Wednesday, July 01, 2015

Annual Review Follow Up Appointment 2015

I went back to the hospital yesterday afternoon for my annual review follow up. I went to work in the morning and then left at 3 o'clock for my appointment at 3:30 and mum met me there. When I arrived I did my weight and lung function. Unfortunately, my lung function had dropped down again, but not massively. It was 63%. 

Dr. Orchard came and saw me and we spoke about my annual review results. We said this year hasn't been the best for me with my lung function constantly dipping and us battling to keep it up. But he said he wants to be able to find something that will help to improve my lung function and stop me having so many ivs, as I had two courses very close together back at the beginning of this year. He mentioned a drug which can be nebulised, but I can't remember the name, which they have started to use in America and have seen good results so he was going to look further into it and maybe think about trialling me on that. But in the meantime, until he knew more about it, he suggested trialling me on Bronchitol. Bronchitol is a a dry powder inhaler done before physio and is designed to reduce the amount of mucus build up in the lungs. He thinks my lung function is low because there is mucus stuck right down in the bottom of my lungs which he believes can be brought up with the help of Bronchitol and lots of physio. So I have an appointment with Jo next Friday to show me how to use Bronchitol and to make sure I don't have any immediate reactions. The review results were fine except that so there were no more changes and Dr Orchard said to finish the course of Septrin that Dr.Higton gave me last week and to keep on slowly easing off the steroids right down to 1 a day so I'm still on those for another two weeks. Then I have an appointment to see him again on the 24th July.

It's all fun and games in the life of a CFer!

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. 

Saturday, February 21, 2015

February IVs

Back on the 9th February I had a hospital appointment following up from my January appointment. You may remember reading from my previous blog post that I had been up in the night coughing quite a lot so Dr. Higton told me to double up my dose of Omeprazle as it was most likely to be acid reflux. Since doing that, the coughing in the night stopped but my cough in the day has been very productive and I have been coughing lots. So at the hospital I was expecting the lung function to be lower than usual.

I arrived about 11:15am and mum met me there straight from work before her afternoon clinic started. When I arrived Jackie did my obs and I did my lung function. As I was expecting, the lung function had dropped to 50% which is quite low for me. Therefore, I was expecting IVs. Judith came in and saw me and asked how I was feeling and I told her I wasn’t feeling great. She said “Do you think you need IVs?” and I said “yes but I’m not staying in” and she told me they didn’t have any beds free anyway. (Thank god! Haha)

Charissa came and saw me first and wasn’t too concerned about my weight as it was stable to last time. However, I explained to her that I had been having some stomach troubles so she gave me a food diary to complete over the next few days where I include what I’m eating and how many Creon I am taking. She said Dr Orchard may want an X-Ray to see if I’m blocked up.

When Dr Orchard came in, we spoke about my stomach troubles first and he said after reading my notes and speaking to Charissa that the Omeprazle change of dosage would have had something to do with it because it stops the Creon dissolving as fast which would explain my stomach pains. But he would like an X-Ray to see if there is a blockage. Charissa also came back in and told me to change my Creon-fat intake to 9g. So to take 1 Creon capsule per every 9 grams of fat I eat.  Dr Orchard and I then spoke about my lung function and agreed that I would need some IVs for two weeks. He also said he didn’t want me going to work because technically I should be staying in hospital where the lung function is so low but he knows I will do all the treatment. But he wanted to see me one week into the IVs and if my lung function hadn’t improved he would then want me to stay in the hospital. So once all this was discussed, Jackie took me down to the X-Ray department to have my X-Ray. In the meantime mum had to go to work.

Once we were back at the CF Unit, Judith came and accessed my port and started up my test doses. Then she went to contact Calea to get the home IVs delivered. However, they don’t deliver until 48 hours after ordering so she had to call pharmacy to order all of the medication so that mum could draw up the IVs for the first 48 hours until the delivery arrived. The test doses took about 2 hours as Dr Orchard prescribed me with 3 different Ivs; Meropenem, Tobramycin and Teicoplanin. Then I waited for the pharmacy to bring the drugs up to the unit.

Since being at home mum and dad have been really helpful, getting up at 6am and doing all of the morning IVs and I have tried really hard with the physio and done it twice a day to cough up as much as I can. Then I went back to hospital last Monday and was so happy with the result..
My lung function was 70%!!!! It had improved 20% in just a week! IVs and hard work really do pay off!!! Because the result was so good Dr Orchard said he didn’t need to see me. So I just saw Charissa and Jo and then it was home again.

The IVs finally finish tomorrow evening and the one thing I am excited for is a proper bath!! I haven’t been able to have a proper bath as I can’t get the port wet. So I have been having to shower my hair first and then have a shallow bath afterwards.

I am also back to work on Tuesday which I can’t wait for. You’re probably thinking who wants to go back to work, but when you have been at home bored for 2 weeks and you enjoy your job you will want to go back!

I then have hospital again on Thursday at 2pm so I will wait and see what the result is then. Who knows, maybe the lung function is even higher!!

Sunday, January 11, 2015

Hospital Appointment- 9th January

I had hospital on Friday which is my first appointment since 28th November. 6 weeks without having to call them to be seen earlier, that's good for me. 

However, I have had this horrible tickley cough for about 2 weeks now where I have been waking up every night coughing for over an hour but it's just a dry cough and nothing comes up. So annoying! I have been a bit more productive in the day than normal too but have been doing lots of physio to shift it all and cough it up. 

I drove myself up for my appointment at 11:30 as mum was working. So it was my first appointment on my own. I didn't mind though. When I arrived Jackie did my obs and I did my lung function. Surprisingly my lung function was at 68%!!! It hasn't been that good without ivs or oral antibiotics for a ages. So that was a good start despite the cough. Charissa came and saw me after, my weight had dropped a little but she wasn't concerned as it wasn't a huge amount.

Dr.Higton came to see me and I was happy to see her because she's been off work since January last year on maternity leave with her little boy. She said I was looking really well and was very happy that I have stuck at my physio since the last time I saw her. I explained how I had been feeling and the cough had been keeping me up at night. She explained that it is most likely to be acid reflux if nothing is coming up when I cough so told me to double my dose of Omeprazle and to take it just before bed and hopefully that will sort it out but it may take a few weeks. Then to keep up with the physio to carry on bringing up as much sputum as I can. That was a good result for me as I was expecting to be told I would need some Iv's, so I'm glad the hard work with phsyio kept the lung function up.

Jo came and saw me last and was pleased I was keeping at the physio and that the lung function hadn't dropped. Then Emy came and flushed my port and I was ready to go home. 

Hopefully the Omeprazle fixes the cough and it has sorted itself by my next appointment on the 9th February. Otherwise, Dr.Higton said it may be that I need some Iv's.

First Post Of 2015

Although I'm about 10 days late... HAPPY NEW YEAR!

Wow its been ages since I last blogged, woops! Looking back on the last time I blogged on 20th November, I was poorly so Dr.Orchard prescribed me with Steroids and Chloramphenicol. Well when I went back on 28th November they had worked the trick and my lung function was in the 60's and I was feeling great. So I dodged the Iv's. Yay!

December was an exciting month. At the beginning of the month me and Mum went to Cornwall and stayed at Granny and Robert's house for a few days. We arrived on Saturday 6th. On Sunday Granny had organised for us all to go for a Carvery which was lovely. There was Me, Mum, Granny, Robert, Auntie Al, Uncle Viv, Uncle Jas, Auntie Kirsty, Uncle Col, Uncle Zac and my cousin Isla. The meal was really nice and it was good to see everybody. 

We then did a bit of shopping, saw Kharis, Joe and Miley on one of the days and then when we had seen everyone we went home again on the Tuesday.

On Friday 12th December Me and Max went to Winter Wonderland in London and stayed the night in Thistle Kensington Gardens. Our hotel room was really nice and they gave us a free upgrade to a room price which is usually £380 per night!! At Winter Wonderland we went in the Ice Kingdom and saw lots of different sculptures all made out of ice. They were really cool to see but it was freezing in there so we didn't stay for long. After that we went and got some chips and looked round the markets before our next session which was ice skating. Usually when I've been to Winter Wonderland in the past I take my own ice skates but I didn't this time and their skates are hockey ones so I couldn't skate very well where I've never used hockey ones before! It was still fun though and we had a laugh trying to not fall over! After skating we went to the ice bar, we had to wear big ponchos and thermal gloves to keep warm where it was so cold in there. The lady said it was about -12 in there! We had a free cocktail each in cups made out of ice which tasted amazing!

The next day we decided to leave our bags at the hotel and go and do a bit of shopping. Big mistake when we aren't used to London being that busy! I think we went in about 5 shops and decided after queueing in M&M world for 45 minutes that we'd had enough and wanted to go home. It was a lovely few days and got me in a Christmassy mood!!





Then it was Christmas!!!!!!!

(I wont write loads otherwise you will still be here reading this in 2016!)

Christmas day was spent at our house and Grandma and Grandad joined us. We all got up and did stockings first in mum and dad's room like we have done for every Christmas I can remember. Then once we'd had our breakfast we opened presents!

I got some lovely things! Mum and dad got me a Michael Kors Watch, some leather boots, a blue fur coat, mittens on a string, Elsa collectible doll, many of my Disney dvds to add to the collection, Olaf pyjamas, Minion pyjamas and lots of other things.

Abbi got me some of my Disney dvds, Minion Monopoly, Topshop Voucher and she also did me a stocking full of presents.

George got me a pandora charm and Tinkerbell collectible doll.

Grandma and Grandad got me Anna collectible doll, Soap and Glory stuff, Shoe phone holder, sweets.

I was spoilt!!!

In the evening Adam (Abbi's boyfriend) and his sister and mum came round. We had a games night and all played thoughts and crosses game and The Chase. The day flew by!

Boxing day we went to Uncle Tim and Auntie Selina's house for a buffet and to exchange more presents. And ofcourse to play more games!!

Then on the 27th I went to Max's house and spent the day with his family. Max got me some amazing presents. All white leather Timberland boots, Olaf (stuffed with love by Max at the Bear Factory), Ariel collectible doll, Marc Jacobs Honey Perfume and a stocking with more presents in too.

I had a lovely Christmas but it was over so quickly.

New Years Eve I spent with Max and his family at their party in Bramley which was a really good night. Considering I didn't know many people I enjoyed myself.

I will stop typing on this post now before it turns into a 5000 word essay!!

Happy new year x