Monday, 21 September 2009
............... is the day for my fourth Tysabri infusion.
BUT before they do the infusion, I am going to be fitted with a portacath!
The normal procedure for the Tysabri, is to be cannulated and then the infusion is hooked up. The infusion normally takes about an hour and then once that has all gone through, they keep you there for an hour afterwards, to make sure there are no adverse effects. Then you can go home - where for me, I fall asleep for quite a long time!
My one concern, right from the start, has been about the cannulation. I am a nightmare to cannulate. Apparently, I have tiny veins and they are buried very deep. But it is not only the fact that they can't find my veins. Once they find them and put the needle in, I experience a huge amount of pain. My skin is incredibly sensitive but also, I suffer with painful, altered sensations as well. So putting a needle in, is just torture for me.
I have had three infusions so far. The first time, they had three attempts, which I considered a success. The second time, the nurse tried three times, then they called a doctor, who tried twice and she couldn't do it. She went off to speak to someone else, who suggested putting my hands in hot water. Apparently, this is not allowed anymore, but needs must. After the hot water, the doctor tried a couple of areas and eventually got it done. At this point, it was suggested that maybe they should consider putting a line in.
After going away and thinking about it, I decided that I would like to go for that, so I got on to my MS nurse, to try and arrange it. I went down for my third infusion, thinking they had arranged for this to be done. They had, but they weren't sure whether it was necessary! I went ahead with the cannulation, once again. They did the hot water thing and the nurse eventually found a vein to try and she managed it, but not without an enormous amount of pain to me, again. This time, the infusion was quite painful when it went through too, but I put up with it because I didn't want to be cannulated again. This made me realise that it was only going to get harder over time and my veins would eventually give up. Another nurse asked why I hadn't had a portacath put in.
So when I got home, I contacted my consultant and asked him, if it was possible for me to have this done? He said it was possible, but again questioned whether it was necessary, because of the small risk of infection when you have a portacath constantly in your body. I explained that it wasn't just because they can't find my veins, but the pain that goes with it is becoming unbearable. I want to continue with this treatment, but if I am going to do that, then I need to have this portacath. I was getting to the point, where I was getting really stressed about the cannulation a couple of weeks before it was being done and when you have an infusion every four weeks, then that is quite a lot of stress!
So it was decided that it probably was the best thing for me. My consultant asked the MS nurse to arrange this for me.
It has been arranged and I am to have the portacath fitted tomorrow!
It will be done by X-ray, but apparently I won't know anything about it - I hope that means that they will put me out!! Once the port has been fitted, then they will go ahead with the fourth infusion.
I have no idea where the port will be. I'm assuming it will be up on my chest somewhere? And of course, it will need to be looked after very well, so that I don't get any kind of infection in it.
I am glad that this has been arranged for me and it will take the stress out of the infusions for me. It will also mean that if I need steroid infusions in the future, I will be able to those without the worry of the cannulation.
But I have to admit, now that it is happening tomorrow, I am a little bit anxious - so fingers crossed for me, please!!