The only way is up…baby!!!

My platelets are 53 today – all on their own. With no IVIG / Octagam and it is 37 days since my last infusion.

Woo hoo!!!

My RA is playing up a bit but my ITP is improving!!

Still off the aspartame and on the Mona Vie

40 love!!!!

My platelets were 40 today, again, still, just like they were on Monday!

Gotta love that!

I know 40 seems low as we all now know the norm is 150 – 400, but for me staying at the same rate and being 40 thirty-one days after my last infusion, it’s bloody amazing.

Something seems to be working  and it could be the lack of aspartame in the form of Pepsi Max or it could be the dapsone or the Mabthera or the Mona Vie or it could just be my bloody body saying “enough is enough is enough”!

Don’t know, don’t care but am pleased it is happening so close to Christmas.

I go back next week – on Wednesday.

Now, what to do with all my spare time today? I was planning on a day of infusions… An assignment perhaps – doesn’t seem to be the right way to celebrate great news but alas with all my trips to and from the hospital since the beginning of July my course work has suffered but am still aiming to finish by 22 March 2010 and then I will have my real estate licence (not that I would EVER work as an agent – not after watching Mum do it for the last 30 years, it’s dog eat dog and there’s never enough dog to go around!). Mum is, of course, a fabulous, skilled, honest agent with integrity and amazing negotiating skills. They are rare!

But I am going to be an Auctioneer – that is the plan. Then I can work hours that suit my body – bloody RA.

Might also go and buy some more Christmas lights – the competition is fierce here this year. Went out the front to view our apartment block and some of the neighbours homes resemble the Griswalds – we almost wet ourselves laughing when we saw our lights – we could see one light, not one string of lights, not one large light , no, just one globe. That was it. One globe glowing in the hedge. Everyone congratulated me on a fine effort and assured me I was a shoe in to win the prize this year.

Bye for now

Nic(ole)

Nicole Bradshaw BA RA (1st Class Hons) ITP (Hons) DVT (Hons)

40 is the new…

My platelets were 40 today which is very pleasing at DAY 28. Yes it is four weeks since my last infusion.

They think maybe the Dapsone is working. I think it’s the lack of Aspartame and the Mona Vie!!

I go back on Thursday and if I continue to hover around this level they won’t infuse me.

Stay tuned.

I dropped my prednisone to 10mgs last week but went back up to 12.5 as I became really achy. Am now going to try to go to 11mgs. Until I reach 10mgs I have to continue taking Bactrim to avoid a pneumonia that can send you to ICU!

On that note I am going Christmas Shopping.

Bye for now Saint Nicx

What a difference three days makes…

I packed my bag with drinks and snacks and sushi and books and ipod. It was so heavy Mum was worried I’d topple backwards with it on my back. I was ready for a long day at HACU.

But, I was in and out in around an hour and a half with platelets holding at 51 (a drop of a mere 4 points since Tuesday) and it is TWENTY FIVE DAYS since my last infusion. Can you believe it?! Twenty five days.  Woo hoo.

And so I was world’s best Aunty as I risked snot and phlegm and chicken pox to go to Ben’s swimming carnival with a bag full of caramel slice, lollies, weet bix slice, cheezels, cooked tuna and avocado and wild rice sushi (I take LOTS of snacks to HACU when I am having an infusion(!). Ben WON all his races, naturally. And Sophie’s Christmas concert at Kindy was the best concert ever – over in five minutes. I kid you not, I sat on the only adult size chair in the place (and didn’t attempt to use the toilets – I’d dislocate a hip trying to get down that low!) and expected to be there a while. But no, a song in Japanese, a rendition of Jingle Bells, the first verse of We wish you a merry christmas and you could hear the screech of rubber as parents  and grandparents fled the scene at high speed – the concert was over! It was a Christmas miracle.

Tonight I sang in our choir at our community christmas party. The audience was drunk and thus we were fabulous!

Snakes alive 55…BINGO!

My nose was bleeding last night and this morning so I assumed the worst – a platelet drop of enormous proportions.

BUT – platelets are 55 today. And the last infusions I had were on 9th and 10th of November. THIS IS GOOD!

I am to cease Clexane (which I did last night when my nose started to bleed) and go back friday which is a tad disappointing as I was all set to go to my nephew Ben’s swimming carnival and my Niece Sophie’s Christmas concert. If my platelets stay up I will still make both but if they drop I’ll be infused friday and then again on Monday. NOT as an inpatient on the weekend – and that is why I love my haemotologist and all the staff at HACU!!

Birkenstock sandalen mit socken

I am tiring and frankly really bored with wearing these bloody, tight, horrible, brown anti-embolism stockings for my dvt. Especially with the weather we’ve been having lately. Why couldn’t I get my DVT in winter? Instead I got it just before the mercury hit 40 degrees (that’s Celsius NOT Fahrenheit for anyone reading this from the Northern Hemisphere!)

They look appalling with shorts and sandals and while I’m no fashion plate nor of a size that could ever dream of being one (in fact there are a couple of size 10s struggling to get out of me right now!) I still don’t like to look too daggy, especially when shopping “in town”. And I think that yesterday I may have been mistaken for a German Tourist in my Birkenstock sandalen mit socken. Except that I was wearing Ecco sandals and my toes were sticking out from my stockings, and got sunburnt!!

I caught the ferry into town to return some clothes I had bought from David Jones just before my last hospital admission. I find it difficult to try clothes on in stores because you need to be contortionist in those changerooms and the likelihood is that I’d dislocate a hip and fall under the door wearing nothing more than my underwear (remember I have a couple of size 10s inside me!) and get stuck halfway and need to be rescued by a teenager wearing heels and a micromini. No thanks! Instead I buy, try at home and keep what fits and return the rest. It’s a bloody miracle if anything does fit me (see above and below!). Bloody prednisone and a need (no not a want, really it’s a need) for high fat snacks!  And not a modicum of will power do I currently possess!

The weather was perfect yesterday so on the way home when it didn’t matter if my hair got messed up or I got drenched, I parked my mobility scooter on the front (the bow?? is that what it’s called?)  of the river cat / ferry and enjoyed the heat of the afternoon on my skin (except for where my stockings covered my legs but not my toes(!!) ) and the occasional gentle cooling spray of water from the river, and the fresh germ-free air! It was just divine. I love Sydney. Love it.

Sorry to inflict the above on you, just felt like a chat! I know you are really just here to find out the status of my platelets, am I right?

Well here you go… enjoy as much as I did.

On Tuesday my platelets were 112. And so I went home and continued my 40mg Clexane injections for my DVT.

 Today  (Friday 27th November – would’ve been my Dad’s 77th birthday today)  – DAY 18 – post Octagam / IVIG infusion and my platelets are at a record high of 89.

Last time I made it to DAY 18, my platelets were 26 and I had an infusion. This time I don’t have to go back to the hospital until next Tuesday.

May not get a spleenectomy this year after all. Woo hoo.

God is that the time? Cheese and wine o’clock!

Until next time.

Cheers…hic…hic…Nicx

A star!

According to one of the Haematologists I am a star.

My haematolgist, Jenny has told the surgeon to put my spleenectomy on hold (for now).

Today (day 11 post Octagam IVIG infusion) my platelets are 143 – the highest they have ever been at this stage post infusion.

If it’s decided that I need my spleen removed it will have to be either in the next couple of weeks (so it’s not too close to Christmas) or after I get back from Noosa. But I may not need it after all?!

Wait and see.

Back to hospital on Tuesday.

Having 40mgs Clexane daily from today. This is a lower dose just in case my platelets drop significantly over the weekend.

The rollercoaster ride continues…

Too hot to write anything else need a swim…

How to get traffic to your blog

A few people have found my blog by googling “Jonathan Cainer” and “Moran recliners”.

Think I might mention both of these loves of my life more often.

Never know a publisher looking for a comfy chair to read manuscripts might pop by or alternatively someone looking for a good horoscope like:

You will happen upon some interesting reading which will make a lot of money and create fame for you and the writer. But especially for the writer.

www.hasmyhaloslipped.com

As easy as 1…2…TWO HUNDRED AND FIVE

My blood pressure was down today – 138/87 – low for me when I arrive at HACU. Not as low as it used to be or as low as I’d like it but lower. So that was a good start.

Cannula Queen got my blood first time. Excellent.

Then my platelet count came back = 205.

No one believed it could be true so they tested it again (why do they not ever test it when it’s low!?!?!). So I sat and waited and it was true.

My platelets today are 205. They have not been that high through this whole ITP thing. And they have never gone up at this point post infusion. (Day 7).

There could be a number of reasons for this:

1. I’ve given up aspartame (particularly Pepsi Max)
2. I have started drinking Mona Vie – a juice / tonic which has Acai berry and load of other fruits in it – I think I might become a distributor if it is the reason, so if you want to buy it send me an email.
3. Dapsone may be working
4. Mabthera may be working
5. My Haematolgist sent a letter to the surgeon (and saw his secretary) who is supposed to be removing my spleen – this caused me to stop attention seeking and get those platelets up up up!

It’s exciting to be that high, I go back again on friday for another test. Hopefully I will still be up.

EVERYTHING CROSSED!!

Prednisone is now down to 17.5mgs

Clexane 80mgs once a day

Bactrim – Breakfast and dinner on Mondays and Thursdays

Slow K – two breakfast and dinner

Nexium – one 40mgs at night

Dapsone – 100mgs daily

Folic Acid – 5mgs daily

Paracetamol – PRN (per required need)

C’est tout!

Nic(ole)x

Worse than Australia Post

Sorry I’m so late with my post. My on time record must be up there with Auspost now!

A quick update.

Monday my platelets were 45 so I had Octagam – really fast and felt pretty ordinary that night.

Tuesday they were 90 – so I restarted Clexane injections for my DVT/blood clot – 40mgs. And had my second dose of Octagam but at a much more palatable rate.

Friday platelets were 183 so am now having Clexane 80mgs daily (courtesy of an injection into my stomach by Mum) and go back again on Monday.

I have to be even more carefully monitored now so that they can treat my clot. My platelets have to be high enough that the risk of a bleed from the Clexane is minimised.

I had a fabulous cannula on Tuesday – in fact I had two:

The Cannula Queen strikes again!

We decided going to the toilet might be a tad tricky with this cannula (especially with the styrofoam cup taped on for protection).

So…

Eeny meeny miney mo

I got another cannula in my left hand.

And there I was one in each hand and my blood pressure being monitored…

Tied up - how they keep me still in HACU

They do make me laugh – a lot – in HACU. Really great people doing a fabulous job.