Port Removal Surgery (attempt two)

I was supposed to write these blogs about both surgeries way sooner than this, but I was admitted like a week after I was discharged from the third surgery. I was started on the IVs, which mixed in with pain, anxiety, and trauma, meant I could barely string a sentence together at first. BUT I’m here now, fighting my way through the memories to try to piece together what happened. I think this will be as enlightening to me as much as you once I’ve got to the end.

You *may* be aware that the first surgery did not go to plan. The hospital sent me home with the catheter sticking out of my neck, obviously both incisions were dressed so I didn’t actually see what was happening in my neck, but as my mum was instructed to change the dressing at home (which was a mare in itself), she did see it. She said there was about 4cm of white tube, tied in a knot poking upwards toward my chin (she did offer to take a photo of it but I think that would’ve haunted me for life, so I said no thanks xx). As you can imagine, this was pretty painful and very uncomfortable, it was set in such a way that if I moved my jaw or neck, it would cause the catheter to shudder / vibrate / ricochet (I’m still not sure which word most accurately describes the feeling) upwards so I had this almost like Tourettes tick even when trying to speak, it was miserable.

On top of this, an additional impact of the physical pain and discomfort was that my lungs started to fill up with sputum. I was told by the physios that this was happening because I was breathing very shallowly, partially because of the pain and also, I guess it was my body naturally trying to avoid agitating the wounds, so my lungs were filling up simply because I wasn’t using them. My primary issue with my CF, is that my lungs can deteriorate extremely quickly so physiotherapy was very important during this time. I’m not sure if I’ve explained physio on the blog before, but in layman terms, it involves a lot of overpressure, controlled breathing, huffing, and coughing but with the catheter in my neck, this was very difficult. It sounds so silly if you can’t relate to any of this, but I was hesitant to cough because it felt like I would cough this catheter out of my neck (I told this to the physio and she very kindly reminded me that given two surgeons literally couldn’t pull it out, it was unlikely that one cough was going to do the job).

Day by day it was getting harder to breath, I’d lie down to sleep and sounded like Darth Vader because there was so much obstruction in my lungs. I’ve been pondering for about five minutes on how to adequately articulate how awful it is to be in such pain whilst consciously reminding myself on how to breath, but the truth is, regardless of how eloquent a writer you are, there is very little chance of making someone with good lungs have any inkling of what it’s like to not be able to breath, let alone with overwhelming pain on top. It was one of those times where you think you’re going to be trapped like that forever; it was only for about 10 days (I say “only” with a lot of disdain), but I was really struggling to see any light at the end of the tunnel.

I had a conversation with my psychologist the day before the second surgery, and she was explaining that the first surgery and all the complications could come back through as PTSD. She thinks I’m already a bit PTSDy from a different experience (completely unrelated to CF), so was concerned that I would be a little more at risk of this. Throughout this conversation, I said my main concern was going back to the same department who botched the last one so badly, I just kept saying over and over that I don’t trust that team, which is just terrible foreboding of what was to come.

So swiftly moving on. The first surgery was a Tuesday and the second one was the Friday. Again, we were instructed to arrive at the hospital for around 08:00, nil by mouth from midnight, which, unsurprisingly was far easier this time because eating and drinking sent such a shudder through my neck. One of the physios met us at interventional radiology as emotional support, to fight other staff if necessary and to do some physio beforehand because ideally, they don’t want to send you into surgery unable to breath believe it or not. It was myself, my mum and the physio in this cubicle and this WITCH of a nurse who was there at the last surgery. She came in and essentially tried to kick out the physio because “it’s one to a bed”. I completely understand that rule but given we were behind a curtain, and the bay was empty apart from one other patient and simply the gravity of the situation, you’d think she’d have a bit of compassion and empathy. But, thinking about it, last time she made it clear that she was incapable of emotion so I’m not sure why I was so surprised when she asked the physio to leave. We decided that mum would wait outside instead of the physio because we were doing actual medical treatment that was necessary for my next surgery.

On reflection, thinking about the next interaction with staff, the whole thing was doomed the start. The anaesthetist came in, very jolly, very happy-go-lucky and said to me “I’m not going to put you under general, I’m just going to put you under sedation”, which despite my reservations last time and being told it would be “fine”, I wasn’t thrilled about this. I’d like to point out, I’m never rude to any health professional regardless of how agitated or unwell I am. I make a conscious decision to remain calm and polite so I had no reservations in coolly telling her the previous time was so traumatising, that I could feel everything, and I still remember it in graphic detail, so for this reason I would like to be put under, and this woman had the audacity to say, “ah well see that just means more paperwork”. Maybe it was a really badly timed joke, or she was being serious, but whatever it was, I was outraged. I certainly didn’t say anything (out of shock probably), but my face must’ve told her everything she needed to know because she hastily blurted out “let me check with the surgeon” so she scurried off and returned within 30 seconds to say “yeah surgeon said general”. Notice the ever-occurring theme of health professionals assuming they know more than the patient??

Anyway, eventually I went into surgery, was put to sleep, and woke up in recovery with a very sore throat and tied up to an oxygen nose cannula thing, and as I was still rather out of it, I was chatting a lot of rubbish to the nurse, and for half an hour or so I was feeling pretty good. However, as I began to come around a bit more, becoming a bit more coherent, this poor nurse had to tell me that the surgery had failed. I was completely devastated because instantly, flashing through my mind was the pain, the difficulty breathing, the not eating, the not sleeping, and the prospect of another surgery. In that moment, I could physically feel my sense of hope shatter, it was like I had been dropped through the floor.

I can’t remember anything after this, so unfortunately, I can’t tell you anymore. I think I just willingly disassociated until the third surgery a week later. So yeah, that was the second attempt at getting my port out, even writing this now, I feel like I’m back there, still trying to process it retrospectively and I guess that’s why I’ve run out of things to say in this post. I’ll get to writing about the third surgery and post it a week’s time because writing these experiences, along with how I felt at the time with nobody to challenge me on it is so cathartic so thank you for reading, you really make me feel heard 🥺🫶🏻