Well for about 2 days I had ran out of HS. Due to the holiday season and businesses closing, and me not realizing how low I was, I had to go without for 2 days. I wasn't able to get much up, even with the vest. What I did get up was mostly clear. Which is understandable, because i'm mostly clear anyways, but it usually takes HS + the vest to make me crystal clear due to the HS making deep stuff move, that normally wouldn't move.
Anyways, after the first dose of my fresh HS I received, plus a hearty round of hackin away on 25mhz, I got a ton of stuff up, and even my nose ran like crazy (a good thing). This was never the case before I was on the vest and regular CPT. After a vest treatment, I feel as close to "normal" as possible. I feel amazing, and most of my sinus issues go bye bye due to the air pulses moving so much air in me, it pushes the deep snot from my sinuses out as well.
The more I think about the vest, and how I feel with and without it, it just amazes me what a wondrous invention it is, and how much it so greatly increases our quality of life. We need more technical/medicine strides to equal such a huge burst in care for us. As much as I love the vest, I do 4.5 hours of treatment time on it EVERY DAY. Which = 31.5 hours of extra work per week. I normally work 40-45 hours per week at my job. Then add in the other vest time, and my work week is 76.5 hours long. For such a wonderful tool against our disease, it basically equates to another full time job just to stay alive and have some quality of life/lungs.
All of this is a tad bit much, which basically means I don't really have time for anything. Fiance wants to go to her dads with me on a road trip? Hold on for 2+ hours honey, I have to do my meds/vest. Nothing is spontaneous. I could relate a ton of examples, but i'm sure you get the point how in the morning and before bed, if you are 100% vigilant to your care, you do 2+ hours of care twice a day. I'm sure others are the same. On top of all that, I do 1-1.5 hours of weight training before work mon, wed, and fri. That is 42 extra hours just to stay alive, have somewhat clear lungs, and have some quality of health. The problem is, I basically have no time for anything else. The weekends are my only time where I enjoy a few hours of something, which is of course interupted by stuff/projects I have to do around the house. I think our typical regimen would break the average person in no time.
Another thing that gets to me, are the new medications promised to come out before long. Denufosol for instance. I hear it is going to be 3 x a day. Well that kind of leaves me out. As it is now I do 4 aresols in the morn, and then at night (both with vest). The time in between is spent working. I'm sure if it's the life saver that it is supposed to be, I could try and find some way of doing it, but in my line of work we are high profile, and someone with a gun and maybe a tac vest sitting in a vehicle puffing on smoke doesn't look too good.
Don't get me wrong, i'm not crying really. I'm happy to be 36 and have the lungs I have compared to others who fought and are now gone...BUT, it can be a tad too much at times. I can see how eventually, all CF's stop working just due to the time aspect. But i'm closing on what appears to be my dream job, so I hope my health stays up.
Anyways, after the first dose of my fresh HS I received, plus a hearty round of hackin away on 25mhz, I got a ton of stuff up, and even my nose ran like crazy (a good thing). This was never the case before I was on the vest and regular CPT. After a vest treatment, I feel as close to "normal" as possible. I feel amazing, and most of my sinus issues go bye bye due to the air pulses moving so much air in me, it pushes the deep snot from my sinuses out as well.
The more I think about the vest, and how I feel with and without it, it just amazes me what a wondrous invention it is, and how much it so greatly increases our quality of life. We need more technical/medicine strides to equal such a huge burst in care for us. As much as I love the vest, I do 4.5 hours of treatment time on it EVERY DAY. Which = 31.5 hours of extra work per week. I normally work 40-45 hours per week at my job. Then add in the other vest time, and my work week is 76.5 hours long. For such a wonderful tool against our disease, it basically equates to another full time job just to stay alive and have some quality of life/lungs.
All of this is a tad bit much, which basically means I don't really have time for anything. Fiance wants to go to her dads with me on a road trip? Hold on for 2+ hours honey, I have to do my meds/vest. Nothing is spontaneous. I could relate a ton of examples, but i'm sure you get the point how in the morning and before bed, if you are 100% vigilant to your care, you do 2+ hours of care twice a day. I'm sure others are the same. On top of all that, I do 1-1.5 hours of weight training before work mon, wed, and fri. That is 42 extra hours just to stay alive, have somewhat clear lungs, and have some quality of health. The problem is, I basically have no time for anything else. The weekends are my only time where I enjoy a few hours of something, which is of course interupted by stuff/projects I have to do around the house. I think our typical regimen would break the average person in no time.
Another thing that gets to me, are the new medications promised to come out before long. Denufosol for instance. I hear it is going to be 3 x a day. Well that kind of leaves me out. As it is now I do 4 aresols in the morn, and then at night (both with vest). The time in between is spent working. I'm sure if it's the life saver that it is supposed to be, I could try and find some way of doing it, but in my line of work we are high profile, and someone with a gun and maybe a tac vest sitting in a vehicle puffing on smoke doesn't look too good.
Don't get me wrong, i'm not crying really. I'm happy to be 36 and have the lungs I have compared to others who fought and are now gone...BUT, it can be a tad too much at times. I can see how eventually, all CF's stop working just due to the time aspect. But i'm closing on what appears to be my dream job, so I hope my health stays up.