After being admitted to QMC in Nottingham on Sunday with a broken Hickman line I was taken down to Interventional Radiology on Monday afternoon to get my line repaired. Firstly, I couldn’t believe it was happening so quickly and secondly I didn’t want to get too excited because, well it’s me, and usually things don’t go according to plan. And sadly I right to rein in the excitement.
When the doctor came to consent me for the procedure it was for a replacement, not a repair. I assumed he had made a mistake so I told him I was there to get my line repaired and was definitely not there for a new one. He looked at me and said “I hate to be the bearer of bad news…” and that’s a sentence that never bodes well. He then went on to say that they didn’t have any repair kits and that they hadn’t had any for over a year!!
I couldn’t believe it. Well, actually I could but I knew I didn’t want to have a new line put in. You’re probably thinking why not? Just get a new line put in and get yourself home. But it’s not that simple. I wish it was. The Hickman line I currently have is my 15th line in 10 years and each new line has to be tunnelled under my chest wall which causes a lot of scar tissue. So each subsequent line insertion gets more and more difficult and more and more painful. I’ve found the procedure for the last couple of line insertions quite traumatic and if I can avoid going through that again I will. And with each new line the veins get battered and I’m terrified that eventually I will lose access in my chest and they won’t be able to get a Hickman line in at all. That’s when you start looking at long term groin lines or even a line coming out of your back and that would be a complete nightmare to try and manage.
So I’m trying to protect this line at all costs and get it repaired. But what can I do if they don’t have any repair kits in Nottingham? 💡I ring St Marks.
Down at St Marks the nutrition nurses are trained to do line repairs on the ward so if they had a repair kit potentially they could do it in an outpatient appointment. But I wasn’t sure if they had any repair kits as there’s apparently a national shortage of them. And if they did have some, would they repair my line given that I’m technically not one of their gastro patients. Yes, I may be under them for surgery now but would that count? When I was in St Marks last week I had bumped into one of the nutrition nurses that looked after me years ago and we had a good catch up, so I was hoping that she would remember me and take pity on my plight.
I rang and left a message on their answerphone so all I could do was wait for them to call back which they did on Tuesday morning. The nutrition nurse at St Marks agreed that a line repair was definitely the best option and that yes, they would be happy to do it for me. Result! All I had to do was get down to them on Wednesday for an appointment at midday. Could I manage that they asked? No problem I told them. I would find a way to get down to London by hook or by crook. Originally I was going to drive myself as Hubby and Big Girl were both working and the train was going to cost £135! But then Dad came to my rescue and offered to be my taxi driver. To be honest driving there and back in a day would have pretty much killed me but I would have done it if I had to.
So this morning Dad came to get me and we set off to St Marks. The traffic was kind to us and we arrived with an hour to spare so we went for a coffee at a Middle Eastern coffee shop just round the corner from the hospital. We even managed to bag a disabled parking space at the hospital which meant we didn’t have to pay for parking! So far so good.
But my good luck must have been used up because when I went to my appointment with the nutrition nurse things went downhill. She took one look at my Hickman line and frowned. That’s not the same line we use, she told me and off she went to fetch one of her colleagues. The second nutrition nurse was the one I had seen the other week when I was an inpatient and she looked at my line and she frowned too. Definitely not good. Apparently Hickman lines come in a variety of styles and sizes. The particular make of line that I currently have in my chest has two sizes- a 7 and a 9. St Marks always use a 7 on their patients and it would appear that the line that was put in in Nottingham was a 9. And yes, you’ve guessed it. They only had repair kits for size 7’s. You couldn’t make this shit up could you?
I honestly couldn’t believe I had just travelled over 100 miles only to find out that my line couldn’t be repaired after all. Especially when the St Marks nutrition nurse had spoken to one of the nurses in Nottingham yesterday and asked them to email her the details of what kind of line I had so they knew in advance and could check they had the correct repair kit available. This email hadn’t been sent and if it had then they would have known that they couldn’t repair my line and I wouldn’t have travelled all that way for no reason.
But the nurses at St Marks don’t give up easily so they called Vygon, the Hickman line manufacturer, to find out if they had a size 9 repair kit and if they did they would they be able to get it sent to Nottingham so it could be repaired there. But of course that would be too straightforward. Apparently Vygon told them that there are no size 9 repair kits in the UK and no plans for any to be delivered as they’re held up in France awaiting some kind of quality certificate which we all suspect may be down to some kind of Brexit red tape. There is limited stock of the size 7 repair kits in hospitals around the UK and there is more due to be shipped to the UK in August.
So if I’m having a new line inserted it would make sense that I have a size 7 so there are repair kits available should I be unlucky enough for it to break. But Nottingham only insert the bigger lines and don’t have any of the smaller ones. So the nurses at St Marks sent me back to Nottingham with a size 7 line and a repair kit for me to keep at home so I’ve got it should I ever need it. So although I didn’t get my line fixed today it wasn’t a completely wasted trip.
So now I’ve got to be added to the waiting list to get a new line inserted in Interventional Radiology in Nottingham. I really hope they manage to get it done Thursday or Friday because they don’t do them at weekends and I really don’t want to be here until next week.
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