Sunday, January 11, 2015

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!


Tuesday, December 23, 2014

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!!!! 

Thursday, October 9, 2014

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

Monday, August 4, 2014

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. TC mark

Thursday, July 31, 2014

I chose LIFE

human-handSaw this post today about Life vs. Cystic Fibrosis. I thought it was very true, as in my case, being pregnant with my third child, second after CF, was asked if I wished to abort because of CF. I chose No, because CF changed my life for the better. Weird to say, but it did, it grew my faith and made me realize how previous life is. Now having two children with CF, I couldn't imagine life without them! 
Cystic fibrosis (CF) has been in the news a lot lately, mostly because of a little girl named Sarah and her mom Janet and how they changed the transplant rules for children. Also because of new drug therapies that are paving the way to giving people with CF a normal life expectancy. And finally, because a large amount of babies diagnosed with CF are aborted. Some statistics point to over 90%. That’s heartbreaking to me. I’m the mom of a little girl with cystic fibrosis.
Many adults with CF will gladly step up and say that they in no way support the abortion of a child because of a diagnosis of CF. They proudly proclaim that their lives have been worth living, CF or not. They are the ones we should listen to very carefully in this particular abortion debate. They know better than anyone because they have been living every single day of their lives with CF. One such person is Mandy Anderson.
Mandy is a remarkable person. Her parents were told not to expect her to live long enough to graduate from high school. In fact, doctors told them it would be a “miracle” if that happened. Today, Mandy is 32-years-old. And while her health has suffered at times, she lives an amazing life. She’s married. She owns her own business. And she is devoted to helping others live the healthiest, best life possible.
Recently, Mandy wrote a letter to parents who are learning their unborn child has CF. Her words brought tears to my eyes. Mandy is full of hope and love and she manages to send that hope and love right through the computer screen with her words. You must read the entire letter.
Before Mandy speaks to the parents facing a new diagnosis, she offers forgiveness and hope to parents who have already aborted their child because of CF. Parents like Addie Morfoot. She tells them that their child forgives them, and she hopes one day they can forgive themselves as well. This is important. Because if anyone understands the pain and regret of aborting a child, especially a child who was planned and very much wanted, its parents like Addie Morfoot. They need love, forgiveness, and support, not judgement. Mandy writes:
I know the pain of losing a child you never got to hold because I had a very early miscarriage. And while they aren’t the same cause of loss, the hollow ache that never really goes away when your arms are empty of the baby you love so much…that’s a pain I wouldn’t wish upon anyone; I wouldn’t choose that. CF is manageable; however, that hollow emptiness can devour you. So embrace forgiveness.
Mandy says in the letter that at one point in her life, her lung function dropped to 22%. This is usually when doctors start talking about a lung transplant. Mandy, with determination, was able to work hard to get her lung function back up to 74% but she had this to say:
[…] if I’d have had to live my entire life with only 22% lung functions, struggling to breathe, I’d still want to live it. I’d still want the chance to love my parents, meet them, get to know them, feel their warmth and comfort, and experience this beautiful world that God created. Because life is always worth living. […]It’s not impossible to live life with this disease. It’s not even a struggle – IF you choose to see it that way.
Life is always worth living – even with a health condition. Even when you are told that you won’t live to be an adult, life is always worth living. No one is guaranteed even one year on this planet. Most of us will take what we can get and live each day to the fullest. But that is a choice each of us makes – live with hope and determination or choose to see only the negative. Our attitude makes all the difference.
Mandy goes on to reiterate how happy she is to be alive. She talks about how grateful she is that her parents didn’t see abortion as a right or choice or a way to fix that their child had CF. She credits them with having the ability to teach her how to live life with a positive outlook.
When an unborn child is diagnosed with a condition such as CF, many parents are so blindsided by the news that they don’t know what to do. Doctors are often quick to offer the “solution” of abortion. But what parents really need is time to absorb the information and talk to CF care specialists. It is also beneficial to talk to families and people who live with CF. This doesn’t just go for babies diagnosed with CF, but for babies diagnosed with any condition. The doctors making the diagnosis are not the experts, so be sure to find one to talk to immediately. And be sure to find someone like Mandy to talk to as well.
As Mandy says:
Choose life and hold that precious baby in your arms, reassuring her that she matters, no matter what.
Editor’s note. Nancy is a work at home mom who writes about parenting, special needs children, and the right to life. She is the lucky mother of three spirited little girls, one who has cystic fibrosis, and she spends any free moment she can find fundraising for a cure for CF. This appeared at liveactionnews.org.

Friday, May 9, 2014

Lynsey's first CF DIOS

Monday it all started with Lynsey complaining of bad stomach cramps that continued to get worse throughout the day. I gave her the usual meds and miralax at bedtime hoping she would feel better in the morning. 
Tuesday morning she awakes vomiting yellow bile, distended abdomen so bad that her feeding tube was indented inward and leaving a mark and running fever and pain much worse in upper abdominal area, so as a nurse and a CF mom, my mind automatically thinks.... Pancreas, liver, gallbladder, etc!!  so I scheduled appointment at her primary care to be examined, where urine had blood in it, CBC was slightly elevated and X-Ray showed what appeared to be an intestinal blockage. We were told to go to Uva ER as soon as possible. 
She was admitted with DIOS, after ruling out all my other fears of pancreas, liver and gallbladder and kidney stones(which she's had before). 
 DIOS is another CF complication known as digital intestinal obstruction syndrome. 
She was immediately given 6 adult doses of miralax, colace, senna and 2500ml contrast enema. Great results but not enough! Meds were continued Wed and again on Thursday, was added 4 liters of Golytely on top of other meds...... She only had less than 10 BMs after.... Which is unheard of.... She still has huge appetite throughout all of this which amazes me of her strength. Vomiting and fever have gone but X-ray and pain still continue. So again on Friday same meds were given again but two 2500ml (5 LITERS) enemas instead!!!! Tons of stool and very hard mucus are coming out but small bowel are still distended. So here we sit at UVA 4 days later.... Multiple BMs later, Still waiting on her bowels to clear and her pain to subside. Yet another reason to hate this disease.... It complicates everything.... Making life for my kids harder than it should, but shows me just how amazing and truly tough my kids are.... Living with pain and breathlessness everyday.... And never complaining! They are my heros!!! Doctors, X-ray techs and nurses to are amazed at all she has been put through and yet she still smiles and never complains!!!