What up followers! Well I had my clinic appt. today and sadly the news I got was not what I was expecting. My FEV1 was 59%. 3 months ago I had my very confusing bout with my PFT's when I was feeling really crummy, they were at 62%. After 2 weeks of IV antibiotics, usually I would see a jump of 7-8%. At that time, I saw a drop of 2%. Now this time after 3 months of working out, not missing any treatments (I never do anyway) and lots of running, they were 59%. Needless to say I was very confused by this. I spent the drive home and some of the evening mad and upset at these results, as I'm sure most of you reading this with CF can understand. My frustration got the best of me at the time. I wasn't so much upset at the number or the fact that I will obviously have to add more exercise and will be adding hypertonic saline to my mix of medications. That's going to be my life with CF, adding meds and adding to my treatments as I get older and the disease progresses. I've accepted that fact. At the moment all I was thinking was "Where am I going to add time in my day to get this done?"
Some CFers out there are lucky enough to work from home. I'm hoping someday God will open a door like that in our lives, but as of right now, I work 40 hours a week. It seems as though there is always something going on in our lives. Almost every evening there's something competing with my treatment and exercise time. That's life though, there will always be something going on. My dad always had this saying growing up that still rings in my ears, "Son, you have time where you make time." As much as I hate to admit it, this is true.
I also learned today that I don't really know how to respond to the question "How do you feel?" I know that may sound funny, but they always ask when my numbers are down, "Well, how do you feel?" I always say fine, because for the most part I always do feel fine. I've come to realize I think that my definition of how I feel and the CF team's are different. When I think of how I feel, I am thinking in terms of at the moment. Do I have a stuffy, runny nose, sinus congestion, chest cold, coughing all night. That is my definition, however I believe their definition when asking how I feel is how has your mucous been? Thick, more of it, more color to it? Do you feel run down, tired a lot? Have any other CFers run into this? I was talking to my mom on my way home from clinic today and she was asking me these questions. I told my team I have had some increase in sputum production and it seems to be quite thicker and more green as opposed to the usual pale yellow color. But when I said I feel "fine" they said there's nothing to worry about then and we shouldn't do anything. Probably just had an off day or something.
I guess I need to change my definition of how I feel in my mind so I can relay what's going on with my health more clearly. I also think it comes from this deeper desire to not want to seem whiny or weak. I don't like to admit defeat or admit that I don't feel good even when I don't. I'd rather hide it and try to get better on my own by doing more treatments and intensifying the things I do to stay healthy. This obviously is a downfall of mine. Anybody else relate? I'm learning to get over this and call the clinic when I feel crummy instead of waiting 2 weeks til I'm really sick and then call. I guess that's part of being a man and wanting to feel tough and manly. :)
Lastly, I did get a bit of good news today! They discovered what my other gene mutation was. Up until this point, my chart always had one listed as Delta F508 (the most common CF gene), and the other unknown. I had some genetic testing done, and it came back that I have 2 Delta F508 genes. The team was unsure of how the other hospitals could have missed this, but the last time I had been tested was in 1989. It's good to finally know what my gene mutations are. Hopefully within a year or so they expect to see some drugs coming down the pipeline for DF508 CFers. Until then, it's time to GET MOVING! Keep running, keep knocking out treatments every day, and as Tony Horton says on P90X, keep pushing play! For all you CFers out there, keep at it!
Showing posts with label mutations. Show all posts
Showing posts with label mutations. Show all posts
Monday, May 21, 2012
Thursday, March 8, 2012
What is Cystic Fibrosis?
I thought it would be fitting to define Cystic Fibrosis. Many have never heard of it before and have no idea what it is, except a disease that makes people get sick and cough. There's so many definitions out there, this is the one that I thought described it best.
Cystic Fibrosis – A hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, reproductive tracts and bronchi often resulting in respiratory infection.
CF, as it is commonly referred to for short, is a genetic disease. You can't "catch" CF from someone else. It requires that both parents be carriers of the disease, and then there's a 25% chance that each child born will have "active" Cystic Fibrosis. There's 50% chance that each child born will be a carrier, and therefore a 25% chance that the child will not get either of the "defective" genes. Carriers of the disease have zero symptoms and are not affected at all by the disease. Click here to go to the Cystic Fibrosis Foundation (CFF) website to learn more about CF.
Alright, so I just gave you the textbook definition of Cystic Fibrosis. That definition usually means nothing to us CFer's (people with Cystic Fibrosis). What CF means to us is how it affects us everyday. It's different for every person. There currently have been over 1500 mutations discovered for CF. Each mutation will have variations of severity for the affected organs. Even those with the same CF genes will present differently regarding symptoms. Each person has 2 CF genes, one from mom and one from dad. Even those CFer's with the same 2 genes won't have the same symptoms. One may have a more severe "case" of CF. So basically CF affects each of us differently and will progress differently.
Which leads me to the next point, that CF is a progressively worsening disease. Cystic Fibrosis is a terminal illness. This means there is no cure and the disease eventually progresses until the affected person loses their life. It's a fact that many try to ignore. They look at me or other CFer's and think "Oh they look healthy they'll be fine." Unfortunately this isn't true, CF is terminal and has been shown to take it's greatest toll on the body throughout the 20's. Therapies to treat CF are coming a long way to help prevent symptoms, and slow the progression of the disease. The greatest of these is a drug that was just released called Kalydeco. It's a HUGE step in the treatment of CF! Very exciting!
That's all I'll get into for now! It seems like a lot to digest if you're just reading about all of this for the first time. My advice is to educate yourself! So many have never heard of the disease, and it still takes the lives of children and people all over the world! I want to help spread the word and raise awareness, so help me do that by educating yourself!
Cystic Fibrosis – A hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, reproductive tracts and bronchi often resulting in respiratory infection.
CF, as it is commonly referred to for short, is a genetic disease. You can't "catch" CF from someone else. It requires that both parents be carriers of the disease, and then there's a 25% chance that each child born will have "active" Cystic Fibrosis. There's 50% chance that each child born will be a carrier, and therefore a 25% chance that the child will not get either of the "defective" genes. Carriers of the disease have zero symptoms and are not affected at all by the disease. Click here to go to the Cystic Fibrosis Foundation (CFF) website to learn more about CF.
Alright, so I just gave you the textbook definition of Cystic Fibrosis. That definition usually means nothing to us CFer's (people with Cystic Fibrosis). What CF means to us is how it affects us everyday. It's different for every person. There currently have been over 1500 mutations discovered for CF. Each mutation will have variations of severity for the affected organs. Even those with the same CF genes will present differently regarding symptoms. Each person has 2 CF genes, one from mom and one from dad. Even those CFer's with the same 2 genes won't have the same symptoms. One may have a more severe "case" of CF. So basically CF affects each of us differently and will progress differently.
Which leads me to the next point, that CF is a progressively worsening disease. Cystic Fibrosis is a terminal illness. This means there is no cure and the disease eventually progresses until the affected person loses their life. It's a fact that many try to ignore. They look at me or other CFer's and think "Oh they look healthy they'll be fine." Unfortunately this isn't true, CF is terminal and has been shown to take it's greatest toll on the body throughout the 20's. Therapies to treat CF are coming a long way to help prevent symptoms, and slow the progression of the disease. The greatest of these is a drug that was just released called Kalydeco. It's a HUGE step in the treatment of CF! Very exciting!
That's all I'll get into for now! It seems like a lot to digest if you're just reading about all of this for the first time. My advice is to educate yourself! So many have never heard of the disease, and it still takes the lives of children and people all over the world! I want to help spread the word and raise awareness, so help me do that by educating yourself!
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