So let me take you through my infusion day.
I get up at 6am as my appointment at the hospital is 8am and bare in mind that the hospital is about thirty minutes away.
Once I get there and have booked in, I have to get my portacath accessed.
Let me explain!
My veins are not very cooperative and are difficult to find but not just that, when I need to be cannulated I find it incredibly painful having a needle put into my skin because of all the altered sensations I have.
I am not afraid of needles, when you've had as many experiences with them as I have, you learn to deal with them. It's the pain I experience that has always made things a lot harder.
My pain consultant, who recommended the lidocaine infusions, suggested that I have a portacath, also known as a TIVAD (Totally Implantable Venous Access Device), put in my chest. I can feel the port, in fact this one is only just under my skin so it's easy to feel. It doesn't hurt, actually when I'm not having it accessed I forget it is there, but by being so easy to find makes it easier for the person putting the needle in!
I had previously had one several years ago, when I was having a Disease Modifying Drug called Tysabri, but it had been taken out when I stopped that treatment.
My consultant put one back in my chest which means I have permanent access to my veins - as long as I have a nurse or doctor who knows how to access it, which hasn't always been the case.
The port definitely makes my life easier but it also helps the nurses who are trying to treat me because it's not as painful, or as hit & miss, as being cannulated.
The port in my chest is connected to the vein in my neck so that the medication can travel through my body.
So a needle is put into the port and firstly, they try to draw back blood to check they are in the correct place......unfortunately, I have had plenty of times when it hasn't drawn back and yesterday was one of those times 😔 It doesn't stop me having my infusion though.
Once accessed, the port is always flushed with saline solution and the treatment is then connected to the port.
The infusion itself takes about ninety minutes to go through, but that always goes really quickly. There are generally one or two other people having lidocaine that I can talk to or I can write posts for my blog on my phone! 👍
You are hooked up to a machine that monitors your blood pressure and heart rate every twenty to thirty minutes. When the infusion has finished the port is flushed again, just to keep it all safe. The needle is taken out and it can bleed a little bit so I always get a dressing or plaster put over it.
I'm then free to go!
The infusion itself can make me feel quite tired and generally a bit yuck, so I always give myself a couple of days just to lay low. After a few days I can usually start to feel the lidocaine kicking in and after about a week the pain is a little more manageable. The pain and altered sensations are always there but everything is easier to deal with. Personally I find that the benefits last for around six weeks, after which the pain starts increasing again and by eight weeks I am definitely ready for the infusion again. Unfortunately, at the moment, I am having the infusion every twelve weeks, which can be challenging but, luckily, I've got a good support system around me!
It is such a useful treatment, in my opinion. It helps me to live my life in a more comfortable and positive way and long may it continue! 😄
XxXxX 💕
PS Some Rosie love for you all! 😻
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