Lungs for Missy

 
Raised: $10,091.00
Goal: $25,000.00
 
 
 

Created by

Missy Sedam

1703 Friends

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Where do I begin? My name is Missy and I am 39 years old with Cystic Fibrosis (also CF). (For more information about Cystic Fibrosis please visit cff.org.) I'm also the mother of an eigh... more

 
 
 
 
 
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Updated posted by Missy Sedam 5 months ago

I am preparing to take down this page and I just want to thank everyone who donated to my lung transplant fund from the bottom of my heart. My transplant was April 1, 2013 and while transplant life is not without its challenges, and I may one day have to face rejection, infection, a second transplant, or even death, my life right now is BLESSED and I have this time with my son. Thank you, thank you, thank you. If you want to keep up with me and you are not my friend on facebook, search for Missy Sedam or email me at mmroark2@gmail.com. God Bless You and Your families.

 

 
 

Updated posted by Missy Sedam 11 months ago

I am so sorry I haven't updated. I surprisingly was on the list for only two weeks! Praise God!! I received my second chance at life April 1, 2013. I am currently going through the recovery process and dealing with a lot of personal depression. (I hear it's common after transplant) I'm so weak in my legs from being on a ventilator and sick prior to transplant. I so appreciate this site because it's been the only thing that has kept me afloat financially. Please consider donating to my lung transplant fund. I am especially needing your help right now.

 
 
 

Updated posted by Missy Sedam 13 months ago

Hey all! Sorry I haven't updated on here in a few weeks! I am now officially on the list for a double lung transplant at Barnes Jewish Hospital in St. Louis! Thank you, God! I can't even begin to describe the feeling when the doctors in Indianapolis had told me that I was too sick to get listed and left little hope or even compassion in their words. It is such a relief. I thought I would try to answer a few FAQ that I have received.
1) So when will you get new lungs? or What number are you on the list?
*Lungs used to be allocated based on the # of days you were on the list, so doctors would have to try and predict when you were close to needing a transplant and get you on the list. Then you waited and waited as your number moved up on the list....first come first serve sort of thing. That didn't work. People died waiting and also sometimes a person would improve health-wise and get the call---and have to make the choice to pass on the lungs or not. These days, lungs are allocated based on NEED. Therefore you go through your lung transplant evaluation and each area is "scored." This link here is helpful in explaining how they achieved my score of 43.2. http://en.wikipedia.org/wiki/Lung_allocation_score

2) So how long will you have to wait?
*I am told that my score is in a great spot and my call could come in 2 days or 2 months. The only thing I have that works against me is the fact that my blood type is O . O blood is the "universal donor" ---- which means the first set of O lungs won't necessarily be sent to the next O person on the list....they will work for ANYONE on the list. Therefore, O people wait a little longer...it tends to be a longer list.

3) Are you living there?
"Yes, I have to live within a 4 hour drive MAXIMUM to arrive at the hospital if I would get the call for new lungs. Barnes was uncomfortable with me living in Indianapolis based on my 43.2 lung allocation score. They felt if I were further down the list, I could live at home, but since I'm not... they want me close by. I may be able to make short one day trips back to Indianapolis, but they want to know before I go, and they suggested it might cause me to lose out on a set of lungs that might need me there right away.... SOOO, I am currently living in a Residence Inn by Marriott. The sales manager is working with us and it really is an awesome fit for us right now. The rooms are like apartments, we have a full kitchen with pots/pans/dishes, etc., they provide a grocery shopping service at no additional cost, there is a gym, indoor pool, free buffet breakfast every morning and dinner three nights a week. OH, and maid service daily! No utility bills and the cable tv and Wifi are included, so you can't beat that!
We are on a waiting list for an affordable apartment, since this discounted rate can only go for so long, we are told.

4) Will the new lungs have CF?
*Weirdest thing ever.............no they won't. However transplant is a new and different "disease" I will be immuno-suppressed for the rest of my life, so my body won't fight the foreign lungs in my body. That will make me vulnerable to the plethora of viruses, bacteria, and fungal infections in the air, water, and soil. In order to fight these infections, you sometimes have to turn down the anti-rejection medications....... so it is a constant balancing job between infection/rejection/infection/rejection ,etc. Also the side effects of the anti-rejection meds are pretty daunting. That said, I have NEVER met anyone that regretting getting their lung transplant. To breathe freely is such a gift!

Anyway, feel free to email me or post your questions below on this page, I do answer them eventually.

Thank you again for your generosity in donating to my lung transplant fund. We did find out this week that my insurance has denied me the $10k stipend for travel, food, and lodging for transplant, therefore it is all out of my pocket, including maintaing my home mortgage and expenses for my family when we return eventually to Indy.

Praising God for all He's doing and all He's going to do in my life!
Love you guys,
Missy

 
 
 
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Created by Missy Sedam on January 19, 2013

Where do I begin? My name is Missy and I am 39 years old with Cystic Fibrosis (also CF). (For more information about Cystic Fibrosis please visit cff.org.) I'm also the mother of an eight year old boy that is an angel on Earth. Brendon is the light of my life. He has such an amazing sense of humor and compassion. He has some special needs and I spend my time when well taking him to his physical therapy, occupational therapy, speech therapy each week....as well as loving every minute in engaging him in the world around him. We have so much fun :-D I stay involved from my hospital bed (conference calls with teachers, etc) when I'm sick, but there is so much more I want to do and be for him and my lungs limit me.

It appears now my lungs have progressed to end stage CF and a lung transplant is an opportunity to prolong my life. WOW! This is a BIG scary deal for me, but also if I let myself dream for a minute.....transplant would give me an opportunity to do all of the things I've only dreamed about!  Pay this kindness forward for one! Run a marathon! Cuddle with my loved ones without feeling like I'm breathing through a straw, blow out all of the candles on my ever growing birthday cake!, dance, run and play with my son on the beach. 
A lung transplant is a pricey procedure and my transplant also will likely be outside of Indianapolis in St. Louis.  The average cost of a lung transplant is nearly $500,000.00!! That number can climb quickly if complications occur. There are many transplant expenses that are not covered by insurance and the medications that I will have to take for the rest of my life are very pricey. I will also have multiple expenses for the travel, lodging, meals, and expenses back home. I do not want to place my son in poverty for my chance at a new life. so I am approaching this possible treatment cautiously. Many people have asked how they can begin fundraising to help. I am so touched and feel so loved!  I have the most awesome fierce friends. 

 
 
 
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Thank you guys!

posted by Missy Sedam Roark 15 months ago

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Recent Donations (129)

$10,091 raised by 129 people in 15 months.

$20.00

Beth Anne Manion

8 months ago (Monthly Donation)

 
 

$20.00

Beth Anne Manion

9 months ago (Monthly Donation)

 
 

$20.00

Beth Anne Manion

10 months ago (Monthly Donation)

 
 

$1,000.00

Anonymous

10 months ago

 

$50.00

Brett Dills

11 months ago

 
 

$20.00

Beth Anne Manion

11 months ago (Monthly Donation)

 
 

$250.00

Sarah Lacey

11 months ago

 
 

I am so glad I learned of your need so I could help! You are on the upside of your journey- keep strong and keep believing! I will keep you and your son in my daily prayers now! You will win! Sincerely, Sarah Lacey

 

$200.00

Heather Cariou

11 months ago

 
 

$25.00

Kayla Chafe

11 months ago

 
 

My lil brother is your friend Jamie Chafe, I send positive healing light and love to you! Kayla

 

$20.00

Deana Schmidt

11 months ago

 
 

Wish I could do more to help but have been off work almost a year with surgeries. Best of luck to you & your son & family.

 

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