Thursday, September 8, 2011

Clinic day

So after saturday's episode I was expecting clinic to be alot worse:

However when the doctor you see is one who rarely ever does clinics and so hasn't seen you in a year, has no idea what has been going on generally things kind of get ignored. The hemoptysis was mostly ignored with no real answers as to why it happened. The topic of aspergillous wasn't even brought up this clinic (both of these things I will be chasing at my next clinic appt).

My lung function was down by 15% from my best and what I had been expecting after finishing IVs. I have been put on a 2week course of ciprofloxacin to try and help improve lung function and another appointment for a month!

Sunday, September 4, 2011

Not the best of weekends

So not the best of weekends I ever had.....

It started off well. I finished IVs on wednesday morning and was feeling great. Then from about thursday evening I started to come down with a cold, most of friday I had a sore throat from a really dry irritating cough (not productive in the slightest) and so guessed it was related to the cold! Friday evening I went out with friends to pizza hut and then back to one of their houses to see their dogs! I got home at about 10.30pm and was feeling alright bar the cold.

I woke up at about 2.15am and started coughing and thought 'thats not right', so turned my bedroom light on to discover I was coughing up blood. This continued for a good 15minutes before I rang my mum and told her I needed her to come round. We then took a trip to a&e where it had died down abit to just a few streaks of blood rather than whole mouthfuls of it. However about 20minutes after being in A&E, just as the doctor came in it started again and continued for the whole time he was with me trying to ask me questions. This is quite difficult to answer as you are coughing up blood. After they discovered I had a pink card which gave me direct access to the hospital ward where I have my CF care they decided to just send me there instead of keep me in the local hospital for observation (I think they were abit scared on how to deal with me because I have CF!). So after 2 failed attempts at a cannula being inserted and finally successful on the 3rd I was put on fluids (because my heartrate was high and was for the whole time I was in hospital!), I was then put into an ambulance to go to my normal hospital. My mum was told she could not drive me over because I had a cannula in and I was being admitted through a&e so it had to be an ambulance. So I was put in the ambulance at about 5.15am and arrived at about 6am.

There I was asked the exact same questions as I was in a&e and so repeated my answers. Despite the fact bloods were taken in my local hospital, they had to be repeated at my normal one. As the first lot were taken in a different county so they could not access them. This meant another needle because they couldnt possibly use the cannula as this was being used for fluids. I was also sent for an xray as well.

After being reviewed by the CF registrar on call he decided I could go home with a short course of tranexamic acid to help the blood clot as none of my bloodwork showed any sign of infection and as I had just finished IVs on wednesday he was reluctant to start me on more because I already have multiresistant pseudo (only sensitive to 2antibiotics now so he didnt want to reduce it more!). Also there was the condition that I had to of had no more episodes during the day before I was allowed home at about 3 or 4pm ish.

My mum and brother turned up at about 2pm and I was allowed home at about 2.30pm after my prescription had arrived from pharmacy and my doctor had confirmed all my bloods were ok. I finally got home at about 3.15pm

It was a long day yesterday. I had at most an hours sleep since getting into bed at 11pm friday night until I went to bed at 8pm saturday night. I was so exhausted that just the efforting of eating made me sick. I had very little to eat on saturday as I had no insulin in the hospital (they kept asking me if I had brought my meds in with me and when I said no because I went to a&e at 2.30am and didnt really think about it they gave me weird looks. Also hospital pharmacy just dont act fast enough on any day of the week for them to even bother trying to get some from them knowing my mum would be there at 2pm with my bag of clothes and all my meds incase i did have to stay in!). I slept for 12 hours last night.

This morning I woke up with a very sore chest where I have obviously strained my chest muscles from everything that went on yesterday. It was so sore that it hurt to even tie my hair up!

Its quite scary to think that this can happen so fast. I went from being totally ok to being in a&e in less than 4hours time. I don't think some people have ever really believed me before that things can change so quickly in some with CF but now they do!

However this also means I have had to drop out of a show I was meant to be in this week as I'm just not fit enough which I was upset about earlier when I had to let them know, as the first show is Thursday-so really quite late to be pulling out! However as they said I shouldn't worry about it as my health is too important and if I even thought about turning up to anymore of the rehearsals (even if it was just to watch) they would send me straight home again to rest.

I have clinic on thursday where I will see what my lung function is doing and anything else as to whether I do need more ivs, orals or nothing.

The doctor came up with 3possible reasons for why this rather large bout of haemoptysis happened:

1. It was something residual from my last infection (as I had just finished IVs on wed)
2. It was a new infection brewing but did not yet show on my blood work
3. It was just one of those things that CF lungs can be prone to and has nothing to do with infection.

None of which offer particularly great feelings but there you go, that is life and I am home and feeling better than yesterday!