Tag: infusion

#3

I’m a PRO at these infusions now.  #3 was last week Friday – everything went well; no worries, stress nothing.  I fell asleep while it was doing its thing and I even went out later that nite!  Of course, the head nurse (i’m a problem child, so she is the only one who takes care of me) still hasn’t figured my veins out…but this time i only had to get stuck twice as opposed to 3x the last time.  It’s amazing the places that they go into as well – i woulda never thought that i would actually entertain using the bony side of my wrist!

I still can’t say if the medication is working or even doing anything…but the good news is that nothing is getting worse and nothing new is happening.  I also confirmed without a doubt on this last visit that i am anaemic.  I would love to know how that happened all of a sudden and i can’t blame the Tysabri because my iron started getting low before i started on it.  I haven’t experienced any of the classic reasons for iron deficiency – major blood loss being the most significant – and there really isn’t any explanation for it, but hey!  i’m dealing with it and it’s not such a major issue to lose any sleep over.

Things Went Well

Everything went well on Friday; nothing to report except that apparently i really do have tiny, rolling veins.  STEUPS!!  This time, I was stuck twice, in 2 different places, and then stuck AGAIN because they couldn’t get blood from that vein…go figure!  I was able to enjoy the weekend altho it started off shaky with that ass raping that Germany gave Argentina in the World Cup match on Saturday morning. 

I’ve never seen another MS patient suffering like me with walking troubles.  Any time i go to see my doctor at the MS Center, other patients are either walking normally or at the other extreme and are in a chair/using a walker etc.  I’ve never actually seen someone walking slow or dragging their feet or anything like i do – until last week Friday.  The chick was much worse than I ever was; it appeared that her legs were totally stiff and unbendable.  She didn’t use any walking aide as far as i can tell, but when she was leaving the infusion room for good, she held on to someone to leave.  I AM LUCKY!  I don’t think i can say it enough…I can’t imagine what she must go thru regularly – of course, i don’t know if she walks like that all the time or if she was having a bad day – but imagine walking (or trying to at least) and ur legs just don’t corporate with u and ur knees refuse to bend!  WTF???

I’ve said it before, I’ll say it again, MS really is a shitty ass disease!

Infusion #2

Geez!  Has it been 4 weeks already? 

The 2nd infusion is tomorrow.  I think i will have to ask for someone other than the chick from last time because I cannot live thru another “catch me if u can vein” incident.  While i didn’t have any side effects to the medication, I really couldn’t do much that weekend because of reverting to how i was before even taking the Ampyra.  That has since gotten better…but this weekend G2 and clan will be here and it will NOT be acceptable if i can’t do much, esp since it’s July 4th and there’s a shitload of limin to do.

Infusion #1

it went well!  No horrible side effects, no horror stories – NOTHING!  whew!!  Actually, the infusion itself was supposed to take an hour…I, of course, was done in half hour but they assured me that wasn’t anything to worry about.  They still kept me for observation afterward and I was a little woozy at the end but it was because i had taken 2 Tylenol PM Xtra Strenght before the procedure.

so I’ve mentioned before that i donate blood regularly and I’ve also mentioned how much I hate needles.  Everytime blood is taken from me, for whatever reason, i tell the nurse/attendant/whatever that they have ONE shot and that’s it; no do-overs, 2nd chances NOTHING! and no-one ever has a problem….i’ve heard some horror stories about rolling veins and shit…so on Friday, the chick tells me that they are going to take blood and then set up the IV blah blah blah…I say okay and nothing else, she was a bit of a talker so i didn’t want to encourage her; let’s just get this shit started already!  She put on the torniquet, started tapping the vein and feeling around for it, stuck the needle in and NOTHING!  WTF??!?!?  the vein, as she put it, kept running away from her…eh???  really???  and she started poking around, “trying to catch it”…i couldnt believe it…i should have threatened her like everyone else!!!  eventually, she had to ask someone else to do it because she never “caught” it…by this time, i’m thinking i CANNOT do this again, so this one better get it right – she did and we started the process…

My Arm w/all the IV Tubing
I stayed in for the most part this weekend but I have noticed that either my body is trying to get used to this additional medication or something, but it almost seems as if the Tysabri is now negating what the Ampyra was doing.  I’m not dragging my feet but somehow i can’t stay on my feet as long anymore.  UGH!  i called my doctor’s office to talk about that and left a message..so more to come

Happy Times!

Had dinner with my fellow MSers last nite.  we had a really great time and it was good catching up with them – i haven’t seen then since the end of the seminar.  We exchanged war stories of the past few months, laughed, they commented on my walking and just had an overall good time.  I’ve said it before and I’ll say it again, my friends and family are the best at supporting me and making adjustments etc, based on my needs but there is nothing like talking to and swapping stories with other MS “sufferers”.

Anyhoo…tomorrow is my 1st Tysabri infusion; I have to admit that I am extremely excited.  I am hopeful and staying very positive about what this treatment can do for me. 

  • The risk of the brain infection is in the back of my mind, but way way back; I’m not going to lose sleep over it.

I’m already enjoying NOT sticking myself everyday…in fact i was supposed to be off of it for 2 weeks prior to the infusion, but i stopped it about 3/4 weeks ago :-).  I go in at 1:00 tomorrow afternoon and will be there for 3 hrs (pre-infusion work/infusion/monitoring) – honestly, i can think of a few better things to do for 3 hrs on a Friday afternoon – but hey!  I chose a Friday afternoon so that I have the weekend to recuperate if necessary.

Wish me luck (from across the miles, oceans, continents etc)!!!

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