It’s tough writing this: the outcome wasn’t what I had hoped, and rather than the story ending, it has only just begun.
I was scheduled for major vascular surgery on Thursday 3 July, to hopefully restore the blood flow to my left lower leg and foot. The reason the blockage had occurred – was (and is) still unknown. The plan was to do a femoral arterial bypass: using a vein from my right leg as a graft to bypass the blockage. This would mean two long incisions on both legs.
It was hard to wrap my head around the fact that I needed such major surgery so suddenly and with such short notice. It was considered urgent/ critical and was rushed through less than 10 days after the problem was originally discovered. In truth: I was absolutely terrified.
The day of surgery
I was warned that this would be a long surgery. There was lengthy discussions about how they would tackle my allergy to opiates when administering the anaesthetic. a complex plan was put in place and the last thing I remember was sitting on the side of the operating table and being asked to round my back and lean forward.
7 hours later…
7 hours! Mark came and went again 3 times before I was out of theatre. They expected it to take 3-5 hours. Not 7.
I was told that it turned out that the bypass wasn’t necessary, they had managed to clear the long section of blocked artery, much to everyone’s amazement. This is great news, right? Well originally I thought so. Till the surgeon came round to see me the next day.
The aftermath: a future of uncertainty
Once the blockage was cleared this did restore blood flow to the lower leg and foot, but I only have half the flow that I have in the other foot. The blood vessels in my lower leg are in a bad way, ‘crappy’ was the word the surgeon used to describe them.
There is a risk that this might not be enough. I might still have too much pain due to lack of flow and might have to go back and do it all again – with a full bypass next time – for definite. The problem is the bypass will now need to be even longer – from groin right down to my ankle rather than the original plan which was to just below the knee.
There is a risk that this might reoccur. Meaning I might have to go back again – for the full bypass that we avoided doing this time. Clearly a bypass is the last option available so the surgeon wants to avoid doing it if possible, for as long as we can. And of course, it has a finite shelf life and would need to be repeated. We don’t know how long it might last, because this op is usually done on the elderly – usually also with multiple health complications. I’m not exactly your usual candidate.
What does this mean for the function of the leg?
The left leg will never be the same again.
I have been told to expect permanent damage to the calf muscle. How much function I lose permanently as a result, remains to be seen. But I have been told to expect it to cause me some degree of pain – on a permanent basis. This is now my new normal.
Will I be able to walk properly again?
We just don’t know. I have been on crutches due to the inability to walk for well over 4 months already. I have been told to work on restoring length in the muscle and gradually build up my walking and just see where it takes me. but not to expect to be able to get it completely back to normal. The tell tale sign of whether the muscle is getting enough blood flow is increasing muscle pain as I continue to walk.
Will I be able to cycle again?
I just don’t know at this stage. That will depend on whether I can walk distances, and whether the muscle is getting sufficient blood flow to not cause me pain. I haven’t been able to ride my bike for many months now. I have been considering an adapted bike, and I might still, depending how this turns out.
How do I feel about this?
I’m devastated. This is likely to give me some level of permanent disability. This is also likely to lead to possibly multiple follow up surgeries, simply to prevent me from losing the leg completely.
I am finding it very very tough to deal with. There have been many tears, and likely there will still be many more tears, as I adjust to this news.
It’s the whole level of uncertainty that I’m finding hardest. Why did it happen? We don’t know. There was no signs of calcification usually associated with arterial blockages. The artery walls were inflamed, but no one knows why. It’s still a mystery what’s causing the inflammatory response. If we don’t know what causes it then we can’t prevent a recurrence, can we? Will I get enough function back to be happy with it? I just don’t know. But the fact that I’m now going to have to compromise on my expectations is very very hard to deal with indeed. This alone was something that the surgeon even found hard to say to me, because she knew that having to accept the fact that you would have a less than perfect leg was something she would even struggle to accept.
My staff have been just amazing throughout this. I am so blessed to have them.
On the day of surgery they sent these flowers to my ward, they were there when I got back from surgery.
Now starts the long road – into the unknown. I’m just blessed to have such an amazing surgeon, husband and staff team supporting me. God knows, I’m going to need more strength than I have ever needed before.
Can I do it? Most would say of course I can. At the moment, I’m just not sure though.