Hello Everyone,
Yesterday at Emory went pretty well all things considering. I was suppose to start the trial anti rejection drug but they still don't want me too due to some of the issues going on. Basically yesterday these things happened:
1. the anti rejection drug I'm on has been making my BP high since the transplant and now I'm on BP medication. I looked at Dr. K and said ,"I'm on BP meds at 30?" He said not to look at it that way, I just had a transplant...
2. My liver profile is off.....stopped another med for now.
3. Cough was still terrible so he gave me a new med on top of the inhaler. It seems to be helping. My tummy might get flabby again, hee hee.
4. Sleeping. I'm not sure if I know what that is anymore. I have not really slept in weeks. The cough is getting somewhat better so I was able to rest but these steroids are still making my mind race and I'm not sure they make a drug that can handle my mind right now.
5. GVHD- I'm still having some of the rash and really want it to go away so I get off some of the meds.
So yesterday ended up being good in the sense that I didn't have to spend 8 hours at Emory like I thought I would have to and luckily my cuz Andy was able to jump out of bed and take to Athens early so my Mom could go home for a much needed break.
I have a lot more to say about a lot of fun things that happened today but right now my heart is so the lady I mentioned before, Janet Pope. Right now, she is on life support at Emory. She had her transplant 2 months before me, then got pneumonia, and now has a lot of other things going on. She has two kids. Besides just concerned about her and her family, it really shakes me up about how serious of this is, and how careful I really need to be. Please pray for her and her family.
WELCOME
Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!
Please read, comment, enjoy, learn, grow, LOVE LIFE.
Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment