Tuesday, July 31, 2012

Tysabri D.Day... Mostly Uneventful!

So a couple of weeks ago, I had my first infusion of Tysabri.  The decision to swap my MS medications was made in a meeting with my neurologist that lasted perhaps 15 minutes where I was without my most trusted sidekick, otherwise known as my husband. 

I predicted the change, but I didn't predict it would happen in a matter of days.  The previous night I slept for a grand total of 3 hours... so pretty much my head was spinning wildly out of control at the news.  I had previously given blood for some research, which tested for the JC virus so this was not a hold up. I could have been admitted for the infusion within 3 days.

However as my husband, Ryan was on the other side of the country and he was none to pleased that I would one, make this decision alone and two, attend the treatment on my own, I pushed my appointment back an extra 2 days.  As there really wasn't a decision to make, no other medications were on offer and the Copaxone was not working, he didn't have any input... although believe me, we rather "passionately" discussed it over the phone.  In hindsight I am glad I waited for Ryan to hold my hand... I would have been a sniffling mess without him.  We do all of my MS stuff together.  He is my hero, voice of reason and my rock.

So what happened?  Well once we made it into the Ivy Suite, we had some paper work to fill out.  Ryan filled out all the lines I missed due to distraction.  I was given a wristband since I was being admitted for the afternoon.  I felt a bit at ends... I wasn't sick, yet I was being admitted. Given the short notice I was slotted into a time not reserved for MS patients.  Instead I was with people getting chemo.  That certainly helped to put my plight well into perspective.

Finally after sitting around for an hour, we were ushered into the ward.  I got to sit on a very comfortable chair, quite reminiscent of a dentist's chair, except much cosier and without the horror of an approaching drill!  My nurse was a lovely young blonde woman, she checked my knowledge about what was happening and I felt like I was in good hands.

Finally the time came to put in the cannula.  I got my arm out ready, no problems, as I've had a million blood tests, given blood, had babies and been jabbed with vaccinations, not to mention injected myself daily for 18 months (or about 547 times).  When my lovely nurse reached for my hand I was a bit confused, but not concerned.  Apparently they like to put the cannula in your hand because it reduces the risk of pain and damage caused my movement at the elbow.

After a hot pack was allowed to do its work on my hand.  My lovely nurse started with the cannula.  She very gently held my hand.  I looked away because I really didn't need to see her sticking me with a big pointy thing!  After about 5 minutes though, with a little bit of stinging I looked over and asked what was happening.  Apparently the veins in my hand had disappeared in fright!!  They had collapsed.  She tried another vein to no avail.

Another lovely nurse was enlisted.  On her first attempt, all looked good.  They pumped in some saline and asked if I was in any pain, because if they weren't in the vein and pumped in saline I would feel it.  I questioned them about the pain, as I have quite a high pain threshold and thought well what if the pain I could be feeling I just brushed aside as a stinging sensation that I didn't need to be concerned about.  A shaky consensus decided that the cannula was in the vein and nurse number two wandered off.  Nurse number one turned up the saline drip and pressed on my vein and then suddenly I knew what type of pain they were talking about.  Attempt 3 failed.

Nurse number one left and nurse number two returned.  Note no more "lovely", they were still very lovely, but my anxiety had risen and I was no longer really feeling the loveliness.  This time she tried my other hand... still no go.  The veins in my hand refused to play.  Was I sending them an unconscious signal to be difficult?  I'd never had any problems with drips before... and when those were done while having my babies, the nurses took much, much less care.

After a break a completely new nurse arrived.  She was Scottish, chirpy and "lovely".  She decided against using my hands, instead going half way between my wrist and elbow crease.  My nerves had begun to get the better of me... so I was expecting some pain.  She asked me to hold my arm up above my head for a minute or so and then bam the cannula was in!  No problems at all.  Thank god is all I could say... I had started to have visions of them saying, come back tomorrow or you can't have Tysabri at all because we can't get a vein.

The rest is very uneventful.  They started the Tysabri infusion and I felt.... nothing!  I sat for 2 hours laughing with my husband watching Bad Teacher on our iPad.  I had a couple of toilet stops because I had drunk a litre and a half of water in an attempt to hydrate my veins open.

When we got home, I felt tired after the experience.  Yet I felt well enough, so we went out for dinner with the kids anyway.

Over the following week, I noticed that I felt incredibly fatigued (along with some major bruising on my hands).  I am not sure if the fatigue was the work of the Tysabri or all the late nights I was having and allowing myself to be tired after a week of my husband being away.  It didn't really feel like normal tiredness, but time will tell, as there is only two more weeks until my next infusion.

So how do I feel about having this major medication infused into my body?  Well mentally pretty good considering it has killed people.  Right now physically I feel well as well.  I feel good about the fact I no longer have to inject Mr C every day, not that I had a problem with injecting myself.  I feel really great that I am on a medication that other MS-er's on a Facebook page (I Hate Multiple Sclerosis) didn't note any horrible side effect in relation to my inquiring post and that nearly all of them said they had no new lesions, some of them for years.  Which means no disease progression - hooray!  Do I dare to dream?  Soon I hope.

1 comment:

  1. Is the change so dramatic that there is no need to blog anymore??? If this is the case - Congratulations! I'm sure there are many out there, like me, that would like to keep reading about what you are doing to live with "combat" MS, or just in general the ventures you are encountering. From Canonymous.


Please leave a comment. I love to read them...