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!!

A weighty issue

Due to my needing to have the pred and being hungry all the time dieting is a huge struggle for me, I looked into several different ways I could achieve my goal of loosing weight and gastric surgery seemed to be my answer, I got a referral to a bariatric surgeon whom my dad saw (and may I say he looks great!) and went through the do's and dont's
I decided to go ahead with the gastric sleeve bypass and booked it in, I was told i have to go on optifast to loose fat from my vital organs to make the surgery easier, I also had to come down on the pred, so I was determined and began tapering down right away.
2 weeks before surgery was ubooked I had a pretty severe asthma attack, went in an ambo from my GP to hospital and was in ressus for 3 hrs then stayed in HDU overnight, the pred was upped again and I cancelled surgery
I decided I should see Dr Jeffrey again as it has now been 4 yrs since I saw him, I was lucky to get an appointment within a few weeks as there was a cancellation and off I went!
He was ok with me having the bariatric surgery but wanted me to have a contrast abdo CT before to make sure I don't have any varices (extra veins coming out of liver)

Continued...

So I am now happily married with my pigeon pair and life couldn't be better!
I had to up the pred again not long after having jack as my asthma was becoming a bit of a problem, then in August 08 after what was supposed to be a routine pap smear it came back with carcinoma in-situ on my cervix, it's when the cells have decided they are ready to turn into cancer but are not yet a tumor, I went to see an oncology gyno who did a cone biopsy and removed a large chunk of my cervix, the margins were clear and he was satisfied he got it all, I was on yearly pals after that but it's a small price to pay compared to the alternative!
Then in march 09 I was holding my 16 mth old and tripped on one of his toys
I went down Like a sack of potatoes holding onto my boy for dear life, I landed on my tail bone and felt the most insane pain shoot straight through me, I fought through it as we had a family holiday booked for that Easter but while on holiday I went down again, the trip home sitting on the plane was pure agony and I decided I really needed to get on top of whatever was going on, a CT was done on my spine and I had sciatica and the L5-S1 disc was bulging, I was having physio and on some pretty decent pain killers but the pain was horrific!
I told my GP she had to do something as it was getting worse and I was now unable to walk without holding onto something, I was becoming suicidal with the pain so off I went to see a neuro surgeon who ordered a MRI, the bulge had completely cut off the nerve and my bladder and bowel were starting to be effected, I was rushed in for a discectomy to which I woke up from with NO PAIN!
The surgery was a success and I found a new love for life, I thanked the surgeon for saving my life and I went on my merry way!!
In January 2010 I was referred to a gyno specializing in urology as I had been quite incontinent since I'd had my boy, nothing I tried helped and I was going through about 3 packs or more of pads a week!!
So after seeing him it was decided that I would get a bladder sling put in to lift up the urethra and hopefully stop me setting myself, to my amazement it worked!! I also had a tubal ligation at the same time as I didn't want to risk another pregnancy with my back, bladder, and cervical issues!
I am now morbidly obese wearing size 24 (the biggest I have ever been)
So I decide to do something about it...

Continued...

After a complicated pregnancy and a difficult birth I welcomed my gorgeous daughter into the world, I had pretty severe pre-eclampsia and she was induced when my bp was up around 170/110!
She was born with an apgar score of 3 and needed quite a bit of work to get her going, but she made it (what a tough little cookie)
I recall having a few times where I decided I didn't need my daily medication to keep my liver in check, I looked at the tablets as poison as I knew the side effects and I hated them even more than the symptoms themselves.
Each time I went off the meds my weight would drop down again and then I'd crash and the liver would flare up again to which I had to go on the meds again to get it under control
I think about this time the doctors were banging their heads against a brick wall with me as they could see what I was doing to myself but at that time I didn't give a shit!
By 2005 I finally matured enough to realize the medication was the best option for long term health so I started taking it daily, as expected the weight slowly started creeping up on me and I started to get my moon face back.
I did what I could to slow it down but with my asthma constantly banging at the door every time I tried to do some physical activity I had to up the dose of pred to keep the asthma at bay, I recall a few liver relapses in this time where my LFT's were getting up a bit but Dr Jeffrey was on top of it with the pred and azythioprine.
That same year I got engaged and married and by this time I had gone from a size 8 to a 14
We started trying for number 2 as soon as we were married but nothing was happening
Fast forward 2 years and 'finally' we conceived our boy!
By this time I was a size 24!!!
I had morning sickness (why they call it morning I don't know, mine was more like 'morning, noon and night') for the first 5 mths and didn't need the high dose of pred that I was previously on, it seems the body treats a pregnancy as a Foreign body so the immune system shuts down to a point and my liver was loving it!!
In November 2007 I gave birth to a healthy bouncing baby boy!
Upon leaving the hospital I was close to 40 kilos lighter that when I first conceived and walked out of the hospital in size 16 jeans!!

And so it begins...

I'll start this off with a little about me and how I got to where I am today...

When I was 12 years old we moved into a house my mum and dad built, it was not yet complete and so we had concrete floors and no window treatments
Once my folks had saved enough money they finnished off the house, this included glueing the carpets, scotch guarding them, lacquering the timber door/window frames and painting the walls...
All this in a space of a week or so played havoc with my health
I was violently Ill and from this time forward I began to get hay fever every day and asthma whenever I did any physical activity
I was on countless medications to stop my nose running but nothing seemed to last long term, and those that seemed to help ie phenergan etc just made me sleepy
To say functioning at school was a mission is an understatement!
When I was 14 I had a nasty bout of whooping cough that lasted a good 6 months or more, I recall some of the coughing attacks lasting for minutes at a time not being able to breathe, it was horrid
I was always a fit kid, went for long jogs, was in my high school cross country team, always did well at athletics carnivals, I danced 2-3 times a week from about the age of 4

Fast forward to when I was 16, we moved to WA from our home town of Phillip island VIC
I remember being in yr 11 at my new school and about half way through that year my health started going downhill
I recall having constant diarrhoea and needing to go to the toilet frequently, also when I popped off (flatulance) it was VERY smelly!
As funny as this sounds it was a pain in the arse (literally)
Mum took me to the doctor to which they tried a few different medications none of which made any difference
I was then referred to a gastroenterologist in the city to try and find out what was going on
I recall one time at my place of work, it was a Thursday night, I needed to go to the toilet and had about 5 people lined up at my aisle, I asked the supervisor if I could go (she knew that at any time I might need to go due to my health problem) she however told me to wait (omg the pain of it) I then asked again and she said no, then I could wait no longer so I apologized to my customers an started the (seemed forever) walk to the toilets, I didn't make it in time.
I got to the toilets, tried best I could to clean up the mess I made, and then had to go back to my checkout to cash up the till.
I went home that night completely embarrassed (I don't think anyone knew what happened but I was 16 and self conscious) and I was totally distressed, I couldn't front up for my next shift nor any more after that as the thought of going back there made me feel sick, I couldn't tell them why tho!
Not long after this happened we moved to Perth, I started at a new school however had constant diarrhea still, I was going through all sorts of tests, colonoscopy, lots of blood tests, and finally a liver biopsy and LFT bloods, the LFT's were up near 2000 (normal is 30) and by this stage I was becoming jaundice, the gastro diagnosed auto immune chronic active hepatitis
I was told I'd more than likely never have kids, I'd need a transplant and would probably not live to see 25! (I'm currently 33 with 2 beautiful kids, how wrong he was!!)
I don't recall much from this time as I was pretty shell shocked by his diagnosis but I still vividly remember the stinky farts and the 1/2 hr trips to the toilet!
Around the age of 20 I fell pregnant with my daughter (needless to say i wasnt too careful on the contraception front as i was told its unlikely id ever be a mum) i decided at this time i needed a new specialist as the one I had I didn't like and he was a bit creepy!
That's when I met Dr Gary Jeffrey!