Hickman line trauma

I got a new Hickman line last Friday.

I started to write a blog post on what happened but I just can’t. I’ve tried and tried but every time I try I manage to write a few sentences and then I have to leave it. The whole experience was extremely traumatic and I’ve accepted that for now it’s too difficult for me to write about in any great detail.

In a nutshell I went down to have a new line put in last Wednesday. Because of issues with my veins after about 20 minutes of trying the procedure had to be abandoned. During those 20 minutes despite lots of local anaesthetic and sedation I was in a lot of pain and found the experience really awful. As a result it was agreed that it would be best if the insertion was done under a general anaesthetic. It should have happened on the Thursday but they had some emergencies in theatre and I got bumped off the list. Any how it happened on Friday afternoon.

I know they must have had some issues putting the line in as before they put me to sleep they said the procedure should last 30-60 minutes but in fact it took closer to 2 hours.

The good news is that with a line in I will be able to go home. But the bad news is that my poor access is now starting to cause me real issues. I know that if I need a new line in the future it’s likely it will have to be done under a general anaesthetic again and I really worry that there will come a time when the veins in my chest are simply unusable. I’m assured by the team on the ward that there are other, inventive places they could put a line and that I should never have no access but inventive solutions are often difficult and painful solutions.

Ironically since getting my new line I’ve been so, so down. I think that although I know I’m getting closer to going home the effects of the last 12 weeks have hit me like a steam train crashing through a brick wall. I know that the way I try to cope with everything my illness throws at me is by soldiering on and putting all my difficult emotions into a box with the lid shut tight and securely padlocked. But sometimes the lid comes off and like Pandora’s box I never quite know what’s going to come flying out. I’ve had days where I haven’t been able to stop crying. I’ve been angry, sad, hopeless and downright bitter about the situation I find myself in. But if I think about it rationally though I know that all those emotions are driven by fear.

I’m terrified of what the future holds for me. I feel like I’m stuck in a horrible limbo where I have to accept that while I wait for surgery there is a very real chance that there will be other hospital admissions. And then there’s the fact that even when I do finally have surgery it might not fix me. In fact it could make everything worse. I’m 40 years old and the thought of living like this for another 20, 30 or 40 years scares the hell out of me. Funnily enough this was on the Crohn’s & Colitis Awareness Facebook page today and just sums up how I’m feeling right now.

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day! Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40. To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works. I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold. ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days! I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit. As someone who is receipt of both PIP and ESA disability benefits I find this whole situation… 🔲 terrifying 🔲 baffling 🔲 rage inducing 🔲 disgusting 🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own! Now I do b...

More than just a bag lady

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