have fun. We could still travel. We could still be a family. We just had to make adjustments. No matter what happened in the end we would be able to say we have “no regrets.”
Our belief that Families are Forever is what made this all possible. We will be together forever. We all challenges in life and ours just happens to be cf. our attitude became one of gratitude. We have learned so much from living life to the fullest. From counting our blessings, from having a loving Heavenly Father who hears and answers our prayers. We are a very blessed family and we will always count ourselves blessed to have our amazing family. The glass is always full!! There is always something to be grateful for.

Nicole’s Story:

THROUGH A LITTLE SISTERS EYES

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I’ve been working on a presentation this week for school about Cystic Fibrosis.
It has made me reflect about all that I’ve learned growing up with this disease.

When I was younger I always wanted to be like my sisters. They got to do things that I couldn’t do and talk about things that I couldn’t relate to. I always wished that I had CF too. I never understood why I couldn’t stay in the hospital with them or why I couldn’t take the same pills as them! As time has gone on, I still to this day want and wish to be like my sisters. I have never met two more amazing and courageous women.

With the knowledge I have now of CF, I have come to appreciate them more. I personally don’t know how CF feels or how different it would feel compared to my body right now, but I have seen CF’s effects with my sisters through mine own eyes. I have had the opportunity to be by their sides giving them all my love and comfort with every hospital stay, surgery, appointment, and especially with the good as well as the bad days. I cannot even fathom what it would be like having to stay on top of their everyday schedule that they go through and yet, they are the happiest people you could ever meet. Their outlook on life is so inspiring and hopeful. I am always striving to have their attitude and love of life like they do!

Being the youngest with two older sisters, it has been terrifying knowing that there is that possibility of not having them throughout my entire life. I mean they’re my older sisters! They’re suppose to be here forever! Every moment that i’ve had with them and continue to have with them are the moments that I hold closest to my heart. My love for them is unexplainable. I have no idea how to put it into words. They have made me the woman who I am today and have helped me have the positive outlook on life that I do.
These two girls are my heroes. I have no idea how I would have gotten through life so far without them in it. I feel so humbled and honored that I was chosen to be their sister and go through this mortal journey with them as my best friends. They are both one of a kind and nothing short of miracles! I am so grateful to have them here with me this day especially with all of the rocky scary roads that have had to go through.

I love you mand & nat and am PROUD to call myself your sister 💕

Natalie’s Story:

THROUGH THE EYES OF A CF FIGHTER

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“But you don’t look sick.” I hear it from people who mean well all the time. And unless you have a chronic illness, you probably don’t realize how hard it is to hear those words.

Cystic Fibrosis takes a toll in ways that go unnoticed by most. The people closest to me notice the days I move about more slowly. Or the way I have to stop mid sentence to catch my breath. Or the dark circles under my eyes that are evidence of a night spent awake coughing & fighting through chest pain. Or how difficult it is to work full time due to constant exhaustion. They know the emotional havoc that having a terminal illness wreaks. They know the amount of time & effort I put into staying as healthy as possible. They understand. They experience these things with me. It affects their lives too.

But most people don’t see these things. And it’s not their fault, really. How could they possibly know about the hours of treatments it takes to keep my lungs functioning? Or that every day I need to take pills to help digest my food, control digestive pains, fight off infections, maintain healthy vitamin levels, & help every cell in my body work the way they’re supposed to. How could they understand that taking care of my health is literally a full-time job… with no breaks, no holidays, & no vacations.

The thing is, people can’t possibly know those things unless we tell them. And that’s exactly what CF awareness is about — raising awareness about not only about our most difficult trials, but also about our daily lives & our determination to make our lives as fulfilling as possible.

My daily life consists of hours of breathing treatments, airway clearance, exercise, over 30 pills, & that is just the regular maintenance that it takes for me to stay healthy(ish). & this is a big part of why I have a hard time hearing that I “don’t look sick” or when people think I am “overreacting.” Because as normal as I may appear, the truth is that I have a progressive genetic disease. And it actually takes a LOT of work to look this mediocre. 😜

Don’t get me wrong though its always a motivator to hear I look healthy💪🏼I hope you feel free to ask me any questions you may have💜#cfawarenessmonth

Mandie’s Story:

A DAY IN THE LIFE OF A FIGHTER

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12am: sleep
6:15am: wake up
6:30am: morning routine:
-vest & albuterol, hypertonic, DNASE treatment = 35 min
-set up/take down = 10 min
-cleaning equipment = 10 min
-TOBI treatment = 35 min
-sinus flush & “morning pills” = 15 min
8:15am: dress, breakfast, misc
8:30am: leave the house
9:00am: exercise
11:00am: protein shake and “midday pills”
12pm: shower & get ready for the day
1:00pm: lunch
2:00pm: afternoon vest treatment = 35 min
setup/take down = 10 min
3:00-5:00pm: errands/pick up RX’s/dr. appt/call insurance/organize pills
(Whatever exists on that days agenda. Not a day goes by that I don’t have to do something in regards to my medical care.)

5:00-5:45pm: prep dinner
6:30-7:15pm: eat dinner, “evening meds”
8:00pm: nightly vest treatment = 35 min
setup/takedown = 10 min
TOBI treatment = 35 min
nightly routine & “bedtime meds” = 35 minutes
10:00pm: sleep

Treatments = keep lungs clear and free of infection.
FOOD = maintaining proper weight – weight is an asset to CFer’s, the more weight on the body the more defense to fight against infections.
Exercise = strengthen our lung function and build muscle. A strong body gives greater force behind coughs to clear the mucus from our lungs and keep the bacterial infections away.
Pills = help our organs function properly, and overcome the vitamin deficiencies from lack of absorption of food.

Somewhere during our days we find the time to do all the other “normal” stuff: things around the house, make our beds, paint our nails, unload the dishwasher, clean, see friends, work, and in my case – do “mom” things!

But each day, brings another day of life. Another day of breath, and let me tell you – we are grateful. Grateful for each day. CF brings you gratitude, whether you ask for it or not.

 

WHAT IS CYSTIC FIBROSIS

Many of you may wonder what is Cystic Fibrosis anyways???
Mandie explains it so well to help educate others, take it over Mandie:
Cystic fibrosis is a genetic disease which effects your lungs and digestive system. The defective gene causes thick, sticky mucus where in the lungs the mucus clogs the airways and traps bacteria which can cause frequent infections and lung damage. In the pancreas this mucus prevents the release of digestive enzymes that our bodies need to digest and absorb food.

It is important to stick to our strict treatment regimen to cough out the mucus reducing chance of infection and to prevent scarring in the lungs. If the mucus is not removed (and this is not as easy as it sounds) the blocked tissue behind it can die. We do home treatments, multiple times daily to help clear out the lungs and every three months we go to intensive doctor appointments where they monitor and look out our lung function. This allows them a better idea of how much of our lungs are open or blocked. A new game plan is created for the next three months and we go home and continue fighting and conquering! Or if things aren’t looking good, they will bring us in the hospital for IV medications and treatment. As a CF patient, you know your future consists of a double lung transplant for survival, but we try to care for and keep our natural lungs for as long as possible.

The digestive system is affected through lack of enzymes as well as lack of absorption of the food consumed – often leading to “failure to thrive” or “malnutrition”. Because of this we are on a high calorie, high protein diet. A 5,000 calorie/day diet! It is very hard to consume that much food, so we often seek out very caloric dense dishes or food items. Some CFer’s will need a GI/JG tube placed. This is a tube that is placed in the abdomen directly into the stomach or intestines so you can get ‘manual tube feeds’ while sleeping and in between meals. AKA constantly pack on the calories. Because the digestive system runs on a different universe, we often experience bowel blockages or ‘the runs’. Don’t quit reading now because I went there and brought up ‘that’ subject 😉 Some blockages can be treated with prescription laxative medication but at times, surgery is required and a bowel resection is performed. I have one particular friend who now basically lives on a full liquid diet, due to so many bowel resection surgery’s. It’s a tricky game we are constantly playing!
The sinuses are heavily affected with the thick mucus and majority of patients develop Chronic Sinusitis. Basically this is a 24 hour, 365 day sinus infection. Yes, headaches go hand in hand with this. Surgery is often required to drain the sinuses to relieve pressure and physically clear the sinuses out allowing us to breathe through our nose again. Staying on top of our sinus care is critical because there is frequent post-nasal dripping which allows the infected sinus mucus down into the lungs resulting in more lung infections.

Every year we have a mandatory Glucose Tolerance test. Yup, the same one women do during pregnancy and the same one your friend or loved one with Diabetes has to take. As, I mentioned earlier, the mucus in the pancreas blocks the release of enzymes for digestion. As the CF disease progresses it can block off the release of insulin as well, resulting in Cystic Fibrosis Related Diabetes (CFRD). This is something we all hope to avoid, but know if it happens, it can be managed with insulin injections to help regulate what our body can’t provide.

The reproductive organs in the CF population are affected as well. 97-98% of CF males are infertile. Women have a tremendously hard time getting pregnant. (My doctor has been practicing for 40+ years and I was his eighth patient to get pregnant. Not eighth delivery, but eighth patient to actually conceive). The cervical mucus is very very thick, menstrual cycles are irregular and maintaining a healthy, stable weight to allow the body to get pregnant are some of the hurdles experienced.

A Double Lung transplant, is the step most CF patients take when their disease gets to end stage. But I also want to mention, because of the heavy duty medications and antibiotics we are on, there is the risk of liver and kidney damage, as those are the organs required to clear meds from the human body. I personally know a few CFer’s that have received liver transplants and pancreas transplants.

BUT I must tell you, the future for those with Cystic Fibrosis is bright! Yes, this disease is hard. Yes, it is exhausting. But, I firmly believe having CF has made me stronger. Many incredible medications are in the works and being studied right now that have the opportunity for tremendous good changes.

I hope now, you are able to understand a bit more about the hidden, full body disease, Cystic Fibrosis. To understand more, visit:  www.CFF.org

If you’d like to learn more about this amazing family follow them on INSTAGRAM: @aimee_rudd

@Shermanmandie

@Nicoleelder

@Natalie_moss

with love,

Alanna, Natalie & Lyndsie

4 thoughts on “Cystic Fibrosis Awareness

  1. Wow. My sister dated a lovely man with CF for awhile and I learned about it from him. But I didn’t realize how much it affected the digestive system as well. CF is so horrible on the body and I wish you all the best as you continue on in this beautiful journey. And I’m so happy Mandie was able to have a baby. Does he have CF as well?

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  2. This truly is an incredible family! I am so thankful that I am the aunt to these three beautiful women and the sister to their amazing parents! What a lesson we could all learn from them ~ to live life with No Regrets!

    Liked by 1 person

  3. What a wonderful and enlightening way to learn more! This family is AMAZING!! From every aspect of every member it affects. Thanks for sharing 😘

    Like

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