It's been months since I updated here. After Grandma recently came over and said the exact date I last did a post I thought maybe I should finally get round to updating! Well my health hasn't been great this year. Since my last update in February, I had IV's again in April and have been put on various different antibiotics and steroids and just missed them about 3 more times where my lung function has managed to creep up a little bit. But now I'm at a low point again and think I will probably be admitted to hospital today.
Back on Monday 8th June, I went up for a hospital appointment following a recent dose of oral antibiotics (I can't remember the name of them now) I had not had before and steroids. I had just been to Disneyland as well and with the help of lots of walking and different antibiotics, my lung function improved and I was feeling a bit better! At my appointment before this, Dr. Higton suggested to trial me on a new nebuliser when I got back from Disney so Dr. Orchard increased the length of time I would be on the steroids but to slowly drop the dose as the weeks pass rather than just put a stop to them all together incase I didn't get on with the new nebuliser. Then Jo came and saw me and got me started on that. The new nebuliser is called Aztreonam and is done in a whole different new nebuliser called an Eflow. It's pretty simple to use and the drug has to be done 3 times a day. Dr Orchard also started me on a new inhaler called Symbicort. So off I went home feeling a bit better and ready to start my new neb and inhaler. Mum went away to Turkey the following day so it was lucky I was feeling better otherwise I would have had to stay in hospital for two weeks where mum isn't at home to help with the home IV's.
By the Thursday I wasn't right again. A horrible rash had appeared on my hands and feet, it had made them go very dry and itchy. I knew this was an allergic reaction as I am allergic to another drug and get this same reaction if I take it. So I called the hospital on Friday and spoke to Brenda. She spoke to the doctors and they said to stop the Aztreonam over the weekend and see how the rash is and call them back on Monday. After speaking to Brenda, I realised it could also be the Symbicort causing the reaction so I stopped that too. By Monday the rash had gone so I called the hospital and spoke to Emy. I told her I wasn't sure if I it was the Aztreonam or the Symbicort causing the reaction and from reading the side effects to them both I think it was probably the Symbicort so I was happy to try the Aztreonam again. So she said that was fine and to call again in a few days to give her an update. Well by Wednesday I was now feeling very tight chested, had a constant tickly throat so kept coughing and was having sleepless nights. I went to work on Wednesday feeling very unwell so once again had to call the hospital. I spoke to Brenda on Friday and asked her if she could speak to the doctors and get them to prescribe me a different inhaler because before I had stopped the Symbicort my chest was feeling fine when using the Aztreonam. So they prescribed me with Seretide inhaler which Abbi went and collected for me and I called into work sick on Friday as I had been up all of Thursday night coughing.
By Saturday the Seretide inhaler had given me a sore throat and I was now full of cold with the tickly throat still there. I had another sleepless night on Friday so was not feeling good again. Saturday night and Sunday night were the same so I spent all of Monday in bed to try and make sure I would be well for work yesterday. Monday night was once again the same and I was awake at 3am for about two hours just cough cough cough every two seconds. But I went to work yesterday to see how I'd get on. By my lunch break I felt really breathless and tight chested so went and called the hospital and got sent home from work. Hospital didn't answer so I left a message and then went to sleep in the meantime. I woke up at 5:30pm and tried the hospital again and got through to Judith. I told her what had been happening over the past few weeks and she said to stop the Aztreonam and she would leave a note for Brenda to speak to the doctors today and hopefully get me seen. She asked if I think I needed IV's but I said I wasn't sure because I have never felt this ill for this long but then again I don't know what my lung function is doing as it all could just be in my throat.
I was up again in the night at 1am for over an hour and then again at 4:30am so I haven't gone into work today and I am just waiting to hear from Brenda so I know when to go to the hospital. Hopefully they finally sort me out and I start to feel better soon!
Mum and dad are back from Turkey tomorrow so hopefully if I'm admitted to hospital I won't be there for too long as mum can help out with home IVs.
I'm going to try to go back to sleep now before Brenda rings.