Shannonigans Lung Fund

$5,340 of $40k goal

Raised by 65 people in 12 months
Shannon Miller  MARYVILLE, TN

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.

Shannon



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Update 34
Posted by Shannon Miller
9 days ago
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Hello all! I thought I would update since it's been a little bit. I haven't been feeling good for over a week and I kept waiting to feel better. Well I gave in and threw in the towel and called my CF nurse. I had a sick visit where we decided on 1 IV antibiotic (Zerbaxa every 8 hours via IV drip (aka hanging bag)) and 1 oral antibiotic (Levaquin once a day) for 14 days. Towards the end of the 14 days we will see if I need another week as per my usual. IVs are draining and wear me out so I sleep more while my body is fighting this infection. I have a pinched nerve in my neck that I'm getting a nerve block on the 27th, that was their first available. They put me on their cancellation list in case there were an opening sooner. I'm not looking forward to a needle in my neck but I am looking for pain relief. Ok, I think that sums up the most recent health stuff. Thank you to everyone who continues to donate to the lung fund. It is greatly appreciated. Medical things pop up when you least expect it.

Until next time...
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Update 33
Posted by Shannon Miller
1 month ago
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Hello Shannonigans!

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...
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Update 32
Posted by Shannon Miller
2 months ago
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I realized I haven't updated my GoFundMe in awhile and I apologize for that. It has been a busy few months. The short update is the following. I finished 21 days of IVs on December 8th. I have some annoying right side pain for which I will be getting a MRI of my thoracic spine to check for anything that may be causing it. This colder weather and the fluctuation that has come isn't the greatest for my lungs. So I have had some pretty bad lung days. I'm not the biggest fan of these lungs of mine lately. I'm frustrated with my body and it not being able to do what I want it to. Then I push myself which then I have to pay for it and rest because it (whatever it is I did) wore me out. I have been great about updating my blog with more details. So feel free to click the link and read on over there. www.cfhappens.com

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...
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Update 31
Posted by Shannon Miller
4 months ago
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The cornhole tournament was a great success. We raised $1500! I'm in awe of the love and support from our family and friends. We are still in need of a lot of funds for the lung fund but every single donation means the world to us.
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$5,340 of $40k goal

Raised by 65 people in 12 months
Created February 20, 2016
$100
Linda Bryan Kling
1 month ago

Think about you daily and pray this transplant will happen soon, but it breaks my heart how sick you have to be, you are Super Woman and I believe in your strength. Love you with all my heart Linda xoxo

JH
$25
Joanne Haen
4 months ago
HA
$25
Holly Apple
6 months ago
LK
$25
Linda Kling
6 months ago

I love you Shannon and so sorry things are sucking extra right now , I pray so hard that things will get better and you can get these new lungs and start a healthy life ❌❌

SB
$25
Sandy Branson
6 months ago

Thinking of you and sending hugs

JH
$25
Joanne Haen
6 months ago
JT
$50
Jason Trent
6 months ago
SB
$38
Stephanie Blaser
6 months ago

This donation is made on behalf of Clever Container and Amy Vance

JH
$25
Joanne Haen
7 months ago
EC
$25
Elizabeth Covey
7 months ago
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