Tomorrow I have clinic and I am not looking forward to it. The past week my lungs have really gone downhill. My ability to walk has decreased - the speed on the treadmill has gone from 3.2 to 2.7 and I still feel like I am running. I am requiring DuoNebs at least 3-4 times a day (I usually take them 2-3 depending on what I do and how long I am up). And my appetite is kaput.
My lungs are super tight with everything, even just sitting around. Interestingly enough my O2 and HR have been fairly good! I haven't dipped below 90% all that often considering I am gasping for breath a lot. Of course on my ride home today, as I walked back to my car after stopping at a rest stop, my O2 was 81% lol....oppsie!
Pretty sure I am in need of my IVs. Now I just have to decide if I want to go in this week, or next week. I will decide once I see what my FEV1 is tomorrow morning. If I have declined a lot then I will go in this week, if not then I want to wait till next week since P is on call this weekend.
This 30-something's journey with Cystic Fibrosis, Lynch Syndrome, CFRD and the Lung Transplant process
Monday, April 30, 2012
Tuesday, April 24, 2012
O2 Study
Friday night I had another O2 study done while I slept. They are picking the device up today so it will be a few days before I hear anything back. Plus I have a clinic appointment next Tuesday (May 1) so I am assuming I won't hear anything until then anyway.
It was pretty similar to the last test I had done. I saw 86-89% a lot when I would wake up, and when I was lying down I was at 90-91%. But who knows what the machine registered. The tech said it records the numbers every 30 seconds. So if I hit 86% for 20 seconds in between two 90s it won't get recorded. Kinda sucky. But whatever right.
I am just glad we are doing the study when I am not feeling the best instead of like last time when I had just finished a 3 week course of IVs. This test will be much more accurate. Speaking of IVs. The Cipro didn't do squat for me so it looks like I will be scheduling an admission for May 10th. It is what it is. At least I will feel good for the summer! And even feeling shitty I have been exercising my ass off at the gym 4 days a week. Go me!
It was pretty similar to the last test I had done. I saw 86-89% a lot when I would wake up, and when I was lying down I was at 90-91%. But who knows what the machine registered. The tech said it records the numbers every 30 seconds. So if I hit 86% for 20 seconds in between two 90s it won't get recorded. Kinda sucky. But whatever right.
I am just glad we are doing the study when I am not feeling the best instead of like last time when I had just finished a 3 week course of IVs. This test will be much more accurate. Speaking of IVs. The Cipro didn't do squat for me so it looks like I will be scheduling an admission for May 10th. It is what it is. At least I will feel good for the summer! And even feeling shitty I have been exercising my ass off at the gym 4 days a week. Go me!
Wednesday, April 4, 2012
Game On!
My weight back in January was 58.1 kgs or 127.8 lbs
My weight today, thankfully, was 57.2 kgs or 125.8 lbs
I have lost 2 lbs and that was WITH trying. I have 7.8 lbs to go to get back to my "normal" weight.
So starting next week some friends and I are going to do the Game On! diet plan. It sounds like a lot of fun. Basically diet and exercise become a game to play. There are teams and each day each player wins points for eating healthy, exercising, sleeping enough etc. There are point losers as well like snacking. Once a week the players meet up to tally the scores. The team with the most points at the end of 4 weeks wins. And you can decide a head of time what that prize might be. Check out the book here. I am really looking forward to starting it.
I remember like 10 years ago going to the doctors and wishing I could add coins or rocks to my pockets so my weight would be up, or wearing a lot of layers just to get those few extra ounces so I wouldn't get the "you need to put weight on" lecture. Now, I wear as few layers as possible and try not to eat before I go because it makes me cringe to read the scale. I am NOT fat by any means and I don't want people thinking I think I am fat. As I have stated in other blog posts, I am just uncomfortable with my body and am working on it. I want the body I had in 2006 back.
THIS body:
In other news....I had my clinic appointment today. PFTs down a bunch...as per usual. I was 1.28L (43%) back in January after my 2 weeks of IVs and today I was 1.07L (36%). Quite the drop. So two weeks of oral Cipro to hold me off from getting lower, and maybe even helping me rise. And when I go back May 1st, if there is no increase it is IV time. Which works out well as my class ends May 10th and the next semester doesn't start till the 21st so I can squeeze a hospital stay in there fine. I will have to figure out then another inpatient stay come September so I am good and healthy for our honeymoon in October.
Ironic thing is I feel fine. Nothing to report to her. Good in that sense, but bad that I dropped so much. Just sucks lol.
My weight today, thankfully, was 57.2 kgs or 125.8 lbs
I have lost 2 lbs and that was WITH trying. I have 7.8 lbs to go to get back to my "normal" weight.
So starting next week some friends and I are going to do the Game On! diet plan. It sounds like a lot of fun. Basically diet and exercise become a game to play. There are teams and each day each player wins points for eating healthy, exercising, sleeping enough etc. There are point losers as well like snacking. Once a week the players meet up to tally the scores. The team with the most points at the end of 4 weeks wins. And you can decide a head of time what that prize might be. Check out the book here. I am really looking forward to starting it.
I remember like 10 years ago going to the doctors and wishing I could add coins or rocks to my pockets so my weight would be up, or wearing a lot of layers just to get those few extra ounces so I wouldn't get the "you need to put weight on" lecture. Now, I wear as few layers as possible and try not to eat before I go because it makes me cringe to read the scale. I am NOT fat by any means and I don't want people thinking I think I am fat. As I have stated in other blog posts, I am just uncomfortable with my body and am working on it. I want the body I had in 2006 back.
THIS body:
In other news....I had my clinic appointment today. PFTs down a bunch...as per usual. I was 1.28L (43%) back in January after my 2 weeks of IVs and today I was 1.07L (36%). Quite the drop. So two weeks of oral Cipro to hold me off from getting lower, and maybe even helping me rise. And when I go back May 1st, if there is no increase it is IV time. Which works out well as my class ends May 10th and the next semester doesn't start till the 21st so I can squeeze a hospital stay in there fine. I will have to figure out then another inpatient stay come September so I am good and healthy for our honeymoon in October.
Ironic thing is I feel fine. Nothing to report to her. Good in that sense, but bad that I dropped so much. Just sucks lol.
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