Lung Function Drop and Weight Loss

After being off of work most of last week as I was feeling rubbish, mum rung Judith last Friday and got me an appointment to be seen on Monday.

So on Monday, me and Mum went to the hospital for my appointment at 10:30am. Unfortunately, it wasn't the best news.. my lung function has dropped a massive 20%, not to the lowest its been, but it's never just dropped that much in one go. Also, my weight has dropped half a stone since I was last seen in September. This confused me and mum as I have been eating the same, except the last week due to being poorly, so don't understand how it could have dropped that much.

Emy came in first and gave my port it's regular flush to stop the line blocking. And then I told her that I hadn't been feeling my best and also explained I had been having random shakes at random times of the day over the past few weeks. I told her that I had been checking my blood sugars regularly and they had all been pretty normal so I was a little confused. Around this age, CF patients usually are diagnosed with CFRD (Cystic Fibrosis Related Diabetes) so I think maybe mine could be on the way. Emy said that could explain the big weight drop and the shaking although if the blood sugars showed normal results she didn't really have an answer. She went to see the diabetic doctor who told me to just carry on taking my blood sugars for the next two weeks and see if there is any change.

Jo came in and saw me and suggested I up the physiotherapy treatment to twice a day to get the lung function back up and to stop me waking up every night having coughing fits. She said to carry the DNASE on as normal, so do that about 45 minutes before physio. Then for the second lot of physio, inhale half of the hypertonic saline through my pari-boy machine and then put the other half into the chamber that I use for my Bipap (physio) machine rather than just putting the whole dose into the Bipap machine as it will get to my chest quicker and hopefully bring up more sputum.

Charissa, the dietician, came in after and was also concerned as to why my weight had dropped so much. She told me to keep a log of my blood sugars and what I am eating and try to eat more than usual over the next two weeks. She was upset as she knows how hard I have worked with my eating to get my weight up to where it was.

Dr Orchard came in last and also had no answer for the shaking if the blood sugars are normal. He said "you like to be a challenge don't you?" haha. He suggested going on some iv's to try and get the lung function back up and to shift this horrible cold I have. But I didn't want to jump straight into iv's as I had them less them two months ago. So I asked for some oral antibitocs to try first. Mum asked him what he thought about Prednisolone (Steroids) as I suggested them as they usually make me eat a lot as well as shift infection. So he prescribed me with those for one week and also prescribed me with an antibiotic called Chloramphenicol which I am on for two weeks. Hopefully, with these steroids, antibiotics and lots of physio my lung function will improve. Failing that, I will have to go back on iv's. I have an appointment to go back to the hospital on 28th November, so I am going to try and work hard with my physio until then. Fingers crossed!

Still feeling rubbish

I went back to work yesterday thinking that I would be feeling okay. But I felt really poorly again. I have got a cold and it has gone straight to my chest and made my whole body feel rubbish. So I'm off again today to get some rest.  

It's hard to describe how you're feeling when someone asks why you're not feeling great. Unless you have Cystic Fibrosis I guess you don't understand what I mean. But one day you're feeling absolutely fine and then one morning/evening or anytime in the day you'll just start to feel rubbish again. I hope this cold shifts itself pretty soon so I can feel fine again and get back to work. 

November update.

Its been nearly 2 months since I last updated!! Probably because I've not been to the hospital since my last update. I haven't been feeling too great the last week. I have been up every night with chest pain and terrible coughing fits which has left me feeling over tired most days despite going to bed earlier than usual. Sunday and yesterday I wasn't feeling 100% and went to bed last night with a horrible headache. I woke up this morning coughing up loads of rubbish again, my head still killing and had a fever. So I haven't been to work today and have spent the day in bed. Hopefully going to bed early tonight will help and I will be able to go to work tomorrow.

I have also had really random shakes at random times over the last month. I have been checking my blood sugars and they have all been normal so it's a bit confusing. Every time mum says she will ring the hospital tomorrow, the shakes stop! This week so far it hasn't happened, touch wood, so we will have to see.

I have a hospital appointment on 25th November but if I'm still not feeling great mum will ring and change it.