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Thanks for the information. My doctor never mentioned anything to me about a sliding scale. I go see her next week so hopefully I can get answers to my many questions. :) I think the CFRD may be getting worse as it seems that the more carbs I cut, the higher my blood sugar is. For the past...

I have another question if anyone knows the answer.....I went ahead and used the insulin for breakfast this morning as the doctor had recommended (I am not exercising today). I wanted to see how I would do using it at breakfast. I had oatmeal with milk, butter, and almonds. It was 40 total...

Your post is very helpful. My trainer actually recommended MCT oil to help me get extra calories. Do you use it mixed in your meals? Is there a reason you use it in your coffee? Also, can you tell me where I can find it? I have cut out all added sugars. The only sugars I am getting are...

Thank you both for your responses. I guess my numbers aren't bad...I just know anything over 140 is not normal so I was using that as my guide. I just worry about doing damage to organs, etc. I thought anything over 140 did that. I am still fairly new to all of this so I guess it will take...

Hi all....I was diagnosed with CFRD last September. When I initially saw my endocronologist for the 1st time, my a1c was 5.8. But I didn't see her until close to 2 months after diagnosis. I had already changed my diet somewhat by that time. And I do realize that a1c in cf is artificially...

Scanboyd....it sounds like you have had an exercise program going for quite sometime! That is awesome! I do need to get a program going that I like and I wish I could find a partner to exercise with but I don't know anyone. I like to exercise in the morning so I am free the rest of the day...

Yes I was walking at that incline for the whole 50 minutes. Yesterday I set it back to 6.5% which seemed a tad easier. I don't recall that I have ever had the incline set to 1-2 but I will have to try it and see what I can do with a lesser incline. I honestly don't mind the walking, it is...

I am at Loyola in Chicago. It's not so much that it's hard to do because of boredom. I do have a tv that I watch to try to take my mind off of it. I just feel like I am breathing so hard. I don't cough at all or very little and with o2 my sats stay around 95-96%. I kind of thought after so...

This may be a stupid question but I'm curious...My transplant team wants me exercising which I am doing but I absolutely hate it! I walk on the treadmill 5 days a week and I do it first thing in the morning to get it out of the way but I just can't seem to get to a point where I don't feel like...

mom2two....I didn't do well with the Orkambi either. I was on it a little over a year. My lung function declined on it a bit but I had more shortness of breath the entire time I was on it. It was really bad the first 8-10 weeks and I thought it got better (which I am sure it did somewhat) but...

I'm sorry you're having problems. In my younger years (I am 49) always weighed about 125 but after having my son 17 years ago, my weight slowly declined until my averages was 115 or so. Up until 2 years ago, I never even used enzymes. I use to always struggle to keep my weight down but the...

LittleLab4CF....Thank you for all the information! To answer your question.....yes I did use to garden. My husband still does, but I don't. We started gardening about 20 years ago. I use to can. And it was after I started gardening that I started culturing the burkholderia gladioli. I was...

Scanboyd.....thank you for your response. Yes your situation sounds very similar to mine. However, my oxygen (to my knowledge) doesn't drop that low when going up stairs. I can walk on the treadmill without my oxygen and usually about 15 minutes in, I am down to about 91%. I have only done...

Thanks reading my long post and for your reply. I actually have asked my doctors regarding the oxygen use and they are a bit perplexed themselves that I don't require oxygen at this level. They don't really have an answer as to why I don't. That's why I am curious how many CF'rs have and FEV1...

Hi everyone My lung function has been hovering between 20-24% for the last couple years. I started the process of testing for a lung transplant in August of 2015 at which time I also started the Orkambi. In December of 2015, they determined that I was still too well for transplant but wanted...

Does anyone know if there FVC changed at all while using Orkambi? I have been on Orkambi for about 6 1/2 weeks now. Two days before I stared, my fev1 was at 24% and my FVC was at 34% but even than was down just a bit from my April visit which was FEV1-27% and FVC-40%. But at my last visit, my...

Brian, if you don't mind me asking how old were you when you were diagnosed? I was diagnosed when I was 7. I too grew up being told that I would be lucky to live into my teen years. I am now going on 48 all praise to God. My FEV1 has remained fairly stable over the last 15 years. It has...

I am so sorry to hear that so many are having these bad side effects. I just began the Orkambi on August 20th so I am not far into it but I have only had the side effect of being short of breath. I don't feel it is anything I can't handle though as long as it improves within a couple weeks...

Thank you for the information. However, since I posted this, I am on a regimen that has worked in keeping it under control. Oddly enough, it is by suppressing my monthly cycles. I had figured out that I would flare for 2 weeks out of the month from the time I ovulated until my cycle started...

Thank you for the information. However, since I posted this, I am on a regimen that has worked in keeping it under control. Oddly enough, it is by suppressing my monthly cycles. I had figured out that I would flare for 2 weeks out of the month from the time I ovulated until my cycle started...