Port Removal Surgery (attempt one)

I’m 24-hours post general anaesthetic writing this and it was far more difficult than I was expecting to get my brain going so the writing standard of this might be sub-par.

Just as a quick reminder as to what a portacath is a device used to draw blood and give treatments, including intravenous fluids, blood transfusions, or drugs such as chemotherapy and antibiotics. There's the actual access point which is a solid round part that sits in the chest and a catheter is attached that runs from the port up into the neck and down into the heart.

I was supposed to have my port removed on Tuesday 11th April (almost seven years to the day of having it put in). The entire thing was an absolute mess since the first phone call informing me of the date. A radiology nurse explained to me that my port would be removed under local anaesthetic, this immediately sent me into a bit of a breakdown because 1) I had my port placed under general so was naturally expecting it to be removed under general and 2) I am very aware that my port is much deeper in my flesh than most portacaths I’ve seen; so I explained to the nurse that local anaesthetic would not be sufficient to which she very blatantly brushed me off with “oh we can sedate you if you’d like”, which I knew would not be enough for me but the nurse quickly made it clear that she was the professional and I was the patient who knew nothing and I figured arguing down the phone was not going to get me very far.

We arrived at the hospital at 08:00 as instructed and remained nil by mouth (no food or liquid) from midnight if I wanted to be sedated. I wasn’t rolled into theatre until 14:30 so I was desperately dehydrated, and dehydration makes anyone difficult to access vessels from but I am famous for being a hard person to stick which is exactly why I had the port placed in the first place. So two attempts at a cannula in the morning by two different people, both of which failed because I was dehydrated but the nurses trying to get me said they’d use the ultrasound once I was in theatre to place one even though it wasn’t the location that was the problem, it was because I hadn’t drank in hours, which I told these qualified nurses was the reason but again they dismissed what I was saying as though I didn’t have any experience with my own body, and I cannot explain how insulting it is when a health professional treats you like an imbecile even though you've been doing it for 20 years.

So, as with any medical procedure, I had to sign the consent forms which explains the process, the risks etc and I ticked the “for sedation” box and signed the paper in front of a nurse. At this point I explained to the nurse TWICE that I really don’t think only local and sedation is going to be the best course of action for anyone in that operating room but once again, she brushed me off insisting that the sedation will make it doable. When I was eventually rolled into the surgery room, I was left waiting on a trolley staring at all the instruments whilst four or five doctors / nurses were talking about me at the other end of the room. It doesn’t take much to work out that although I’ve had plenty of procedures, I do not cope well with them, I get incredibly distressed and upset in clinical environments with lots of staff fussing around me.

Eventually another nurse wanted to load me up onto the operating table without even trying to initiate any confirmation about myself or the procedure and bearing in mind I was crying at this point because I was so scared of only having local anaesthetic, so through my tears I asked her when she was going to sedate me to which she said “I wasn’t planning on it” EVEN THOUGH IT WAS ON MY CONSENT FORM TO BE SEDATED AND I WAS CLEARLY VERY DISTRESSED. I have no reservations in saying that although she managed to do all the surgical bits and pieces, she was a poor excuse for a nurse in that I did not feel a shred of compassion or empathy. So begrudgingly she cannulated me but didn’t administer the sedation straight away, even though I was still crying and hyperventilating at this point because there were surgical lights and people stood staring down at me, the surgeon had got my port out from under the gown so much so that my boob was out being sloshed in antiseptic which was just so humiliating. The sheet they used to isolate the area was covering my face so I could just about see out from under the sheet, I couldn’t see anyone but I could hear and feel so many people faffing around my chest. It’s difficult to liken it to any other experience, I just felt so vulnerable, it didn’t feel like any of these professionals had any consideration for me as an actual person who was possibly in the most awful position of her life. It's making me feel insanely distressed just thinking about it.

They told me they did use sedation on me (although I felt very very conscious the entire time and I remember the pain in excruciating detail). They were really having to dig around in my chest to get the actual port part out which I could feel them clawing at, I could hear the surgeons pick at it with their tools, I could feel them dig deeper and deeper. They then tried to take the catheter out which was connected from the actual port access into my heart but I think I heard the surgeons say the catheter had been stitched in to my vessel, or it was too embedded into the blood vessel so it couldn’t just be pulled out with the rest of it. This meant they had to cut into my neck to pull it out the other end but as the catheter was so embedded it just wouldn’t move. They were literally tugging and yanking through this incision in my neck which I could feel intensely and was sobbing in pain, at this point I noticed another male voice so guessed that they had to bring in another surgeon but obviously I was still staring out of this sheet, focusing on a cupboard handle so I didn’t know for sure. I will say there was a lady radiologist holding my hand the entire, wiping my tears telling me I was okay and that she wasn’t going to leave me, she was excellent and was the only slight bit of comfort I had but I must have crushed her hand because I was squeezing it so hard. After two and a half hours of this (I was told the whole procedure would take 30 minutes), they decided they couldn’t get this tube out so left it hanging out of the skin in my neck and needed to finish the operation but because they’d been working on me so long, the anaesthetic had started to wear off so I felt the first stitch of the port incision which was agonizing, where I just screamed in pain.

After they’d sown me up, they shuffled me onto the wheeling bed and as I turned, I saw the sheet I was on was covered in blood which set me off hyperventilating and shaking from the shock and trauma of it all. I wasn’t given ANY pain relief as far as I’m aware and one of the nurses came to out to me afterwards and said, “yeah you really should’ve been under general for that” (which I had told them multiple times beforehand). She promptly pulled out my cannula and sent us home with no pain killers, no instructions about looking after it, signs of infection etc, and said to come back on Friday so they can finish it off under general. I was obviously too upset to remember to ask questions about pain relief and infection (which is a massive thing in this scenario given the line is sticking out of my skin and going into my heart so if that does get infected, it’ll become ugly very quickly).

I am absolutely disgusted with the care and neglect I received from interventional radiology because that was single handily the most traumatic physical experience I have ever had which was completely avoidable had these professionals listened to what I had to say. The same nurse who I had told three times that local wouldn’t be appropriate had the audacity to call me the next day to apologise that they “needed to bring another consultant in because they hadn’t realised how deep the port was in my tissue” despite me literally SHOWING HER WHERE IT WAS IN MY CHEST.

I cannot believe how angry I am, the entire experience was so violating and traumatic simply because yet another medical department thinks they know better than I about my body. I would like to point out that my CF team (nurses, physios, consultants, psychologist) have been bloody excellent advocates and helping me out over the last few days but the last three occasions where I’ve had to have intervention from other departments has been shocking. Time and time again nurses and doctors refuse to listen what I’m telling them because they consider themselves more knowledgeable based on their one lecture on cystic fibrosis 20 years ago instead of valuing my perspective when I’ve been living with it every single moment of my 22 years. I’ve said it before and I will say it again, if you are a practicing health professional PLEASE listen to your patient if they have a long-standing medical condition, they will know far more about their body than you ever will.

I will write a separate post about the operation I had on the Friday because that’s a whole other story in itself and right now I do not have the ability to piece it all together.

I'm so upset to be writing about such a horrid experience and how I really am losing faith in medical staff; not because of the strikes, working conditions etc but because professionals think their degree trumps lived experience. I don't like that this is my opinion but that's exactly what my admissions into other departments has shown me.