Thursday, April 30, 2015
This house has had one crazy week.
We were able to spend a good chunk of time in Destin, FL for a family friends wedding. These are the type of family friends that you call "Aunt" and "Uncle" you the kids care share the same found memories of Shoneys with.
My sister, Angie, and our daughter, Laila, we both asked to be in the wedding. They all looked beautiful with the white sand and blue ways. It was so awesome to watch it all happen. One of those times you watch the father/daughter dance and tears come because you remember when you were 6 and vacationing with them, now we are all grown up.
The Tuesday before we left, Jeremy got a call (if you aren't sure this means, think of it, I guess, as a job offer) to a church in Norfolk, NE! Unreal. Exciting. Nerve raking. Plus many more emotions. The way he told we was actually kind of funny, the poor guy was getting so frustrating cause I was being my ditzy self. We have learned a ton about Norfolk, about Nebraska, and talk a ton about it during our 36 hours in the car. Please keep Jeremy and our family in your prayers while he deliberates. And thank you to everyone who has given us advice so far.
The last few days have caught up to me and I have been running a fever as high as 102. Thank goodness Jeremy could drive the entire way home because I kept falling asleep in the middle of a sentence. Today, I took a warm bath, medicated myself up, called the doctor, got on antibiotics, and the fever is down. Please pray that this will just take 10 days of pills, and I don't end up in the hospital again.
People may think I complain all the time, but I'm not. I'm just letting you know that even though I am blessed with a miracle in miracle with this gift. Transplant life is still very scary. One wrong cold, or pills not swallowed could mean a life...my life, and I fought too hard to be here. I can be fine today and in the hospital with pneumonia the next. I'm telling my story so that people can understand the real life behind it. The cold that Jer has, is a fever of 102 for me. There is no immune system, we transplant patients kill our in order to keep our organ happy where it is at. I'm not even that good of a patient, I try to live too much of a normal life.
Keep and eye out for a post tomorrow. I crossed off an awesome thing on my bucket list and have been thinking how to share it. But I am just going to do it! YAY!!
And I ask again to keep Jeremy in your prayers!
Tuesday, April 7, 2015
I hope that everybody had a great Easter. We had a relaxing one filled with jammies, steak, and peeps in our yard. Yeap, we got peeped. Ha, its actually pretty funny...Laila loved it! Church services where very nice, and it was great to sing in choir. Jeremy had sunrise service so during festival I was up and down the stairs so I could sit with the family.
I had a doctors appointment yesterday and it was probably the best yet. I once again blew all numbers out of the water. Jeremy actually laughed as I dusted my shoulder off on the way back from PFTs. 116%...so as I brag once again, my lungs are probably better than yours. My oxygen was 100% my entire 6 minute walk, which I managed to step over 2,000 steps. My XRay was clear. My weight could probably get better, but nothing was said. The only thing is that my BP is still a little high so they bumped up my meds again, and may need to add another "agent" to help lower it if this doesn't work. The Dr. pretty much said I was one of the best cases...blush.
My team is finally realizing that even though I am a great case, that I never do things easily...like weird blood in my throat, or asking for a dog, or getting sick on holidays. But, this has pretty much been me since I was a child, just ask my mom, dad or sister. I have great timing. So after a few more questions yesterday Dr. Sonetti smiled and said, "Anything else? You want to travel to a third world country? Live in a dirt house underground?" HA, no...I think I am pretty much done asking to break the rules.
It is April of 2015 and its the first time I have been feeling "healthy" this year. Praise the Lord for giving me all the necessary therapies, meds, team, loved ones to help me fight CF and become a transplant patient. But of course, also for my hero I will never know...my donor. For his/her family for giving my a more than awesome gift.
Transplant isn't easy, the road is difficult, both physically and mentally. I've fought all my life and now, today, I get to breathe a little easier. Relax my stressed out mind and body. I am doing well, very well. I get to clean, run errands, do laundry, pack, bath Laila, and get ready to catch a train to Michigan. And I won't run out of breath, I can do it all and still have energy to entertain my child on the train.
Praise the Lord, for wrapping me in his arms. That tiny prayer I said over and over before transplant, is still being answered.