Huge Thanks!

New Wings for Kara benefit was a big success last night! There was a great turn out and it was so good to see so many people that I haven't seen in a long time! I don't get out a whole lot...only getting out to go to doctor appointments, church, and some of the kids' sports events...so it was good to get out and enjoy time with friends and family. :) To me, that in itself was worth the event more then anything. I mean, who doesn't love a party??? I do feel bad that I didn't get to talk to some people, or I would be talking to someone and then start talking to someone else and then the first person I was talking to wasn't there anymore! So I hope no one felt like I ditched them! ;) It was a long night for me and I was very tired by the time I got home.

Huge thanks to Katy Linkous, Cherolet Hutcheson, and Jodi Byers. These amazing ladies are the ones who pulled off the benefit for me. They did so much and Doug and I are so very thankful! There are so many others that helped as well...I don't want to leave anyone out. Words just cannot express how thankful we are to have such great friends and family to help us get through this "hiccup" in life! Wild Horse Radio came out to DJ the event and was awesome! Thank you Jeff Zumbrun! Doug and I had to dance together...he was thrilled! :) I wasn't too mobile because of my lovely oxygen tank. First time we had danced in awhile, so that was nice. :) It was a little much because of moving around, but I had him to hold me up.

Here's a few photos from the night:

The wonderful group of ladies that helped pull off the event!

1995 crew...Angie, Kelly, Joe, Nicki, Kara & Vickie

I hope that everyone had a good time! I know that I sure did. I wish that it was under better circumstances that I saw everyone, but it is what it is. I'm taking one day at a time and hoping for the best.

I go back to Cleveland May 7, and will just have the usual battery of tests and appointments. I'll have the usual blood tests, chest xray and lung function tests. We'll see what my numbers for my lung function tests are and go from there. I will see my pulmonary transplant doctor as well as my rheumatologist and also my infectious disease doctor. My blood will be checked for the IGg levels to see what my antibodies are from the infusion I had a few weeks ago. We will come up with a game plan as to if I need more infusions and how much and how often I may need them. I am pretty sure that I will need more. I will update my blog after my appointments and let you all know where everything stands.

Before I sign off this time, I had to share something. The other morning when I woke up I had a song stuck in my head. It was "Breath of Heaven" which I had sang a long (long) time ago at church around Christmas time. I hadn't thought about (or heard) this song in forever and I can usually only remember the chorus of the song. While the song is mainly about Mary uncertain of why God has chosen her to carry and give birth to His son, I found that a lot of the lyrics could apply to any situation really. Especially mine. I am definitely waiting in a silent prayer, and definitely frightened by the load that I bear....check it out:

Breath of Heaven by Amy Grant

I have traveled many moonless nights
Cold and weary, with a babe inside
And I wonder what I've done
Holy Father, you have come
And chosen me now
To carry your son

I am waiting in a silent prayer
I am frightened by the load I bear
In a world as cold as stone,
Must I walk this path alone?
Be with me now
Be with me now

Chorus:
Breath of heaven
Hold me together
Be forever near me
Breath of heaven
Breath of heaven
Light up my darkness
Pour over me your holiness
For you are holy

Breath of heaven
Do you wonder as you watch my face
If a wiser one one should have had my place
But I offer all I am
For the mercy of your plan
Help me be strong
Help me be
Help me

First IVIG Infusion

I guess that I am slacking a little with updates. I had my first IVIG infusion on Tuesday, April 10. I thought that I would be there for at least 3 hours for just the infusion. I was pleasantly surprised and the infusion itself only lasted about an hour and a half. Doug took me in to the Surgery Center at Wayne and I got the IV in my hand (after two tries!) and on with the infusion! I had read that possible side effects would be a massive headache, possibly breaking out in a rash or hives, and nausea. So I prepared a little beforehand by taking benadryl and ibuprofen. They started me out at an infusion rate of 39 ml, then after 15 minutes if I was tolerating it ok (and I did) they bumped it to 59 ml for another 15 minutes. Again, after seeing I tolerated it ok, they bumped it to 158 ml for another 15 minutes and then full throttle of 316 ml for the remaining time.

During the first part of the process, we talked to the pharmacist and he explained the IVIG which is a blood product and is made up of over 100 different peoples blood. Certain things are taken out of the blood and used for the IVIG. Other things are added to it and the IVIG is born. (there are more technical terms of course, but this is what I remember, ha!) :) He also said the IVIG they use is more purified and so I would hopefully not experience not much, if any, side effects. I can say that I felt pretty decent after the infusion. I was very, very tired soon after getting home and crashed on the couch pretty early. Doug said there wasn't any hope in waking me, I was out for the count! I think I slept until about 10 am the next day!

As for what is next, I go to Cleveland May 7 and will see infectious disease and see what my IGg levels are. We will then come up with a "game plan" as to what we will do next; if I will need another infusion, etc. I will have to have bloodwork every 4 weeks to check my IGg levels regardless to see how I am doing in that regards.
Last week was a little rough and I *think* that I can blame the weather. I can't say for sure of course, but since we've had warm weather and then we had frost a few times last week, I'm going to assume the reason for me hurting was because of the weather. It's hard to get out and about because of using so much energy...but I also hate just sitting around/lying around the house as I believe that may make things worse. We were able to go to church this morning, and I was glad to get out on this beautiful day and enjoy just being alive. You just gotta take each day at a time and enjoy what you've got.

I still believe the phrase "Breathe in faith, Breathe out feat" and found a neat reading from http://daily.upperroom.org/?p=977

"When fear invades,
pervades, paralyzes,
I remember Jesus’ love
and breathe a prayer.

I do not have to wait for courage;
courage is not a feeling,
but a response to Spirit.

I breathe out,
relinquish fear, anxiety,
thank God for presence.

I breathe in,
receive peace,
and power in Spirit
to speak, to move, to act,
to decide, and to be courageous."

- Roberta Porter

I try to keep this all in mind when I am having a difficult time with my pain. I try to envision my breathing in faith and hope and love, and letting go of the pain, the fear and the anxiety of my health. I have faith that God will help me through this tough trial in life...I just have to keep hanging on even if it is just barely at times. I thank God for the pain I have had because it makes me thankful for the days that aren't so bad. He's still working on me and my new wings...I've had to learn lots of patience; I would like to believe that I gotten better in this department! ;)

I hope that I will see lots of familiar faces on April 28 (less then 2 weeks!) at the benefit Doug's work is putting on for me at the VFW in Greenville. If you are interested in coming, tickets will be at the door if there are any left. You can also get tickets ahead of time...just let me know and I can hook you up! There will be a dinner, DJ, silent auction, jail and bail, 50/50 and a slew a door prizes!! I can't wait to see everyone!!! If you can't make it but would like to donate, you can do so at any Second National Bank location. The account name is Kara Didier Benefit Fund. Doug and I just both cannot put into words how thankful we are to everyone that has helped us out in any way. The road has been really tough, but with family, friends and the great community that we live in has helped us in so many ways and we are forever grateful!  

The Spoon Theory

Below is a link to a wonderful blog article that explains me and the way I feel quite well. Everyone is always asking how I am doing or how I feel and they also go on about how good I look. I usually just smile and comment with an "I'm here" answer. I usually do not feel well and don't really feel like dwelling on it, so it's easier just to say, "I'm here". Really, that's as good as it gets. I am here. Things could be worse and I am thankful that I am at least here to feel the pain even though it sucks.

I have already posted the article link on my Facebook wall, so some of you may have read it already. If you're not on Facebook (or not my "friend" on there...ask me, I'll be "friends") :) then read away! :)

Quick update before you get to the article link...I finally got scheduled for my first IVIG infusion. I will go Tuesday at 9 am, and it should last at least 4 hours. I'm a little nervous about it, but I'm sure all will be fine. I sure hope this helps bring my antibody levels up!! I also got my schedule for my next Cleveland visit....going back up May 7....just appointments besides the usual lung function tests, bloodwork, and chest xray.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Happy Easter everyone!!