Wow, well I can’t believe this, but Christmas is over and we are rapidly heading into New Year. The run up to Christmas was an interesting one.
If you remember in my last blog I said I’d had the gastric emptying test – well we got the results and it was not good news. I have severe gastroparesis. Gastroparesis is paralysis of the stomach, this means that I don’t digest food properly and it causes pain and issues with absorption, which means I don’t get the nutrients I need, it also means my tablets don’t get absorbed into my system. We are initially looking to control symptoms through medication and diet, this means that in the New Year I have to switch to a liquid diet. I wanted to have Christmas first and all the nice food before switching – end on a high as it were. I love my food, so this is difficult for me but by switching to a liquid diet now it means I might be able to avoid feeding tubes and TPN, for longer. Unfortunately, with this condition there is a strong likelihood that at some point in my future, (whether it be temporarily or permanently) that I will need to go on to being tube fed. So Nutribullet at the ready and smoothies and soups here I come!
I still have the bladder infection and have gone another round of antibiotics at home through the PICC line. The PICC has now been removed and I am hoping if they need to do IV therapies again they will insert a port-a-cath. This is a device that sits under the skin ready to hook up to an IV, because it is under the skin the infection risk is lowered and it means I could swim. I am also seeing a new urologist locally as well as my Professor in London. I have started on a new treatment and it is brand new, it has only just finished clinical trials in the UK. Its called Uromune and it is supposed to help boost my crumbling immune system to protect against bladder infections. Fingers crossed it works because it is not cheap and not covered by the NHS or insurance. I am also having to have bladder washes once a week to coat the inside of my bladder to try and help rebuild the lining. I am seeing my urologist again in the new year to find out how we are doing with tackling the infection.
I then planned a week in the run up to Christmas with no hospital appointments, so I could relax and get things done in my own time. My body of course had other ideas and I ended up in hospital with a suspected stroke! The day the PICC was removed I started to get numbness and pins and needles down the right side of my body. My husband was out teaching his martial arts club so I gave my best mate a shout who is an A&E nurse, she came straight over and carted me off to hospital where they did a head CT and ruled out a big bleed, we then saw a neurologist the next day. By this point we were almost certain I had suffered a mini stroke (TIA), however the neurologist thinks it was just a hemiplegic migraine. I say ‘just’ it was terrifying and awful, so I am not trying to belittle it, I am just very grateful it wasn’t a stroke.
So after all that excitement it was nice to have a very quiet relaxed Christmas with my family.