Its been awhile since I have been on here. I had PFTs which I do believe showed my lungs are stable but proves I physically can not take a deep breath in, and I also had CF clinic. So I have been busy and super tired. Now the heat of the summer has hit its peak and needless to say I can not breathe. I've had to momentarly had to pause part of my life. I don't mean that to be sarcastic but the only things I can do is cross stitch, read, games, and the such and that in between laying down to rest. But someone asked an incredibly good question about the heat.Why does it affect me and why don't meds work to help it. Well they do but if it only was that simple.
So I do meds every day, a few times a day, all year around. So yes when we go somewhere all that stuff has to come with me. IVs, neb, stuff for chest pt, medications, and anything else I could possibly need to get thru a day or night somewhere. But the heat mixed with humidity makes the air really thick. You hear people with out lung disease complain about this. Now imagine having lung disease on top of all that. Then I get dehydrated extremely easily. Which that causes my secretions to become almost like cement. And though I stay in a cool area of the house, I do not exercise, and do what ever I can to stay cool the outside elements still effect me. I also have 2 diseases that depletes the salt in my body so Im constantly taking salt in. The simple answer is yes dehydration. Medication does help but only so much.
Outside of being busy and trying to keep up with everything nothing much has really been going on. I am waiting to be approved for genetic testing so we can see if I can extend my life. No no its not a miracle cure but added years is something we all strive for. CF is a terrible harsh disease and though we can not stop the process of destruction essentially we can slow it down. Which what we all want. The funny thing about life is no matter what we do to alter things, life is still going to happen the way it is supposed to. We can't control or predict things. We can simply embrace and accept life for what it is. I personally love life and the amazing things it has brought me. But I'm going to hop off of here and take advantage of the little time I have before the heat takes over.
Love yall
~Poppet
So I do meds every day, a few times a day, all year around. So yes when we go somewhere all that stuff has to come with me. IVs, neb, stuff for chest pt, medications, and anything else I could possibly need to get thru a day or night somewhere. But the heat mixed with humidity makes the air really thick. You hear people with out lung disease complain about this. Now imagine having lung disease on top of all that. Then I get dehydrated extremely easily. Which that causes my secretions to become almost like cement. And though I stay in a cool area of the house, I do not exercise, and do what ever I can to stay cool the outside elements still effect me. I also have 2 diseases that depletes the salt in my body so Im constantly taking salt in. The simple answer is yes dehydration. Medication does help but only so much.
Outside of being busy and trying to keep up with everything nothing much has really been going on. I am waiting to be approved for genetic testing so we can see if I can extend my life. No no its not a miracle cure but added years is something we all strive for. CF is a terrible harsh disease and though we can not stop the process of destruction essentially we can slow it down. Which what we all want. The funny thing about life is no matter what we do to alter things, life is still going to happen the way it is supposed to. We can't control or predict things. We can simply embrace and accept life for what it is. I personally love life and the amazing things it has brought me. But I'm going to hop off of here and take advantage of the little time I have before the heat takes over.
Love yall
~Poppet
