I went to Duke today for a follow-up transplant appointment. I'm living off of 2 hours of sleep, so I'll try to make as much sense as possible...
Here were my concerns and what was done about them:
1.) Concern: Insomnia.. what's new, right? Solution: Prednisone lowered to 15 mg. Hopefully that will help. If not, call and get a prescription for a new sleep med.. again!
2.) Concern: Recent night sweats which require me to change clothes in the middle of the night (the docs always ask that question). Solution: Blood work for CMV and EBV. CMV is a virus that doesn't really affect a healthy person, but can make someone who's immunosuppressed very sick. I've had it twice since my lung transplant. EBV (the virus that causes mono) and what it can do to someone post-transplant, is explained below.
3.) Concern: A "knot" that has shown up on my arm in the past week. Solution: Had an xray done to try and see what it is. Also, the EBV blood work will hopefully help rule out Post-Transplant Lymphoproliferative Disease (PTLD), which is a type of cancer that post-transplant patients can get. My docs know that I've been exposed to EBV (Epstein-Barr Virus) before, and that is known to be a cause of this type of lymphoma in some post-transplant patients. The EBV test I had today is to rule out an "acute" infection, which I guess will help them rule out lymphoma. I am to report any other suspicious lesions/knots/lymph nodes to the doc immediately. If the xray doesn't look suspicious, and the EBV test I had today is negative, then they will just watch me to make sure nothing else shows up. Probably nothing to worry about.
4.) Concern: My blood sugars running high after dinner. Solution: Hopefully coming down to 15 mg of pred will help this. Also, I am upping my nightly dose of Lantus insulin.
5.) Concern: Recent cough and sinus infection. Solution: See Dr. P., my lung transplant doc on the 15th to rule out lung infection (if things worsen, I'll go see him before this scheduled appt). Also, make an appointment with ENT to have my sinuses looked at and determine when I will need sinus surgery.
6.) Concern: Worsening kidney function lab tests. Solution: This is most likely caused by the recent diuretics I'm taking. Go back to drinking 2 liters of water/day and get blood work again in 2 weeks.
7.) Concern: Swelling. Solution: Continue diuretics. This will most likely get better as the prednisone continues to be tapered.
Overall, it was a good appointment today. The docs are somewhat concerned about the night sweats, but hopefully the blood work, or my pulmonary appointment in 2 weeks will help find a reason for them. The fellow that came to see me today before the attending came in said "OH... it's you! I have been hearing about you. You are kind of like a rock star around here." I thought that was funny. He said that my case was just very unusual, so the docs talk about me a lot.... hmmm!
I will post an update when I hear back from all of the blood work and the xray. I really don't think there is anything to be that concerned about, but I'm glad the docs are looking into all possibilities.
Happy New Year to all of you!! 2008 was a great year for me with a lot of prayers answered! I am looking so forward to what 2009 brings.