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!!