Monday, May 16, 2011

Treatments and Living Life

I'm into week 3 of my photopheresis treatments. I'm finally settling into the routine and what to expect. Every Monday and Tuesday, I arrive at Main Methodist Hospital in San Antonio and head to the 10th floor Apheresis room.

My blanket, my laptop, and my amazing mother are always with me. It's quite the prep-work to get me ready to start the treatment. I put on a cream form of Lidocaine (a skin numbing medication) an hour before treatments, which does little. It does however, numb the most superficial part of the skin, so I figure it's worth the effort. The nurses have to create a sterile field, which is an area that is free of contamination from microorganisms. Nurses must wear sterile gloves, and it's a two person
job. They must clean the port site, allow it air dry, and then prepare to insert the needle. The needle is not inserted in the same place twice for as long as possible, so the nurses stick in a different place, moving in a clockwise motion every day.
The needle insertion is very painful, but I think I'm getting used to it. The most difficult problem that we have had is securing the needle. It is large, between one and two inches long, and has no sort of apparatus to hold it in place. Because of this, I'm always covered in tape and gauze. Still, today, the needle popped out, and had to be pushed back in which was not pleasant and got my clothes sprayed in blood. I have to say though, I felt pretty cool and tough walking out of the hospital bloodied.

The actual photopheresis treatment is a 5 step process in which all your blood is filtered out and subjected to the UV radiation. I can only guess that it's because the human body holds about 5 liters of blood and doctors don't want you losing too much of it at one time. The final process of putting the blood back in your body can take anywhere from 15 to 90 minutes, just depending on the day. The entire process takes between 3 and 5 hours and is exhausting. I have watched them start cleaning the machine after my treatments and I noticed that not all my blood is put back in my body. A guess would be that I lose between 1/2 and 1 cup in every treatment, just from all the leftover blood I see. Because of this, I can feel weak, even faint after.

My entire body hurts after the treatments. It's difficult to explain other than saying I feel uncomfortable all over. My body can be sore and achy to the point where I need pain medication. This lasts through Wednesday, and I am pleased to say that by Thursday, I do not need any narcotics and am basically pain and exhaustion free.

Being the first person in Texas to use a Vortex port for photopheresis, I am a literal pin cushion for nurses to learn about this new technology. It's both a blessing and a curse. Sometimes, the nurses screw up and have to insert the needle 2 or 3 times before they are able to access the port successfully. This causes a lot of pain and anxiety, but there is a huge upside to what I am doing. I see other patients who have the traditional type that sticks out of one's neck. I can't imagine having two lines protruding out of me all the time. This Vortex port is so low maintenance and much more ascetically pleasing, especially for a young woman. In fact, I even got to lay out at Barton Springs on Saturday with one of the sorority sisters and I didn't feel self conscious at all!

On an even bigger note, by demanding this more subtle looking port, I can only pray that I am teaching an entire hospital system how to use a more modern medical device. I hope that because of the results with my Vortex port, patients in the future will have the option to come into the Methodist system with nurses already familiar and willing to use this tiny access port as opposed to the traditional line. If there's another Mary Burkholder type girl out there, who one day may need photopheresis in San Antonio, I hope she too will be able to wear a bikini in the summer and still feel pretty.

The past few weeks, I have felt almost high, despite the fact that my health hasn't improved one iota. I have been filled with so much joy. I love life again and no longer feel cursed by illness. Every time that I start to feel down about life, the fact that I'm not graduating with my friends, and not working, I remember that God has a different, still wonderful plan for me. He is telling me that school will be later. I'm applying to restart in the Fall, by the way! For now though, I need to do something else. Recently, I've made food for my friends that were taking finals. But now, I want to do something bigger. I have a general idea of what I want to do and how I want to doit, and I'm so excited to test this idea out. If my trial run this week is promising, you will all be hearing about it soon! Thank you for your continued prayers and support! They are lifting me up more than I could have ever dreamed of!


  1. You are an inspiration. Thank you for writing your story and sharing it with us on such an deep and personal you. -stefani

  2. The first time I met you with Phillip and Rebecca, I knew that you were a darling young girl full of personality. But you are truly SO MUCH MORE! And I thank you.
    Love, Cheryl