Good bye RSV, Hello Rejection: Steady My Heart

This month and a half has been a bit tough. The after effects of the RSV have included pneumonia, lung infection and concerns of rejection and my PTLD returning. Physically and emotionally, this month has been very hard and exhausting.



My doctors have been most recently concerned with some spots that have managed to pop back up in my lungs. I had xrays, cat scans, pet scans, bronchoscopies and blood work this past month, all of which came back inconclusive as to if the spots were infection or cancerous. My doctors then ordered a second bronchoscopy to biopsy my lung lymph nodes and suspicious spots to get some more clear cut answers. I was very relived to find out, my PTLD was not the culprit, and that I did not need to be concerned about malignancies in my lungs. I was informed, that for the first time in my donated lungs almost 4 year life span, I have grade 2 acute and chronic rejection.



My doctors have been concerned all along with this RSV infection, since it put me at a much higher risk for developing rejection. I am thankful I am at a transplant center that is aggressive with it's care and was able to diagnose it early on.

Because of the rejection and infection. I am being treated with a strong IV antibiotic for the infection and another very powerful IV steroid and added immunosuppressive drugs for the rejection. It's going to be an interesting balance of reversing the rejection and controlling the infection. Added immunosuppressive drugs will increase the risk of cancer, which for me and my history, makes the balancing act a little more complicated. But I know at I am in great hands at Duke. And I can be assured that I am in the palm of my God's hands, which give me the peace I need to get through this obstacle.



These next several days and weeks will be tough on my body physically and emotionally. But I need to remember, despite these hardships, there is a reason, a purpose to it all. I also need to constantly remember about how much support we have received during all of this. My family, friends, and complete strangers have reached out to our family. Praying for us, sending us encouraging notes, making meals, watching our children and just loving on us. For that, I am so grateful for and undeserving of. Thank you.

Even it hurts
Even when it's hard
Even when it all just falls apart
I will run to You
Cause I know that You are
Lover of my soul
Healer of my scars.

Ladies' Home Journal

I was excited to see the latest issue of Ladies' Home Journal feature this story in their March issue.

The Choice: To Have Life-Changing Surgery, or Deliver My Baby

I had the privilege of meeting both Editorial Assistant Amelia Harnish and Health Director Julie Bain during a girlfriends trip to NY City this winter. Amelia gave my friends, Rebecca and Lesle, and I a tour of Ladies' Home Journal.

http://twitpic.com

David Molar and his wife Tammy did the photo shoot for the magazine. They are such a great couple with such amazing talent. If you ever have the chance to see David's work, check it out.

One of my favorite photo of the day was of our family.

It's ironic that the article came out the day I was being released from the hospital. This is the first time in a long time that I have felt very sick. I am still recovering from the RSV, pneumonia, and infection. It has been a harder road then I expected. I do feel so thankful for all of the prayers, letters, meals, gifts and well wishes from everyone to keep my spirits up. I am trying to reflect on present blessings and all of the amazing things God has done in my life, to bring me to where I am this day.

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.........