One Year On SCIg

As my one year anniversary on SCIg approaches, I thought it would be appropriate for me to do a post about what life has been like these past 12 months, and how doing my own subcutaneous immunoglobulin infusions (which is what SCIg stands for) at home has impacted my life.

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You may remember that prior to SCIg I was on regular IVIg, which I had in hospital once every four weeks, and was truly amazing and improved my life in so many ways.  But you may also remember some of the pitfalls- having to spend one day every month in hospital, having nurses and doctors digging around for a decent vein, bruised arms, headaches afterwards unless I’d managed to drink the required 2 litres of water during the infusion, and of course the inevitable dip in my mobility and increase in symptoms in the last few days of each month before my next infusion was due.

Well…with SCIg, there is none of that!  It’s been fantastic.  I used to have 80g of Privigen every four weeks, so initially I was started on 80g of Hizentra (the subcut version of Privigen) across the month which I have been doing as two infusions a week (i.e. 10g twice a week over a month= 80g).  However in December I had a massive increase in symptoms, and although it could have been coincidence (fostering-related stress, being run down and having a cold virus etc) I was really worried that I was relapsing.  So my lovely neuro specialist nurse increased my dose to 12g twice a week, which I know doesn’t sound like much of an increase but that equals 96g of immunoglobulins across the month, which is an extra 16g on top of what I was getting before, and already just two months in to the new prescription I am seeing results from that- with an increase in energy and a reduction in nerve pain, tremors and jerks (all good things!)

There are downsides of course, like there are with everything.  Instead of someone else jabbing a needle in my arm or hand once a month, I am stabbing  four tiny needles into my belly with every infusion- so stabbing myself 32 times a month.  But there are people on insulin and other medications jabbing needles into themselves every day, so I try to keep it in perspective.  Also, being the one in control of when the needle hits, and having an abundance of flesh to choose from (haha…boohoo) is preferable to someone else rooting around in the crook of my elbow for a viable vein.

We’ve had to find ways to store my medication and all the associated STUFF that comes with it (and there’s quite a lot).

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I get a delivery once every 12 weeks and it takes me maybe an hour to unpack and check that and put it all away, making sure to rotate the remaining stock so that I don’t end up with out of date human immunoglobulins stuffed at the back of a drawer.  I had some issues in the summer with not being able to keep the room cool enough (Hizentra needs to be stored at room temperature) but a fridge thermometer and a fan have helped, along with moving the drawers that my medication is house in, into a shadier area (as in out of the sun, not further along the A6).

Some nights when I realise I need to do my infusion, which takes about two hours from start to finish, I just feel like I would rather do anything else on earth.  That proper petulant child part of myself that I rarely allow to the surface comes stomping out, and I just want to fling myself on the sofa and say I CAN’T BE BOTHERED and possibly even whine WHY ME?  But I always shake myself mentally and remind myself that back in the early days of my diagnosis, this is what I dreamed of.  Seriously, to be almost symptom-free most days and doing my own treatment in my own home at a time that suits me (usually in the evening, watching TV in bed) that seemed like a FANTASY.  Now it’s my reality, and it’s easy to slip into taking that for granted and seeing only the negatives (it stings, it’s time consuming, I would rather be doing x, y, z etc) rather than the positives (it works, it has almost no negative side effects and it’s goddam FREE on the NHS).

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So overall- my first year on SCIg?  It has been life-changing, and I say that without hyperbole (for a change).  I feel so lucky.  And no, I don’t always manage to hold that feeling, when one of my infusion sites blows and I have what is essentially a mix of thousands of other people’s sticky immunoglobulins seeping out of my belly and all over my clothes and/or bed sheets then yes I think “FML” because I’m only human.  But the majority of the time, I feel incredibly blessed and grateful because I know how fortunate I am to have this treatment freely available and that it works so well.  So well that there will probably even be people reading this who had no idea I even need it 😉

So here’s to a year of FREEDOM, and if not good health then at least well-managed illness, and may there be many more!*

(*Providing the tories don’t dismantle the NHS that is…but that is a separate blog post ENTIRELY)

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The Trial

Back in August when I wrote “One Year On”– a blog post marking the 12 months since my first hospital admission for (what we now know to be) CIDP, I mentioned a clinical trial I was possibly going on.

Back then, it was just a pie-in-the-sky “this maybe might happen at some point” kinda thing, but last week I finally got The Call from a research nurse, to let me know that they were now recruiting patients and to ask if I was still interested (the answer to that being a definite YES!)

See, the trial is to see if CIDP can be successfully treated with subcutaneous immunoglobulins (SCIG) at home, rather than intravenous immunoglobulins (IVIG) at hospital.  The idea of being able to administer my own medication in my own home sounds so good that ever since my consultant mentioned the possibility last summer I’ve been dreaming of the day when it could be a reality.  So when the research nurse asked if she could send me some more information about the trial itself, I was delighted.

Unfortunately, that was where my elation ended.  As when the information itself arrived, my happy-feelings quickly went away.  The trial itself is lengthly, in fact it’s really of an undetermined length as there are three phases and the first two are entirely dependant on you as a participant, or rather- your body/condition.  The final stage being a set 3 months.

There’s a lot to it (obviously, as it’s a clinical trial!) but I’ll try breaking it down very simply.  Basically first up, they need to be sure you are actually reliant on immunoglobulins as a form of treatment, so they take you off them (eeeeeeeeeeeeeeek!) and then when it turns out that you really do need it, they re-stabilise you, but rather than with your usual product/dose/infusion, it’s with the SCIG, and then, when you’re stabilised (however long that takes) they assign you to one of three groups, either low dose SCIG, high dose SCIG, or a placebo (eeeeeeeeeeeek!) and then after three months it’s game over and you’re back on your usual IVIG in the hospital.

Now some of that, I already knew.  My consultant had pre-warned me that they would need to be certain the participants actually NEEDED the immunoglobulins, so I figured there’d be a period where I’d be required to go without, and I also knew that I’d need to have some of my investigations repeated, like the electric shock torture, I mean, err…Nerve Conduction Testing…so some of it wasn’t a surprise, but a lot of it was, and not in a good way.  There was a lot to read through, and it laid it all out bare how many extra hospital visits it would require and how much upheaval and disruption it would potentially cause, and by the end of my first read through I was already thinking:

NOPE.

I feel so guilty in a way as I think it’s a fantastic study, and the results could have amazing implications for the future treatment of others with my condition, but I just can’t justify turning my life (and the lives of Chris, and the boys, and potentially a foster child!) upside down to take part in something with so much uncertainty when it’s going to have such a big impact.

So I went to see my neuro specialist nurse yesterday as I had a routine review appointment with her anyway, and the research nurse was with her, and I was just very honest with both of them about how despite my initial enthusiasm, I’d changed my mind, and they were both very understanding and generally lovely and made sure I knew that I was under absolutely no pressure whatsoever to take part.

My actual review went well- my scores are higher than they were in the summer, which is apparently unusual as generally us CIDP sufferers are worse in the winter (I do find I have more nerve pain and tremors, at the minute but I’m nowhere near as lethargic as I was in the hot weather, so…?) and then the topic turned to my treatment and what to do moving forward.  I still get a dip at the end of each month, it’s not as bad as it used to be, but there are still those last few days before my next infusion where I’m a bit shaky, a bit weak, generally lethargic, and well…a bit naff all round.  So the question was- can my dose be increased?  The answer being yeeees, but a tentative yes, because I’m already on 80g of privigen, so the next logical step would be 90g or even 100g, but those kinds of doses can’t be given over one day, so I’d be back to where I was at the start of last year when I had to spend two consecutive days each month at the hospital (not ideal, obviously).

In the end, my lovely specialist nurse called in my equally lovely consultant who’s answer was: “SCIG”

Which, I’ve got to say, confused us all, as the three of us all assumed he was talking about the trial.

“No, I mean, just SCIG”  he said.

Turns out, aside from the trial, a small number of patients are being started on SCIG at home already, as the small amount of research there is (mainly from other countries at this stage) is showing- it works, and is better for everyone involved.  So he wanted to know- did I still fancy it?  Without all the hoops of the trial to jump through, just- get trained up, and get going with it, doing it myself at home?  Errr….YES!!!!!!!!!!!!!!!

So that’s what’s going to happen.  I don’t know when yet, but I do know it will likely be quite soon, which is super exciting.

I know I’ve said this before, both here on the blog, and over on facebook, and probably on twitter, and definitely in real life too, but I’ve got to say it again: I really am SO lucky, to have been diagnosed so quickly, to have found a treatment that works so well for me, and to have such a fantastic team of professionals taking care of me.  It’s days like yesterday that really hammer that home for me- I go into an appointment feeling anxious, and come out feeling reassured and really positive about the future.

 

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(That’s me having my infusion 2 weeks ago, it was about 3 hours late due to the ward being busy- something that won’t be a problem when I’m doing it myself- yay!!)

One year on

A year ago today, I was admitted to hospital.  I had been trying, and failing to ignore the fact that there was something seriously wrong with me, but finally my body decided to force my hand so to speak, and I lost the use of the lower half of my left leg quite suddenly.

I cried when I was admitted, partly because I’d been awake for about 36 hours, and partly because I was terrified.  I knew I didn’t have a trapped nerve in my back, but that was what I’d been hoping the Drs examining me would say: “Oh, this is just a trapped nerve, we can just ping that back there and, off you go…good as new!”  I’m not stupid, but you’d be surprised at how powerful denial can be.  I’d been experiencing neurological symptoms, like phantom sensations, and twitching and tremors for over 4 months by this point, so on some level I knew I was going to be admitted and my symptoms investigated, I just really really didn’t want it to be true.

The answers didn’t come quickly.  I blogged about that first hospital experience here and here and here.  I did eventually leave a week later with a diagnosis of Guillain-Barre Syndrome, but within weeks I was back in hospital.  I wrote about my experiences during that stay in a series of blog posts: The Fall, The Plan, The ShocksThe Stairs, and The Blow, as well as Funny Hospital Moments.

Of course later my diagnosis was changed to one of CIDP.  Almost exactly the same thing, but instead of being an acute (one-off) episode, it meant I was stuck with it forever.

12 whole months have passed since that first night on the acute medical ward at Manchester Royal Infirmary so I thought it might be a good time to talk about how CIDP has changed my life (or not, as the case may be).

 Life with CIDP

I have symptoms every day.  I usually wake up with nerve pain in some part of my body, most often my arms or legs along with a kind of aching and stiffness in my legs, as though I’ve done a really long walk the day before (usually I haven’t, but if I have, then the feeling is about a million x worse, obviously!)  During the day I manage to do pretty much all the same stuff I’ve always done, it’s just that some stuff is harder, or takes more effort than it used to.  Fastening buttons and shoe laces is a bit of a nightmare as fine motor stuff (especially if it’s repetitive) causes tremors in my hands, along with a pins and needles type sensation in my hands and fingers.  I’ve come to terms with the fact that I’m never going to be a knitter 😉

I also get random short-sharp pains, which can occur in any part of my body at any time.  They only ever last a couple of seconds absolute maximum, but sometimes come in clusters.  This is where the damage to my nerves is preventing electrical signals from passing through, and the sensation genuinely is a lot like being given a small electric shock out of the blue.  They’re often in my arms and legs but I also get them in my body.  I also get muscle spasms and twitching, (the technical term being myoclonic jerks, or seizures).  These are one of my more visible symptoms, you can see the muscles in the tops of my arms or in my calves visibly twitching, and I have particularly bad nerve damage in my feet, so that my 2nd to big toe can often be seen twitching away to itself.  Psychologically this is one of the harder things to live with, which may sound ridiculous but I challenge you to fall asleep, no matter how bloody exhausted you are (and I often am) when one of your toes thinks it’s performing in River Dance.  Go on, try it, and I dare you to tell me it isn’t the most infuriating thing you’ve ever experienced in your life!

Another daily feature is fatigue.  If you haven’t heard of Spoon Theory, then please go read about it right now, not only will it save me explaining the energy involved in normal day-to-day activities with CIDP but it gives an insight into what it is like for everyone with almost every chronic health condition I can think of.

For the most part those are the only difficulties I have in terms of daily life.  Providing I have had my IV Immunoglobulins within the last 21 days or so.  I have them every 28 days, so you can see that there is a gap, where the effects of the IVIG are wearing off, but I don’t get topped up right away.  It used to be the case that the final week before my next treatment was pretty much a write-off, but it’s improved quite a bit in the last few months and I only really notice myself deteriorating in the final 4 or 5 days before my next appointment.  That’s when the biggest component of CIDP, muscle weakness presents itself, and when in the past I would have to resort to using a crutch to walk.  Thankfully I’ve improved, and haven’t needed to use my crutch since February, which is amazing, but I do still struggle.  The stairs are one of the biggest challenges.  I can still manage them, they’re just tricky, and I become unable to carry anything up or down them as I need my hands free to use the banister/wall to help myself up or guide myself down.  I can’t lift the kids, or anything else heavy or bulky.  I can’t open bottles, packets or cans.  I struggle to get up from sitting in a low chair, or from kneeling or squatting.  I become ridiculously clumsy (yes, even more so than usual) and my tiredness levels reach ZOMBIE status.

Then 28 days after my last dose I go back to the hospital for another 80g of Privigen.  The day after IVIG I’m usually pretty groggy and at my worst in terms of symptoms but then within 24 hours of my infusion finishing it kicks in and I’m back to my baseline.

 

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I saw my consultant last month and he’s pleased with how things are going and offered me the chance to be considered for a clinical trial where I’d be able to self-administer my own IVIG subcutaneously at home on a weekly basis.  There wouldn’t be much difference except for the freedom of being able to have my infusions at home, at a time that suited me, and it would remove the day I need to spend in hospital every month.  Plus my veins are tricksy, so it would mean I could avoid having health professionals digging away at them trying to find a good one.  (Subcutaneous administration is where a very fine needle is inserted under the skin, rather than into a vein).  There is a loooong waiting list for the trial though, and strict criteria, so it’s not a guarantee, but then nothing is when you’re living with a long term medical condition, especially one so rare and not well understood.

In terms of things I can do to help myself, it’s really the things we should ALL be doing to give our bodies a fighting chance at dealing with anything that it’s battling.  That is- to put more or less the right stuff in, and treat it with a bit of respect.  So I’m talking good food, regular exercise, plenty of sleep and zero stress.  You know, nothing too difficult to get right 😉  Other than that, I just need to be careful to avoid people with infections and viruses because of having a lowered immune system 75% of the time.  So, again- not too tricky!

There is a chance I could go into remission spontaneously, it’s not unheard of but it’s not too common either.  Most of the success for long term remission has come from the use of pulsed steroids over a long period of time, and my trial of pulsed dexamethasone over the christmas/new year period last year has convinced me that if several months of steroids are what it takes to go into remission, I’d rather live with CIDP.  And I’m sorry if that sounds overly melodramatic, but it’s true.

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Never have I felt so ill, so depressed, and so disabled as those weeks I spent scoffing steroids and feeling like I was turning into a stranger, both in body and mind.  And it didn’t even work anyway.  Although, arguably I didn’t give it a decent chance.  But see above re: Worst Time Ever.

So, that’s really it, for me.  That’s how life with CIDP looks for me at the minute.  Lots of twitching and trembling, with a bit of nerve pain and muscle weakness thrown in for good measure.

Except of course, that isn’t it at all is it?  The effects of CIDP aren’t just the physical symptoms I live with but the overall impact it’s had on my life.   One year ago was the last shift I worked as a nurse.  The night before my admission to hospital I was actually at work, terrified to call in sick because of my less-than-desirable sickness record, I’d gone in despite the fact that I couldn’t open medicine bottles, or tear open packs of IV fluids, or write my notes without my hands beginning to shake uncontrollably, or connect a syringe to an IV line without assistance.  Basically I shouldn’t have been there, and when I drove home and realised I could barely push my foot down on the clutch, and needed 2 hands to change gears because the effort was too much for one, then and only then did I realise just how badly wrong things were and how lucky I was not to have had an accident or made a mistake as a result of it.

So, after being off long-term sick, I handed in my notice in June and I’m not planning to go back to nursing, for the foreseeable (or even distant, if we’re honest) future.

Would I have left nursing if I hadn’t acquired and been diagnosed with CIDP?  Maybe…probably, at some point.  But it definitely accelerated the decision considerably.  I have almost finished writing my first book.  Would I have done that without having CIDP?  Yes, without a doubt.  But again, the CIDP experience has definitely been like a jolt of electricity (pun very much intended) forcing me to put into action NOW things that I’ve been planning to do for ages.  The same goes for my doula training, and looking into fostering too.  And even silly stuff like getting my nose pierced, after wanting it done for about three trillion millenia (ok, since I was 12).  I am so over “Maybe…tomorrow…” and totally into “NOW, NOW NOWWWWWW!”  which isn’t always a good thing actually, just ask Chris who has to live with me and my impulsivity every day.

There are negative aspects to that too though, being aware of your own fragility and mortality isn’t always helpful.   Because I ignored my body’s signals for so long last year, I am now over-alert, so a pimple is a life threatening rash, and a headache is surely a fatal tumour.  It’s ironic really, that I managed months of “la la la” metaphorical sticking my fingers in my ears when there really was something very wrong, but now I over-react to every tiny thing.

I can’t decide if the experience of suddenly losing control of my own body and being diagnosed with CIDP has fundamentally changed me as a person OR if actually this is who I always was, and it has just been a catalyst for allowing my real self to come to the surface.  Either way there’s no denying that the reach of CIDP has gone beyond “Oh, I sometimes have mobility issues and shaky hands” to something much much bigger, that is harder to explain.

Tonight I’m just glad to be where I am, at home with my boys, with a diagnosis and a management plan. My heart goes out to all those battling chronic illness without a clear idea of what it is they’re actually fighting, because for me, as much as people expected me to be upset when I was told I had CIDP, the relief of knowing what was happening to me stripped away so much of the fear and worry, it was almost a relief in some ways to just have a name for it and an idea of what might help.

I should be honest here and say that when I first became ill and googled my symptoms (don’t EVER do that, by the way!  Trust me!)  the first few hits were MS, MND/ALS, Parkinsons, and further down the page Guillain-Barre.  One of the junior doctors who examined me during my second hospital admission suggested a brain tumour as a possibility (in a very positive way, I might add “Maybe you just have a brain tumour and we can get in there and cut it right out!  Better that than GBS, I wouldn’t wish that on anybody!”.  No, I am not making this shit up)

So I don’t want to celebrate not having those conditions, because how vulgar is that?  Nor do I particularly want to celebrate what has happened over the last year BUT I do want to acknowledge it and this (incredibly long) blog post is my way of doing that…along with a teensy glass of rum and coke of course 😉

 

The Fault in Our Stars

So Saturday was a sliding doors experience, but not in the way I’d envisaged.
Instead I found myself taking the boys to their usual Saturday morning swimming lesson, and chatting to another Mum there about school, and moving into the next stage of our parenting journeys (her youngest is Toby’s age, so she’s a little ahead of me).  Something that I know wouldn’t have happened if I’d had a newborn baby in a sling.

Then at lunch time I dropped Chris at work, and on my way back home had an even bigger sliding doors moment, when I stopped at a red light at a pedestrian crossing and saw one a guy I recognised from The Infusion Bay (where I have my IVIg).  I sat opposite him at my last treatment.  He crossed in front of my car- in his electric wheelchair, while I waited, behind the wheel of my car, with full use of my limbs.
I got home and the boys started to play this really involved game of make believe that mostly involved spreading their toys across the entire living room floor to make “the sea” (also making it pretty much impossible to cross the room without potentially breaking a bone) so I picked up one of my library books…
Don’t worry, I’m not going to give away any spoilers.  But I’m not kidding when I say, that aside from breaking to feed/water/clean my children and tuck them into their beds, I could not tear my eyes away from the pages of this thing until I finished it that evening.  I laughed, and cried and would probably have turned back to the first page and read it right through immediately after finishing had I not vowed to return it to the library because someone else had reserved it.
A book about cancer, when you have just lost someone to cancer, and have other people you love battling cancer, may not sound like an ideal read, but this book is different.  It’s not even a book about cancer.  It’s a book about people, and they just so happen to have cancer.  And that is what makes it different.  It is also what gave me my biggest ‘sliding doors’ moment of the day.
I wasn’t sure how I felt about the outcome of my molar pregnancy, or it’s due date, right up until I felt it on Saturday and here it is…an emotion you’d probably never expect to hear in relation to miscarriage: relieved.
Molar pregnancy is a form of gestational trophoblastic tumour, you don’t need to understand the first two words to appreciate the impact of the last one.
The letter I received in November, informing me of my histology results told me there was a 1 in 10 chance that remaining tissue in my uterus would become cancerous and potentially spread to other parts of my body, requiring chemotherapy.  1 in 10 is of course still 9 in 10 it wouldn’t, and that’s what I kept telling myself.  But that same day I took a photo of my hair, my ridiculously unruly, curly-but-not-in-a-good-way hair that I normally hate, just in case I was about to lose it.
But I didn’t, did I?  There was no remaining tissue, my HCG levels fell steadily, I didn’t need any follow up treatment, my hair remains long and a source of constant annoyance.
I’ve always known how lucky that makes me, but on Saturday, after reading The Fault in our Stars, I actually really felt it.
There are a lot of brilliant quotes I could take from that book, but “The world is not a wish-granting factory” has to be my absolute favourite.  I am thinking of getting it tattooed somewhere on myself as a reminder, so that when I  start to feel like “It’s not fair” I can look at it and tell myself to STFU.
Life owes us nothing.  We owe it to ourselves to make the most of the life we get. (My words, not John Green’s!)

Free Day

As I live blogged from the hospital yesterday, this month, for the first time, one of the Neuro Specialist Nurses decided I could attempt to have the full 80g of Privigen I would usually have over 2 days, over just one day instead.
 
I was excited but terrified at the prospect, as having experienced some of the negative side effects of treatment after my IVIG in November, I was not relishing the idea of spending 48 hours lying in the dark cuddling a vomit bowl.  Thankfully, I tolerated the increased infusion rate really well. (And when I say increased infusion rate, I really mean it! Starting at 100mls/hr instead of 21mls/hr and finishing up at 300mls/hr rather than 150mls/hr!)
 
So rather than spending all day yesterday, and all day today at Salford Royal, hooked up to an IV, I was done by 3pm yesterday and didn’t need to go back at all today.
 
It was so strange coming home without my cannula, and not needing to get up and go anywhere first thing this morning.  Strange but brilliant.
 
I had a bit of a lie-in, not getting out of bed until 10am! Then we had a cooked breakfast, which is a rare treat, playtime with the rabbits,  and then this afternoon I got to break in my new shoes when we had a leisurely (leisurely being the operative word there) stroll to the park.

 

 

 

The boys took their bikes, with mixed success.  Toby is getting pretty fast and daring on his, whereas Rudy is still a bit unsure, and after taking a tumble on the bike path he was all the more anxious for the rest of the trip, periodically screaming, and yelling “IT WOBBLING!”

 

 

 

By the time we made it to the playground the sun had really come out, and some lads playing football on the courts had some reggae playing and as I sat, with my ginormous hips wedged into a swing, which creaked rather ominously under my weight, and watched Chris and the boys running, spinning, climbing and swinging I felt so thankful for this unexpected free day.

 

 

 

The really great news is that in theory I will now be able to have my IVIG over just one day every time, so there will be many more ‘Free Days’ in the future, although since I know about them already I don’t think it will be quite the same as the feeling I had today…of relishing a day with my family that I didn’t know I would have.

 

 

The Infusion Bay

It seems to be a universal law that as soon as you find yourself ‘comfortable’ with a situation, that situation will change.

When it comes to regular IVIG therapy, perhaps ‘comfortable’ is not the right choice of word but it’s fair to say that 4 months after being diagnosed with CIDP and 3 treatments in to my regular IVIG routine I felt like I had the situation all figured out in my head…

Chris requests the Monday and Tuesday off work.

I pack a little bag of stuffs to keep myself entertained.

I endure the horrors of rush hour traffic to arrive at Salford Royal for 9.30am.

I’m shown to a bed (which I never actually lie on).

I’m cannulated and I spend the day hooked up to an IV.

I have my arm bandaged up to protect my cannula.

I battle my way through rush hour again to get home in time for tea and to put the boys to bed.

And then it’s just a case of rinse and repeat the following day (but without needing to be cannulated obviously).

So of course when I turned up this morning, bright and breezy despite the pins and needles and tremors, with my bottle of water and library book…instead of being shown to “my bed” I was instead told to “take a seat in the waiting area”.

Well now, this is different, I thought, still smiling.

I was then told that there were no beds and I was one of several people waiting for one.

At this point, I must confess my smile was faltering as I tried to quell the rising panic. You see, something you may not know about me, is that I am a drug addict.

Yes indeedy. I’m all sweetness and light until I can’t get my ‘fix’ and then I’m all tears and tantrums (internal- I have yet to smash up an NHS waiting room. Frankly, by the time my IVIG is due, I don’t have the energy!)

Clearly I am physically dependent on the immunoglobulins. Not chemically, and I certainly don’t get withdrawal symptoms, but without it I’d be in a mess. In addition however, I have also become mentally dependent on it. The idea of life without it is so terrifying, that I can’t help but be.  Knowing that my treatment is booked in and coming up is such a relief. It makes the final week of my month, when my symptoms increase and start interfering with my day-to-day life bearable, knowing that my boost, and ‘normality’ is just around the corner.

So there I was. Serene on the outside but on the verge of freaking out internally. I decided the best course of action was distraction, so I struck up a conversation with a fellow patient also waiting.

By coincidence, his story matched mine almost exactly…well…I say almost exactly. He had at least 25 years and about 100lbs on me, plus he’d had some heart surgery to boot. But his CIDP journey was very similar, initially having been diagnosed with GBS as I was.

We were still chatting when my name was called, only instead of being admitted to the ward I was shown to the Chair Bay.

You can probably guess what that is from it’s title. Yes, it’s a room full of chairs. I’d heard about this place but never seen it for myself.

Its actual title is “Infusion Bay” as it’s strictly for patients who are in for infusions (whereas the ward is a mixture of people needing infusions, biopsies, and a variety of neurological investigations) and it operates to a pretty tight schedule so in theory you sit down, get your IV infusion and then get out of there.

I am still a relative newbie to this whole business (not that I feel it, but today I sat next to a guy who has been coming here for treatment for over 3 years, so that gave me some perspective) and therefore my infusion rate has been pretty slow up to now, meaning I am not an ideal candidate for The Bay.

But since there was no bed for me I was MORE than happy to be a Chair Hog for a couple of days.

I was then visited by one of the neuro specialist nurses who was reviewing my treatment regime, and wanted to know why the hell (my words, not hers) my rate hadn’t increased beyond 150mls/hr when my maximum safe infusion rate is over twice that. The answer is partly due to individual nurses being over-cautious and partly due to staffing, as often a nurse will say “I’ll be back in half an hour to increase the rate” and I don’t see her until 2 hours later. It’s no biggie as far as I’m concerned. Regardless of how slow or fast it drips through I get the same amount and it has the same effect, so if I’m stuck in hospital all day for 2 days out of the month then so be it.

I must admit it would be nice to spend less time hooked up though and it was always my consultant’s plan that I eventually have the full 80g in one day. So when she suggested we give it a whirl today, since I’m in The Bay anyway, I thought “Why not?!”

So here I am. My second bottle of Privigen is currently being pumped into a vein in my right wrist at a rate of 200 mls/hr and I have 2 more lined up ready and waiting.

The side effects of an increased infusion rate can be high blood pressure, headaches and flu like symptoms, some of which can be combated by keeping well hydrated (hence me currently drinking water like it’s going out of fashion.)

It would be great if I could have the full 80g in one day but if I can’t, well then just knowing I will get it at all, is enough for the addict in me.

Happy Monday!

Some days I feel like I’m in my own twisted version of The Truman Show. You know, where everything you touch turns to shit and you can’t help but wonder if there’s some underlying conspiracy to drive you to the brink of insanity?
Today is not one of those days. Today is the opposite of one of those days.
First up, Chris went for his first ever driving lesson. That probably sounds like no big deal. Except that it’s a huge super massive deal.
When we discovered I was pregnant with Toby (on the 13th March 2009) I told him “You need to learn to drive before this baby is born!” and again when I found out I was pregnant with Rudy on the 12th February 2011, I said the same thing. Those embryos are now 4 and 2 years old respectively and until this morning Chris had yet to actually get behind the wheel!
After his lesson (which was apparently a great success, and certainly the Audi appeared intact on his return) I had to get bloods done as part of my molar pregnancy follow up. I figured it was going to be a huge pain in the arse as the specialist centre I’m under send all the specimen bottles and request forms etc direct to me and if there’s one thing us HCP’s hate, it’s patients’ who have more of a clue what’s going on than we do 😉 But in fact I got called through right on time, presented my blood bottle and paperwork and it was done and dusted within a couple of minutes. In fact, because I am driving again these days, the whole experience from leaving my house to walking back through the front door took exactly 20 minutes. There was even a parking space in the GP surgery car park! There is never a parking space in the GP surgery car park! (That was my first clue toward the reverse Truman show effect).
Then our lovely friends Emma and Ben came to collect the boys to take them on an exciting trip to the Sealife Centre and for a sleepover! Faced with the prospect of 24 hours child free in which to do whatever we pleased (so…that’ll be 24 hours of uninterrupted sleep then 😉 ) whilst our boys had a whale of a time (excuse the pun!) I really didn’t see how the day could get much better.
Then a letter from my consultant dropped through the letterbox.
It begins:
Well that got my attention. This guy could definitely write novels, he’s certainly got that “hook them from the first line then reel them in” quality.
He goes on to say that given how negatively I reacted to my recent trial of steroids he believes he is justified in allowing me 5-6 months of IVIG treatment before considering other options.
That means not starting prednisolone this week and waiting 2 months to see how I react to it. It means that for the first half of 2014 my CIDP will be managed and I will be able to lead some semblance of a ‘normal’ life and take a break from hospital admissions and trialling medications and their side effects. It is, in short, very good news. Which, as a family, we haven’t had much of recently.
So since today appears to be going so well, and since our children are safe and happy at Mermaid Cottage I think the only right and proper thing to do is to go out and celebrate…just as soon as I finish this blog post…and take a long hot bubble bath…and have a disco nap…