So, with my new resolve to write shorter, more frequent posts, here’s the next one…
My Hickman line half fell out on Friday 13 June. I don’t believe the date was to blame. I do wonder though, if perhaps nurse Emma cutting the stitch the day before had anything to with it…? It was over three weeks from being inserted so the tissue should have grafted, but clearly it hadn’t.
After a shower, I noticed the cuff on the line was visible and half way down the tubing. At first I thought the cuff had slipped down, but soon realised that the cuff is firmly attached to the line. This cuff should lie under the skin at the point where the line exits my chest; it’s main purpose being to act as an anchor to keep the line IN my chest. Fail! The line itself had partially slipped out.
“There is a small cuff around the central line. It can be felt under the skin, just above the exit site. The tissue under the skin grows around this cuff in about three weeks and holds the line safely in place.” – quote from the Macmillan website
Foolishly, I pushed it back in and then realised that I had just left myself open to a high risk of infection. I called my specialist nurse who agreed it had been foolish, but there was nothing to be done except to keep a watchful eye for any signs of redness, swelling, soreness and feeling ill. As I was going away for the weekend, I took a thermometer with me just in case.
Fortunately, none of the above happened and I had a great weekend away celebrating a friend’s 50th birthday and staying at The Ceramic House in Brighton, which was hugely inspiring.
However, on my return, throughout Sunday night, I was very ill with sickness and diarrhoea, several times, mostly at the same time. It was horrendous. I absolutely HATE being sick. But I was relieved that it had nothing to do with the line. Phew!
I got over that in a few days of resting, including my friend V, who was visiting from Belgium, having the same thing on the Tuesday night, so her visit wasn’t quite as ‘outgoing’ as we’d hoped. Nonetheless we still managed a day of charity shop shopping and a cinema visit, plus a walk in my gorgeous nature reserve, where I managed to collect 17 mosquito bites that itched and itched like hell, with no respite from Cetirizine or Piriton. My legs are now so cratered from scratching that they look like a fleshy moonscape.
The next occurrence was on Thursday 19 June, exactly one month to the day after having it inserted, the line completely fell out. There I was in my bathroom and Clack! I look down on the bathroom floor and my line is lying there with spatters of blood on the floor and the basin pedestal, and more to the point, NOT in my chest.
This time, I made no attempt to put it back in place.
Fortunately, due to problems accessing the line for the ECP treatment, which is the reason I have the line in the first place, I had booked myself into clinic that day to see what to do next. (I’ll write about ECP in a separate post). I saw Dr Emma, who’s the main consultant for GvHD and ECP. Unsurprisingly, she asked for an urgent appointment to have a new line inserted so I could continue with treatment.
I think this may have happened anyway. The previous plan, when the line had only partially slipped out, was to have a tubogram. Yes, that really is what it’s called. It would have meant returning to radiology for them to check where it was positioned and possibly reposition it, or if necessary, remove it and insert a new line.
There was a chance I could go in the following day, but I was very pleased when I found out that wasn’t going to happen. My visitor was still with me and was actually leaving that day, so I wouldn’t have been able to accompany her to the station. And I would still have to find a friend to be with me afterwards. I now have this procedure under sedation, after which, they insist that you are supervised for several hours afterwards.
So, on Tuesday, 24 June, I had offers from two friends, Tracey to come over around noon and take me into hospital and Janet to collect me afterwards and spend the evening with me. I was also feeling much improved from the nasty bug, so it boded well.
Tracey dropped me off around 1pm at Daycase for a 2pm procedure. First they check observations, do the usual pre-procedure checks and give me a gown. I also asked them to cannulate me before going up to Radiology as they often have difficulty with my recalcitrant veins upstairs. The Haematology nurses are much more adept with my tricky blood vessels. Even so, it took three attempts by three different nurses before nurse Jeff succeeded with an easy and painless baby cannula.
There was a long delay before going up to Radiology, partly caused by a consultant for an earlier patient arriving late and partly due to a new protocol, where sedated patients cannot now return to Daycase to recover, in case anything occurs that means they can’t leave before Daycase closes at 7pm. This new protocol had not been effectively communicated to the Transplant Specialist nurses, so Lisa, who had arranged the procedure for me, had not booked a bed on a ward for me. This meant that Daycase nurse, Cath was running around with a phone attached to her ear, begging the Bed Manager to find me a bed in which to recover.
She was successful, eventually! But both of these factors together meant that I didn’t go up for my 2pm procedure until around 4:30. And I didn’t get into theatre until almost 5pm. I was not a happy bunny. In fact I was a very grumpy, hungry, thirsty bunny. I had not eaten since 10:15, nor drunk anything since 12:00. The patronising ‘darling’ and ‘sweetheart’ comments from the radiology nurse did NOT help at all.
However, once I was in theatre, all went without a hitch. The team all introduced themselves to me and discussed what would happen, taking into account my preferences, including drawing an X to mark the preferred exit spot on my upper right breast. I really appreciated the good practice of an inclusive and respectful conversation. It feels like you’re all in it together, rather than being a slab of meat to be cut into and shipped out.
I was reacquainted with radiology nurse Chris, who had been just starting to learn how to fit PICC lines when I had mine fitted for the allo transplant two years ago. He’s now very proficient in PICC line insertion and repositioning, but not yet inserting Hickman lines. It felt comfortable to have a chat and joke with someone who almost felt like an old friend, as he administered the sedation.
The previous two line insertions (in February and May) were also done under sedation and as far as I was concerned, I was knocked out for the entire time. This may or may not be the whole truth… They say that sedation causes amnesia, so it may be that I was conscious but so completely forgot what happened that I decided I must have been unconscious. Without asking the radiology team, I have no way of knowing.
However, this time, I remember being awake and the sting of the cut into my skin, but not much else. This time, I didn’t sleep afterwards, which is I think, why I recall the experience. Around 6pm they wheeled me on a gurney to the Surgical Short Stay Unit (SSSU) to recover, where I was sufficiently awake to jump off and up onto the bed and demanded food and drink straight away.
I was supposed to stay there for three hours with half-hourly observations. After an hour though, I’d had enough. I felt fine, I was awake and the last place I wanted to be was sat unnecessarily in a hospital bed, just waiting to be discharged. I spoke to the SHO on duty, Dr Scarlet (in the conservatory with the candlestick… Sorry, old Cluedo reference!), who completely understood but advised me that if I left, I would have to sign a disclaimer to say I was going against medical advice.
I called Janet and as soon as she arrived, I grabbed my bag to leave. But oh no, I now had to wait for them to draft the disclaimer. Ten minutes later, a nurse came with a very repetitive letter for me to sign. If it mentioned that I was supposed to but was refusing to ‘stay three hours for monitoring’ once, it said it about four times. Nonetheless, I read it thoroughly and signed before they changed their minds and added a fifth ‘three hours for monitoring’.
In the end, I got out of there at 7:40pm, which was almost three hours after the procedure. If I’d stayed the expected three hours from arrival in SSSU, I wouldn’t have left before 9pm. Instead, Janet and I got a Chinese take-away, chatted, knitted and watched some easy TV. She went home as I went to bed, around 10:30. I was very ready to sleep by then, complete with the stretchy t-shirt bra that the radiologist, Dr Kate, had advised me to wear at night, to ensure I don’t roll over and catch or dislodge my precious new line while asleep. I am wearing it nightly for the first week.
So far, and I’m saying this with caution, it seems to be settling in well, with only some tightness at my neck, but less bleeding than the last one. I will find out later today if it actually works, when I attend for the continuation of my ECP treatment.
Having read this through before publishing it, I have to laugh… Despite my best intentions, I’ve still managed to write an epic tale. With thanks to Pippa for encouraging me to join her for a couple of hours of writing, which got me back into it again. Who knows, maybe the next one will be short and sweet, but don’t hold your breath!