Hi everyone! I know I've been around this week, but as of now I'm properly back. Just returned from London after seeing my specialist. I can't say I've got a clean bill of health (I can dream!!!) but there's nothing more they can do as I'm in the care of the pain clinic team.
Which brings me on to the IV Infusion of lidocaine. I'm mentioning this only so that if anyone in the future has one, hopefully they can find this post. There isn't a lot of info about the treatment from the patient point of view. Certainly not the details as to what it was like. So here we go!
Friday 20th February, Infusion day (bring it on!)
4am: Nayu wakes up. Looks at clock. Groans for the want of another hour's sleep. Stays awake and tries to relax.
5.20am: 40 minutes until food ban starts. Makes and chows down on fluffy part-baked rolls (which were baked the previous day) and chocolate spread. According to all the TV ads it has some nutrition in it.
5:30am Still nomming, Nayu thinks that hopefully if she pukes later, she won't get a funny coloured (word is blanked so as not to disgust blog readers).
6.00am Nayu looks at crumbs on plate wistfully. Who knows when she'll eat again (15:00 something).
6.00 - 8.00 Nayu watches Winx to wind down. At least she thinks she watched the Winx. Bearing in mind she has issues remembering things from 5 minutes ago, last week is a blur.
8:35 Water splashes everywhere as Nayu fills up a cup, has a few last sips then puts it down. No drinking after 10:00 but by then she'll be on the train.
Journey to the pain clinic is quite entertaining. Nayu thinks family more stressed than she is. She decides that she wants family present once the infusion is all set up.
11.00ish Nayu arrives at pain clinic and waits with a book. Getting rather nervous now. Does a magical girl/super hero change of clothes to ones which are comfier. Waits. And waits.
12.00 or who knows when, Nayu gets taking the door of no return. This is it. She's a bit confused as to when parents can arrive.
From hereon in times are approximates cos Nayu didn't have access to a clock
12.10 Nayu jumps on, then jumps off scales (if only this was literal!)
12:13 Nayu nervously puts down bags under end of bed. Nurse gestures to chair, and Nayu moves bags. She grabs small Lumpy toy, & 3 books (she's optimistic about how much she will read).
12.15 Nayu is lying on the bed, head elevated a little.
12.17 Nurse hooks Nayu up to a heart monitor with 3 sticky thingies for the electrodes. Much easier than Nayu had envisaged, with the googling of that part of the procedure. Sadly Nayu can't see the screen from where she is. Nayu has it commented how fast her heart beats. 1) she's stressed 2) she's nervous 3) her heart is normally fast.
12.19 Nurse asks a few questions as Nayu's notes have been misplaced. Nayu isn't surprised. Things like that happen in hospitals.
12.21 Nayu feels like she's corpse. Not only does she have a white wristband with all her hospital details on, she also has a red wristband (which screams 'danger! I'm about to be IV'd!). Actually all it says is the name of the drug she's allergic to. Nayu smiles and thinks of the Star Gate episode when SG1 find Cassandra, and she puts a tag on herself to show she's dead, like the people she lived wiwth.
Throughout the infusion the heart monitor provides much amusement. Every now and then the machine beeps loudly. It beeped louder especially when Nayu was reading the end of Book 1 Gallagher Girls by Ally Carter - it's a good thing she didn't pick an all action thriller to read!
12.40 Time to get the needle in for the infusion. Dr takes a while looking at veins on hands and arms. Not looking good.
12.45 Dr mentions maybe trying feet - Nayu is more panicked over this and explains feet are no better. Dr does a lot of thinking and seeing if veins are coming up.
12.47 Due to numerous operations when she was younger, Nayu panics at the word 'local anesthetic'. They hurt. Dr decides to try for the area between wrist and elbow. Let's just say it hurt, for a few minutes Nayu thinks bad thoughts and wishes she could reflect the injection back on the dr. Feeling fades after it is in.
12.50 By this time there is more room in the area cos the patient in the next cubicle has left, so the mobile curtain divider thingies are moved back a bit. Nayu's Family Member comes and takes a seat. Looks around and asks if they've started yet. (Family member hungry.)
12.52 Dr comes back and looks at line. Says its no good. For a moment Nayu is thinking badder thoughts at dr for doing something that was pointless. Dr says he'll leave it to Nayu's specialist who has a bit more experience in it. (Dr is in start/middle of career. Nayu's pain specialist has been in career much longer).
12.54 Nayu's pain specialist comes over, also looks at rubbish, hiding veins. All Nayu can think is 'warm' as her hands are covered up (they are always cold). Specialist mentions they could do blah-glah. Nayu has no idea what he's said, so she asks 'What is that in English?' Nayu's family member knew as they are in the health profession. It gets explained that the blah-glah (not actual term) means needle under skin, rather than in a vein. It takes longer for the infusion to be absorbed that way, but it does work.
With worries of needle in strange places, or in her foot, Nayu is very relieved when the light bulb moment occurs. Specialist asks nursing team if Nayu's hands can be warmed up.
(At some point earlier, Dr who performed evil and pointless local anesthetic informed Nayu of what can go wrong in the procedure. Nayu is suitably freaked at the point where if she feels numb/tingly and a bit faint, if she says nothing and they carry on with the treatment, it will lead to the body shutting down, her losing consciousness, having a fit or two, and then vital organs stopping. Nayu thinks the machine beeped a bit during that speech. No surprise there!!)
Nursing team come along with a big bowl of warm water, start to balance it on Nayu's lap, then realise that might not be such a wise idea, and opt for the safer option of putting it on a chair by the bed. Nayu dangles hand in, specialist comes back for a moment then heads out. Nursing team make sure Nayu's ok. Nayu's ok - her hand is warm. Can't say the same for Lumpy who has had a paw squeezed during first attempt.
13:00 or so, Specialist comes back and checks hands. Wraps them up in blanket, shoves them under the blanket which is over Nayu (nursing team are observant when Nayu put on slipper socks, and asked if she wanted a blanket. Nayu very grateful not to be freezing cold).
13.07 Specialist comes back, is satisfied with progress in Operation Warm Up Nayu's Hands. Nayu sense Moment of Doom is nigh, and turns away. Lumpy's circulation is cut off when the needle is put in Nayu's right hand. Nayu feels a bit funny, but this doesn't last long. It lasts long enough that family member, who watched her stats, says that it went from being higher than normal (it was never 'normal' - normal doesn't come near Nayu, ever) to being dangerously low. No wonder Nayu felt odd!)
13.08 Specialist says he's commencing the infusion. Large syringe attached to tube and that's all Nayu sees. She feels nothing. Hand is all taped up so needle won't move.
From here on in every 20 mins Nayu feels like she is a cake. A beeper goes off, so nursing team can check how Nayu is doing regarding pain level (covering up the previous answer doens't work all that well, Nayu isn't even sure why they are covering it up). Unlike a cake Nayu can't eat anything, but that's ok. Outside the 20 min beeps, the nursing team periodically come up with smiling faces to see how Nayu is doing.
This is the strange part. Nayu fully expected to feel very sleepy, and maybe get tingly feeling. Nothing. It feels like she is lying down relaxing, while hooked up to nothing. This is a Good Thing since she panicked most about it.
For the next hour and a bit, Nayu reads most of Gallagher Girls book 1. Turning the page proves tricky, because the blood pressure machine attached to her left arm gets blown up every so often (its automatic), which makes it difficult to move arm. Plus Nayu thinks its best not to move it when machine trying to take a reading. This proves frustrating when each chapter ends.
Finally, after the 3rd beep or so specialist comes along and says that's it. Says that they'd have expected more of a difference in pain (it only helped a smidgeon but it might work in a few days.) Specialist explains nursing team will organise a phone review in a few weeks. Previously dr who did the Evil Local Anesthetic did explain there are lots of other infusions they can try, some of which if they work can be given as a patch/tablets.
Nursing staff say its over - whoohoo! Nayu has to stay where she is for a while, because her blood pressure was high and her heart rate is high. One nursing staff member tries to take out tube linking up to big syringe. It's pushed in too tight, so she leaves them.
14:?? Nayu wants to leave NOW. Still hooked up to everything and not allowed to move. So she reads Bunny Suicide book which is very funny.
14:?? Specialist returns (Nayu realises she's mucked up this part of the timeline) and also tries to remove connecting tube. He can't do it either. Off specialist goes, leaving Nayu wondering if she'll be attached forever. Apparently they keep the main needle thingy in just in case Nayu takes a turn for the worse and needs a line put in.
14:??? Specialist returns with A Glorious Instrument to help remove connecting tube. These are called. S.C.I.S.S.O.R.S. Quite a marvelous invention!
14.??? Nursing team say Nayu can sit up a little, and have a drink. Nayu opts for tea. Nayu thinks 'nourishment!' It's been a while. Anything is better than nothing. Dealing with nausea all morning without mints hasn't been fun. Her dream comes true when the option of 'biscuits' and 'ginger biscuits' comes up.
14.??? Nayu very happy as she drinks and noms. Family member gets given a drink too - much to their surprise. Nayu at this point would like to say that nursing team especially, & the drs & specialist have been so lovely which made all the difference when Nayu had to keep squeezing lumpy tightly.
14.?????? Nayu wants to leave NOW, but still has to wait and be patient.
Some time later....nursing team member arrives and says she wants Nayu to stand up. Nayu thinks its odd since she isn't asked to sit then stand....but sits then stands up. Nayu says she feels ok.
Family member puts letter to GP, plus explanation & consent form in Nayu's bag, and goes to give Nayu's phone details while Nayu does another Magical Girl/Super hero change of clothes.
Nayu thanks staff, and heads back to reception. Still wants to leave NOW. Has to wait for telephone review date to be confirmed. Time is a bit of an issue. Nayu is baffled why the appointment card is bright red. Red is not a colour which Nayu finds easy to read. It's printed in black, but still not the best. Oh well. Nayu negotiates a later time so she will be home from work. Review scheduled 14th June.
Nayu leaves with family. Goes home. Sadly pain jumps back up to normal level that night. It doesn't go down in the following days. IV infusion not a success.
Random thing: Nayu notices woman on way home wearing spotty dress and spotty socks in funky sandals.
For the next few days Nayu is constantly asked if she feels any different. Nayu loves her family very much, but it was a bit annoying especially when there was no change. Nayu was a bit deflated. She knew it was an experiment, and that there are more treatments they can try, but she'd been hoping for 3 months it might just work.
Nayu then was very good, spent her week reading books all day long, and watching Winx.
Now that I know the procedure, I won't be so nervous if I need more infusions. I'm hoping that it won't take too many more attempts to find a drug that works. Unfortunately my conditon is rare, so I'm not overly hopeful on that. I'm back at work on 31st May, so will be reading books and watching dvds until then. Monday I'm allowing myself to sort a few bits on the computer, just so I do 'something' before work on Tues. I needed the time off, and its been good.
As soon as I hit 31st, it'll be back to editing (yay!), work (yay - I genuinely like it) and life is normal, until June 14th. Who knows what happens next!!!!
I'd like to say thank you to everyone's support - it means a lot, and its nice that so many of you care.