Should you have to fight to save your own limb?

If you have followed my whole vascular surgery you will know that I have now equipped myself with some sound Vascular medical knowledge. I am also very self aware, and since the diagnosis was placed in the vascular camp, everything that has gone wrong since, I have known before anyone else. What is more, I have been right every time when I tell them WHAT I think had gone wrong.

the story restarted again when I emailed the surgeon a few weeks ago saying I thought something was wrong. The more I analysed my symptoms, the more I thought the problem was blood flow related (again) but what I did not know was why it had recurred.

My first email to the surgeon saying something was wrong was on 28 August. They made an outpatients appointment for me asap – with the other surgeon, on 2 September. They confirmed what I thought, that the flow in the lower leg was reduced. They ordered more imaging and suggested an angiogram was worth a try. What I was not sure of at this stage was how they had come to this conclusion when it was always ruled out as an option at every other point until now. And… how did they know this without recent imaging?

So, I had a CAT scan on Friday 11 September, and a vascular ultrasound today (Monday 14 September).

What I know so far..

😤 No idea what last week’s CAT scan report said… no one will tell me. Might have to go get a copy myself tomorrow on the grounds of the fact that i have a right to see all of my own medical records.

😢 Ultrasound imaging from today: it was difficult for them to draw concrete conclusions due to scarring from all the recent surgery. But it seems there could be a narrowing of the artery at the bottom of the graft, and flow at the ankle end way lower than would be preferred (30%).

😢 Angiogram was booked for Tuesday 15 September. Late on Friday 11 September I received a call saying they were having to cancel it. I was given a new date of Thursday 17th September. When I was up at Dunedin Hospital today I chased them for an admissions letter. That is when they told me that it has been cancelled yet again. (For a second time). It seems the radiographer booked to do it on me this week doesn’t want to due to the fact that the problem area is in small fragile vessels and is therefore a trickier task than they would prefer. This made me rather raging mad. I consulted a legal beagle friend of mine. Her take on it was perhaps the radiographer in question was not skilled enough to deal with my specific problem.

😡 What next? Who the hell knows.

🤬 They (at Dunedin Hospital) are going to have a meeting about me this week and call me when they have an idea of what to do next.It’s frustrating the hell out of me that I simply have been left to suffer. Perhaps I need to start asking some tougher questions.

  • What exactly is the save the leg surgical plan. WHY… and what outcome are they hoping for by doing this?
  • Are they the right team for the job… if not is there somewhere else I should be sent to that has people with the correct skill set to deal with my articular problem with a view of saving the leg.

Meanwhile the pain is driving me insane. I’m almost ready to say lets go with the amputation. I’m beginning to think it would be a better option and at least then I could start getting my life back afterwards.

Or perhaps that is what they want me to think… saves them having to figure out the why. 🤬 😡😤