Search results

This is my experience with Orkambi 7/30/15 FEV1 in clinic 37% 7/31/15 Started Orkambi 8/2/15 Symtoms started 8/15/15 Hospitalized, FEV1 in hospital 23%, taken off Orkambi 8/31/15, Discharged from hospital, FEV1 33%, restarted Orkambi 9/3/15 Symptoms started 9/17/15 Follow up hospital visit...

I started Orkambi 5 days ago. My first dose was on Friday night. I woke up Saturday morning feeling pretty tired but attributed it to having a busy week at work. Sunday I woke up feeling like death. Very short of breath, wheezing, exhaustion, and leg pain were my main symptoms. I didn't leave...

I asked my CF doc this question and the only worry she had was getting dehydrated. She told me to drink plenty of water the next day if I had more than a few. But I'm like y'all, I've never been a big drinker. I probably drink once every couple of months and I can't remember the last time I had...

I'm sorry I haven't replied before now. Time seems to sneak up on me sometimes. I want to say thank you for all of your kind words. I also want to give yall an update. I've decided to move on! I have so much pure love to give that I don't think God wants me wasting it on someone who doesn't...

My doc said it wouldn't be possible to get pregnant after transplant. I hope he is wrong.

I take Marinol 7.5mg three times a day

I'm 27 years old and my boyfriend of 4 years broke up with me in the middle of a transplant appointment. He is a nurse and has always told me that he would never leave me because of my CF. I can't even put into words how hurt and lost I am. He did a lot of things for me like flushing my port and...

Hi Lukas. My name is Kat. I'm 25 with CF. I'm looking to make friends with CF too. I've never known anyone with CF either. I feel like I have been sheltered from others with CF. I want to compare some of my experiences with others. If you want to add me to Facebook my name is Katherine McLoney...

Hi Lukas. My name is Kat. I'm 25 with CF. I'm looking to make friends with CF too. I've never known anyone with CF either. I feel like I have been sheltered from others with CF. I want to compare some of my experiences with others. If you want to add me to Facebook my name is Katherine McLoney...

My name is Katherine, Kat for short I am 24 years old I am definitely a girl but a tomboy I'm from Kentucky I'm 5'7 and 115lbs (apparently I am tall) My pft's suck (30s to 40s) I don't follow my treatment plan at all (trying to change that) I'm obsessed with hot chocolate and Mountain Dew...

I would like to think they had experience. They were referred to me by my cf clinic. But I haven't had a great experience with this surgeon so if I get another port I definitely won't be going back to him. I wasn't given really clear discharge instructions and there was no follow up appointment...

I would like to think they had experience. They were referred to me by my cf clinic. But I haven't had a great experience with this surgeon so if I get another port I definitely won't be going back to him. I wasn't given really clear discharge instructions and there was no follow up appointment...

I would like to think they had experience. They were referred to me by my cf clinic. But I haven't had a great experience with this surgeon so if I get another port I definitely won't be going back to him. I wasn't given really clear discharge instructions and there was no follow up appointment...

I have really small veins and I always get blood clots in my picc lines. But my doctor didn't seem to concerned with the clots. I was the one who suggested the port.

I have really small veins and I always get blood clots in my picc lines. But my doctor didn't seem to concerned with the clots. I was the one who suggested the port.

I have really small veins and I always get blood clots in my picc lines. But my doctor didn't seem to concerned with the clots. I was the one who suggested the port.

In October I had a port placed. About a week after the surgery it started hurting around the bottom of it. It was the worst pain Ive ever felt in my life. It felt like someone was burning me with fire. Two weeks after the port was placed I had a pit form where the sutures were. It started to...

In October I had a port placed. About a week after the surgery it started hurting around the bottom of it. It was the worst pain Ive ever felt in my life. It felt like someone was burning me with fire. Two weeks after the port was placed I had a pit form where the sutures were. It started to...

In October I had a port placed. About a week after the surgery it started hurting around the bottom of it. It was the worst pain Ive ever felt in my life. It felt like someone was burning me with fire. Two weeks after the port was placed I had a pit form where the sutures were. It started to...

I am having the same problem swallowing and food getting stuck. It normally happens when I eat meat. I told my doctor about it and they had no idea what was going on. My doc put me on Omeprazole twice a day and it hasn't affected it any. I was scheduled for a scope but chickened out. <img...