Oh dear, I've been a bad blogger again... Its mostly been down to my health being a total disaster area. The doc's finally decided that I'd had enough positive cultures of a micro bacterium called Chelonae to actually warrant treating it. Given that they've been trying to decide this for about two years, you can see how few positive results I've had and also how serious the treatment is as they don't give it to you until they really think you need it. The treatment is seriously, seriously crap- for me it was two weeks in Papworth on three IV drugs, two of which are very, very strong along with two nebbed antibiotics and four pill antibiotics! This was followed by a slightly reduced IV regime of the two massively strong ones, as well as all the nebs and pills for another two weeks which, thank God, was at home and I am now on the maintenance regime of the two nebs and two pill antibiotics...its still a lot of drugs, but it is much more bearable than the IVs. They actually wanted me to do the IVs for longer but I'd lost so much weight (5kgs in about 10days) and was so knackered and weak that they let me stop at four. They were really nasty drugs too; tigicycline (I think that's how you spell it!) makes you seriously sick-I spent the first 48 hours unable to eat anything and not even water was staying put. The docs eventually got a good anti-sickness regime going which at least let me keep food down, but one of the anti emetics I started with, was so strong it basically knocks you out; so whilst you aren't being sick anymore you are also mostly comatose-great! To give you an idea of quite how sick I was, they gave me the same drugs that they give cancer patients when they are on chemo-really no fun at all. So, that was pretty much all of April out of the window on massive loads of drugs, so I didn't have a chance to do anything interesting to blog about.
At least now I've had a bit of time to recover and even go on holiday with Mr EB and the massed Evans clan, I'm getting back to work on my wedding dress and doing some embroidery too. Hopefully, I'll be able to do some more interesting blogging soon when I will finally be able to blog all the pics I've been taking of my dress and have some other work to post as well. Life will finally get back to being sewing and fun based, rather than drug based!
Trying to stay afloat on a sea of medication. Living as best I can around my Cystic Fibrosis.
Tuesday, April 22, 2014
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4 comments:
Glad the worst is over! Have fun working on the dress :)
Hi Ros I just found you're blog. I'm about to start treatment for mycobacterium abscessus on Monday. Have read so many horror stories am terrified. Mine was picked up in June. Was it the nausea that was what made it so bad? I've been told all patients will now be prescribed emend which is an anti sickness they use for chemo and that's is v effective... I'll be on tigecycline amikacin and meropenum to start with. Any advice would be great x
Hello Anon! It is the nausea that makes it horrible, the tigecycline is what got me. Emend is good stuff, glad you'll be on it at once. I also had ondasatron and dom peridone and one I think was called levemar. Can't quite remember. Once they got my nausea under control it was much better but it is a lot of drugs so be prepared to be tired and I found it very dull as wel,so stock up on books and movies to help pass the time- good luck :-)
Thanks so much! I have never had nausea from ivs before but know tigercline is supposed to be tough. I'm glad they've changed the regime so you start this anti sickness first. Being tired I can handle! Just hoping this works as feel I have a long road ahead. I feel ok at the moment but I guess it's best to get started asap. Congrats on your wedding! I got married in 2012 was an amazing day. I'm under the Brompton btw x
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