Out and fund-raising

I officially got dismissed from Duke University Hospital last night. It was 9ish before we got home, and I was already tired, but it was good to be home.  The only thing I miss from the hospital is the bed that inflates to your body, so there are no sore hips, etc. in the morning & I miss someone else preparing my medicine!! It took 45 minutes to prepare it today. I have to crush all the pills, mix them with water, then put them in the feeding tube. Garry crushed them and I mixed and administered them. Luckily, some of the meds come in syrup form, so that’s not so bad. I hope to get acclimated to being at home the next couple of days, then hitting post-surgery rehabilitation the end of the week.

I will be honest; I have lost quite a bit of ground by having the major surgery, then lying around quite a bit the last 3 weeks. I went to kneel on the floor last evening & barely could get up, due to weakness. I’m not complaining, I’m happy to have the new lungs, just giving an insight into how I’m doing.

I also want to share that God has placed what I call “angels” in my path at just the right moments. One time, I was particularly anxious, heart racing, and a pretty black woman came to my room to do an EKG, and as she was leaving, she said a prayer over me, in Jesus name, and my heart immediately went back to normal and I felt a calm. Also, while in ICU, there was a doctor I would see when I was walking, and he was just a quiet, steady presence, and always encouraged me when I walked by, and I’m sure he does that to everyone, but I wonder if he truly knows the impact he has on some of us. Then, today, one of the home health nurses took extra time, just to give me some much needed TLC . And, my obvious Angel, Garry, has been by my side every day, even sleeping at the hospital, the last couple of weeks in a recliner. Shelly had this apartment spic and span, top to bottom and I even noticed our laundry was folded when we got home last night. I have MUCH to be thankful to God for, including you reading this and keeping me in your thoughts and prayers.

On to another topic…some people have offered to help us financially, and after paying for the first month of post-transplant meds before leaving the hospital ($500+!), I have decided that this is a good time to set these wheels into motion! I have set up a fund-raising account with COTA (Children’s Organ Transplant Association). They help with transplant fundraising for children and adults with CF, possibly because it starts as a child’s disease, I’m not sure why?  Anyway, 100% of proceeds earned go to us, they don’t charge a fee, and donations are tax deductible! We had saved up enough money for approx. 3 months stay at a facility, which would cover the typical stay at a transplant center, but Duke requires 23 sessions of pre-transplant rehabilitation and another 23 sessions of rehab post-transplant, so that’s an extra couple of months tacked onto the stay right there. So, long story short, if you’d like to help out, that would be GREAT!  Here is a link to my fund-raising page:

http://cota.donorpages.com/PatientOnlineDonation/COTAforLyndaJ/

As always, thank you for reading my blog and I will continue to update!

Love/hugs/blessings
Lynda