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.

Discover Digital Photography

Well, I signed up for my first photography class. It starts January 21st. It's an online class, but has a lot of virtual classroom, discussion boards, and tests/quizzes, so I think I will stay motivated. The reviews for the class were great!!! Everyone loves the instructor. I was worried that it was going to be too "introductory" for me, but according to former students, even those who knew a little about photography learned a great deal. If I like this one, I'll be taking one in March that teaches all about lighting and how to take the best pictures. It's called "Secrets of Better Photography". I think I eventually want to take a class where you learn to develop your own film, but I want to learn more about my SLR first.

Here is the curriculum:

Week One
Wednesday - Lesson 01
In our first lesson, you'll learn what digital photography is and how photography evolved to this exciting new level. We'll go over some of the jargon and terms used in the industry, explore some of the equipment digital photographers use, and highlight the areas where things have changed.

Friday - Lesson 02
In today's lesson, you'll have an opportunity to really get to know your camera or the camera of your dreams. Students find this lesson to be one of the most helpful as they learn about the different features available on digital cameras, find out what to look for both inside and outside the camera itself, and explore the different levels of equipment available.

Week Two
Wednesday - Lesson 03
When it's time to make a decision and buy the camera that's right for you, you'll want to know how to make your best choice. In this lesson, we'll discuss more of the attributes and features of digital photography as you prepare to meet the camera salesman armed with solid knowledge of what's important to you.

Friday - Lesson 04
Digital storage is a big issue, so in this lesson we'll look at ways to address this aspect of digital photography. When it comes to digital images, you'll need storage space not only on your camera, but also on your computer. Today, I'll give you lots of recommendations and guidelines for getting the most out of your storage space, as well as how to set up back up procedures.

Week Three
Wednesday - Lesson 05
The ability to edit your digital images is one of the most compelling features of digital photography. In today's lesson, we'll take a look at several of the software programs available to you and some of the many features you'll find in digital editing programs.

Friday - Lesson 06
Using digital imagery online is another big part of digital photography. In this lesson, you'll discover ways you can easily use digital images with e-mail and on Web sites. We'll also discuss sizing images and using cell phone cameras, Web cams, and other online resources.

Week Four
Wednesday - Lesson 07
Printing digital images is a different process from simply dropping off a roll of film. In this lesson, we'll explore the many options for printing at home and the extensive network of retail printers available for digital work. You'll also learn about the different types of printers available, and how you can obtain archival prints.

Friday - Lesson 08
Film photography hasn't gone away completely, but digital photography is making a strong stand at replacing it. In this lesson, we'll focus on ways camera manufacturers have blended the best features of each format to give photographers great new ways to do traditional techniques. This area is changing rapidly, and students often find it quite interesting to see how quickly digital photography has caught up with film standards.

Week Five
Wednesday - Lesson 09
Scanning printed images is an important option for digital photography. In today's lesson, we'll look at restoring old and damaged photos, using scanners to bring slides, negatives, and prints into a digital format, and even how to capture an image of a 3-D object with a scanner.

Friday - Lesson 10
Travel photography is always a favorite subject for photographers. Digital photography presents some different challenges and opportunities, so in this lesson, we'll look at how professionals in the field handle the challenges, as well as techniques and opportunities you can use when you travel.

Week Six
Wednesday - Lesson 11
Digital photography has emerged in many different work places. In this lesson, we'll take a look at how not only photographers use digital photography for their businesses, but also how other types of businesses have incorporated it as well.

Friday - Lesson 12
In our final lesson together, we'll look at how to compose your pictures with digital options in mind. There's a lot more to being a digital photographer than just owning a digital camera, and today you'll see some great examples of difficult situations that you can remedy with digital solutions.

New Year's Resolutions?

There is nothing like New Year's to get everyone thinking about one word... resolution! I don't really know if my "plans" for the next year are resolutions or not, but here they are:



1.) Finish getting my house ready to sell, sell it, and buy a new one. Of course this is going to depend on the housing market. Selling my house may be more of a problem than I think.



2.) Get 2 much needed surgeries that were put off because of my transplant this year. Ok, this one isn't any fun, but I know that I will feel better and be in much better health if I get my hysterectomy and another sinus surgery this year. The sinus surgery that I am needing is where they cut up under your upper lip, and clean out and "strip" your lower sinuses. I've never had this type done (but have had 3 of the other ones done), and am not looking forward to the recovery, but more and more each day, I know that I need it done and will feel so much better afterward.



3.) Get some kind of job. My darlin' sis Renee got me a book about starting a business at home. Ya think she's giving me a hint? haha... I KNOW that I need to find some kind of job to occupy my time, but because of my disabilities (my hearing loss being the one big obstacle), it's hard to find something that I can actually do. I really, really miss nursing, but know that it's not even a possibility with my health.



4.) Start my autobiography. Why do I keep putting this off? I love to write, but hate to be under pressure to write. I write when I feel like it, and write what I feel like. I think I am scared if I start a book about my life, that it will turn into something I don't enjoy doing. I have never finished a book I have started. I always get writer's block.



5.) Continue getting in shape. This is a biggie. Now that my protein level is coming up, I have some energy, and am healthier overall, it's SO important to continue to work on building muscle and getting in much needed shape.

6.) Be a better wife and mom. How do I do this? Work on my patience, my peacefulness, my compassion, and the list goes on. I feel like prednisone has made me into a person not so fun to be around, and I really want to work on being the best wife and mom I can be. I think truthfully I work on this everyday, but I always feel like a failure in this department. My daughter and hubby love me though, so I must be doing at least a little something right. :)

7.) Get my social life back! Now this is something that's really been SHOVED by the wayside since I started getting sick with kidney disease. I really need to work on making new friends, socializing with the ones I have, and getting back involved in church activities. Now that I am feeling better, I realize just how much I've missed all of this.

That's all I can think right now. Let's see if I can stick to these 7 things. 

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.

Christmas Day Surprises

Yesterday was a great day. We were able to spend time with my family, Jason's family, and then we had "Jason, Christy and Casey time".. which is always special.

Casey got her iPod Nano that she asked for. I think I had convinced her that she wasn't getting it, so she was really surprised. It's red and has her name and phone number engraved on the back. For every red IPod nano sold, Apple donates $10 to the Global Fund to Fight AIDS, so Casey was excited about that.

Casey also got some beautiful antique jewelry from my parents. My dad is an antique dealer and Casey wants all things "old" from them for every birthday and Christmas. My dad got her a beautiful signed bracelet from Kramer of NY. It's a 1940's piece, and is Casey's favorite. I have pictures of her wearing it, but they are on Casey's camera which is with her at her dad's house now, so I'll post them, and other pictures from her camera later. Casey also got a new puppy at her dad's house. She is a chocolate lab, and I think her name is going to be Maggie. She is absolutely precious. Casey was very spoiled this year (aren't they all), but she appreciates everything so much. I don't mind giving as long as she takes care of her things and appreciates it. She definitely loves to give more than receive!

I got an awesome camera bag for my SLR camera. It is large enough to hold all of my future lenses that I'm planning on getting. :) I also got 4 filters for my camera. The picture below of the Christmas tree lights is with my new cross-star filter. I got a lens hood too for my current lens. I want a telephoto lens and a wide-angle lens, but since they are so expensive, I'm going to have to save for those.

Casey made me an awesome painting that I'm going to hang in my dinning room. I have been looking for an abstract painting to hang in there, and haven't found one that I like. This one is perfect!! I am so excited about it.

Jason got a couple new games and accessories for his PS3. He is such a kid!! :) He opened one of the new games I got him and the game wasn't in there. The guy at GameStop forgot to give me the real copy, and I just got the case from the shelf. Thankfully they believed him and gave him the actual copy when he went by there this morning.

Tomorrow, we are going to Virginia to see my grandparents (Mom's side) and to see my dad's side of the family. I am not feeling too good today. I hope I'm not coming down with a stomach virus. I am going to drink lots of fluids and take it easy today. I would hate to miss time with my grandparents again, because I didn't get to see them at Thanksgiving.

I hope all of you had a joyous Christmas with your family!

Here are some pictures of Christmas day with the fam, and then the one of our Christmas tree with my new filter. I will post the other pictures later.

25 Things I am Grateful For...

1. My wonderful husband who loves me, takes care of me, babies me when I need it, gives me awesome massages, is my spiritual leader, loves my daughter like she was his own, provides for me, and nurses me back to health.

2. My daughter Casey. I am so proud of all she has become. She is compassionate beyond measure. She has such a giving spirit, works hard at school, loves God, and has such a passion for life.

3. My dog Balin. He is always here to keep me company.

4. My Mom and Dad. There are no words to describe all they have given me, and continue to give me. They are awesome.

5. My sister. She is the most loyal, trusting person I know. She is always there for me, and I know I can count on her no matter what.

6. My husband's job. So many people are without jobs this year.

7. My doctors. Wow.. God sent me to them.. no doubt.

8. My medications. Without them, I wouldn't be here.

9. The soldiers in Iraq and here at home just waiting for that call saying they are being deployed. You make me so proud.

10. My home. Even though we really want to sell our house and upgrade this year, I am so thankful that no matter what "house" we have, it will always be a "home" as long as Jason, Casey and I are in it.

11. My new kidney.

12. My 7 year old "new" lungs.

13. Cystic Fibrosis, because without it, I would never have met so many wonderful people that are now a very important part of my life.

14. Friends.

15. The fact that my hair loss is slowing down.

16. My car.

17. America. Yes, I'm proud to be an American and happy that I live in a free country.

18. Presents under the tree.

19. SmartWater.

20. My Mac. Well, it's my daughter's, but she lets me use it.

21. Chocolate. I'm so happy for chocolate. The first time in my life really.

22. My grandparents. I am so thankful they are alive and healthy. I get to see them on Saturday.

23. Every birthday.

24. My blog.

25. Jesus. Merry Christmas everyone.

Wordless Wednesday

Thursday Update

My stent was removed successfully and uneventfully this morning, and Mom and I made it home safely. My transplant coordinator also called and said my labs from yesterday were good. She left a message, so I don't know specifics (I'm a sucker for details), but that message will have to do.

The next few days will be busy, so I may not be updating my blog for a few days. I hope all of you have a great, stress-free weekend.

Quick Update

My nephrology follow-up appointment went well today. I was in and out of there so quickly. I just can't get over it. When I go to lung transplant clinic, I'm literally there ALL day.

They lowered my prednisone dose to 20 mg/day. In 2 weeks, I'll go down to 15 mg as long as the blood work from today comes back ok. I'm waiting to hear something on that.

They aren't sure what is causing my hair loss. They really seemed unsure about whether the prednisone is doing it or not, but I still think it is. As long as new hair starts replacing the hair that I'm losing, I'm not going to worry about it.

My blood pressure has been running a little high despite the diuretic I'm taking, so they started me on a bp med for that. A few more small concerns were discussed, but most of them are due to the prednisone, and as I taper down my dose, those concerns will go away.

I finished my Christmas shopping today after my appointment. I'm DONE.. yay! Mom and I are at the hotel now just chillin'. I'm exhausted. I only got 3 hours of sleep last night, and I'm not used to a full day like this. Thankfully, there is a restaurant here at the hotel that we will go to tonight so we don't have to go back out.

I have my stent removed at 8:30 in the morning, and then we will head home. I hope all of you are having a wonderful Wednesday!

Band concert

Casey had her Christmas band concert tonight. They did AWESOME! With the exception of the hot, stuffy gym we had to sit in for 2 hours, it really was a great concert. They have gotten so much better since their first concert last year. I videoed a couple of songs, but I have no idea how to download them to my Macbook. I'll let Jason put them on the PC tomorrow. The PC and I don't get along. I'd like to post a video of them playing the Ukrainian Bell Carol. They did such a good job with it. Here are a few pics of Casey and then one with her best friends.

Hair Loss and Gingerbread Houses

Weird title I know, but that's what this post is about...

First of all, I'm thankful that my Monday turned out great! And thank you for all of your comments. I hope all of you had a good Monday!! After picking Casey up from her short school day, she got her homework done, we had a nice dinner, and then we decorated a gingerbread house. It's something that Casey and I do every year. It's a tradition. I have found that they are putting less and less candy in the kits every year though. Casey crushed up some peppermint and added it to the roof, which was a nice touch. I am so glad she's not too old to do this with her mom yet. :)

Ok, about the hair loss. I'm losing my hair... again! It's a small sacrifice for a new kidney I know, but it's still not something any girl (or any guy with hair for that matter) wants to endure. About 6 months after my lung transplant, I started losing my hair. They told me it was from the Prograf, one of the anti-rejection meds I'm taking. I don't think that's what is causing my hair loss this time. First of all, I've been on Prograf for over 7 years now, so I would assume my body is used to it. So, I'm thinking the cause is either the prednisone (because of my higher dose), or the effects from the anesthesia I had. Either way, it will come back. I'm not sure how much I will wind up losing, but the last time, I lost almost all of my hair over a 6 month period. When the last of it was falling out, the hair that fell out first was being replaced, so I finally just cut it all off "Halle Berry short" (the Halle Berry before hair extensions). I didn't like it that short, but did like it when it was growing out. It's true, your hair does come back a different color and texture. So, we will see how much I lose. I'll ask the doc about it tomorrow.

Speaking of that, Mom and I will leave for Durham early in the morning for a follow-up appointment with my nephrologist. We are going to stay in Durham overnight since I have to be back Thursday morning to see the urologist to remove my stent. I'll take my laptop and update sometime tomorrow evening.

Heidi asked me to pray for Robynn who is battling cancer and was just sent home in hospice care, because they have exhausted all treatment options for her. She is a young mother with 2 children. Please visit her blog and be in prayer for her and her family. What a sad situation. I know God is in control and we must rely on Him for understanding and peace when things like this happens. It's still very hard. Thank you to all of my prayer warrior blog readers!

Our gingerbread house from a couple of years ago. This year's didn't turn out so good...




This is when my hair was growing back out. I can't find any pictures of it shorter. I do however, have a video that I'm going to post soon of me on the Charlotte news and I had really short hair in it. It did come back curlier and darker. I kind of like this style, but longer hair is easier, because you can just stick it in a ponytail. :) Look at my sweet Casey with no front teeth. All she wanted for Christmas that year was... well, you know the song.

Maniacal Monday

It started with the alarm clock failing to go off...

That's right! It was set for 7 am, so I could get my daughter up and get her off to school. My eyes open at 9:57 am. I see the light outside and think.. did I oversleep? I look at the clock.. "Oh cr**!" I jump out of bed, run to get my daughter up, who had turned HER alarm clock off. My husband gets her to school by 10:40... just in time to count the day as tardy and not absent. The school system is so strict here, and she can only miss 5 days within a school year without having to go to summer school.

My husband decides to go do some grocery shopping on the way home from taking Casey to school...

First, you have to understand that my husband is obsessive in nature. Everything must be done right, or not at all. He takes my list... a good list that describes everything I need.. or at least everything I thought I needed. He calls me to verify... 8 times already.. and he's not even home yet. He still has one more stop to make. I'm sure I'll get another phone call. My cell phone has been ringing, because people can't reach me on the land line, because Jason keeps calling me to make sure he is getting the right thing, and to ask if I need this or that to go along with it. I made the mistake of asking him to pick up some Christmas stationery. He calls me.. goes into detail about every pack of stationery at Target. I pick one, he asks me again.. "Do you think that's ok?" "What about....???" I say.. "NOOOOO.. get the first one." "Are you sure?" "YES!!!" Some lady in the aisle interupts him.. "Hey, they have more stationery on the end cap." Jason says to me "Hey, let me go look at those. Oh.. these are nicer and cheaper." He then describes ALL of those to me. We finally settle on one.

I wanted some ground beef from the butcher, not the prepackaged stuff. Jason calls.. "There isn't anyone behind the meat counter, so I'm talking to the lady in the bakery." (Why is he talking to the lady in the bakery about meat?) Jason says "They have 98% lean pre-packaged, but it's dyed pink. Meat isn't supposed to be dyed pink." I say "Just get it if the butcher isn't in." Jason says "Oh, he's back. Let me go."

He calls several more times. So does my mom and my doctor's office and the billing department at Duke. 

My dog pees on the floor.. (thankfully the hardwoods in the foyer) when he sees a big dog out the front door. Remind me to shut the door tomorrow morning.

My coffee spills on my lap.

Monday is only beginning.