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Old 05-10-2013, 12:03 AM   #1
ToyComa92 [OP] ToyComa92 is offline
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Good vibes, Good prayers and Hopeful wishes.

LONG READ, WORTH IT.

Hey guys, Currently im in the process of being put on the national Donor List for a new set of lungs. Monday i should find out where il put on the list and given a rough estimate on long i can expect to wait. I just finished up all the pre-testing for it a couple days ago so im really hoping it all turned out in my favor.

A little backstory,

I was diagnosed with Cystic Fibrosis when i was nine months old. It is a primarily a lung disease that damages the lungs ability to remove mucus, which is thickened and increased due to the disease. It is also in my sinuses and intestines and can secondarily damage pretty much everything through out my body. My lungs and back are brain are current the most damaged from the disease. I lived a great life throughout my k-12 years. Pretty much had a very mild case of this disease when i was younger, But as i grew older i seemed to begin to think i knew everything, My mom left my dad and i and became an alcoholic and decided to become homeless, For two years my dad and i tried to save her but it was a lost cause I suffered huge depression for the events as she attempted suicide once and i witnessed alot of bad things between my mom and dad. I can say now that i greatly understand the situation much more at my age of 21 but unfortunely my mom past away my freshman year in high school, That threw my life into a downward spiral where i pretty much had no regard for my well being. I was constantly in trouble, Ditched all the time. Smoked Cigarettes and pot...Drank... I was really stupid and believe me i know this. I lost all common sense to keep up with my health and i lost almost half my lung function over the course of six months.

I was intibated (Ventilator down throat) about two years ago and that woke me up like a cold shower at 4am. It was horrible as i actually died for two minutes. From there i smartened up and dedicated my life to my health. About a year ago everything took its toll on me and i got sick pretty much three times a month. In the hospital for weeks at a time... On October of 2012 i was sent home to die with my loved ones, Was given two weeks to live. My grandparents and father said no and saved my life. I was given home IVs and constantly care from them both and it saved me. Unfortunely when you lose lung function you lose it for good. PFTs are what kind of measure where you are in your breathing, For a healthy human it ranges around 90-100. Athletes run well over 100 most of the time, When i was boy i topped 110 and was the healthiest i ever was and ever will be. two days ago at testing i was 16. I have been on oxygen since october and have pretty much had no life since then. Cant go out and do much... Constantly dealing with pain and sickness and also experienced two major seizures but since october I've made a major turn around. I weighted 95 pounds (the disease makes it very difficult to gain weight) and couldn't even do PFTs. Today after taking care of myself very diligently i am at 130 pounds and can actually breath with a lot less oxygen needed. and have been seizure free for awhile! My doctors have praised me at what a turn around I've had. In october i was told a lung transplant is no longer an option because of how sick i was.

Luckily! my doctor and family convinced the medical transplant team at UCH in Aurora, CO to give me another chance, I was given a contract and had the terms of
1. Being off ALL narcotics
2. Attend Pulmonary Rehab for eight weeks
3. Listen to all medical advice given
4. Gain a weight to reach a bmi of 18.5 or higher.

I reached all those goals and last month was told by the head doctor that he will gladly give me the chance at a lung transplant because of how amazing i pulled through and changed my health. Unfortunely i am still in need of lungs to be given a better longer life. Given new lungs i will no longer carry the disease in my lungs but will still have it in my sinuses and intestines. I take well over 20 pills a day alone just in pills. I also take four nebs a day and do a vest treatment for twenty minutes twice a day. I also do four IV medications a day and am on Oxygen 24/7 and have to wear Bipap at night. I am willing to do ANYTHING to be able to shed some of these life constrictions so i can enjoy life and get back to doing things i love. After being transplanted i will only have to take pills (anti rejection) for the rest of my life which is like Day and night difference for all the health things i do now.

I have come to peace with my mom, And forgiven my father for his part as well. I pray for her to be forgiven by god everynight, and pray for my father to do better. (Addicted to drugs and crime) Unfortunely ive been dealt quite a hand in life but my father loves me to death and he saved my life, My grandma has been one of the best things in my life, As well as my uncles.

I'm sorry for this to be so long but i felt i needed to give backstory for a true reason to pray for me. I only wish to be given the gift of transplant as quick as possible. Please, Pray for me and send me good wishes and vibes. Things have gotten better and i can say my faith in god has been slowly renewed

Thank all of you, Even if you just read my story.

Feel free to ask any questions, Nothing is too personal. If you decide to be rude or joke about anything in bad taste i will report you to mods without response or any forewarning after this.
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Old 05-10-2013, 01:15 PM   #2
ToyComa92 [OP] ToyComa92 is offline
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This weekend is going to FLY by.
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Old 05-10-2013, 01:20 PM   #3
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Thank you for sharing with us. We'll pray for you and your outcomes . God bless you and good luck Jon.
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Old 05-10-2013, 01:27 PM   #4
ToyComa92 [OP] ToyComa92 is offline
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Thank you sir.
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Old 05-10-2013, 01:33 PM   #5
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Prayers and good thoughts sent bruda!
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Old 05-10-2013, 01:42 PM   #6
I bring the feel goods
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If and when you get a transplant, make you go to a doctor that has performed them with successful results previously, if you have a choice.

This may sound like a stupid comment but many doctors specialize in something, lets say knee replacements, but they preform shoulder replacements, which is where most of their negative results come from. Rarely do doctors disclose that little tidbit.

But medicine has come along way, basically anything can be transplanted, including faces, arms, legs, etc.. You will be in, and are in, much hands as opposed to 20 years ago.


Hopefully it all goes well
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Old 05-10-2013, 01:45 PM   #7
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Thanks for sharing your story. My mother went through a heart transplant years ago....wasn't easy, but like you stated, the improved quality of life was more than worth it. Wish you and your family well, you'll be in my thoughts. Hope you get on the list soon, Keep us updated.
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Old 05-10-2013, 01:47 PM   #8
ToyComa92 [OP] ToyComa92 is offline
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Quote:
Originally Posted by TeamSarcasm View Post
If and when you get a transplant, make you go to a doctor that has performed them with successful results previously, if you have a choice.

This may sound like a stupid comment but many doctors specialize in something, lets say knee replacements, but they preform shoulder replacements, which is where most of their negative results come from. Rarely do doctors disclose that little tidbit.

But medicine has come along way, basically anything can be transplanted, including faces, arms, legs, etc.. You will be in, and are in, much hands as opposed to 20 years ago.


Hopefully it all goes well
Im with the University of Colorado Hospital Transplant center. They have successfully donee 14 lung transplant this year. Thats half of what they did last year. So they are doing good this year, There statistics show that 74% of all lung transplant patients live past the five year mark. Which is a lot of time to enjoy life!

Im definitely in good hands Thank you sir.
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Old 05-10-2013, 01:57 PM   #9
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Good luck Jon we gotta meet up sometime
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Old 05-10-2013, 02:17 PM   #11
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Good luck, Jon! Seen a couple of your posts and am proud of how positive you are given your whole back story. Keep us posted and take care.
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Old 05-10-2013, 05:07 PM   #12
ToyComa92 [OP] ToyComa92 is offline
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Good luck Jon we gotta meet up sometime
Thanks man, Yah definitely Preferably when im not chained down to a hose.
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Thank you, I appreciate any good thoughts my way

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Good luck, Jon! Seen a couple of your posts and am proud of how positive you are given your whole back story. Keep us posted and take care.
Thanks man, Yah i used to think my life was the worst then i opened my eyes and saw what was around me. My life could be so much worse. Im very grateful for the life i was given. My heart goes out to the people who cant walk, People who cant hear or see... Thats a true tragedy, Never being able to see this beautiful country. Hear music or walk the great earth. How those guys get through life is an inspiration to me at the least! I just got to focus on the great things in life and let fate decide.
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Old 05-10-2013, 05:55 PM   #13
With sufficient thrust, pigs fly just fine.
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Thanks for sharing Jon! Prayers commin your way right now!
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Old 05-10-2013, 06:00 PM   #14
ToyComa92 [OP] ToyComa92 is offline
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Thanks for sharing Jon! Prayers commin your way right now!
Thanks Chris!
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Old 05-10-2013, 06:13 PM   #15
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Prayers coming your way, best of luck!

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Old 05-10-2013, 06:16 PM   #16
ToyComa92 [OP] ToyComa92 is offline
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Prayers coming your way, best of luck!

Thank you!
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Old 05-10-2013, 06:26 PM   #17
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Prayers ur way from the fam
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Old 05-10-2013, 06:26 PM   #18
ToyComa92 [OP] ToyComa92 is offline
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Prayers ur way from the fam
Much Appreciated to you family
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Old 05-10-2013, 10:07 PM   #19
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I'll pray for you man.
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Old 05-10-2013, 11:32 PM   #20
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I'll pray for you man.
Means alot! Thank you.
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