Archive for January, 2017


I am about to begin my 8th week of Photopheresis treatment. This is treatment for the many chronic side effects that I have developed from my transplant, otherwise known as Graft Versus Host Disease (GVHD). My donor’s cells see mine as foreign, and attack them.

Just before I was released from my 1st hospital stay in January 2014, I had a port surgically placed in the right side of my chest. This enabled the medical staff to access a central vein during my treatments. In October 2016, I had surgery to have that port removed, and it was replaced with 2 different types of ports. These ports allow for much faster flow.The ports still hurt, and I do not feel like the area is completely healed. The lines that they routed through the veins in my chest can be seen and felt…they pop up through my skin a little. It’s very weird.

After 4 weeks of healing, I began Photopheresis treatment. In short, both ports are accessed and I am connected to a machine. The machine pulls blood from one port, separates the different parts of the blood, and returns a portion back to me through the other port. Once the machine gets what it needs, medicine is added to what has been collected, and the medicine is activated by UV light. The medicated blood is then returned to me. This process takes anywhere from 3 to 5 hours, depending on which machine I get, how fast the blood flows, and how long the UV activation takes. I go to the hospital 2 days a week for 10 weeks, then we will evaluate to see if it’s helping. There is no way of knowing if the treatment will help, or how much it might help. I’ve also found out the hard way that I am allergic to lidocaine. Because of this, I cannot have the port areas numbed before getting accessed with a 1.5″ 16 gauge needle. I am quite sore and tired at the end of treatment.

I spent most of this year with a cough, and now it’s back again. I’ve been diagnosed with lung Graft Versus Host Disease (GVHD) and lung disease. I see my lung doctor next week, so we will most likely start me back on a couple types of pills, nasal spray and an inhaler. So far my eyes continue to be extremely dry and painful, and very blurry because of that. I’m still very dry, not much saliva and my skin doesn’t seem to be producing much oil. Hair is not growing much at all, and is still very thin. I wear a hat all the time to keep my head warm, and because it depresses me to look at my scalp in the mirror. My joints and muscles are still quite painful, although I feel a very slight difference over the last few days. I’m hoping the treatment is starting to help, and I’m hoping the downward slope I’ve been on for the last year is finally levelling out.

I’m also redoing my donations page here on the blog and setting up a GoFundMe page, so there will be some information on that soon. I hope everyone had a good holiday. Ours was pretty quiet and uneventful, which is just fine with me.