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Rickengelage
08-13-2015, 03:49 PM
Hey

Over one year i have lost 10 kilos (22 lbs)

And about 30-40% of. Lung function.

Earlier this year i was diagnosed with cfrd and my cf doctors expected an incline in both lungfunction and weight gain because now im gonna be treated with insulin.

They basically thought the weight loss and lungfunction loss was caused by the cfrd.

That was back in may. When i started the insulin

Its now august, and i havent gained any weight or lungfunction.
In fact i lost a lil bit more weight and about 2-4% lungfunction.

So its definitly not getting better as expected.

Idk how, or why

Have any of you expierence with cfrd?
And gaining weight?
Did it take long to gain it back?

Or could something else maybe explain my weight loss and lungfunction loss?

Any ideas/expiences?

I hope to hear from u

Thanks

Oboe
08-13-2015, 04:07 PM
Gaining weight is hard. I've been under 130 pounds for about 5-6 years and I'm just now starting to climb back up. CFRD sucks too. For me, it felt like all my calories come from carbs/sugar so there was plenty of calories but it wasn't sustainable because my blood sugar was just crazy out of control. What helped me is replacing sugars with fats and proteins. More milk, more peanuts and peanut butter, if you can get dietary supplements those are good for calories. Switch to whole grains where you can. Beans are also a good, fatty replacement for carbs in meals. Still carbby though, so you know watch your sugars. As always talk with your CF clinic/doc, I'm sure they'll give you lots of advice.

Another big one is exercise. Even if you have to use oxygen while you do it. Building muscle helps and it helps control your sugars and gives you energy.

imported_Momto2
08-13-2015, 07:54 PM
Rick, I'm so sorry. Something similar happened to me. The CFRD wasnt caught quickly for various reasons, and in a little less than 2 years my FEV1 went from low 60's to high 30's. Massive inflammation from CFRD was the cause. I did not experience weight loss, have not had a problem keeping weight on for the past 2.5 decades. But there is a big connection between CFRD development and lung function decline. UGH. I'm on 3x/day short acting insulin and 1x/day long-acting. Its under control and my A1C is 5.3, but it was only around 6.4 when I was diagnosed with CFRD, despite the fact that my sugars were pretty high. Apparently people with CF have deceptive LOW A1c readings (no, I dont know why) so it is NOT a good diagnostic tool for CFRD (the CFF mentions this). This is why my GP didnt catch it. My pulmonologist didnt catch it because my appts were always at 12:30, and I always ate after an appt, so the glucose readings he was going off of were 5-6 hours post-eating, not 1 hour post, as he assumed. So they were only around 120 or so, not the 300+ that they usually were for several hours after a meal. Anyhow, it was a mess and there is permanent damage, at least in my case, I hope not in yours. Even with treatment, I have not gotten any lung function back, only lost a little bit more each visit :mad:

kenna2
08-13-2015, 08:23 PM
For me it's been a difficult road with my weight. I was diagnosed with CFRD in 2000 and it's been a balancing act between my sugars and weight for a long time. I finally got an insulin pump last year which has made my life a whole lot easier and my weight is starting to remain pretty stable. It took a lot of adjustments over the years.