Wednesday, 26 August 2009

Tysabri Number 3 & Portacath.......

I couldn't believe that it was time for my Tysabri infusion again - where do the weeks go?
I had spoken to my MS nurse, a couple of weeks ago to say that I had decided I wanted a line put in, because all the trauma I have had getting a cannula fitted, was just causing too much stress. She told me that she had already got the ball rolling, so I felt better about that.
It's not just the fact that they have trouble finding my veins, it's the problem of the pain it causes, once the needle gets under my skin.
I didn't feel too bad yesterday, when we were making our way to the hospital. Luckily, Martin was able to come with me, which always makes it easier for me. He is my rock.
I hadn't slept that well, but I didn't feel too stressed because I was sure that they would sort out putting a line in so that it would make my life easier.
Am I really that naive?
We got to the hospital and they were having a particularly difficult day and we had to wait before they had space for us. It gave us all a chance to chit chat anyway!
One of the MS nurses turned up and we were having a chat to her too.
I asked whether the line situation had been sorted out. I was told that it had been but they were unsure as to whether it was really necessary!
I tried to just breathe, but I couldn't stop the tears from flowing. I felt that once again I wasn't being believed about how bad the experience really is for me. I spoke to her about it and she explained that they are worried about the risk of infection, because of having an open wound etc.
I understand that, but ultimately it comes down to quality of life, my life. I took the hard decision to go on Tysabri, with all the risks involved in that, but I now have an added stress about my veins and whether they will find them. Last month, I was already thinking about it, two weeks before the infusion was to take place. That is certainly not good for my stress levels.
Anyway, eventually, we got taken through and I was told the most experienced nurse would come and try to cannulate me. She arrived and looked at my veins, but she wasn't convinced. I put my hand in hot water for a while and then she tried.
She got the cannula in, but my God did it hurt. After about 5 minutes she had got it in properly, with me trying to breathe through the pain. It was really stinging though. It was decided that we would leave it for half an hour and see whether it would settle down. I was determined that I wanted them to try the infusion because I REALLY didn't want to go through it all again.
It is the first time that the area has hurt so badly, once the cannula has been put in.
Anyway, that was it, the cannula was in and so the infusion was put through. I had several moments where it was getting the better of me, but I wasn't going to say anything. I know this is naughty, but I really didn't need them having to redo the cannulation!
All through this, nothing was mentioned about a line being put in. I think this was because they had managed to get the cannula in, so there was no need for the line.
A nurse came up to me at one point, when she could see I was distressed. She couldn't understand why they weren't putting a portacath in. We asked her about it and apparently it is used for people who have regular infusions. She said that some people have had them in for up to ten years.
Why wasn't I having this done?
Has anyone out there ever had this done? Is anyone willing to advise me about them or share their experience on them - please leave a comment below, if you are!
Anyway, the infusion was done and finally after being at the hospital for about seven hours, we were allowed to come home!
However, I felt a bit let down, because yet again, nothing had been sorted out about a line or a portacath. So I am left, dreading my infusion in four weeks time.
I don't need this stress, so I decided to email my consultant and ask for his opinion. I will let you know if I get anywhere with it!
I have come over really tired again now, so it's back to bed for me!!

PS: We won the Ashes - yay!!!!!

PPS: Lots of wonderful photos of planes, from the Air Festival, to come!



  1. Hi Amelia,

    Sorry to hear about how painful the infusion is for you.

    Well done for being brave and getting through the ordeal.

    Hope the infusion will start to have a good result.

    Thinking about you lots, especially when the Ashes was won.

    Very exciting, really missing last weeks exciting commentaries.

    Have a good day.

  2. One heavy day!
    I read to the end but had to force myself- I can only imagine how you coped.
    My late nephew was a sick child and grew up with intrusive procedures being performed on him. By the time he was a teenager he had worked out a whole routine of tricks to get the staff back for the pain they inflicted on him. After one particularly unpleasant afternoon of "hunt the vein" he called the nurse on the emergency buton- she stood shocked to see his face, the bed everything covered in blood. He looked up with big innocent eyes and asked "Can you put the lid back on my tomato ketchup for me nurse?" No blood just a nasty boy and a bottle of sauce!
    Maybe as a grown up you would get into a bit more trouble so please do not try this yourself.
    I hope you get some help from the infusion and get over the wipe out nice and quick. You and Martin are always in our thoughts,

  3. Ah... Tysabri, the "medicine" that killed 10 people already.

  4. Have any of you heard of Emla it is a local anaesthetic cream. You apply it an hour before hand to the area to be accessed and it makes the pain non existant......