Looking back... and looking forward

As the year comes to an end, I can't help but be in disbelief that the first decade of the new century is over! Where did it go?

Between the year 2000 and this past year, I have had a living-lobar transplant, kidney transplant, four sinus surgeries, and several other smaller surgeries. I have been very, very sick and also been through several recoveries. Although my health has had its ups and downs, and continues to have these, it has mostly been the ups that I remember.

My daughter has grown from a 5 year old to a 15 year old who is now in high school and is driving. She has shown us that she is extremely academically inclined, and as her personality has continued to develop, we have come to see just how driven, compassionate, and loving she can be. Every year with her has been a bigger blessing, and I can't imagine loving anyone more!!!

Unfortunately, these years have also brought along divorce, heartache, and many lessons to be learned. How thankful I am that God has been a part of all of that, and has brought everyone through this with a greater sense of thankfulness for the things we do have, and continue to receive.

Over the past 7 years, I have come to know many other people with Cystic Fibrosis, and many others who have had transplants. I cannot stress enough how important these people are in my life, and how close our bond has become. Knowing people from one end of the world to the other with this disease, has truly brought light to what others go through, and how everyone has a different story. It has been very enlightening for sure.

I also must reflect on how amazing my long-time friends are, and how, through my struggles, they have stood by me. They mean so much to me, and it feels so great that no matter how often we talk, whether it be weekly, monthly, or every 6 months, it's like we haven't been apart a day. Most of them are in Virginia, or scattered elsewhere, but distance most definitely does not dictate closeness.

My family, including immediate and extended, continue to be a rock for me. They never fail to be there when I need them (or even donate organs to me when I need them), and are always loving and understanding. Having the majority of my family at my 40th birthday party this year, was testament to just how blessed I am, and how awesome they are!!!

Finding my Jason has been a huge part of this decade, and has given me a soul mate with whom I intend on sharing the rest of my life, no matter how long! I am so truly blessed that I have found someone who is always there for me, and is my rock when I need it most. It was rough at first, bringing baggage from both of our pasts into this marriage, but as we continue to grow closer, that baggage seems more distant each day. Loving, laughing, and living seems so much easier with him!

As my struggles continue, to stay healthy and remain physically strong, I am surrounded by family and friends who love me so dearly. How blessed I am to have them in my life. To have YOU in my life. As this decade closes, I want to reflect on the positive things to come this next year, and the years after. I know great things are in store for my friends and family, and how thrilled I am to be a part of it all.

God Bless you all and Happy New Year!!!! XO

An exciting year?

Here is a little New Year's survey I stole from Katelyn and Katey's blogs. Thanks girls!

1.) What did you do in 2008 that you had never done before? started blogging.

2.) Did you keep your previous New Year's resolutions, and will you make new ones for next year? I don't really remember what they were, but they probably involved "getting in shape" and no, I didn't keep it. I actually got more "out of shape".
3.) Did anyone you know give birth? yes, at least 4 people that I can think of.
4.) Did anyone close to you die? yes, CF friends.
5.) What countries did you visit? none.
6.) What would you like to have in 2009 that you lacked in 2008? a brand, spankin' new 10,000 sq. ft. house... hehe... I'm kidding. I'd settle for 8,000 sq. ft. :)
7.) What date from 2008 will remain etched upon your memory, and why? November 10, 2008... the day I got a new kidney from my wonderful Mom!!
8.) What was your biggest achievement of the year? living another year... it's always my biggest achievement.
9.) Did you suffer from illness or injury? yes.
10.) What was the best thing you bought? my Canon SLR.
11.) Did your behavior change over the year? only after going on high doses of prednisone. It wasn't for the best either.
12.) Where did most of your money go? bills.
13.) What did you get really excited about? mostly the little things in life, but also getting my transplant.

Compared to this time last year, are you:

1.) Richer or poorer? richer because we paid off some bills.
2.) Did you fall in love? more deeply in love, yes.
3.) What was your favorite TV program? House.
4.) What was the best book you read? Redeeming Love (I think I read Twilight at the end of 2007, or I would put that).
5.) What was your favorite film of the year? The Curious Case of Benjamin Button.
6.) Thinner or fatter? Thinner, but well on my way to becoming fatter.
7.) What did you do on your birthday, and how old were you? went to The Melting Pot with Jason and Casey. I turned 28 (oops.. I mean 38).
8.) What one thing made your year immeasurably more satisfying? Chocolate (I only started liking chocolate in the last month and a half.. it's awesome.. really, you should try it).
9.) How would you describe your personal fashion concept in 2008? T-shirt, hoodie, jeans, converse shoes.... ughh, I have to get some sophistication in 2009... add that to my resolutions. You know, the ones that I will have forgotten about by the end of 2009.
10.) What kept you sane? Casey and Jason.. always Casey and Jason.
11.) What political issue stirred you the most? Our 2 party system that should be more like a 4 or 5 party system.
12.) What was the best new person you met? Hard to say. I met so many awesome people from the CF community online. 
13.) What is a valuable lesson you learned in 2008? Maybe you shouldn't ALWAYS say what you think...

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.

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.