EBV, CMV, and Happy New Year!

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.

Home from Virginia

It was so great seeing all of my mom's and dad's family. We packed it all in today. First, we had lunch and opened gifts at my grandparent's house, and then we went to my cousin's house on my dad's side of the family and had dinner. Now we are back home and exhausted!!

I'm back to not sleeping well again. My insurance has all of a sudden decided to give me only 20 Ambien a month. They have given me 30 for YEARS. What do they think we are supposed to do the other 10 or so days? Not sleep? I am going to call my doctor tomorrow and see if they can call me in anything else. It's really ridiculous. Even with Ambien, I have a hard time sleeping, and usually don't get over 5 or 6 hours. With all of the expensive medications I am on, I have a hard time understanding why my insurance company has a problem with this one drug.

I am going to take the tree down tomorrow. I have never been one to leave it up until New Years. Other than that, I really don't have plans for the next few days. I think I'm ready for some chillin' time.

More pics to follow as soon as I can get my hands on Casey's camera (she's at her dad's house tonight). I took my camera today, but didn't even get it out of the car.. oops.

Thursday morning smiles

My insomnia is getting worse, and it seems they cannot find any medication to help me. My body is exhausted, but I can't sleep. I know a lot of you CFers deal with this too.

I needed a smile early this Thursday morning. This pic brings me one! I hope she brings a smile to your face too. Casey is a nut! Enjoy your day!!

Insomnia Bobomnia

You might see a few changes today to my blog. I haven't slept all night. I can't complain though, I haven't had a sleepless night in a long time. I have been sleeping fairly well the past couple of months. I have been very nauseous and even threw up about 3 am, so that might have something to do with it. I think I'll take a Phenergan and lay back down. 

I am STILL working on the photo montage of Casey. It's just taking forever to scan all of her baby pics. Digital cameras are so much easier! I'm also learning how to use iMovie on my Mac, so it's taking awhile to figure that out too. I am also slowly working on a new design for my blog. There is a picture I have to get before I can finish it.. it's going to be pretty cute.. I hope you will like it!! Look for it late June probably!

Nighttime at Duke

I always loved working nights when I was a nurse. It was quieter, the docs weren't making their rounds, just very peaceful. I prefer nights as a patient too. I like looking out the window and watching the headlights go up and down the street, I like the quietness of it all. My insomnia doesn't seem to bother me as much when I'm in here than when I'm home. It's a great time to have my quiet time and reflect on a lot of things.

This is just wrong....

This is what I look like at 3:30 am when I'm in the hospital.

This is what Jason looks like!!

See the difference?????

An insomniac's revelation

What helps insomnia?  The truth about it all....

1.  Some people say that drinking warm milk will help you fall asleep quicker. I disagree. Not only does warm milk make me gag (well, unless of course it has chocolate in it, and that defeats the purpose b/c that contains caffeine), but even if I can manage to choke it down, it has no effect on my ability to fall asleep. 

2.  What about counting sheep? I have tried this... you just can't imagine how many times I've tried this.. I've tried sheep, cows, dogs, cats, horses, bears, even turtles.. you name it, I've probably tried it. I never get to 100, not b/c I'm asleep before I get to 100, but b/c I'm bored and tired of playing this game by about 20 or 25. I can't recall ever actually falling asleep by counting sheep or anything else for that matter.

3.  Going to bed at the same time every night is supposed to keep you in a pattern and help you fall asleep and stay asleep...... BLAHHHHH!!  It doesn't work! If my body doesn't want to sleep, then it doesn't matter if I wake up and go to bed at the exact same time for a week.. I still can't sleep.

4.  Some say a change of scenery will help you fall asleep. Here is my question... why would I want to leave the comforts of my warm bed, soft pillow, and snuggly hubby to go sleep on a cold sofa with cold cushions... alone? This just defeats all purposes of wanting to go to bed in the first place.

5.  Read a book... yeah that will do it! NOT! Since I read such suspenseful, edge-of-your-seat, gripping books, if I start reading in the middle of the night, I will want to finish the book. I won't want to read 1 chapter and say "nighty night"... I will want to see who killed who, with what, and where as soon as I possibly can.  Hmmm... maybe I should start reading my hubby's Cosmology books. Doesn't everyone want to learn about quasars and galaxies? (I'm sure they would put me right to sleep.. so I'm going to try that now.. since it's 3:20 am and I'm still wide awake).

Thanks for the inspiration!  And.... sleep well!!