Today's News from the Free!

So there is a direct relationship between how interested doctors are in me and how much I am getting better. For example in Brisbane I saw the consultant every day for 3 weeks, then she came every 3 days but I saw the registrar everyday. By the end of my time in hospital I was seeing the consultant once a week and i saw the most junior doctor (the fab doctor Dr Emma) everyday.

So at the Free today I saw the Registrar! This is a good sign! Yippee. I really must be getting better.

My blood results (despite the excitement of last week) were

Bilirubin 96

INR 0.9

I am definitely less yellow- it's virtually gone from my eyes.

The other sign of getting better is less frequent visits to the Free. My next appointment is in the 30th Dec! Five weeks from now. 

The steroid reduction is much slower now. I am currently on 12.5mg of prednisolone. I reduce this 10mg on the 26th December.

So all really positive news!

Lets hope for no more dramas. A quiet progress week would be nice please!

Sorry for blog silence

So that was a weird 10 days.

My lovely careful and caring GP was trying to work out why I was breathless. He said 'we'll do a blood test to see if there are any clots in your blood'. So the test was done last Thursday.

So there I was buying some last minute Chanukah presents on Amazon last friday when the phone rings. It's doctor Gold. Apparently the test was borderline positive. I had to go AAU ( that's the acute admissions unit) at Watford general. Go now. Do not pass go. Do not collect £100. They are waiting for you

A quick search on google showed a few interesting things

1 a positive D-Dimer test is a strong indicator of a pulmonary embolism (PE)

2 there are various things that can give it a false positive result. These include inflammation, liver disease and a raised bilirubin. Sound familiar? 

So off I go to WHG having abandoned children left right and centre (thank you JF for picking up the pieces). I arrived at 3.30.

I then learnt a lot about AAU. It's a way of taking the load of a and e and hospital admissions. It's a pleasant waiting area where you sit and wait. Occasionally you go off for tests or talk to a dr or a nurse. But otherwise you wait for results. The notice on the wall said I would be there for 4-6 hours. Actually the whole experience was one of reasonable efficiency and very pleasant staff - especially when they bought tea, biscuits and sandwiches.

They repeated the blood tests. The sent me for a chest X-ray.

Then the SHO said she'd spoken to the consultant and that I should have a colour contrast ct scan to diagnose. I explained about my swelling after the last one I had. They rang the radiographer - no I shouldn't have one.

They could do a VQ scan instead. 

A quick search on google showed that this was a nuclear medicine X-ray. They would inject me me technetium (i tang jacob to check where it is on the periodic table)and I would breath in krypton gas (sadly not kryptonite!!).

In the mean time they needed to treat me as  though I had a PE. That mean injecting myself with Clexane. It hurt.

The scan was due to happen on Wednesday.

I left AAU after 4.5 hours.

Bless him, Andrew had made a complete Friday night dinner!

I had the scan on Wednesday ( another trip to AAU for a cannula ) - no krypton gas as its too expensive. - £2500 per patient. If they want to see airways I would have to have a ct scan!

It took 2 days to be reported on  - and lots of hassling by me to get it to be done and I had to keep ringing them to get the results.  Whilst waiting for the report I ran out of clexane - despite telling them this would happen - so had to pop (not that easy!)  back to AAU for an injection!

So surprise surprise when I got the results today - the scan was NEGATIVE!

There is no PE!

So I have learnt a whole new branch of medicine and can push around some new words!

I do commend the doctors for being precautionary. The system though does beggar belief. I am good a hassling. What do you do if you're not, or old or ill or don't understand the system?Scary 

And of course I still don't know why I'm breathless. Maybe I won't mention it again ........

News from the Free!

So today was really exciting!

INR = 1.1

Bilirubin = 125 (!!!!!!)

Lowest ever. If I have another proportional drop of bilirubin in the nest few weeks / month - I won't be jaundiced anymore! 

But I mustn't count my chickens!

Fingers crossed.

All other results going in right direction. For the first time the doc said "you are getting better "

I still need to be patient as I have been very ill indeed...... And as the steroids reduce in this range, flares can occur. 

Had A very nice lunch / tutorial with mark at the garden gate pub. Probably our nicest yet.

Back to targets tomorrow!!!

Auspicious day

Today is the 10th November. That means its exactly three months since I got sick and was admitted to hospital in Australia.

It also means that I been home in the UK for as long as I was in hospital in Brisbane. 6 weeks of each.

I have made lots of progress and the big 3 monthiversary news is that for the last two days at least I haven't had a nana nap (an afternoon sleep) and I've been out to a fireworks display this evening and told my story loads of times!

Will I sleep through the last episode of Downton Abbey tonight? I hope not!!!

I have a consultant appointment at the Royal Free tomorrow. Hopefully this will confirm that my bloods continue to go in the right direction.

Fingers crossed!

I'll report tomorrow (if I'm not asleep!).

Yellow (ish) autumn in Radlett

Random liver things from the news / tv

When you suffer with a certain thing you do suffer from cocktail party syndrome ie. hearing the word liver more clearly than before.

Here are a few liver related things I've heard / read / seen

1) Lou Reid died from complications from a liver transplant. Ok he had sclerosis (drink) and hep c (drugs). 

2) the poor little girl who died after falling in a game of bulldogs had a terrible / fatal liver injury 

3) a man was admitted to Casualty (as in the TV programme) with vomiting. It turns out that he had liver failure. He was diagnosed via a ct scan. Is this possible?

4) on the tv news yesterday they were talking about inappropriate hospital catering. A man had had a operation on his liver. When he was ready to eat the only thing available was LIVER and ONIONS!   LOL!

And - interesting fact of the day

Today is the last consecutive odd number day of this century

9 - 11 - 13

Wow don't think I can contain myself!

More progress?

So I've been trying to set myself a few little targets. Here's how I'm doing 

1 - looked for 3 lost items around the house - a pair of trousers, a top and Alex's down coat. In total I spent about an hour on this task. One item found (the coat)

2 - go for a daily little walk. Day one got to number 3. Day 2 got to hillside. Day 3 got to number 1. So far so good. Also took some great photos of fungi on our lawn. 

3 - use sewing machine. This didn't  go so well. The needle had broken! It took an hour to change it. Shaky hands and numb finger tips really don't help. Now the bleeding needle won't go up and down!!!! Failed on that one :-(

4 - unintentionally I have started reading a book! I woke at 3.30am and had no battery life in my radio. So I picked up a book. Now it could be that I am down to 15mg prednisolone but the words weren't jumbled on the page and they all seemed to make sense! A few pages in I fell asleep!!!

I now seem to have markers of over doing it / when to stop

- numb cheeks (weird!)

- wheeziness (or at least the feeling of it)

- numb finger tips and toes

When these come on sitting down / stopping isn't enough - I have to go sleep!!!