Comments | cystic_fibrosis: Hi

one_doughman in cystic_fibrosis

Hi

May 04, 2012 16:53

Hi, my name is Heather and I have cystic fibrosis. After watching the documentary 65 Red Roses last night I decided to make my own LiveJournal page. I had a transplant almost 13 years ago when I was 12 and it brought back so many memories. My rejection started about 10 years ago but I have been blessed to be stable for all those years. I hope ( Read more... )

Comments 10

nicholeipickle May 5 2012, 00:38:08 UTC

Welcome to LJ land! This can be a great place to meet others and commiserate or joke around in ways that only CFers know how :)

My name is Nichole. I'm 28, newly pregnant (naturally!), with pretty good lung functions. But a slew of all of the other adult CF things (CFRD, liver wonkiness, DIOS...).

Anyway, great to "meet" you.

one_doughman May 5 2012, 01:22:04 UTC

Thank you for the welcome. I am 25 years old and have decent lung functions for someone who is in chronic rejection (around 30%). I am still affected by all other CF related problems (CFRD-Was borderline until transplant and steroids, sinus infections, and digestive issues).

Thank you again and it's great to meet you!

nicholeipickle May 5 2012, 01:30:15 UTC

I added you :) Hope that's alright.

one_doughman May 5 2012, 01:45:13 UTC

Thats fine with me

squeegee25 May 5 2012, 01:15:22 UTC

Hey Heather, welcome to LJ! This is a great place to get your thoughts out and meet new people. Look forward to reading you :)

one_doughman May 5 2012, 01:46:01 UTC

Thank you, will watch out for your posts as well.

oh_monkies May 7 2012, 02:43:51 UTC

Hi Heather! Again, welcome to LJ.

My name is Laura and I'm 28. I wasn't diagnosed with CF until I was 25, so this community was really helpful to me since it was such a big thing to deal with alone.

I'm glad 65_Redroses brought you to LJ. It's a pretty sweet place. ^_^

one_doughman May 7 2012, 12:41:16 UTC

Hi Laura!

After seeing 65_RedRoses I knew this was the place to go to get support. I had never even thought about it before. So it is nice to be a part of LJ.

You were not diagnosed until you were 25, do you have a very mild case? I am 25 now and was diagnosed right before I turned 3. I don't think I ever talked to someone who was diagnosed so late in life. It would be nice to talk to you some more.

ealitt May 9 2012, 03:10:20 UTC

How do you all care for your CFRD? Insulin shots? Pump? Do any of you use the continuous glucose monitoring system (Dexcom)?

I used to do shots, but I got up to 10 a day. So about 3 years ago I started using a pump. I had some bad lows that required ambulatory services, etc so I now use the CGMS also. My CF seems easy compared to my diabetes. Anyone with me on that???!!?

one_doughman May 9 2012, 15:56:33 UTC

I would love to help you but my diabetes isn't from CF. When I had my transplant I was borderline CFRD but not quite there. After the transplant the steroids I take caused me to get diabeties. They call it steroid induced diabetes. I can give you some advice though. My diabetes was uncontrollable for a very long time because steroid induced diabetes can be very uncontrollable. I would have multiple low sugars that made me terrified of living alone because I would come out of it with ambulance people around me a few times a month. When they got my insulin dose right I started eating healthier. Tell your doctor EVERYTHING you eat. Eat the same amount of carbs at the same time every day. They tell people with CF they need to gain weight so it is kind of hard to eat healthy and gain weight at the same time. Look it up online and talk to the doctor about how you can eat healthy and gain weight at the same time. After my transplant I started gaining weight like crazy and I was so used to eating whatever I wanted and not gaining ( ... )