Lets be honest here for a minute in time. I hear Cf'ers and family members all the time say that they don't let CF get to them, or control them, or affect them. But I'm sorry, is that really true or just something you say? It gets to me. I have my moments where CF gets to me. Those moments like today when I had to park in the handicapped parking for the first time because my 6 yr old son with can't make it long distances. Ya, that got to me. Then we get in the store and he immidiatly asks to sit in the cart! He can't walk around much. You bet that got to me! Today my middle child threw another all out tantrum at this store out of nowhere, his entire personality has changed since his brothers been in the hospital so much these last few months. Uh huh... that got to me too! I read on a fellow CF'ers facebook today that one of their friends with CF passed away today. My son has been using his oxygen more in the last two days again, so then my brain goes into overdrive. Damn it, people it GETS to me. How can it not get to you?! No way do I let it control my life, but I feel I give it the respect it deserves as a horrific opponent. I give myself the ok to have my times of mourning, then I wipe the tears from my eyes and put on my all too famous "strong mommy" face and dive into another day of it.
Today I paid very close attention to Conner's treatments and how long they take, and how long cleaning it all and preparing it all takes, the bolus feeds too...it is ridiculous! My child did 24 different treatments today, some nebs, inhalers, antibiotics, enzymes, etc etc...He also did PEP 4 times today, he did 2 bolus feeds today....i cleaned all the am nebs with the boiling water got it laid out to try and you blink and it's lunch time...so it's bolus time, it's enzymes, it's albuterol. it's hypertonic saline time. don't forget PEP. then he has a school teacher come to spend an hour with him. Then it's dinner time. it's enzymes it's bolus. Then bedtime meds...flovent, inhaled gent, hypertonic saline, flovent, cipro, zyvox and more enzymes for his night feed. Look I'm just being honest here. His entire day is about cf. his body is so worn out that he sleeps in, so we squeeze all of this in, in the 10 hours he's awake. How can it not get to me? He never complains, but it's not ok that he's sitting on the couch doing yet another treatment and watching his younger brothers running around playing. His free time is almost non existant it seems. There is always something. You clean up little bit of cf...then it's time for the next meds....
And since we're being so open here let me tell you why else I'm upset about. That damn Vertex clinical trial announcement yesterday by the CF Foundation. in a nutshell..."we're excited to announce a successful phase 2 clinical trial of this vertex compound, (that literally goes in and fixes the underlying cause of cf) We will be looking to move ahead to the next phase for patients to test out in the later part of 2010" . This stuff is amazing. it's specifc to Conners CF mutation (DF508)...which means his body makes the proteins its supposed to in the CFTR but can't release it as it needs to, to make it work properly. This magic new compound (a pill i believe) goes in to the CFTR, gets that protein out and where it's supposed to. When people did this clinical trial it corrected their sodium chloride so that when they were sweat tested for CF, they were NO LONGER POSITIVE!!!!!!!!! Look it's not a cure. It's something HUGE to be able to use until the cure is found. it's going to save thousands of lives. keep thousands of families together. but woot woot...guess who doesn't qualify.
yep you guessed it. I'm upset today to see this wonderful new miracle drug, probably our only chance to keep our son alive is going to be in patient trials but his lungs are too sick to qualify. WTF??!!! Let me tell you something, you wanna see if something REALLY works? Give it to someone seriously sick from CF. I bet the results would show thru faster. and guess what?! you probably just saved a life from being lost. I'm just so upset...to know we're so close to that miracle (prob wont be fda approved for about 2 years or more) and that it's probably going to be too late for us. so please excuse ME if CF gets to me. I'm not afraid to admit it. It does.
My husband and I have our couples counseling this next week and we're going to be making a plan to talk about Conners poor health and dyeing to the kids. We simply don't know where to start. Probably can't even choke the words out. But our kids are scared. They know whats going on, but don't understand it. It gets me. Big time. I can't go thru one day, hell one hour without thinking about something related to Conner dyeing. ONE HOUR! I tell you people this disease ENRAGES ME! It fuels me to fight harder. It's what gets me out of bed in the am and line up all the meds and start preparing them, administering them then cleaning it up..it fuels me to raise even more money this year then I have ever for CF...because my life will be dedicated to killing this disease! Whether or not my Conner will be alive to get to that miracle cure I don't know. But I know I will be. It's gonna happen in our lifetime. It's going to save thousands of lives. I will simply not rest until all the CF docs are out of jobs....
because we no longer need them...
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Did You Know....
There are over 100,000 people, the size of a small city, on the transplant list in the US.
There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
I'm not sure what I can say to follow your post. I am so glad that you have this blog as a place to get that out and on "paper." I hope that it felt as cathartic for you to write it as it did for me to read.
ReplyDeleteMy situation with CF is very different. Emily is healthy right now, and yes, we have the never ending cycle of nebs, vest, sterilize this, scrub that, enzymes, vitamins, antibiotics, get a tube feed ready...and all the insurance, prescription, paperwork stuff that goes with it. But my day has far more breathing room than yours does.
I, too, wish you had one hour without it. I wish it would go away for all of us. I hate it, and there is not a day when I don't cry or gat mad or at least have a fleeting thought about how this stupid monster is affecting my life, or Emily's life, or whatever.
Of course it gets to us. How can it not? You are absloutley entitled to those moments. Let it rage!
Once again, you've given me my push for the day to put in some hours planning our fundraiser. I always feel a little funny telling people to "help save Emily's life" since she's so healthy. I show a video of my perfectly healthy looking little girl, and I wonder if the audience gets it. This year, in my introduction I'm going to talk about the blogs that I read, and about the people who have a very different CF experience that we do. You and Conner will be in my heart the whole time.
Take care, and know that you guys are in my prayers.
Thank you for posting this and for being so honest. I've been following your blog closely ever since I saw it linked on Run Sickboy Run, and as soon as I went back and read your introductory post I knew I was going to love your writing. Thank you for celebrating life, and for not oversimplifying this disease - either positively or negatively.
ReplyDeleteThoughts and prayers coming your way for the roads ahead, and please know that your family is an inspiration in battling CF with grace and honesty.
I sit here and read your post from my daughter's hospital bed. Once again we are in on Tobi I/V, inhalant, ceptazamine I/V.....not to mention the rest of the gamment you know all to well. She will be 5 next month. I will be 38 in two months and we both share one thing with Conner. Cf! I have been very lucky to be 38, with two kids, and living with cf, my daughter I pray will be just as lucky. But at times like these the tears come way to fast....sometimes the strong mommy face is hard to find. I will keep you in my prayers
ReplyDeleteSarah, you need to be honest and let the rage out. Keeping the rage in is not good. I do that too much. I know you will succeed in your mission!! You are so strong. I look up to you so much. You have the drive. I'm so honored to have met you and your family in Dallas. Every day I think of Conner and it's just not fair. Hang in there girl!! I am here for you always.
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