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OK we are t-minus 6 days and 23 hours till the Great Strides walk for Cystic Fibrosis event in White Marsh Maryland where the defunct Maryland field hospital CSA .. soon to be reborn buy the phoenix of my will , will be walking . I know times are tough but for a moment im gonna go all Homless begger on ya .. i dont want beer , or hookers , nor drugs god knows i have enough of those 😛 … what i am asking for is to help find a cure for CF by donating to the CF foundation for reasurch .
There are 2,500 kids born each year with CF , that means 2,500 new kids that need to suck on neb cups to keep thier lungs some what clear, that have to take enzymes to digest thier food or things get nasty , that have to see their hospital rooms more times than they will see birthdays.
So if you can help out please do , not breathing sucks , bowle ubstructions suck , constant doc visits suck oh and the fact that i dont have my own lungs anymore sucks … no kid or adult should have to go throught that pain physically and mentally.. besides no one else can wear a scar as awsomley as me 😛 .
Here is the website if you want to and can donate , like i said times are tough so dont think im trying to shake ya down , if you cant give then come down to the park to cheer us on 🙂
.. if the page doesnt work , or your uncomfortable with online coin transfers then hit me up .http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=5129&idUser=224499
[/url]I know a lot of folks dont even know what CF is or if they have heard of it they know very little becuse we are not a large population ( only around 30,000 of us in North America today) . Since i have asked for your hard earned coin i will tell you some things about CF the good the bad and the ugly , scientific and personal .
Cystic Fibrosis is the number one genetic killer of children in the world . It mainly effects anglo saxon kids but there are many cases of it in the Lationo and Asian comunities along with a couple cases in the African communities . Cf effects the lungs and digestive system by secreating very thick mucus into the lungs and around the pancrese and the Liver .
In the lungs mucus clogs up the air ways and destroys the hairs that move forgien matter out, so’s not to allow the vital O2 Co2 transfer giving us an appearence of our shoulders up around our ears ,and giving us the constant CF cough . It also collects all kinds of nasty bacterias and keeps them there giving CFers constant infections that scar our lungs causing irrepirable damage . Our immune systems are always in over drive working our bodies defences to the bone , with that viruses find it easy to attack ..pesudomonius a form of pnemonia is the most common it scars the lungs and eats away at the tissue , in a bad case we will cough up blood in amounts from as little as miniscule to so much you have to go to the hospital to get surgery to mend the hole . Aspergilis is another nasty fiend we have to ward off , basically its common mold kept in the lung from being in moist places which again we cant hack out . Aspergillis is a nasty preditor that eats your lung , i personally had 3 golfball sized holes in my right lung from it , turning my lung into essentally soup. Bercholders Ciepecia is another fungus that gets us , its a common mold used in fertalizers and other organic soil treatments , it will do nothing to the average Joe but to those with respertory illness or poor imune systems it will act the same as Aspergilis , but if you test positive for this fungus it is a death sentence , you can not get a TX if you culture it and you lung function will drop like a rock in a mtter of weeks .
In the digestive system the liver and Pacrese are coated with the mucus inflaming them to the point where we must take Enzymes to digest our food. We dont secrete enough insuline to break down all our food because of the mucus coverage and the pills do the rest . Our livers cant break down the toxins in the food or drink very well so every once in a while we have to take meds to stop the inflamation from all the toxic build up ..it is not uncommon for CFers to go into complete liver failure and need a liver TX .
Thats it in a nut shell i could go into the delta508 giene deffect but that is boring and too high brow for me.
Im gonna tell you a little Bit about my life with CF , if you are sensitive you may not want to read this . Im going to be blunt ..i just hope i dont come off as a pitty case ugh here i go
The first real experience i had with my CF was at age 6 or 7 . I was in a public elementry school and was not shy at all about speaking about my CF . I told all my little friends why i had to take meds and in turn they told thier parents …. I got expelled from school . The parrents thought i would give all thier kids somthing so they had me kicked out , it took me 3 weeks to get back into sachool after my CF Doctor went to the school to meet with all the parents . I was allowed back into school but i was constantly ahrrases and beat up , the teachers and administrators turned a blind eye to it and the parents of the other kids encouraged them to keep doing it . We had to move so i could go to another school and i didnt speak of my CF for many many years.
When i hit middle school i began to meet other CF kids . i First met Dean and Damion two brothers with CF . After a year of knowing Dean he got really sick and was in the hospital all the time . Within that year he had to have a tx, but back then they only did lobe ectimies ( just replacing a lobe) he got one from his mother and died two days after surgery .. he was only 15. Dean is still doing well and runs the Chicago marathon to this day . A few years later i met Marry when i was in the hospital with my first bought of Pnemonia. We became fast friends and i learned alot from her being 6 years older than me . We would hang out in each others room and play the nintendo in the game room , but then i left and she was still there . i never could have imagined how sick she was , she hid it well. I would go to the hospital to visit once a week and we would just hang out . I asked why she wasnt going home and she told me she needed a TX but no one in her family was compadible so she had to wait . She got her Tx finally in 1993 and died 3 weeks later frm an infection that developed durring surgery that infected her new lobe.When i hit high school i met Chris, she worked at our local Pizza joint . After a bit she began to date my Aunt ( yes she is gay) . We were very close like family . I learned all kinds of naughty tricks we could pull with our meds like how to cheat at poker while drinking ( our enzymes break down the sugars in acholhol making it hard for us to get drunk). SHe taught me the signs that i was getting sick , all the little newances. Chris began to decline in 1994 and had to quit her job . Like all of us hard headed Cfers she kept on trucking going around with a portible IV pumping her full of meds and an oxygen tank over her shoulder. She got on the Tx list and was ready for her TX. One day when heading to the Airport to pick up my aunt Chriss began to cough up alot of blood i would say at least 2 cups. WE put her in a wheel chair and called for an ambo. SHe was taken to Hopkins and rushed into surgery to fix the Hemothorax . When she was out of surgery she was put on a vent till she could get a TX the docs said. Over a few weeks she got better and the tube was taken out and she was put on a nasal canula. Chris knew she was dying ang pleaded for days to die at home the docs agreed. We went to pick her up the next morning and to our suprise she was on the vent again , over night she went down hill . we sat in her room me on one side of her bed my aunt and her mother on the other , Chris took a deep breath coughed up a good amount of blood out her nose and went into respritory arrest .. she died 5 minutes later , that was 1996.
You all know my story of Tx throwing the PE’s and all so i dont think i have to write all that again , if you dont know its on thids forum some place PD kept it quite detailed and on a day by day basis .
I didnt write all that to guilt anyone i just want every one to have afirm knowledge of what its like , and while i cant convey the emotions , pain and fear we all faced i think i have said enough to get the gist across ..
I want to thank every one in advace if the donate or just wish well , and i thank you for putting up with my bad spelling too 😛
Good Luck I hope you raise a lot of money for CF. It’s also great how well you are doing and I hope you keep doing it. (does that make sense?)
ok what im about to say may sound cruel, heartless and you all may just think me a bastard for it /shrug…but i do not donate to such research because well..i do not approve of animal testing..and that is what such research consists of..maybe when they begin using the computer programs i will find a way to donate…but until then..im sorry..no can do
The company I work for raises thousands each year for such charities. Two years ago we raised enough money for two of those CF machines…. I can’t remember the name of those machines. But, they are around $10 000. The government won’t pay for them…. even though they prolong life and make it easier on the person and on the family.
I don’t like animal research either…. but, it is a necessary evil.
We still raise money for other charities (it’s called Friends of the Family) But, right now our focus is on the Olympics we’ve agreed to raise 2 million (that’s about 3000 per store.)
Romeodanny wrote:The company I work for raises thousands each year for such charities. Two years ago we raised enough money for two of those CF machines…. I can’t remember the name of those machines. But, they are around $10 000. The government won’t pay for them…. even though they prolong life and make it easier on the person and on the family.
I don’t like animal research either…. but, it is a necessary evil.
We still raise money for other charities (it’s called Friends of the Family) But, right now our focus is on the Olympics we’ve agreed to raise 2 million (that’s about 3000 per store.)
i have one of those machines its called the vest. its a large pump that hooks to a vest and percusses the chest to remove mucus.
CF research isnt only medicine it also develops machines for treatments. but yes it is a necisarry evil to use animals..without it we would have no medicines and would probably all die of the flu , and i would have died long ago .
I donated. When I was 8 years old my two best friends who were sisters, died within 4 months of each other. Sharon was 8 like me and Janice was 7. They had cystic fibrosis. I’m very grateful for the advances that have been made. I only wish it would’ve been sooner.
tdm
twindragonsmum wrote:I donated. When I was 8 years old my two best friends who were sisters, died within 4 months of each other. Sharon was 8 like me and Janice was 7. They had cystic fibrosis. I’m very grateful for the advances that have been made. I only wish it would’ve been sooner.
thank you , your are very generious.
I also say the same thing about the meds advancements , now they have out a medicine that can kill the bug that does most of the lung damage before it can do anything segnificant . with that Med the life expectancy of a CFer went from 1 in the 1950’s to 41 for anyone unfourtumate enough to be born with it today .
I too have watched all but two of my CF friends die , and one is not doing well now saddly..the other well he is a machine 😛 .
here are some pics from the walk tonight
Me and my custom shirt 😀
PD eating a hot dog she is gonna get me for posting this 😛
Me and Alyssa after dinner of hot dog and chipsI wish well, I do hope they find a cure someday for all that ails us, but… not getting my hopes up, unfortunately.
I don’t personally have money to donate to charities (yes I know I get a tax break) but when I do, I will probably give, but right now, it’s not feasable.
Yes, animal testing is a necessary evil, and, unfortunately for me, the testing for diabetes stuff is on 14 day old human fetuses. So I can’t say that I don’t want it done.. that would be hypocritical of me.
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