RSV: Respitory syncytial virus

RSV: Respitory Syncytial Virus

If you are wondering, like me about the S, in rSv. Syncytial means: multinucleate mass of cytoplasm that is not seperated into cells.


RSV is a common virus with cold like symptoms. Not usually dangerous for the typical child and adult. Their immune systems usually take care of it in a few weeks. But it can be dangerous for children who are at risk like those born premature, those with lung problems, and the immunocompromised.


Here are some factiods about RSV:

• It's the most common cause of lower respiratory tract infections in children worldwide.
• Virtually all children contract it by the age of three.
• It's the leading cause of pneumonia and bronchiolitis in infants.
• It may play a major role in the pathogenesis of asthma and chronic obstructive pulmonary disease.
• It causes significant morbidity and mortality in immunodeficient patients.
• It spreads easily from person to person through contact with respiratory secretions.

Ladybug was given shots to prevent RSV for her first two years of life. This is a common practice for premature infants, since during the first 24 months of life, RSV can lead quickly to bigger issues. Ladybug girl presented symptoms of a cough and fever a few weeks ago and later on a runny nose. It is her first time with RSV and as a child with chronic lung disease of prematurity, makes me a little nervous as her mama. We have been treating her with tylenol, xoponex and pulmicort, and some cough medicine at night to help her sleep. It has taken her some time, but she seems to be at the end of this yucky virus. She used to loathe her fish face mask, but now as long as we keep her entertained, is great about holding it herself and doing her breathing treatments. We think having PFT tests as an infant, which forced her to cry through a mask, began this fear and traumatized her.


As a lung transplant patient who is immunocompromised, this virus has been the first that has given me a high febrile temperature and has given me trouble with breathing since I was transplanted. Whenever you have high temps or dropping PFT levels, it is a sign of infection and time to call your transplant coordinator. I called mine, and they told me to head over to the local ER for tests. I tested positive for RSV, was given fluids and a prescription for Ribavirin and sent home.

Now this is the part that makes me a little upset. Of all my years of life, never have I been denied a drug by my insurance company, except for a vitamin which I can handle. My insurance denied the oral Ribavirin because, "coverage is provided for use in combination with an alpha interferon for the treatment of chronic hepatitis C. " The drug seems to be mainly used for this purpose, but if you read further, it is also used for respiratory purposes. So, instead of purchasing a simple drug on my behalf I was put inpatient to be treated. Yes, insurance company: deny me a drug so you can instead pay for a 5 day hospital stay, that will save you some money! : )

In the end, it is a good thing the insurance company denied me I suppose, since I do have RSV related pneumonia. Plus, having RSV puts one at risk for BOS, which I definitely want to stay away from! All things happen for a reason, right?

Antibiotics are only effective against bacterial infections and viruses are generally a little trickier which is why they say, "there is no cure for the common cold." My RSV is be treated by inhaling an antiviral teratogenic and mutagenic drug called Ribavirin. I inhale it with this mask which is attached to a small particle aerosol generator and am covered in this lovely plastic tent. Duke, if one of the few hospital centers who performs this aerosol treatment. I get to inhale this breathing treatment at night for 6 hours. I will complete this treatment after 5 days. My nose blocks up with the chalky crystals every 45 minutes. As soon as the six hours is up, I take off my mask and fall into a deep, restful sleep.

I miss my family very much during this 5 day hospital stay.

I am using skpe for the first time and have enjoyed skyping with Mr. L, my family, and especially our children. The super bowl was last night, but skyping with my daughter was the highlight of my evening! I miss my Ladybug kisses very much. I miss our Fosterbug's hugs. And I miss Mr. Lovebug who has been amazing through this all and can't wait to get home to the Lovebugs 3.


The nurses, doctors, and staff at Duke continue to make me thankful for the blessings of incredible care at this top notch facility. As hard as it is to be away from my family, the nurses here are like family and make my stay feel like, home away from home.

I also have received letters at Duke from family, friends and strangers letting me know they are praying and thinking of me and sending love and encouragement my way. These kind words touched my heart and soul. If you sent one of those letters, I can't tell you how much that impacted me. Thank you.

A big game is coming up this Wednesday here in Durham, NC. UNC vs. DUKE. I will depart the hospital that day with this cheer:

GO.........

Surfing and Cystic Fibrosis: The Mauli Ola Foundation

"The Mauli Ola Foundation exists to introduce surfing as a natural treatment to people with genetic disorders. Since 2007 we have concentrated on the amazing connection between Surfing and Cystic Fibrosis. We have taken nearly 400 CF Patients Surfing at over 40 MOF Surf Experience Days. In 2011 we look to expand our program to help patients affected with Cancer and Alpha 1 Antitypsin. We appreciate your interest and would love for you to join the Mauli Ola Foundation Ohana by becoming a member and help us with our mission to help people with genetic disorders through Surfing." -Mauli Ola Foundation Website

They are going to be near my hometown, and I hope to visit at least one site. They'll be at:

Wrightsville Beach, NC (Oceanic Street) on Sunday, August 28th 2011.

Then, Virginia Beach, VA (Camp Pendleton Beach) on Tuesday, August 30th 2011.

These two beach sessions are for allowing kids with CF to learn how to surf by the professionals.

Then, on Monday, August 29th 2011 they'll be visiting CF patients at UNC-Health Care! I am really excited about the expansion of their mission. As a young patient at CHOP during my cf tune-up days, it really lifted my spirit when someone most everyone knew, took time to visit children in the hospital. I know they are going to have a huge impact on so many children's lives.
To see if this group will be near your hometown, check out their site. Mauli Ola Foundation.

Mahalo.

So Long, Farewell

Tomorrow, we pack. Ladybug to the grandparents, Lightning bug (our foster daughter) to our friend's R and LC, Pugbug will be packing to visit Uncle Frank, and Lovebug and I will be packing for a few days visit to Duke University Medical B&B. I will hopefully have some stomach issues resolved with a gallbladder removal and two other procedures in my stomach. I am not looking forward to being away from my girls, sleeping in a single bed, and taking medications that make me sick to my stomach. But I am thankful for what this stay represents.


TWO YEARS and SEVEN MONTHS since my last overnight stay in a hospital!

Wow, over TWO years!

Let's just say, It has been over TWENTY YEARS since that last happened.

Ever since I was 8 years old, I have been a patient at Children's Hospital of Philadelphia and then at Duke for at least a 2 week stay each year. The hospital became my second home. But not any more. It is such a nice blessing, to enjoy and appreciate this moment of being free for so long and not needing medical treatment overnight in a hospital facility. It will be weird going back. I may not remember what to pack. I know for sure: a fan, my own toiletries, my computer, something to read, a blanket. But what else am I missing? Clothes, yes. Because I have always refused to wear the hospital gowns. Except when I was in the ICU setting. I need to partner up with someone, and come up with some tasteful gown-wear. Pictures, yes. So I can show all the awesome staff at Duke how far Gwyn has come from her 1 pound, 6 ounce preemie cute self.

Thank you all for your prayers for this surgery. Lovebug and I will now, live and love each other gallbladderless. Sounds so romantic. It's nice to share something medical in common. We can compare scars. Perhaps, I should mention to Ladybug's surgeon next month about our family's inheritance of gallbladder issues. Yes. Ladybug is scheduled to have ear tube surgery #2, and eye muscle surgery #3 on September 2nd. Please be in prayer for her also. We would all appreciate it. Our medical journey seems never ending.

The end.

Cystic Fibrosis and Death

Living with cystic fibrosis, I have always been keenly aware of my short existence on this earth. I don't know if others with chronic illness like cf have felt this same way, but it seems to be a matter of reality. This does not mean that I am not hopeful. I am a very hopeful person, who prays that my new pair of lungs lasts me a very long time.

The idea of death hit me at a very early age. My parents would be open and honest about all of us being mortal and coming to an end, not knowing when that time would be. Our family's belief in Jesus Christ and his salvation, gave me great hope at the young age of 6. I believed that if I did die, I would eternally be close to Jesus and His followers in heaven. I held onto his promise, that our faith in him would save us from our sin. Romans 10: ⁹ Because if you confess with your mouth “Jesus is Lord” and in your heart you have faith that God raised him from the dead, you will be saved.

The idea that my cystic fibrosis was life threatening did not penetrate my thoughts until I was older. When I began spending a lot of my time in the hospital. From 8 years of age until I had my transplant, I spent at least two weeks, usually one month each year in the hospital.

It was during these times, that I can remember hearing parents wail as they heard or watched their child die. I remember being in Children's Hospital of Philadelphia. If you walked the hallways, you could look down to the ER entrance. It was in those hallways, usually late at night, that I heard the wails of parents. Sometimes, I would hear them in my unit's hallway. They always gave me the goosebumps. I was often reminded during these stays that life is short.

As I became older and met others with chronic illness' like cystic fibrosis, sickle cell anemia or cancer. I thought to myself, there are a lot of hurting people in this world. The hospital can be a daunting place of reality. For me, it taught me empathy and sympathy for the sick and dying.

I made wonderful friendships during my hospital visits. I have many happy memories of spending time with my new friends, playing jokes on the nurses and doctors, eating non-hospital food late in the evening with the night shift crew, making special bonds with my new friends, and finally feeling the relief of the cf tune-up experience.

Making friends meant losing friends in the cf world. I lost my first friend as a teenager, shortly after she had a transplant. Her name was Gretchen. I will forever remember Gretchen. As I got older, and saw the horrible effects of the disease on my friends, it allowed me to value my life so much more. I never wanted to take my life, family, friends, or illness for granted. I wanted to live my life to the fullest. I wanted to have hopes and dreams that I could fulfill.

During these teenage years, my healthy friends would ask if I was going to die soon. Yes, teens are brutaly honest, and I was asked this quite often. But I was alright with this question and would typically respond with, "Yes, I could die young, but we really don't know how long we each have here on earth." There were some other tragic accidents during my teen years that reminded me of this. For instance, our close friends, the Lawlers, lost their beautiful daughter and three others in a car accident right before our family moved to the coast. This heavily impacted my life in so many ways and once again reminded me that our life if short and only God knows the number of days we have.

I'll stop here and continue on another post, about how my view of death has changed since my teens. Since these years, I have seen many more friends pass. I have come close to death myself, and my view has since changed and matured.

Living with a chronic disease can be a very scary experience. I am so thankful for my friends who have passed away and have encountered death that have taught me so much about life and living. How to live vibrantly, love unconditionally, while enjoying each moment you have. Now that I have had a transplant, it certainly has given me more time here with the ones I love, yet it doesn't exempt me from a short life. I am thankful for my faith in God and hope for the future. I do hope to use the time I have here on earth to live passionately with great purpose.

My friends, I hope that for everyone, whether you are as healthy as they come or taking your last breath!

Thankful

There are so many blessings in my life right now.

I randomly found this picture this week. It brings back memories from 3 years ago. It was taken on Valentines' week.

Looking back, I am so thankful:

*I can hold, touch, kiss and speak with my daughter as often as I please. During this week I was able to see Lovebug for the first time. But I was not able to touch her right away. This was very difficult for me. I could not speak to her since I was trached and using the portable ventilator for visits.

*I can eat! I love to eat now, and I partly blame it on the 6 months, I had nothing but enteral tube feedings. Every now and then I had a special treat of applesauce and thickened juice. Eating used to be a battle for my first 25 years of life, now I can't keep food away.

*I can speak & laugh. Like I mentioned before, with a tracheostomy/vent I was not able to speak for quite some time. I missed being able to talk and to just plain laugh out loud. When I did laugh, my machine would beep non-stop.

*I can move. I love being able to go places now. Perhaps, this is also because I was strapped to my bed 24/7 for 5 months. I try to get out of the house with Gwyneth and explore the world each and every day. I feel privileged to do so.

*I can smell. During this time I could not smell. This may have been a blessing, since the hospital environment, especially the ICU is not filled with the most pleasing aromas. Even though my sense of smell is not at its best. I love inhaling my favorite scents: baby bath time, springtime, and foods.

*I can snuggle with my husband every night by his side. When I was hospitalized as a CF patient, Nathan and I would snuggle next to each other at night in the very small single hospital bed. With a ventilator, this makes it impossible, the times he did snuggle, my vent would pop off, and I would stop breathing. This made for a traumatic experience. I am very thankful for each night we spend together snuggling.

*I have new lungs from a donor who made the unselfish decision to donate life. I was waiting and praying every day for the possible donor and his/her family during this time. I hoped every day for a second chance at life. I am so thankful for this person and their decision.

*I can hang out with those I love the most: my family and friends. At the hospital, I felt like I was surrounded by a lot of love. My nurses, doctors, physical, speech therapist ect. all became my new friends. But I missed my church family, close friends and family back home. February marked the sixth month of being away from home. As the saying goes, "there is no place like home."


It was through this experience that I have learned to appreciate and cherish the moments I have. Moments of living, breathing, smelling, tasting and touching that which I love. It is good to be reminded, through pictures like these of where I have been and where I am now. To never forget and always be grateful. For each and every day with the ones we love!

A picture of my tiny little ladybug, three years ago this week.

The Hospital: A Poem

The Hospital

A building, a structure

A haven for the unwell

Where life & death are prevalent

A place so many dwell

Its outside frame seems somewhat dull

But inside; it’s quite a mix

The people there are what really matter

Without, it would be nix

Some enter it with confidence

Others with high hopes

Some come in with scared eyed looks

Others, unable to cope

Hearing the sad news of a loved one

An accident, disease, or scare

That led them to this place

It all seems like a night mare

The people here are universal

Races mixed and matched

People come in all shapes and sizes

From age 100 to just being hatched

The environment is distinctive

Some areas silenced with peace

The ER is certainly not one of them

Where most are barely at ease

The outwear is unique as well

For those who choose to stay

They wear scrubs, white coats, suits & stethoscopes

The patients wear what they may

It’s ironic that this building

Can hold so many mixed emotions

If only doctors could cure all

With some magic potion

This is a place for the dying

It’s a place for the bereaved

A place of caring, loving hearts

And hope for the well to soon leave

This place is called, a hospital

Those who enter it should know

That its worth all the pain and strife

If you leave from it and grow

-Tricia Lawrenson

{I wrote this several years ago, after living a good portion of my life behind closed doors in The Children's Hospital of Philadelphia and at Duke University Medical Center. Not only can a parent and patient of a chronic illness like cystic fibrosis can relate to this poem. But so many more lives who have been dramatically changed when walking through those doors.}