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 37 years. That of course is just a number but it does show you the improvemnent in care over the years. I just turned 36 this month. 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 start the lung transplant center search. Double lung transplant in Cystic Fibrosis patients is very common as the lungs get sicker and sicker. There is a lot that goes into deciding what transplant center to use and being evaluated, approved and listed.
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 whatever transplant center we choose. 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.
Until next time...
It's been awhile since I've updated. I had am MRI on my neck and upper back a few weeks ago. I finally got the answers after the holidays. The results showed that I have a pinched nerve in my neck (minimal C6-C7 disk impingement) causing the neck pain and headaches. The upper back portion didn't show anything that is causing the lung/chest pain. That most likely means that it is pulled muscles from all of the forceful coughing. I am now waiting to hear about a referral to a neurosurgeon for the pinched nerve in my neck.
My transplant clinic in the 17th. It was supposed to be the 10th but it never got scheduled correctly therefore I had to change it. I received the itinerary for my clinic appointment. It is an all day affair. This time I have lung functions, chest x-ray, labs, barium swallow test, see the doctor and then finally pulmonary rehab. Each time I go to St. Louis for transplant clinic I have to make the 8.5 hour drive there the day before my appointment. I am there for my appointments, whether it's 1 day or 3 days. Then I have have to make the 8.5 hour drive home the following day. With each trip we have gas, hotel, food and anything else that may come up. At this point the gofundme account helps cover those costs and is a stock pile for the transplant to come. All of the donations are a huge blessing. I can't even put into words the appreciation of the donations along with the prayers and positive thoughts. I will be updating my blog ( www.cfhappens.com) after the transplant clinic.
Until next time...
Thank you for everyone of you that continues to pray for me and my family. Your prayers are so greatly appreciated. Please feel free to share this GoFundMe page with your friends and family.
Last but not least I see my transplant team at Barnes Jewish Hospital in St. Louis Tuesday January 10th. I will update after that appoint with more info.
Until next time...