Cystic Fibrosis, a love for life, and a presentation for patient care.. enjoy!

Jchao recently surveyed our hospital as you are all very well aware of. They said that we are one of the top hospitals in the nation and that we have an environment for improvement. We as an O.R staff have an incredible opportunity. We work among some of the most talented surgeons in the country, and every day we are part of a team of people that change several indivuals quality of life. With the constant goal of improvement we have a duty not only to this hospital but to ourselves. A commitment that will help improve the quality of care that we provide to our patients. I wanted to share a story of healing that has changed my life and helped me to have the desire to serve our patients in the most honorable and respectful way I can. This story is my own.

When I was two months old after failure to thrive and many other complications I was diagnosed with the genetic illness cystic fibrosis. Cystic fibrosis is a disease where the sodium chloride channels fail to function properly and cause a thickening of mucus in every lumun of the body. The most common side affect of this is thick mucus building in the lungs which more easily harvors bacteria and causes scar tissue and decrease in lung function from infection. This lead to a complicated childhood with many hospital visits, and stays.

Every three months starting from when I was diagnosed I had what was called CF or “cystic fibrosis” clinic. Each time I went it was the same routine.. height,weirght, vitals then into a room while I awaited a team of individuals that oversaw different aspects of my disease. Lung complications are not the only side affect and in fact in my case not the most prominant. Digestion of food, chronic sinus disease, bowel obstructions and nutrition are whati struggled the most with and each one of the doctors, and other medical professionals helped me to find the best way possible to manage my illness. I remember each one of them because they were my life lines and still are

During these routine visits I would have pulmonaryfunction testing done to see if my lungs had either decreased in function,increased, or remained the same. Often when I was it would be decreased andi knew precisely what that meant. A two week hospital visit. No friends, no school, no riding bikes or playing outside with my siblings. It was isolation a picc line and heavy medicationsfor me. Getting a picc line was always the scariest for me. I dealt with it fine until the veins in my arm began to be occluded with scar tissue because I had previously received so many. It began tohurt more and so they would give me some versaid tocalm my nerves. I distinctly remember one instance when I was eight when I went to have a picc line placed and I woke up in a large room. I didn’t knowwhere it was but whati felt in my arm was a sharp pain almost as if someone had taken metzenbalms and was carelessly cutting up my arm with them.. although that was not the case what really happened was theyhad trouble fishing the catheter through my scarred veins and had taken me down to fluoroscopy to achieve better visualization. I remember tears streaming down my face as I asked for my mom but she couldn’t be in there forvarious and obvious reasons… I didn’t have my mom but a lady wearing something vest like (which now having more of a medical bacckgroung I know was lead) took a hold of my hand and told me my mom couldn’t be in there but she would stay with me the whole time…..the feeling I felt atthat moment was comforit….like it was allgoing to be okay… it was scary. Waking up on an or like table instead of in my room on the floor having a simple procedure done. I didn’t know what to ecpect and for an eight year old this simple procedure turned out to be more traumatizing than expected. They finally got the line in and I remember thanking them profusely …the feeling of gratidtue was one like none I can ever really explain they had worked so hard to do their job and had treated me like I was the only little girl in the world that mattered to them…..

I stayed in the hospital for two weeks after this and after that moment when they got that particular line in I decide that I wanted towork in health care.. that I wanted to be the one to help someone be able to feel better….

I had many good experiences and many bad ones… mean nurses who could have cared less about me, and kind ones who took extra time to be with me… I remember one of my favorite things about being in the hospital was child life.. child life is a program they have developled at primary childrens where they have games, activities, crafts, movies and a large range of other things that children who were recovering could participtate in with the hope to ease the burden and take the mind of being in a lonely hospital. This to me is what thehealing connection I help you feel safe welcome and at ease is. When I was little even though I had to have many needle sticks small surgeries and procedures done. I still found joy in the hospital because the people their were so kind to me. I didn’t grow up with young kids as friends I truly didn’t I missed 60-80 days of school a year. There wasn’t a lot of opportunity in most of elementary for lots of friends. my doctors ,  my nurses and the residents were who I called my friends. They helped me heal. They helped me learn things that not many people could learn. I learned that life isnot to be taken advantage of. The times that I wasn’t sick or in the hospital meant so much more than just being another day… it was a day where I didn’t hurt or didn’t have a picc line. I could go swimming or ride my bike and that to me was not a right it was a privaledge and something I cherished. Throughout life every day living has been the same I haven’t been hospitalized in over five years and for someone with this particular illness it is a miracle.. but every day to me is still so significant..

It isbecause of the incredible care that I received that made me who I am today. Because people took the time to be so commited and take such great care of me I became commited to other people. It is hard feeling lonelyand sick and uncertain of what is going to happen. It is hard being in a place where your life is going to be changed. Lets make a goal to be those people that have an effect on our patients for the better. Two thigns that I wanted to implement as some thoughts are goals are as follows number one

Keep it casual…said no one ever… when our patients are in the hallways think of the state they are in. they are scared… they just left the onlypeople theyknew and were transported to a hall filled with other patients, equiptments, andhealth care providers. A lot of the surgeries we do are life changing… some of our patients will have to learn how to walk again, some willcomeout minus one limb and some before feeling better will have to heal from the excruciating pain of lengthy incisions and torn through tissue. The thoughts going through their minds as they sit in the hall way can not be be far off from what is the worst thing that will happen to them… they don’t need to hear us talking about our weekends or our lives at home.. keep it professional they need our support. They need our love and they need our assurance and hope. Lets make a goal to try our hardest to put our fovus on the patients at hand and not having casual conversations with eachother in the hall…. I don’t want you to think that I mean all the time being serious having no fun or talking about anything but medicine.. we work in a field where their needs to be some time for laughing and humor and conversation but there is a time and a place lets keep it that way and keep our patients filled with hope and a feeling of safety and assurance.

And last I want you all to close your eyes…think of the person that you love the very most in this world….now picture them….now picture them having the surgery you are either scrubbing, circulating or performing today… would you not want them to have the best possible care?? Would you not want them to have endless warm blankets and people surrounding them helping them feel respect and compassion for what they are about to go through?? When you work today or any day for that matter…clean a little better, have a little bit more compassion, provide someone with a little bit more hope because that is somebodys person that they love most in the world… I was my families person they loved and because of incredible care and love and commitment I have been able to heal not fully but lead a healthy life with cf. cystic fibrosis is one of thousands of illnesses some more mild and some much worse it doesn’t matter what it is but every day the people we care for are suffering in some way. Be commited.