Shannonigans Lung Fund
Where to start this and it not sound like an AA meeting....haha
I am Shannon and I have Cystic Fibrosis. Well, good try anyway. I was diagnosed with CF at 5 months old. Life with CF is all I know, it's my normal and I rock it! When I was born the life expectancy of someone with CF was 12. With the progress in research, new medicines and better treatment options the life expectancy has increased to around 41 years. That of course is just a number but it does show you the improvemnent in care over the years. I am 38 year old. I am thankful for every birthday I have because it means I am kicking CFs butt and defying the odds. You can stay up to date with me and my health by following my blog at CF Happens .
CF is a progressive lung disease with a multitude of other problems to boot. I have the digestive component as well. I am pancreatic insufficient which means that my pancreas doesn't work correctly. My pancreas doesn't make all the digestive enzymes I need to digest my food therefore I have to take enzymes (pills) every time I eat.
Now on to the reason for setting up this GoFundMe page. My CF has progressed to the point of needing to be evaluated for transplant. Double lung transplant in Cystic Fibrosis patients is very common as the lungs get sicker and sicker. We have chosen Barnes-Jewish Hospital in St. Louis.
We have started fundraising for furture medical expenses associated with lung transplant. Yes, I have insurance and it will pay for most everything. Most transplant centers require you to have a lump sum of money in an account to cover any surprise costs, copays for post transplant medicines, etc. We are working on getting as much money as possible into an account to prepared as best we can for the transplant process. Having the money in an account will hopefully make the financial aspect of transplant a non stressful aspect. We have to be prepared to cover a relocation to be close to Barnes. With this money we will also be able to cover living expenses, food, gas money, bills, etc post-transplant for those that take time off of work to care for me, one being my husband obviously. I don't want anyone stressing over money while we are working hard on my recovery after transplant. I'm a planner and I want to attempt to make the transplant process as smooth as possible. I know there will be bumps in the road but having this safety net will help cushion the blows.
There aren't words enough to express how thankful I am for everyone that has already donated to Shannonigans Lung Fund. It means so much to our family. Thank you to everyone who continues to pray for me, my health and my family. They are greatly appreciated. You all will forever be a part of my heart.
I have been on IV antibiotics and 1 oral antibiotic for 2 weeks. I decided to extend another week in hopes that I will feel better. The 2 weeks didn't cut it. I'm a little better but not up to par. I still have a nasty cough at times. It's one of those where I'm trying to figure out if it's just my normal or if it could be lessened by more antibiotics. Next order of business...hahaha. My depression has been on high alert and has been very hard to deal with. Being sick on top of my depression is very hard. I have had some very low days.
I do have a Shannonigans gear sale going on. If you are interested you can go to https://shannonigans.itemorder.com/
Until next time...
I thought I would give a life update since it's been a little bit. I have been holding steady lung wise. Of course I have my good days and my bad days. I take the good days and get things done. I take the bad days to rest and do nothing much. There are days I have to push through because I have things to get done. This is my life. It has been my depression rearing its ugly head more so lately. Depression is real and it is ugly. It has kept me in bed and in my own head. I call it blah. I have blah mental days and I have blah body health days. I am so thankful to my husband for being my rock and taking such good care of me. Thanks for checking in. Thank you in advance for any donations. They mean the world to our family and my future.