What CF really is....

CF is hard to explain. Many times, I get asked what CF is and my first 

answer is typically "it's a genetic disease of the lungs". But really, 

CF is so much more than just the lungs. 

It involves multiple facets and specialties and areas of the body, lungs, 

pancreas, liver,kidneys,  physical and mental and emotional. It's coughing 

and infections and sputum and struggling to breath. 

It's about digestive and tummy aches and blockages and extended times 

in the restroom. 

It's about food and calories and weight.  It's about growth and height and 

being stunted. 

It's about looking younger than you are and having medical devices 

wherever you go. 

It's about post traumatic stress disorder and regression and fear and 

trauma and blocking things out and not being able to forget. 

It's about ports and gtubes and IVs and breathing machines and 

vests and airway clearance and 

treatments and Meds upon Meds upon Meds.

 It's about what's covered and what's not and what hoops to jump 

through and who to call and what letters to write and who to prove 

what is needed and which option is best and what's available 

and what's not and generic and name brand and politics. 

It's about cost and coverage and people making rules who don't 

understand the disease and hope in things that may never come or 

be approved or that you can't afford.

 It's about guilt and decisions and stress and complications and 

unforeseen circumstances and sleep deprivation and beeping machines. 

It's about a small room that becomes your home several times a

 year and a lack of privacy. 

Its about choosing to continue medication that they are allergic to. 

About endless doctor visits and hospital stays. 

It's about missing school and 504's and choices to mainstream or 

homeschool or online school or home bound. It's about advocating 

and research and working together and trying new things and last ditch efforts. 

It's about surgeries and invasive procedures and pokes and probing. 

It's about endless questions and listing endless Meds and their dosing 

off the top of your head. 

It's about teaching those around about something lesser known and understood. 

It's about trying to stay married and paying attention to your non CF'er and the 

guilt of being away and if you should have more kids. It's about working 

or not working, being able to afford Meds and vacations and paying bills. 

It's about staying the course and not giving up despite being weary and 

overwhelmed and depressed and teary and exhausted and fearful. 

It's about hope and doing everything you can to not lose it despite 

all this disease brings your way. It's about holding your children who's 

turning into a young woman and man and wiping their tears and whispering 

a prayer into their ears knowing there's nothing you can do to stop a disease 

that is so much more than their lungs! 

To mom of chronically ill children

To the Momma of a Chronically and Critically Ill Child,

I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope, and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your babies with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes, this is the kind where no one can assure you that your child is going to be okay.

You are brave. You are strong. You are loving.

You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by, dropping NG tubes, replacing feeding tubes,  inserting ports, giving IV meds at home. 

You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. You call your children’s hospital your home away from home, and while the rest of the world may find that sad, you see the hope. It’s the place that gives your child a chance at life.

I see you, momma. And you are loving that child unconditionally, just as you should. You are standing beside them come hell or high waters, and you are doing a good job. You are giving them the best.

You are their cheerleader. You are their smile maker. You are the one that knows their favorite songs, toys, games and movies.  You are the one that knows how to calm them down, how to hold them, how to love them best.

While other parents know everything about their child’s sleep habits, you know everything about your child’s vitals– where their normal sats should be, what their normal lung functions are, what their resting heart rate is, their normal pressures. While other parents can talk about their kid’s feeding schedules, you could talk all day about your kid’s anatomy, what surgeries are next, or what treatments are on the radar. While other parents are teaching their kids to crawl and to walk, you are teaching teaching them  how to swallow 50-60 pills a day or to bear weight on their legs and rebuild their core from weakness of lying in a hospital bed all day after surgery. While other parents look forward to going out on a date night without kids, you look forward to the moments when you can grab enough hands to shuffle around a bunch of machines and a hospital bed to just hold your baby.

You are brave. You are strong. You are doing a good job.

You are a mom. You would do anything for your children.  And some of you have to brave the path that no parent should have go down. Instead of debating the best way to introduce solid foods to a baby, you are making decisions with doctors on quality of life for your child and which breathing meds are the best ones for your child. You are a mom. You would do anything for your baby, even when it means they are in heaven and free and you are the one left here to suffer.

To those of you, I see you. Hold on to hope.

This is not a path anyone chooses. You did not do anything wrong to make this happen. Your child did not do anything wrong to make this happen. This does not make you worse or better than any other parent. It just makes you different. You love your child the same, you just experience things differently than the “normal”.

Keep on doing what you are doing, loving that kid no matter what.

You are doing a good job.

You are a good mom.

Love,

A Momma Who Knows

Just one of our CF struggles

It's a new year. And due to high medication costs, insurance decides to drop both Lynsey and Jon. Found another insurance company, but insurance rejected ALL of their meds, so our amazing CF Drs and nurses sent in authorizations to get them approved. Then pharmacy called saying they had trouble ordering these meds because most of them are specially and cannot order. So yesterday after 4 hours I transferred half of their meds to CF pharmacy who specializes in CF meds..... Praying now insurance approves!!!!! Just another struggle we face every year. Next is paying out of pocket and co pays, but that should be taken care of after these meds are ordered!!! Without insurance these meds listed would cost us around $30,000 per child per MONTH!!!!!!! We need a cure. Please pray for this insurance issues! 

Daily medications:
Inhaled:
Dueoneb 4xday ( 9/1/5/9)
Pulmozyme 2xday with PEP (1pm/9pm)
Hypertonic saline 2xday (9am/5pm)
Tobramyacin 2xday
Advair 2xday
Cayston 3xday
Vancomycin 2xday
Vest 3-4 xday ( 1pm/5pm/9pm)
Acapella 2x day (9am/9pm)

Po meds:
Bactrim 2xday
Viokase 10 pills a day
Singulair
Allegra
Vitamin d 4pills 2xday
Vitamin k
Adek vitamins 2x day
Benadryl 25mg 4 xday before vancomycin
Omeprazole
Pepcid 2day
Prednisone 40-50mg day
Zenpep enzymes 5 tabs with all meals and snacks and tube feeds(30/day)
Flonase 2xday
Saline rinses 3-4xday
Bactroban
Miralax 2xday
Colace 1xday
Check blood sugars before meals and 2 hours after and mid tube feeds
 Humalog Insulin injections if BS over 150


IV antibiotics when sick:
Vancomycin Iv 4 xday
Vyoxx IV 3xday
Ceftazadine IV 3 xday
Merpenum 3xday
Tobramycin 2xday

CF Mom

I am 50% genetically responsible for my two kids having Cystic Fibrosis and I am 100% responsible for my unconditional love for them.

I’ve played hooky with my kids on occasion while I ignored the school’s warnings of “an illegal absence.” I taught my kids to be responsible  to work hard, and that CF would never, EVER, define them.
…because I am a CF Mom

I may not know what it’s like to HAVE cystic fibrosis but I certainly know what it’s like to LIVE with it.  I’ve heard the long raw cough that rudely took away the ending of a hearty laugh. I’ve spent countless hours and witnessed the incredible effort it takes just to START their day, while all I need is a strong cup of coffee and a much stronger stomach. I’ve handed off thousands of pills, syringes, and nebulizers while struggling with them to be 100% compliant. I’ve tasted the salt on their cheek as I’ve kissed them good-bye. I’ve smelled the putrid stench of feeding tube formulas, the sour smell of many strains of bacteria expelled from their lungs, or the sterilize stink of the all too familiar hospital.
…because I am a CF Mom

It was heartbreaking to explain to my child “Don’t move” as the nurse made their 4th attempt at starting an IV, or convincing them that 3 weeks isn’t ‘that long’ to do IV antibiotic treatment over their already short summer vacation,

I told my kids they can do anything regardless of CF.
Fishing, softball, basketball.....
I told myself everything will be ok
…Because I am a CF Mom

I give hours of treatments and Feedings, because I’m a CF Mom
I allow pity hours, not days, because I am a CF Mom
I get up each morning
…Because I am a CF Mom

I am broken on the inside because I am a CF Mom
I am fierce on the outside because I am a CF Mom
I promise my soul that WILL NOT rest until I am no longer a CF Mom!

Last CF clinic 2014!

Last CF clinic for 2014!!!!! Lynsey's PFT is 110%, but has lost 4 lbs which isn't good. Jon has gained a few pounds but his PFT dropped to 87%.... Taking steroids and waiting on cultures to see what antibiotics to use!!!!! It's always up and down but overall they are great!!! Thank God!!!! 

Lynsey Lung pain

Its been over a month that Lynsey was diagnosed with pleurisy. She started complaining of chest tightness and shortness of breath. One night at softball practice is when she really began to struggle, losing breath, wheezing and began to hyperventilate and have panic episode I immediately called her CF doctor on what to do. She was then given antibiotics and prednisone. Days went by without any relief so I took her to primary care where they diagnosed the pleurisy. A week went by without relief. She texted me one day at school complaining again and not being able to finish a sentence. She saw her CF dr and was given another antibiotic. X-rays show cloudiness on left side around her heart, not sure if mucus plugs, atelectisis or infection. Now we are at week 4 and she still has pain with wheezing, once again was given a second dose of prednisone and now is on a 14 day regime of IV antibiotics(Zyvox and Cefepime). 

In thirteen years of having this disease she hardly complains of pain or feeling bad. I hate seeing her tired and hurting all the time. Praying whatever this is, goes away soon! Feeling very frustrated! She's already missed more school days then she has attended so far this school year. 

#CureCF

What it's really like to be chronically sick

Again saw this today.... Wanted to share, unfortunate reality with Cystic Fibrosis. This is for people and families who struggle with chronic illness everyday. 

Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to get better. No amount of medicine, doctors, surgeries, and procedures can fix you.

I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending.

Being sick isn’t as glamorous as they make it out to be in the movies. And unlike cancer perks, there are no “chronic illness perks.” Except maybe those really good lollipops at the doctor’s office. Those are definitely a perk.

The worst part about being chronically sick isn’t the physical pain, it’s the emotional pain that goes along with it. You reach a point where you can’t hold back the tears any longer and suddenly you’re breaking down in the middle of a doctor’s office. You think you can escape the emotional torture; your disease is purely physical, right?

The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away. We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?

Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark. You rarely seem to get answers when you are sick. And when you do, they’re often the answers you wish you hadn’t heard any way.

There’s one thing every single sick person wishes for, but rarely gets. Hope. Hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that silly little scale. Hope that one day you’ll get a glimpse of normal.

I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.

You learn to love every good second, every good minute, of any of those few good days you might have. You don’t fear death because you’ve already stared it straight in the face quite a few times. You know it’s not important to dwell on the little things. You have more important things to worry about.

So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular teenager.

Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end.