Sunday, June 28, 2015

Not The Outcome That I Expected.

On Wednesday, Brenda called back about 12pm and said she had spoken to Dr.Higton and she would see me at 3 o'clock. So I got dressed and ready and packed a bag with some overnight things and clothes for a few days as well as my meds and physio machines as I was expecting to be admitted with how rubbish I had been feeling for the past fortnight. Abbi then drove me to the hospital so if I did have to stay she would stay for a few hours so I wasn't bored.

When we got there, I did the usual routine. I got on the scales and my weight showed the most I have ever weighed and my BMI was finally at 20.0. I guess five weeks of pigging out on food because you're on steroids shows on the scales. After doing my weight, Brenda set up the computer ready to test my lung function. I then went ahead and did the first blow and could not believe the results. 2.23 litres. I don't remember the last time it was that high. We were laughing at the fact it was so high when I was feeling so rubbish. I did two more tests and again they showed higher results. I always read the percentage in the end as I never really understand litres but my FEV1 results were 70%. I checked and it hasn't been that high since September last year and before then it was months ago. Typical. I feel really tight chested and breathless and I'm up all night coughing. Yet from my results you would think I was making it all up!

Dr.Higton came and saw me after and laughed with me about the lung function as we were both so shocked. I explained to her what had been happening over the last month as I saw Dr.Orchard at my last visit at the beginning of June. I told her about the reaction to the Symbicort, the tight chest feeling after doing the Aztreonam, the waking up in the night etc. She said she thinks that actually I am allergic to the Aztreonam judging by how I had told her it made me feel but because my body has had such a kick of different antibiotics, steroids, nebulisers and inhalers my lung function has managed to improve. So as an outcome, she told me to completely stop the Aztreonam and go back to my Promixin in the Ineb. She gave me another two week course of Septrin antibiotics as they had made a difference to my lung function and made me feel better prior to my appointment back at the beginning of June. And she said to carry on easing slowly off the steroids that Dr.Orchard had prescribed a few weeks ago.

So off home again I went. Lets just say it wasn't the outcome I expected! Since stopping the Aztreonam, my chest has been really loose and I have been coughing up a lot more sputum so have had to add in extra physio each day. I explained to Dr.Higton at the appointment on Wednesday that my chest was feeling loose and she said it was probably just because I hadn't had a nebuliser that morning and it should feel fine after the Promixin that evening. But it seems to have been loose for a few days now so I will have to bring that up with her. Wednesday and Thursday night I finally had 2 good night sleeps and didn't wake up coughing! So Friday as I was feeling a little better I went down to Devon to Jane's farm where Grandma and Grandad were staying in their caravan, as Dad was participating in the fishing competition along with Uncle Mark. But Friday night, my chest was at it again and I was up most of the night coughing so I don't know what went on. So Saturday, when they were taking part in the competition I had a nap in the caravan and me and Dad ended up coming home last night instead of today.

My chest has been a bit tight again this afternoon so I did some physio and managed to cough up lots so the Septrin must be loosening it all up.

I have hospital on Tuesday as it's my annual review follow up from May so I will get all the results back from that. Dr.Higton is on another ward that day but she said Dr.Orchard will decide what to do with the steroids and when to see me again after the antibiotics providing my lung function is still high. I hope he stops these steroids those as my face is so chubby where I have been eating so much where they make me constantly hungry haha!

Wednesday, June 24, 2015

I've finally posted an update after 4 months!!

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.