Today I went in for an unscheduled clinic visit because I’ve been having seriously labored breathing.
There have been precious few times that I’ve actually been scared for my mortality because of my breathing (thinking about mortality and having physical feelings are so different). This week was one of them, as I’d climb into bed with my CPAP on, lay down on my side, and actually struggle for breath for a couple of very long minutes. I imagined that I looked like a fish out of water, gasping. My lungs hurt, or at least my ribs did, but it felt like my lungs.
I’ve also had episodes of a stabbing pain in my lower right ribcage, similar to a running stitch in the side about every other time I do my Vest. I have just had a general feeling that my lungs aren’t supple enough to expand or contract any more and that I’m wearing a very tight belt around my chest most of the time. Oh, yeah, and the whole blacking out episode – it’s all making me feel pretty nervous about where my health is at this point.
So, after doing PFTs, Bill said that my volume was up 10mL from last time, so even though I’d gained quite a bit of weight since my last visit, my FEV1 was up 1% to 35% now. What the heck?! I’m not saying that I’m not happy to have better PFTs, but I feel like they are going to think I’m crying wolf soon. I feel terrible, yet I’m still healthy.
In fact, my PFTs have been within a 5% band for about 2 years now. I’m not going up, but Bill is still pretty pleased that I’m not going down because he said almost every CFer’s trend line slopes down on the 2 year view. Mine is flat with a little bump up and a little bump down. Dr. Haddad didn’t feel comfortable putting me on IVs because I’m not experiencing an exacerbation and I “have bugs from hell” that they don’t want to hit with any anti-biotics that they need to use when I am in trouble, lest they not work and we are put in an emergency transplant situation because the infection won’t go away any other way than removing the lungs from my body.
I don’t want to be in that situation, so I’ll do my best to keep what I’ve got.
So, what am I going to do now?
Last time, they said I was too stressed and needed to take a vacation. I took a vacation. Now they concluded that I’m out of shape.
We got a Wii for a reason, so now we’re going to use it, because I’m sure not going out in this heat and humidity to walk or run. I haven’t been doing much of anything besides going up and down our stairs about 5x per day. I’m pretty much confined to our living area most days because I get up, do my treatments, eat breakfast, work, eat lunch, work, eat dinner, do my treatments, watch TV with Beautiful, work/play, and go to bed. We walked a lot in SoCal and I was getting winded just walking 1/2 mile at a time, so that’s pretty bad.
Share this post:
|
|
|
|
There have been precious few times that I’ve actually been scared for my mortality because of my breathing (thinking about mortality and having physical feelings are so different). This week was one of them, as I’d climb into bed with my CPAP on, lay down on my side, and actually struggle for breath for a couple of very long minutes. I imagined that I looked like a fish out of water, gasping. My lungs hurt, or at least my ribs did, but it felt like my lungs.
I’ve also had episodes of a stabbing pain in my lower right ribcage, similar to a running stitch in the side about every other time I do my Vest. I have just had a general feeling that my lungs aren’t supple enough to expand or contract any more and that I’m wearing a very tight belt around my chest most of the time. Oh, yeah, and the whole blacking out episode – it’s all making me feel pretty nervous about where my health is at this point.
So, after doing PFTs, Bill said that my volume was up 10mL from last time, so even though I’d gained quite a bit of weight since my last visit, my FEV1 was up 1% to 35% now. What the heck?! I’m not saying that I’m not happy to have better PFTs, but I feel like they are going to think I’m crying wolf soon. I feel terrible, yet I’m still healthy.
In fact, my PFTs have been within a 5% band for about 2 years now. I’m not going up, but Bill is still pretty pleased that I’m not going down because he said almost every CFer’s trend line slopes down on the 2 year view. Mine is flat with a little bump up and a little bump down. Dr. Haddad didn’t feel comfortable putting me on IVs because I’m not experiencing an exacerbation and I “have bugs from hell” that they don’t want to hit with any anti-biotics that they need to use when I am in trouble, lest they not work and we are put in an emergency transplant situation because the infection won’t go away any other way than removing the lungs from my body.
I don’t want to be in that situation, so I’ll do my best to keep what I’ve got.
So, what am I going to do now?
Last time, they said I was too stressed and needed to take a vacation. I took a vacation. Now they concluded that I’m out of shape.
We got a Wii for a reason, so now we’re going to use it, because I’m sure not going out in this heat and humidity to walk or run. I haven’t been doing much of anything besides going up and down our stairs about 5x per day. I’m pretty much confined to our living area most days because I get up, do my treatments, eat breakfast, work, eat lunch, work, eat dinner, do my treatments, watch TV with Beautiful, work/play, and go to bed. We walked a lot in SoCal and I was getting winded just walking 1/2 mile at a time, so that’s pretty bad.