annsullivan's Journal

At first I wasn't going to write about what charity I think one of the grants should go to - I absolutly hate asking anyone for money - even if it is for a good cause.  But here is my choice - The Cystic Fibrosis Foundation.

Billy was born with cystic fibrosis (cf) but he was 9 before he was properly diagnosed. He was diagnosed with asthma as an infant - his sweat test (the test they do for cf) always came back fine.  When he had another one at 9 it came back in the "grey" area - but that is a whole nother story.  By that time he had a lung capacity of 30% - lung transplant level.  Thanks to a wonderful doctor & many prayers - along with being on the correct medicine his lung capacity level topped out at 50%.  Could you imagine living with 50% of your lungs & never complaining about it.  Kids with cf are so very special.  They have to get up at least one hour earlier than most kids in order to do their medicine every morning - just so they can breath - take a breath that the rest of us take for granted - before their day can start.  Also at night they have another hour worth of meds to do before they can go to bed.  Many have to be hooked up to feeding tubes at night so they can get enough calories.  Everytime before they put ANY food into their mouths they have to take a pill - more before meals - so that their body can digest their food correctly - so that they can get any nutritional value out of their food.  They are on what is known to most as a dream diet - the higher in fat food is the more they should eat - you see in order to try & keep their weight up they have to take in 1 1/2 times as many calories as a "normal" child their age.  Most of their calories are used just to breath.  You might think that would be fun - but as Billy use to say - try it for a day - it isn't s much fun as you would think.  Could his colon cancer have been a result of the cf - we'll never know for sure.  You see kids with cf have a colon that is always irritated - always having activity going on.  They are constantly asked by doctors how their poop is - a question every kid wants to have to answer especially as they get older.  All Billy ever wanted to be was "normal" - he has now gotten his wish.  He can now run & play without having to stop because he can't breath - gasping for air.  He will no longer have to explain or make up excuses why he doesn't want to sleep over at a friends house - who wants all their friends to see them doing their meds at night & then again in the morning.  He will no longer have to explain what the pills he puts into his mouth are everytime before he has to eat.  Why he is allowed to carry his pills with him in school when no other kid is allowed to.  He will not have to worry about all the school work he has missed & has to make up because once again he is spending at least a week every school year in the hospital because he caught a cold or the flu from someone & it has once again settled in his lungs & he can't breath. That doesn't even count the additional 2 week he will miss because of the antibiotics we have to administer at home 24/7 & try to work it so he can go to school for at least a couple hours a day during that time. He won't have to miss at least a day of school every month because he has to go to the doctors & also have a lung capacity test to make sure he has not lost too much lung capacity - which can signal an infection coming on.  He will not have to explain in gym class when they have swimming what that bump up by his shoulder is - a porte cathe inserted because too much scar tissue had built up in his arms from having a pic line put in every time he went into the hospital - he called it his 3rd nipple ( he did have a sense of humor about it).  He would not have to feel guilty anymore about all the money that went to pay for his meds every month just so he could breath - even though you never tell them - they know.  As more of the kids with cf are reaching adulthood they are finding it very dificult to get let alone hold a job.  Once an employeer realizes they have employed someone with cf & the companies insurance premiums skyrocket - because it is estimated that the meds alone - not including anytime they have to spend in the hospital - cost the insurance company $60,000 - $70,000 a year, the person will cf will suddenly loose their job. Did you know that kids with cf loose 1 - 2% of their lungs every year to the disease?  If they ever get onto the lung transplant list - the new lungs only last about 10 years before they have to start the process all over.  You have to start the process of getting on the lung transplant list at least 2 years before you might need them.  But you can't start the process until your lungs are consistently at 30% or less.  That means these kids have to walk arond on oxygen 24/7 - as teenagers!!!  It is hard enough being a teenager but...So you see if Billy even survived the cancer he would not have survived the cf.  His lungs took such a beating with the chemo that he was on oxygen 24/7 already & he never would have quilified to have a lung transplant because of the cancer.  They couldn't take the chance of giving lungs to him - what if the cancer came back.  So now as I look back his death warrant was signed the day we found out he had cancer...would I trade any of it - No - not on your life - Billy taught us so much living with cf - how not to complain at what life throws you - it is what you are given & you just have to learn to live with it.  He never knew what it was like to take a big breath of air.  Most of the kids Billy went to high school with did not even know he had cf - you see through it all he never wanted to be treated differently - so he tried so hard to just be "normal".   One last thing about cf - most people are carriers - you just don't know it.  Both parents have to have the defective gene in order for your child to have cf - each child you have has a 25% chance of getting cf, a 25% chance of being clean & 50% chance of being a carrier.  The way most people find out they have the gene is when your child is diagnosed.  That is how we did.  One last thought, The Cystic Fibrosis Foundation as won numerous awards for the amount of money donated to what actually goes to research - it is very high they don't waste it - you know the money you donate actually goes to a good cause not into someones pocket.

I forgot to mention that after being diagnosed with cf - Billy played ice hockey for about 6 years - that was when the porta-cathe was inserted & he could no longer play contact sports.  He then took up the sport of tennis - played all 4 years in highschool - 3 as varsity & 2 years he was all-conference - his senior year he was elected co-captain & named MVP.  He did all this while only having about a 40% lung capacity...you see kids with cf are suppose to remain active - it helps keep their lungs open & the thick mucus moving around - it makes it easier for them to cough it up - now that is a pretty sight -  could tell you more about phelm then you would ever want to know.  Billy did enjoy coughing up the stuff & grossing his sisters out - like only a brother could!!!