Another year gone another bloody clot!! (Mind the pun)

So it's been quite a while since I have posted on this blog, in Fact it's actually been about 14 months!!
Starting from where I left off from last year I finished that next course and my blood finally got to its goal of INR 2-3
I had to have weekly blood tests for 6 months to make sure it was at its optimum level and as it went up and down so did the warfarin!
In September of last year I had my follow up contrast ct scan and the clot had almost disappeared so I came off the warfarin in October 😆
I then decided to do something about my weighty issue again and commenced light and easy, the loss was gradual but after 3 1/2 weeks I was down almost 10kg
But as is usually the way when I go to do something good for myself murphy has to come along and throw a spanner in the works, this time it was by way of sciatica!

I don't think I've mentioned it previously but early 2009 i had a pretty nasty stack whilst holding my 15 mth old, i was suffering severe constant pain and after many months of investigation it was only after seeing a neurosurgeon and having a MRI that they found the disc between L5-S1 was shattered and almost entirely cutting off my sciatic nerve.
On the Tuesday after the June long weekend I waddled into surgery only to wake up completely pain free (except for the incision however this was but a drop in the ocean compared to what I was previously in)

Back to the now (well November) I felt that same pain again (OMG) and having been through it before I self diagnosed, booked to see my same neurosurgeon, then went to doc and got referral, and begged her to give me a form for MRI, I then begged for pain relief but the stuff she gave me didn't even touch the sides
I got MRI done and results were similar to before in that the same disc had started to bulge/leak again
Fast forward a few weeks and I'm back under the knife again, this time they found a problem with my blood in that my platelets were super low, so I had to have some transfused into be immediately prior and after surgery, it looked like a big bag of puss!! (Gross)
When I came too I couldn't move my right leg/foot/toes
I was sent straight off for another MRI where the doc said it looked like I blew it out again straight after surgery when I had a violent coughing fit after my breathing tube came out!
So 2 days later after a good sleep I woke up with my leg again, to say that was a relief is a complete understatement!!
Now I just had to wait until my body decided it was going to reabsorb the muck and the swelling to go down so that I could once again enjoy a pain free (opiate free) life again!
This finally happened at the start of the new year, yay 2013 without narcotics!!

So with the whole platelet thing the specialist said I have thrombocytopenia which meant my blood isn't able to clot as well as a 'normal' persons blood! HAH!

Hop skip and jump to 2nd April 2013 and I awoke with a swollen left leg and a bit of tightening in my chest
I promptly booked to see doc and once he saw my leg and heard my symptoms he told me to go straight to emergency
I won't go into all of the nitty gritties but long story short, after a stack of tests and scans they found at least one but possibly 3 or 4 pulmonary embolism's in my lungs
It seems I had a deep vein thrombosis in my left leg of which some of the clot broke off, travelled up my vein into my heart, it was then kindly deposited into my lungs where it could no longer travel any further!
So back on the shitty tummy needles and warfarin it is for me!!
This time though it looks like its for the long haul, I now also have to have some heart tests and they are doing some other genetic blood tests to pin point what is causing my blood to act all dopey and stupid!
I don't know that this latest news has quite sunk in yet however when it does in sure it will hit me like a tonne of bricks!!

Oh and the pictures are of my swollen left leg that I took the same morning I went to see the doc!

Celebrations short lived!

So, yesterday morning hubby and I did a little happy dance as we had my last injection, that was until about 10am when the consultant from Charlie's called and said she wants me to go on another course of 10 needles for 5 days and up the warfarin to 7mg a day!
BUGGER!!
So off I went to pik up the jabbajabs from the chemist (who were oh so sympathetic) and we started out new course last night, so 2 down 8 to go!
Not too sure if I have much more room on my tummy (and thats saying something, cos it aint small) for these ones, hubby might have to slap em in my arse instead!!
Latest pic of Tum!

Purple people eater

Well after 4 days, 8 heparin injections, and a daily dose of warfarin I feel a bit worse for ware, had bloods done yesterday, my INR is only 1.1!
The normal range is 1.0-1.3 and they want me between 2 and 3!
Meanwhile I'm starting to look somewhat like an eggplant!

Warning, this post may contain a picture that could be offensive to some
Viewers!
So please excuse the chubby gut!!

Sleepy time!!

So I had gastroscopy yesterday at Charlie's under general, nothing like that feeling of being put under (no wonder MJ liked it so much)
Though I must say I'm not a fan of the rude awakening!
All was well and nothing untoward down my gullet so when I regained my marbles I wandered down to the transplant unit to meet with the consultant to discuss medication.
I am now told the do's and dont's of having to take warfarin long term and how closely it has to be monitored, I also have to have 2 injections per day 12 hrs apart of clexane (anti-coagulant, not unlike heparin) for 5 days to assist the warfarin in the beginning
Then every couple of days I have to get my INR checked (another blood test) in the morning so the doc can adjust my warfarin before my next dose time in the arvo/evening
All sounds a but complicated but I'm sure I'll get used too it!
So needle time... Last night went to my neighbors house (she is a reg nurse) so she could teach hubby how to give me the injections, she came over, laid me down and did a good job, wasn't to bad on the way in but damn that crap that's getting pushed into me stings like a bitch!!!
Was still stinging 1/2 hr later but I can't rub it as I bruise too easily so just gotta bare with it!
So hubby had his turn this morning, he looked like a professional the way he flicked the needle upside down and got the air out of it (must be those medical docos I make him watch from time to time) he pinched my fat (times like this I'm glad I have extra!) and poked me, I didn't even feel it! Until that awful ooze went in then it stung like a bitch again, top job to to my new nurse, he defiantly gets brownie points for his gentleness.
So, 8 more of these to go and the warfarin should be then doing its thing, just need to be super vigilant that I don't injure myself as once I start bleeding I can't stop!!
Another 'terrible' side effect of the warfarin is I'm not allowed to eat foods that are potassium rich, so out goes the leafy green veggies (bugger!)
Never liked that rabbit food crap anyways!!
Well that's me for now, will report back soon!

Bloody clots!

Saw prof Jeffrey this arvo with my entourage (Mum and Clay)
Prognosis looks better than we thought, I'm booked in for an endoscopy (camera down the gullet) on Monday at Charlie's to make sure there's nothing untoward happening at the top of my Gastro Tract
Then it's off for some blood work to ascertain what dose of warfarin I will be put on
They are going to trial the warfarin and rescan me in six months to see if it has helped to move the clot
Basically the way he explained it to us is there is an artery and a vein that supplies blood to the liver, my blockage is in the vein that stems from my small intestine with all of the digested nutrients from the food I eat, and because my liver is predominantly cirrhosis (scar tissue) it is hard and rigid and inflexible so the blood flow has to slow down to make its way around, and in doing so has backed up and bunched up (thrombus/clot) add to that it being unable to create a recourse through the scar tissue it is therefore unable to adequately supply my bits with the bits I need
So we will trial warfarin (blood thinners) and see if it helps reduce the size of the clot, this will also alleviate the risk of any new clots forming in the meantime
To say we are somewhat relieved is an understatement!

Wtf is thrombosis

I picked up my results and immediately read the report, for what was supposed to be a routine CT scan the results didn't look very routine!!!
I emailed my GP as I didn't quite understand what I was looking at, she then called me back and said she would call one of the consultants at the heptology department at sir Charles Gardner hospital and get clarification.
She called me back in about 20 mins and said the news wasn't good
Apparently the radiologist had already sent the results through to the department and the specialists had already huddled over the results
My main portal vein has a thrombus, as does the left and right portal veins, the left vein is stretched with partial occlusion, the left lobe of liver has an atrophic appearance suggesting cirrhosis and I have enlarged spleen.
Basically I think it means blood isn't getting to my liver for filtration and is backing up In my spleen
My GP said I should be expecting a call and to be prepared for some pretty major treatment/surgery
They are unsure if it's a chronic blockage (been there a long time) or something that has happened recently, but hopefully due to me being only 33 they are hopeful they can save the veins
So now for what was just a routine test I'm looking down the barrel of a gun, I have cancelled my gastro surgery again and lie in wait for what will be my biggest hurdle to date
I can look at this 2 ways, be devostated and stressed about whats happening and feel sorry for myself or be thankful I had thought about the gastro surgery and had the test done which picked up the blockages, otherwise it would never have been picked up until maybe it was too late, I choose the latter!
Yesterday I received a phone call from dr Jeffrey's receptionist saying I'm booked into see him on Wednesday arvo, not bad considering it's usually a 4-6 mth wait to see him, so now I'm just waiting to see what the go is!
It's now that I've decided to keep a blog about it all so one day I can reflect on it and also to share my story so my loved ones can walk this road with me without me having to explain everything to them
And on the off chance someone comes across this with Similar issues they know they are not alone
So I'll leave these lengthy posts here and report back on Wednesday when I have more of a clue what's going on!!

Pink warmth

It's Wednesday, and CT scan day, appt booked for 9 am, I've fasted and I front up only to be told I went to the wrong place!!
I get to the right place and have to drink a liter of water by 10 am!
I got it down pretty easy as I was as parched as a desert...
I got changed and went into the scanning room, the nurse puts the IV in and explains what I will feel, and she was spot on, when the dye goes in its the weirdest feeling, it's all warm, goes in your head, then u taste metal and can feel the dye going down ur torso, then u feel like uve wet yourself and within about a minute or 2 it's all over!!
And that was that, I headed to work with my optifast and soup and thought nothing of it!!