Well, I’m currently adding chapters to my book Has my halo slipped? (Or do I have a screw loose?) or possibly a whole new book via another hiccup in my health. A completely unrelated to the rheumatoid arthritis I’ve had since I was 7 years old hiccup…
On 8th July it was discovered that I have very low platelets. in fact they were 11 and should be a minimum of 150.
My period was so heavy it was as though a tap had been turned on. Nothing would stem the flow. It was frightening.
Since then I’ve had numerous hospital admissions and loads of infusions of Human immunoglobulin which seems to temporarily increas my platelets, but then just like that they keep dropping.
So, I’m having a bit of a whammy of treatments and in a weird way I am kind of lucky. Not the platelet side but the added bonuses I’m receiving to try to fight this Immune Thrombocytopenia ITP doctors think I may have.
I’m having 90 milligrams of prednisone so am currently almost (I said almost) without any arthritis pain. Bizarre feeling that. First time since I was seven years old. Sadly all those weeks of dieting to fit into a bridesmaids dress for my sister Ariarne’s wedding have been in vain. The weight is piling on and I place the blame squarely on the high dose prednisone (NINE TIMES MY NORMAL DOSE!!). I do not blame the chocolate, the apple strudel, or 2 desserts at Ariarne and Phil’s wedding – oh my god the chocolate creme brulee, oh my god. The blame is not on the food I am consuming while sitting around hospitals for hours eating from boredom. I don’t blame the battered fish and chips after a late night infusion on friday, nor the cheese and biscuits I had this afternoon following a failed shopping trip, and tomorrow I already know what I’m eating for brunch (going to Ariarne and Phil’s – Ariarne is a chef) and I don’t blame that. It’s the prednisone!!
I am also having two infusions of a drug called Mabthera that my rheumatologist said had it been around twenty years ago I wouldn’t have the joint damage I have now. It’s used for rheumatoid arthritis (RA) but really difficult and expensive to get. You have to fail a whole list of other drugs first, but this is where I am LUCKY. I get it because of my platelets and it might just benefit my RA too!
I have always had a bit of gut thing, reflux, pain, irritable bowel type stuff too – won’t go into too many details about my bodily functions here. And as a consequence of my low platelets I am now getting treatment for that too. I have (Actually am hoping it’s past tense) Helicobacter pylori and the treatment is strong antibiotics. And it seems that some people with Helicobacter pylori also have low platelets. And when the Helicobacter pylori is treated and cured platelets can rise. I have everything crossed as I had my last antibiotic tonight.
So my platelets have been as low as 8 and as high as 149. I got to the 149 when I had two days in a row of double infusions just so I could get to the wedding. I made the magic 149 the day before the wedding (a thursday). And despite the second double whammy I was back to 79 by Monday, 71 by wednesday (that was a good day – I was feeling positive after rushing to the hospital with an unexpected bleed to discover my platelets were pretty good and had only gone down by 8 in two days). But then by friday they were 44 and more infusion of immunoglobulin. I go back Monday for my second infusion dose of Mabthera and another infusion of immunoglobulin. Then tuesday another infusion of immunoglobulin.
I’m taking my laptop and a few series of Sex and the City on dvd. It’s going to be a long day.
Anyway this was just a quick unedited (in fact I’m too tired to even read over it right now – infusions and trips back and forth to the hospital take it out of you) update, so I will go right now but not before I tell you this:
In Australia we can’t produce enough immunoglobulin because not enough people DONATE BLOOD. The infusion of immunoglobulin that I have comes from donors in Austria, Germany and Switzerland. It’s very expensive but luckily we have medicare and I have private health cover. As an aside the Italian, French and German I have studied over the years is improving with every drop of the European blood product I am receiving. I just can’t stop speaking with an accent!!
So if you can donate blood please do, because each and everytime I have an infusion in HACU (Haemotology and Cancer Unit) I am surrounded by the most amazing people fighting cancer and other horrible diseases and they too are having infusions or blood transfusions to literally keep them alive.
It really is the greatest gift you can give.
http://www.donateblood.com.au/
One last thing the staff in HACU at my Hospital are the most amazing, most dedicated, kind and warm and caring people I have met. They work like a well oiled machine, a true team who help each other out and their sole pursuit is to make us all well. I am truly impressed.
See you soon
Nic(ole) ();-)
Don’t forget to check out my book at www.hasmyhaloslipped.com
