A Reminder to be Thankful

After a patient has spent a long time in a hospital, they begin to develop a routine.  This routine includes your daily check ins from doctors, nurses, respiratory therapists, social workers, counselors, activity resource volunteers, and so many more.  It becomes a habit to wake up to see their mask covered faces as they say, “good morning!” and continue begin the plan of the day.  Once it is time to leave the hospital, a part of you are sad to leave everyone who took care of you.  In a way, they became your home away from home family.

There are times I need to return to the hospital for check up procedures and appointments.  The days I return, the familiar faces reappear welcoming me back and thrilled to be updated on new events.  Seeing their faces, remind me of how thankful I am to have them as my team of doctors.  They have worked extremely hard and want to continue help me stay at my healthiest.

If you have a doctor or a team of doctors, be say a quick thank you to them.  They work hard continuously for you and many more patients.




Ashley’s Roses

Several of you have been asking why roses are significant to me or why my usernames include roses in it.  I will explain all in this post…

As you may remember in my first post, Cystic Fibrosis is also referred to as 65 Roses.  Since 65 Roses and Cystic Fibrosis is a huge part of my life, I bring awareness to CF in every way possible.  I wear lots of purple, the awareness color for Cystic Fibrosis, my favorite flower is a rose, and any username that I create has a rose in it.  This will bring up curiosity and eventually questions, giving me the opportunity to bring awareness to Cystic Fibrosis.  Below, the story explains the  beginning of 65 Roses.  The following story was copied from the Cystic Fibrosis Foundation, all rights go to the Foundation.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard (Ricky), listened closely to his mother as she made each call.

After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis.

With some trepidation, Mary asked, “What am I 65 rosesworking for, Ricky?” He answered, “You are working for 65 Roses.” Mary was speechless.

He could not see the tears running down Mary’s cheeks as she stammered, “Yes Ricky, I’m working for 65 Roses.”

Since 1965, the term “65 Roses” has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with.

The ugly fact is that cystic fibrosis is a life-threatening genetic disease that affects 30,000 children and adults in the United States.

Sadly, Richard lost his fight against CF in 2014. Richard is survived by his parents Mary and Harry, who have both dedicated their lives to finding a cure for CF, his devoted wife, Lisa, his adored dog, Keppie, and his brother, Anthony.

The “65 Roses” story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

Sources Used:


A Breath for Melissa

Living with Cystic Fibrosis is similar to a roller coaster, one day you are feeling great, the next you are sitting in the hospital.  I experienced this the past summer and have seen my CF friends also experience this.  Today’s blog is dedicated to my very dear CF friend, Melissa.

If someone asked me to describe Melissa in one word, I would say there isn’t one word to describe her.  She is compassionate, strong, giving, trustworthy, and the greatest friend you could ever have.

I would have to admit when I first met her, I thought I did not want a friend with Cystic Fibrosis.  I said to myself, “I live with this illness.  Why would I want to talk to a person who lives with it too?  Plus, how do you talk to someone living with Cystic Fibrosis?Melissa and I”  Of course, I was ten years old when I said that.  Who knew that only three years later, I would look up to her as a big sister?  She was very persistent in wanting to know how I was doing , and curious about me and my hobbies.  I slowly began to open up to her and soon our friendship began to grow and blossom.  Even though we both have CF, it doesn’t stop us from enjoying a surf together, seeing each other at the Living Breath Foundation Benefits, or texting each other words of encouragement.

She is truly one of my best friends who I love and cherish.  She is a strong warrior and a compassionate friend.  This past summer, she texted me every morning, afternoon, and night while I was in the hospital.Melissa and fiance  She gave me advice, distractions, and someone to lean on (yes, lean on through the phone) as I cried of frustration.  She even sent me a HUGE bag of hospital essentials to make my days a teeny bit more cheery.

Currently, Melissa is in the hospital, and received a double lung transplant.  She has been surrounded and loved upon by her parents, fiance, brother, and friends.  Being in the hospital can be draining as you watch the minutes, days, and weeks tick by as you wait.  Below is a link to a Go Fund Me Account.  The money raised through this account will support Melissa’s family as they manage the bills and pay for other necessities while they sit by Melissa’s side and support her.  Please take the time to donate.  Every dollar counts.  Please keep Melissa and her family in your prayers as she begins to recover, and also pray for the donor’s family as they grieve for their loss.


Changing Fate Novel Review

This week, I finished Michelle Merrill’s novel, Changing Fate.

changing fate

Novel Description:

“All Kate wants is to live. Battling Cystic Fibrosis is hard enough, dying from it is even harder. When her mom moves them closer to the hospital in the middle of her senior year, Kate’s determined to isolate herself—saving everyone the trouble of befriending a dying girl. It’s a difficult task when cheerful optimist Giana insists on being Kate’s friend.

Kate’s resolve falters even more when curly-haired Kyler captivates her with his sweet melodies. As her emotional walls collapse, Kate realizes the people she’s been pushing away may be the ones giving her a reason to live. But it might be too late.”

My thoughts:  I picked up this fiction novel expecting a “light and fluffy” story of a girl having Cystic Fibrosis.  Sometimes it is hard to write of one’s journey in a novel.  I say “light and fluffy” because since it is fiction, I thought it would only describe the basics of Cystic Fibrosis and not go into complete detail.  As soon as I began to read the novel, my view of the novel completely changed.  I admire Michelle Merrill for the detail she wrote in the novel, especially the upsides and downsides of having Cystic Fibrosis.  My condition is not the same extent of the condition of Kate, but I do know of others who are and have gone through the same trials that Kate endures.  I would warn those who do not have Cystic Fibrosis or do not fully understand the illness to realize the condition of this character is at the severe point of having Cystic Fibrosis.  Kate’s story is not the same for everyone because everyone with Cystic Fibrosis is different.  I highly recommend this novel to those who are looking for a novel about overcoming hardship or would like to read a fiction novel about Cystic Fibrosis.

Please feel free to leave questions in the comment section below.

To learn more about Michelle Merrill, take a look at the links below.




My Cystic Fibrosis Story

I was born in 1997, two months premature and was diagnosed with Cystic Fibrosis at birth. Due to the work of Dr. Frank Accurso, Colorado was the first state in the nation to provide newborn screening for Cystic Fibrosis.
From a young child, I was able to live a somewhat normal life. I hung out with my friends, played sports, and was involved in the performing arts.
At a young age, I never fully understood the seriousness of Cystic Fibrosis and that it is a life threatening illness. I thought it was normal for kids my age to take an average of 15 pills daily and wake up early and come home to do my breathing treatments. It wasn’t until I was about the age of eight that I understood that this isn’t something everyone lives with. You would think that realizing not everyone has CF that I would become saddened, but I wasn’t raised that way. I was taught to remain positive and to trust God. He allows things for a reason.
Fast forward to 2012: Over the past few months, my doctors noticed I had scarring in my liver caused by ducts being blocked by mucous. I was started on a medication to try to slow the progression of Cystic Fibrosis Related Liver Disease.
In 2013, blood tests showed I was having high blood sugars which indicated my pancreas was struggling to secrete insulin because mucous was blocking its path. I needed a small dosage of insulin to help regulate the blood sugars. I was diagnosed in Spring 2013, with Cystic Fibrosis Related Diabetes. Over the next two years, I learned how to change my routine by taking insulin and checking my blood sugars daily.
Fast forward to 2015: Up to this point, everything had been going well. I hadn’t been in a hospital since Spring 2013. I was healthy, and participating in a golf clinic, advancing in my golf skills. In one night and half a day, everything changed. I was taken to the emergency room at a local hospital because I was repeatedly throwing up blood. I was transfused with six pints of blood because I was so anemic and was rushed to Stanford Hospital. We discovered that I was bleeding in the esophagus. This was caused because my liver was no longer able to filter blood efficiently and the pressure backed up into my esophagus. I was given a TIPS procedure which placed a small tube in the liver to act as a bypass for the blood to go directly to the heart. I stayed in the hospital for three weeks and was almost back to my healthy self, allowing me to return home. Within a week, the ammonia levels in my blood elevated from 35 to 220. The elevated ammonia levels are a side effect of the TIPS procedure not allowing the bypassed blood to be filtered. Normal ammonia levels should be in the 30’s, but when elevated, a toxicity affects the brain and alters the behavior of the person to act abnormally. Again, I was rushed to my local emergency room then transferred to Stanford. I was given new medication to lower the ammonia levels, and was released a week later, once the doctors thought I was in good condition.
My story isn’t over, and there will be more trials to come. None of these trials will stop me from doing what I love. I look forward to the day when CF will stand for Cure Found rather than Cystic Fibrosis.

What is Cystic Fibrosis?

Cystic Fibrosis, also referred to as CF or 65 Roses, is a genetic illness which means it is inherited from both parents.  It is progressive which means it worsens as the person increases in age.  CF causes an overload of mucus to form in different organs, especially the lungs and digestive system.  There is a defective gene called the CFTR which stands for Cystic Fibrosis Transmembrane Regulator.  The defective CFTR gene and its protein product causes the body to produce extra thick and sticky mucus.  Everyone’s bodies produce mucus, but this mucus is more thick.  It is similar to the stickiness of chewing gum.  The mucus clogs the lungs and if procedures are not followed, it can lead to lung infections.  This can cause the person with CF to become very sick.  It is very easy for someone with Cystic Fibrosis to become sick because the mucus is a perfect environment for bacteria to grow, creating infections.  Currently, there are 70,000 people worldwide living with Cystic Fibrosis; 30,000 people live in the U.S..  About 1,000 new cases of Cystic Fibrosis are discovered each year.  More than 75% of those living with Cystic Fibrosis are diagnosed by age 2.  Almost half of the Cystic Fibrosis Community is of the ages 18 or older.  Currently, there is no cure for this life threatening illness, but there is hope of a cure being found with the research that is being done.  New drugs are being developed that are more effective at improving the quality of life and extending the life span of those currently living with Cystic Fibrosis.