Day + 13

Hi Everybody. This is Day + 13 since it's the 13th day passed the transplant or 13 days passed my new birthday as they call it. We are barely through my P.R.E.S incident and we are onto our next issue. I haven't been feeling that well and have been retaining liquid which makes my entire body swell up, especially my arms and ankles. After many tests, I have been told I have Hepatic Veno-Occlusive Disease (VOD). This is a result of complications of my bone marrow transplant or the high dose chemotherapy I had to get. VOD is characterized by damage to blood vessels in the liver and surrounding liver cells, leading to pain, fluid retention, and abnormal liver function. You can read more about it if you want by googling it.
There is no cure for VOD so I have been asked to particpate in a clinical trial to test a new drug called Defibrotide that is not yet FDA approved. Evey and I signed the papers today and we are waiting to see if my insurance will cover it. The cost of the drug is over $40k. We will know late today or tomorrow if my insurance will help with the funding.
Other than that, I have been not feeling too well lately. The symptoms for the VOD is a constant battle going on in my abdomen which has caused me non-stop pain for the past 12 days. Sleeping is an absolute hassle and I am seriously in constant pain dealing with this so the quicker we can move past that the better off we'll all be. I haven't eaten in over 3 weeks. The doctors are trying to keep me hydrated through my IV and Evey has been trying to get me to have some broth, jello, popsicles, ice cream, ensure, etc but nothing helps or works. Nothing sounds good to eat and my throat and lungs hurt. The doctors think I have mouth sores which is causing a lot of pain when I swallow, from my stomach all the way up to my throat. Quite honestly the whole thing just sucks and and I mentioned before, we both want to move past it as soon as possible. Neither of us are getting any sleep and and we both seem like we're on the verge of going nuts.
On another note, I am looking forward to a long awaited trip from Floyd this week where he may be making an appearance when a group of friends show up tomorrow night. We'll have to wait and see how that rumor turns out. I've heard these things before and had them go south so I really don't want to get my hopes up.
Well that's about all I have for now. As I said we have a pretty good sized group showing up tomorrow as well as my bro and Dad tonight. Take care everyone and be well.

Love Kurt, Evey and Floyd.