Hannah's Memoir 11th Grade English My CF

               Cystic fibrosis is an inherited disease that affects the lungs, pancreas, and many other organs; it is also a terminal illness. When I was 6 months old, I was diagnosed with cystic fibrosis or CF.

 

 My mom often told me stories about how they found out about my CF and how they handled it in the very beginning, she said that my skin tasted like salt and I had a thick cough that never went away, she said that my brother and my father would call her crazy and she was just being paranoid but when they took me to the doctor they did a sweat test that measures the amount of salt in your sweat, and it’s still used today.

 

On February 21, 2001 was the day they officially diagnosed me and I began my life long journey of hospital stays, IV’s, PICC lines (peripherally inserted central catheter), and walks to try and find a cure.

           

To me, having CF isn’t really a bad thing, it has helped to shape who I am today. Through it, I have met many great people; I have learned not to take things for granted because you never know when it’ll be taken from you. Every day, I go through life as if I didn’t have CF hanging over my shoulders or knowing that this disease very well could be what kills me but I’m determined to not let it be what kills me, I want to go out by something other than my disease because that’s not how someone should go.

 

As I got older, I started developing several other diseases. I was diagnosed with CF related diabetes, a liver disease, ADHD, depression, and it’s all part of my cystic fibrosis. CF can cause complications in other parts of your body, such as your pancreas and that’s why I developed diabetes it was harder to produce insulin through the thick mucus. There have been studies to show that most teenagers and young adults with a terminal illness will be diagnosed with depression because they know about what their disease is and its long term effects on their body.

 

My older brother, Tommy, doesn’t have cystic fibrosis. I look up to my brother as my role model because he’s 6 years older than me, tells me how it is, and he’s also helped shape me into the softball player that I am through his hard work and dedication to the sport. Tommy isn’t really affected by my CF anymore, most of my family isn’t. Eventually, the hospital stays, the doctor appointments, and the antibiotic deliveries just become part of our daily lives and it to him is like, “Oh, Hannah’s in the hospital again. Okay, I got to go to work, I’ll visit her later.” It’s not like it’s anything new when I’m in the hospital, but when I am, my family has to keep living as if I was still at home.

 

            The gene mutation of cystic fibrosis that I have is Delta F508 and I have two copies, one from each parent. The delta f508 mutation is the most common and deadly mutation.

 

            Cystic fibrosis has caused me to take many, many medications. I start my day by doing respiratory treatments that include a vest airway clearance machine and two inhaled medicines; I do this to help my lungs break up the thick mucus that has built up in them. Next, I take my medications, I take my antidepressant, my pancreatic enzymes, Prilosec for reflux, a medication for my adhd, migraine pills, my vitamins that I take because my body is unable to produce many vitamins that I need, and I take an antibiotic to help inflammation and infections in my lungs. I take pancreatic enzymes every time I eat because my body cannot break down and digest food on its own. After my medications, I eat and take insulin. My nights end the same way they started, respiratory treatments and more medication.

 

            When I was diagnosed in 2001, the average life expectancy of someone with CF was about 30, now it’s up to the late 30’s early 40’s. I know that cystic fibrosis is a deadly disease but I try not to think much of it, I still play softball, I go to school, I hang out with my friends, I can do everything everyone else can do but I have limits and stopping points in the amount of activity I can handle. Sometimes I can’t be as active as others.

 

            When people find out that I’ve been playing softball since I was 4, they ask, “How do your lungs put up with that?” I believe that since I’ve been playing for so long, my lungs got used to that certain amount of activity level and my CF never effects how I play.

 

            I have been hospitalized for almost half of my life. My lungs have collapsed and picked themselves back up. I’ve fought the same infection for 3 years. I’ve had many operations on my sinuses to clean them out to help me breathe. This is only the beginning of it, as I grow older, my lungs will grow weaker.

 

            My mother has always been by my side through it, she’s one of the strongest people I’ve ever met. To be able to have one kid that was 14 weeks premature and told he wouldn’t make it and to have him make it to 22 years was just the start, she didn’t know what was next but she was ready. My mother is a strong believer in Christ, she has always told me, “God gives these things to those who he believes can handle it, just like your CF.” Following my diagnosis, she started to work harder to raise money so that no one would have to go through that phone call that she went through.

 

            I hate cystic fibrosis and it probably hates me too. Every year, kids from Cincinnati and Northern Kentucky all come together at Sawyer Point to raise awareness for our disease. You never see commercials about Cystic fibrosis because what we have is rare, only around 70,000 people worldwide have it, this walk and our own advocacy is all we have to get the word spread and to get funds for scientific research to help us get rid of this disease.

 

            My junior year of high school has been my toughest year, I’ve been hospitalized twice for a lung infection, I had surgery to remove my gallbladder, I had a sinus surgery, and the most frightening of them has been when I had fallen and caused a fracture to my skull, three staples in the back of my head, a concussion, and my brain had bled a little. From my head injury, things have become more of a struggle than I wanted, I have trouble remembering basic things and things that I learned in school, I’ve had trouble with understanding basic concepts, and I’ve had problems with remembering to do everything that I need to do to take care of myself.

 

            I’m 16 years old and I have lived about half of my life. I do everything a normal teenager does but I have stopping points. I’ve had to have a strong responsibility since I was young that most don’t have. The simplest things bring me joy because I don’t know how much longer I have to enjoy those things. I don’t want CF to kill me or anyone else with it.  

God is Amazing!

I just want to thank everyone for their prayers and for their continued prayers over the last four years.  When I Supply eliminated my job, I felt pretty useless; I was depressed and felt hopeless.  People who think it is easy to just go out and get a job don’t understand what it is like to lose 2/3 of your income.  I didn’t want to get out of bed; I acted like an idiot on job interviews.  I really did look as best as my mental state would allow me for a job.  We got help early on with our house payment from the State.  Eventually we ran out of money.  I continued to try to fix things myself but I finally came to my senses and returned to church.  I always had faith it would eventually be OK but I wasn’t asking Jesus, I wasn’t crying out to the Holy One for help.  I wasn’t praying enough if any.  The reason I am laying my life story out here is to tell everyone that without my church family and my Sunday school class I’m not sure where our family would be.  My son spent two years at school in Kansas and I could not send him any money.  He even worked two jobs a couple of times.  Once I surrendered and literally fell on my knees crying for help from Jesus, things slowly started getting better.  I got a job at Kroger working in the deli I couldn’t make the house payment but I could pay the electric bill.  We utilized Mason’s food pantry and other sources for food.  In January this year, I got a job at Phillips still not enough money to make the house payment but it was one more step closer to the end of the tunnel.  Then Tom lost his job.  Satan is really a pain in the neck.  But we didn’t give up, Hannah, Tom and Tommy started going to church with me.  Tom started as an Uber driver and worked at Pizza Hut for a while and when I couldn’t take Phillips anymore I stumbled upon a job at Shorr Packaging.  The salary could save our house if it wasn’t too late.  It was already headed to foreclosure.  The benefits are amazing, double digit growth if I could pick a job any job it would be this one.  Finally, after fighting with Bank of America our loan was modified, our payment went down and we can keep our house.

I’m telling you all of this because this entire journey was a God thing.  God gave us a miracle in 1994 when he saved our very premature baby that will be 21 on 10/13.  Then we kind of drifted away then Hannah comes along and gets diagnosed with CF and we joined Mt. Carmel and then eventually drifted away.  The great thing about Jesus is he is there for you even if you drift away he will forgive you.

Dear friends if you have troubles in your life turn to Jesus.  Our life is proof that there is a God and he is there to lift us up.  We may not always understand times of trouble, disease or loss of loved ones but His plan is perfect.  He will work it out.  We are coming out of this with a greater appreciation for simple things, family, people in need, and renewed faith.  Even in the worst of times you can find joy, thank God for the little things those can get you through.  Thank Him for the moon and stars, sunny days, rainy days it’s all good!

I know that when another storm hits, we will trust in Jesus to get us through.

Baseball, softball, CF, Dad and Kansas

I can't believe summer is almost over.  So much has happened.  Hannah's softball team won one game maybe, Tommy played one last season with the Cobras and with an MYO team.  He threw his first no hitter, he had a girl friend then he didn't, then he did and now he doesn't (same girl).  We traveled to South Bend Indiana, and all over the Tri-state watching Tommy play sometimes driving an hour each way.  I tried to really just enjoy watching him.

Tommy along with 836 other kids graduated from Mason on June 2 at the Cintas Center.  Hannah says there are 990 8th graders in her class and they will need Great American Ballpark for her graduation. LOL
I cried a lot at Tommy's graduation.  My little boy is all grown up.

My dad has been really struggling with congestive heart failure and we almost lost him a time or two but right now he seems to be doing much better he sounds much better (perkier). I know he is 80 but I'm not ready to let go just yet.

Hannah has had healthier summers.  She had sinus surgery in July and hasn't been quite the same since.
Lots of coughing, stuffy nose.  She grew a fungus from the sinus culture took meds for that then went right into a coughing marathon.  She got a new insulin pump on 8/26 and we went to the CF clinic later in the day for a sick visit.  The Doc said it was walking pneumonia.  They did a throat culture and she is growing pseudomonas fluorescens and p. putida what the heck is this stuff! I'm getting ready to bleach my entire house.  She is on antibiotics but I can't talk to anyone until Tuesday.  I hate CF!!!!!!!

Finally we drove out to Kansas for Tommy to start school.  What an incredibly long boring drive.  He is happy to be playing baseball but really getting a reality check that money doesn't just appear in your bank account when something happens.  Poor kid.  He already found a job.  I am so proud of him!

Hannah, hamsters, coaches and CF

During the last few days one of Hannah's assistant softball coaches passed away suddenly at the age of 44.  Her other hamster died too but she immediately started plotting ways to get another one.

A trip to the Psychologist today revealed something I had been suspecting for months.  Hannah has realized the battle that is cystic fibrosis.  Up until recently she didn't seem too concerned about the severity of her illness; after all she is extremely healthy.  She has started paying attention to lung function and when it got to 109 after being as high as 132 I think a light went on in her head "this is pretty serious stuff I'm dealing with.  Plus she has started to interact via social media with other kids and families with CF in their lives.  She is seeing how this rotten disease affects each CF patient differently.  She "Skyped" a 17 year old in Florida that weighs 80 pounds and is on the transplant list. Hannah on the other hand has perfect lungs for a 12 year old with CF and weight in the 90th percentile.

I think she understands that all that could change.  A nasty lung infection could bring her lung function down in a hurry.  Her diabetes could affect her weight.  She is not a normal 12 year old. She internalizes her feelings by staying in her room or covering them up with silliness.

What to do?  This is heavy stuff for us.  The psychologist suggests that she has someone available anytime to talk to when bad thoughts of CF enter her head or she has questions or just wants to talk. I will stop whatever I am doing anytime to talk to her.

CF stinks.  There is no break from it, it doesn't go into remission, it's there just waiting to get worse and suck your breath away.  Anytime she could get one of the deadly bacteria that takes so many so young.  And you can't stop it from happening you don't know where these super bugs come from.  They can be in the dirt that she walks in, stagnant water, and the air she breathes.

You can't put your child in a bubble.  She needs to live her life and not worry about getting sick.  We will just deal with it if it happens but I have faith it won't.

Love the Reds

Our family is crazy about the Cincinnati Reds.  We watch every game we can.  I wish we could afford to go to more games but apparently I am unemployable.

If I were younger I would be stalking Joey Votto.  He is one fine male specimen.

Twitter is quite entertaining when the games are on.  Everyone knows how to manage the team better than Dusty and @DallasLatos is crazy nervous when Mat is pitching.  It is cool to see the players comments that tweet.  We'll be watching and tweeting tomorrow.

RIP Mistletoe the guinea pig

I knew the guinea pig wasn't feeling her best so I made an appointment for the vet for today.  Well I found her dead in her little hut at 7:30.  Hannah stayed home to go with her to the vet.  Yesterday she was nibbling an orange out of my hand so I thought she was OK to go to the vet today.  I'm sure if we had taken her yesterday it wouldn't have made any difference. 

Hannah seemed to take it better than I did.  I was more heartbroken for Hannah than myself.  Mistletoe was very cute and squealed a lot.  I told Hannah that pets are here for us to love and take care of and give them a loving home. 

It is in the basement to stay cool until Tommy can bury her.  The ground is soft so it shouldn't take to much trouble to dig the hole.

In the last 3 months, we have lost one of two hamsters and one guinea pig.  We still have one very old hamster and one baby gerbil and Hannah and Tommy are getting it a companion.  Poor thing, it doesn't know it is coming here to die.  It hurts anytime a pet dies even if they are cute little rodents.

Sinus Surgery again

Hannah is headed for sinus surgery #5.  Her first surgery was the first playoff game between the Reds and Philadelphia, you know the no hitter in 2010.  I will never forget her first surgery because of that little baseball fact.  Children's didn't carry whatever channel it was so my brother and I watched ESPN and kept seeing the updates scroll across the screen.  Poor Tommy was so disturbed by the no hitter.

It's a two hour surgery so you have plenty of time to sit and worry or eat in the cafeteria you know like chocolate and stuff :) 

# 5 and I'm still going to worry about it.  Her CT scan was pretty awful this time and she just had surgery in October.  CF stinks I'm trying not to say sucks anymore or I swear to God.  Wish me luck.

Let's see #1 was October 6, 2010, #2 was February 13, 2012, #3 was February 27, 2012 he couldn't get into one side to get it cleaned out opening was too small, #4 October 24, 2012 and sometime in June after school will be #5.  Sad thing is she has been having severe sinus pain off and on since March.

What a strong, amazing wonderful little girl!  Never complains just does her stuff and keeps on going.

Irons and Wrinkles

On the way home from Easter services, Hannah asks from the backseat "If an iron takes wrinkles out, will it work on the wrinkles on your face?" or something close to that.  Anyway, I said I wish. She is so funny.  She says stuff like that all the time.  She gives me so much joy.  I can't imagine life without her.  She is going to be heart broken when her Tommy leaves for college in the fall.

Our entire family, uncle Marvin included dedicate ourselves to keeping that child healthy.  CF stinks and we see how it is affects her more and more everyday.  I know she is amazingly healthy for CF patients but I've seen little changes like last night after softball she said she started coughing and couldn't stop almost threw up and she can't catch her breathe when that happens.  Shortness of breath is the most noticeable change along with fatigue.  She was so tired after practice.  She often comes home after school and sleeps till dinner.

I hate this stupid disease. 

Diabetes Doc

Hannah went to the endocrinologist today.  Her blood sugars are much improved.  Changed her insulin doses around a little because she is having lows at certain times of day.  Her weight is steady around 145 and she is 5' 3.25". My amazing CF child with weight in the 95th percentile and height in the 70s.

I love this picture, the sun was in her eyes and then she fell asleep.

I have a job interview and I hate google sites

I have pictures on the website that just randomly disappear.  The header was gone today.  What the heck?
Happens all the time.  Then there are the blank areas I can't get rid of and can't find anything in help that tells me how.  I only looked at the home page today I'm afraid to look at the other pages.

Finally, I have a job interview.  I hope I don't mess it up.  My self-esteem is gone, my confidence is gone and I can't remember anything 2 seconds after I see or hear it.  I think about all the people I helped get a job or get promoted and only a couple have given me leads in two years.  Vendors I had treat me like I have the plague.  I will admit that I was depressed for months and wouldn't talk to anyone or go anywhere but come on guys give me a break.  I hope that all my deserters are never in this position I wouldn't wish the last 22 months of my life on anyone.  Well maybe 4 men, GS, JP 1 & 2, and DS.  What goes around comes around.  God has a way of taking care of things.

Going to see my dad this weekend hope the snow holds off.

Wow

I know I said I was going to bed.  Since I have been living in a fog for two years, I never checked the stats on our blog.  Wow we get many page views.  I need to write more for your entertainment!  And info on Hannah.

Did I just hear Hannah cough

I wish I could just not notice every single time Hannah coughs.  Drives me crazy. I stop whatever I am doing to listen and then the little voice in my head starts to ask: is this just a normal cough that normal people get or is it the start of some nasty CF cough an infection, more antibiotics, hospital all the stuff going through my head.  By the way, that is the only voice I hear in my head.  Well I just heard that cough and she is really tired AND she says her belly hurts.  Hopefully, it is nothing.

I have been in a really bad mood today.  Rain maybe.  No job.  I don't know.  I guess I will just go to bed.

Unemployment Stinks

I've been unemployed since May 2011.  I have no respect for the people I once worked for.  Especially one that claimed to be my friend.  I am not consumed with hatred anymore but I would love to see him just once more.

Anyway, things are really, really tough right now.  I made my first trip to the food bank a very humbling experience, especially for Tommy.  We are two months behind on our house payment.  Did I mention I hate Bank of America.  You are threatening foreclosure on someone's house but you won't return their phone calls.  My unemployment ran out in December.  All those years all that experience means nothing.

I pray I find something soon.  I decided God was mad at me so I've been going to Church so He can tell me to my face :)  I love Church not sure why I stopped going.  I'm sure depression had something to do with that.

10 years ago today

Can it really be ten years since Hannah was diagnosed with CF? Wow seems like yesterday. I remember everything I did that day, what I cooked and the time the Doctor called. What a strong young lady she is. She is a bright shining light in our lives. I hope it never goes out.

Updates

I haven't written anything for quite some time. The last thing I wrote about was worrying about Hannah and I was right. She ended up being admitted to Children's on Sept 1 and was in almost the entire month. A positive culture for stenotrophomonas (however you spell it) got her 2 weeks of IV antibiotics. She went in for a sinus headache and they found this new bug. She came home for four days in September but ended up back in the hospital for intestinal issues. Then there was sinus surgery on Oct. 6 and 2 positive cultures for pseudomonas and eight weeks of tobi and four weeks of cipro. Fun times.

Another intestinal back up and back in the hospital to start the year.

Things look good for now.

I'm worried about Hannah

OK so I'm starting to really worry about Hannah and it is affecting my personality. Her glucose is running extremely high and we have her under our thumb getting insulin in her. She woke up with it over 300 this morning. We have only had one reading below 300 in the last 4 days a couple over 600 and several between 300-600. What the hell is going on? It has always been a struggle getting her to take her insulin but the glucose never got this out of control. Makes me wonder if something else is going on. I am so stressed about this and what Best Buy did to my checking account that I want to scream. I really want to curl up in a fetal position and sleep for a month. Oh well, can't do that, drinking won't help, I don't smoke or do drugs so I guess I will pray.

I'm tired

So I am trying to put in 50 hours a week but this morning when I woke up at 4:00am I had the shakes, I just couldn't do it. I arrived here at 6:30am. Oh well. Tommy ran the half marathon yesterday in the Flying Pig for his sister.
He is growing into quite a wonderful young man..

One more night at Children's

Here I am for one more night at Children's. I told Tom I am very close to curling up in a fetal position. I can't take it one more day. She is much better and I will continue to give her IV antibiotics at home. I really should go back to school and become a nurse.

While Hannah was receiving a massage, they discovered an odd looking mole so we need to get that checked out. Just one more thing to worry about. I'm sure it will be fine. If not, we will just deal with it and put it in God's hands.

Here we are at Children's

I haven't posted anything for awhile. Let's see, I had neck surgery in January for a ruptured disc. I woke up on November 7th and it felt like I stuck my arm in fire. The worst pain I have ever had in my life. Worse than "birthin" babies. Turns out it was a pinched nerve caused by the ruptured disc. Been in a neck brace since 1/14 but I am slowly weaning off. Can't go back to work for another 2 weeks.

Hannah after having a fairly uneventful 2009 is now at Children's with an intestinal blockage and IV antibiotics. Might as well clean out everything while we are here. After the hell of 2009, I was hoping 2010 would be better. It can only get better from here:)

Surgery

Today I had surgery to fix a little leaking problem I was having. It was a quality of life issue, could I live with it; yes but why. I am so glad I got it done. I can already tell the difference.

I'm a little stoned on pain meds but oh well.

Monday I am having a growth taken off my middle finger. I must have over used it LOL.

Hannah goes to the CF clinic and diabetes Doc on Monday. So far I know her chest x-ray was incredible, yippee and her liver enzymes are elevated again booooo. I love being able to go online and get a peek at the results before the visit. She is coughing a little and I bet she grows staph in her throat culture again.

I have been forbidden to go to softball practice tonight so I can recover and go to the game tomorrow.

Have I mentioned lately how much I hate CF? Well I hate, hate, hate it.

I absolutely love being a mother my kids make me proud every day.