Status update Wednesday 25 September
25 September 2013
Home at last. Checking in at home.
Sent from my iPad
Status update Tuesday 24 September
24 September 2013
Dear all
So we haven't really worked out whether and when to carry on with the status updates, but this time tomorrow we should be reporting that Debbie has been discharged today Wednesday evening for ongoing treatment as an outpatient. Some tests today and then she should be free to go.
After that it will be weekly (and maybe later fortnightly) appointments at the Royal Free for some months but they are talking about normality in six months.
The other real comment of the day is that English hospitals (sample size 1) do not compare well with Australian ones (sample size 2)!
I spent most of the day yesterday in the ward with Debbie and from the commencement of visiting hours we had a succession of very welcome visitors ending with Alex and Jacob for a family reunion at last.
Love to all
Andrew
Sent from my iPhone
Travel report Monday 23 September
24 September 2013
Dear all
I'm claiming it is still Monday even if not either in London or Brisbane, but sorry not to have done a status/travel update yet.
This is just a very quick update before I try and go back to sleep.
The flight from Dubai was uneventful and Royal Free were expecting Debbie when she arrived at A&E and whisked her straight to the liver ward.
She says it's noisier in Ward 10 North at the Royal Free at night compared to Ward 4E at PAH and she's finding it hard to sleep. But then I am at home where it is silent and I am sending this at 2:00 am!
Love to all
Andrew
Sent from my iPad
Travel report Sunday 22 September
22 September 2013
Dear All
So we are now in the lounge in Dubai. There have been some logistical dramas (taxi, baggage) which has limited our lounge time but other than that all has been fine.
London flight in one hour.
Love to all
Andrew and Debbie x
Sent from my iPad
Status update Sunday 22 September
22 September 2013
Dear all
Checking out
Well I can't believe that we have got to the end of this particular journey and are about to embark upon the next legs.
The last six weeks has been the weirdest of my life. It has been one where I have been very sick indeed but one that that has also brought a lot of hope - and a few occasional laughs as well!
I have learn a lot about myself (a patient stubborn fighter), my children (totally awesome and very resilient), my hubby (can cope with everything and still be there for me and the children), my family (amazingly bonkers), other people (everyone has a story and sometimes they are very sad but people always fight), Australians (are the best) and of course our friends.
It is truly my friends (and family) without whom I could not have got through this ordeal. Every single word of a text, email, skype, phone call has been absorbed into my very essence. The same has been true for Andrew. We cannot explain the true meaning of this as we are still making sense of it all. All we know is that your thoughts and prayers have been such an important part of getting through. I am just sorry that we have not been able to reply to every single email individually.
We have many many thanks to make. In no particular order: To the Radlett branch of the Hougie support team. A very very special public thanks goes to Gemma, Lee and Lucas without whom our children would be homeless urchins wandering the streets of Radlett begging for food and shelter! The rest of you know who you are! I look forward to joining you for breakfast in real life rather than being a Skype call on the kitchen table (although it was one of the best hours I've spent!!!!). Thank you also to the Radlett and Leeds branch of the Pearlmans-supporting Hougie Support Team - thank you for looking after the olds!
Thank you to the wider support team in the UK (especially the St Albans - esp rachel and rafi, lauren and beryl, ) Nottingham and Dushanbe -alright this isn't strictly the UK - but thanks Mark for your support and reports - branches) - everything you have done (little or large) has been much appreciated.
Thank you global support team for giving us Brisbane contacts. Wow have they come up trumps! Thank you to the founding members of the Brisbane Hougie Support team (Eumundi branch) Sue and David, for being there from the very beginning - your strength and love has been a constant (Birmingham Uni Friends Rule the World!). Thank you Pam for giving us Lisa (we feel like that we won that medal with you!) - good old Habonim! Thank you to the entire Brisbane Jewish Community who have appeared at my bedside, fed me yom tov food, blown the shofar or indeed ended up being a caring doctor for me. A massive massive thank you had to go to Rabbi Jaffe (from Manchester) and his wife Devorah for visits, prayers, smiling faces, cholent, biscuits and chicken soup!!!!! Thank you to everyone from Givat Tsion South Brisbane Hebrew Congregation (Goodmans and Sebbans) who looked after Andrew over the haggim ( the weirdest ever?) and provided doggy bags for me. Thank you to the Brisbane team that helped Andrew while Alex and Jacob were still here (Shira, Cecilia and Natalie). And Laine the amazing Dutch phelbotomist married to an Israeli who took in Andrew and Kate and fed me quinoa!
Thank you to the wider Australian Hougie Support Team (Sydney and Melbourne branch) Mink you have been there for me all the way. It's what they say about oldest friends hey???? To the Aarons, Goodmans and Goldsmiths (included you too Pam!)- thank you for being at the end of a phone line. It has meant a lot to just hear your voices.
To my 26 different roomies a huge thank you. We laughed we joked we got through! To my original partner in crime Barbara, to my secret cheese and scone provider, the Pommie Vernia, to the salt of the earth farmer Syd from near Cairns, to Richard the Kiwi Geographic Information Science specialist. They have been an inspiration to me. I have heard stories that warm the heart and stories that beggar belief. Each one of them touched my life. I will not forget you.
And finally I have to mention the staff at Nambour District Hospital (where I spent the first 5 days) and especially those at the Princess Alexandra Hospital, Brisbane. From the people who deliver the fist jug of water, morning tea, all food and afternoon tea (Australia is more British than Britain!), to the cleaners, to the wardies, to the nursing staff, to the allied health professions, to the countless teams of doctors - thank you, thank you and thank you some more!
The Princess Alexandra Hospital prides itself on a patient centred health care model. They work very hard to operate in a joined up, holistic way. And from this patient's perspective it has worked. On this ward 4E, the gastro intestinal heptalogy ward, I've observed it's workings and have nothing but unwavering praise for the way that the teams of experts and staff have worked together. The hospital appears to be very well staffed (the nursing patient ratio is fantastic ) and if there have been gaps no one complained or whinged. Interestingly there are a lot of English nurses working on this ward. There is a wonderful air of calm efficiency here. It is always delivered with a smile and a chat - everyone has had time for patients. All of my 26 roomies have said similar things and get very upset if anyone complains! It is interesting that the PAH is a major teaching hospital so I have had contact with
Med students (apparently it's good for them to meet interesting and puzzling cases!). I have even been an an exam! I have loved the contact with the nursing students!
I have also joked with people that I have been a hospital secret shopper - as I have tested out at least 7 different medical disciplines!
I look forward to comparing all of this with the Royal Free!
A special thanks must go to the nursing staff. They are truly amazing in the dedication, level of care, pride in the job and loyalty to the PAH. It has been the same teams throughout my stay, just different shift patterns. A very special set of thanks go to the poms, Sarah S, Sharon, Gill and Jo. And to my favourite morning crew Kala and Myles and Megan (all we talked about was food!!!!!). To the wonderful Angela (my Angel) whose hair I desperately want! Jess, Jen , Jenni, Sandra, Kay and Emma - thank you. A special mention has to go to student nurse (and former environmental manager) Michelle for being there when it mattered and always making me laugh. There are so many special nurses here - too numerous to mention by name. Each one consummate professionals. Maybe you should have a new tag line "Australian Nurses - teaching the world to nurse".
A very special thanks go to the social workers - Cathy and Carla - they were vital in getting through this.
And so on to the Doctors. The most incredible liver team team ever - thank you! First a thank you to Dr Jonathan Mitchell the referring consultant in Nambour - a St Albans School man to the hilt! (All a very strange coincidence that one).
It appears that Dr Caroline Tallis, rising international liver star, and her team like a challenge! There have been moments where Caroline has said why is your bilirubin doing that? It's starting to annoy me! But the team (Jeff, Udi, Mohammed, Emma and early on Joel) have carried on carrying on! It has been fascinating to watch the art of medicine (backed up by science!) - it's an iterative process in full flow! Again more calm efficiency with smiles and undying professionalism. I am truly grateful to you all. Thank you to the junior doctors, especially the fabulous Emma, I looked forward to every visit (they were rather frequent!) - you worked so very hard on my behalf - and hey that canulla bruise will go away one day (only kidding it was Mohammed that did that!)
Caroline worked tirelessly for me. She once mumbled something about worrying about me in the night (I'm sorry). Caroline managed to find me wherever I was in the hospital, including coming in unsheduled to find me in radiology after my vasovagal ("I nearly crashed the car when I heard", said Caroline) - you are truly an inspirational doctor to your team and your patients. You have been honest (a bit scary but necessary), practical, rational, cautious and methodical. Your gut feeling is strong and instinctive. I have benefitted from all your qualities. I am eternally grateful. You will always be in my thoughts.
So what does the future hold? Only time will tell........
We'll be out of touch for a while, until we get installed in royal free and have email. We'll let you know what is going on. Maybe I'll blog but I can feel a book and definitely some auto narrative journal articles in my waters. So watch this space.
With many many thanks and lots and lots of love to you all
Debbie and Andrew xxxxxx
Hospital by numbers
Number of weeks in hospital - 6 weeks and 2 days
Total days in hospital - 42
Number of nights in Nambour - 5
Number of trips in an ambulance (no blue lights!)- 2
Number of trans-jugular liver biopsies -1
Number of colour contrast CT scans on liver - 2
Number of vampire visits (blood tests) approx - 38
Number of viles of blood taken - 140
Average Amount of blood per vile - 4ml
Total amount of blood taken for vamporial blood supplies in Brisbane - 560ml (yeah that's half a litre!)
Blood transfusions - 1
Number of code blues due to vasovagal syncope (never to be repeated!)- 1
Longest word I have learnt - encephalopathic (15 letters good for a crossword)
Number of days monitored on telemetry - 4
Number of ECGs - 6
Number of chest x rays - 4
Number of CT brain scans - 1 (number of brains found - 1! - and it's in fine fettle!)
Number of CT lung scans - 1
Number of echo cardiograms - 4
Number of Doppler scans - 1
Number of times been a medical student exam - 1
Number of nurses looked after me - countless and all angels!
Number of medical students attempted to diagnose me - 4 (and how many got near to diagnosis?- 1 - not bad for a 2nd year )
Number of teams of doctors seen - - 7
Heptalogy
ITU
Cardiology
Psychiatry
Infectious Diseases
Endrochronology
Ophthalmology
And medically related teams (allied health)
Phlebotomists
Diabetes education
Social work (including Cathy "the hospital" Martin)
Dieticians
Physios
Pharmacists
Worse failed attempts at canularisation - 6
Number of 24 hr urine collections - 3 (v tedious)
Number of arterial blood tests taken - 5
Number of roomies over entire length of stay (including mr L with TB) - 26
Number of visitors from the UK - 1 (thank you Kate!) (2 actually - the doctor who is escorting me home)
Did you know? That the liver carries out approximately 500 functions? I do now!
Highest Bilirubin 380
Lowest Bilirubin 233
(Normal bilirubin is 20 - to stop looking jaundiced I need to be 80)
Highest INR 3.3
Lowest INR 1.8
Number of people on email update list - 87
Number of pages of notes in hospital file - too many to count but if I stay any longer I'll be on my second volume.
Status update Saturday 21 September
21 September 2013
One more sleep - 24 hours and counting
Dear all
So here we are in the last 24 hours of my stay in the PAH in Brisbane. We are due to leave the hospital at 6pm Brisbane time (9am UK time). We are flying Emirates via Dubai (flights EK 435 to Dubai, EK 1 to London, for any that might want to track the flights), arriving London at 12:15. I will be transferred straight to the Royal Free. Since our phones have not been connected to the UK network in nearly two months we have no idea if they will work on arrival so please be patient in hearing from us.
Today has been pretty weird as they have been prepping me for the journey ahead. Unfortunately this has involved being on a painful potassium drip all day (the faster the drip, the more painful. Reducing the speed means it takes longer ...). I have found the most wonderful new painkiller that has helped considerably - chocolate ice cream.
Today has also been a day of saying goodbye to people. It's been quite emotional and I even made one of the doctors cry.
We've spoken to Kate and she had a good flight and made it home safely.
With love
Debbie and Andrew x
Sent from my iPad
Status update Friday 20 September
20 September 2013
Dear all
So early this morning, and within minutes of each other, the doctor, Mohammad, landed in Brisbane and Kate landed in Singapore on the way home. And by 8am Mohammad had arrived at the PA to see us.
He has brought a "field hospital" with him but doesn't expect to use it. He said he was entirely happy and confident so two more sleeps and we will be leaving here.
It has been a busy day of tests. I can barely contain myself with excitement and am ready to go home now!!!
Lots of love
Debbie and Andrew x
Sent from my iPad
Status update Thursday 19 September
19 September 2013
Dear all
So I was minding my own business having an exiat to the flat for sleep and a shower and Andrew's phone rang. It was the ITU doctor who is coming to fetch me - he's in Dubai!!! And we will meet him tomorrow morning Brisbane time!!!!
Its really happening!
Meanwhile I have been undergoing a battery of tests in preparation for my flight so I'm very busy. For some reason there are also a lot of medical students floating around who want to diagnose me (last chance to see a weird case?)
The preparation for travel continues during tomorrow. Kate is flying home from her "hospital visiting holiday" tonight - we will miss her loads! She has been such a tremendous help and indeed she arrived just as I turned the corner. It is conceivable that the two were not unrelated!
Anyway I better report back to the ward otherwise they'll deport me rather than repatriate me!!!!
Lots of love
Debbie Andrew and Kate xxxx
Sent from my iPad
Status update Wednesday 18 September
18 September 2013
Dear All
Flights have been booked. Assuming no medical changes we will fly home overnight Sunday and arrive in the UK on Monday lunchtime. Yippee.
After that there's not much of interest to add in today's update. Blood test results were mixed with some of the liver function tests a little bit worse but our consultant was happy to see another reduction in INR (blood clotting time).
The process now is the medical equivalent of wrapping Debbie in cotton wool (which includes exercising) to make sure we get the flight, and putting together a package of all the information and materials that will be needed in hospital in the UK.
Kate is having an excursion day today, going up to the Coast, so we have not seen her since early morning, but she will be back this evening, and she leaves tomorrow evening.
Love to all
Debbie and Andrew x
Sent from my iPad
Status update Tuesday 17 September
17 September 2013
Dear all
A short update today. The three of us had a lovely lunch in a delightful fish restaurant in an area of Brisbane called Riverside which, perhaps not surprisingly, is on the side of the Brisbane River. We all enjoyed it and the food was delicious. Although Debbie found it tiring, she is pushing herself and doing more each day.
No news yet on flights home, which we are finding highly frustrating. And last night's thunderstorm (and in Debbie's case her decision to stay awake until midnight watching an old episode of Waking the Dead) meant we all had a poor night's sleep.
And no blood tests today so no results to report.
I hope we will have more (good) news soon.
Love to all
Andrew, Debbie and Kate x
Sent from my iPhone
Status update Monday 16 September
16 September 2013
Dear all
So the big news of the day is ... it's raining. Mind you rain here is not much like rain in England. Andrew considered buying a coat or an umbrella but concluded he need not. The rain wasn't cold and seemed to dry very quickly (even though the weather is also cooler).
Today's blood numbers showed a fall in the Bilirubin level. It didn't look like a huge fall but Dr Mohammad "bounded" over to tell Debbie. The doctors are still not using the words "recovery" or "getting better" but they seem almost to be radiating optimism.
They're now starting to redo all the tests they've done to satisfy the various constituencies (airline, travel insurer and Royal Free) that Debbie is safe to fly, and while we've had no confirmation yet we think they're all still working towards Sunday.
Tomorrow we're hoping to take Debbie out to lunch in a restaurant on South Bank. Exciting.
Love to all
Debbie, Andrew and Kate
Sent from my iPad
Status update Saturday 14/Sunday 15 September
15 September 2013
Dear all
For those of you who were fasting yesterday we hope it went well. In Brisbane the fast ended at 18:14 so there were some advantages for Andrew in being here.
Debs is spending a lot of time today at the apartment. She has had a lovely meal cooked by Kate and is settling down to a snooze in a proper bed for the first time in five weeks.
No blood test results today - yesterday's were the same as Friday's. We are waiting for medical clearance from the airline and confirmation from the insurance company but at present they have indicated that we will be flying next Sunday. This can change without notice so nothing is fixed until the doctor and nurse actually fly out. We are just waiting to be told and are trying not to get stressed.
Kate is doing some site seeing and hopefully we will get to do some as well and/or go out to lunch - after all the strap line of Brisbane is "home of the long lunch".
It's now Spring in Brisbane so the weather has noticeably changed this week from hot to hotter.
Lots of love
Debbie, Andrew and Kate x
Sent from my iPhone
Status update Friday 13 September
13 September 2013
And what does Friday the 13th bring?
It's 9.30am Brisbane time ..... We are sitting chatting ......
Well, in bounds the doctor all smiles.
"This is our window" she proclaims. "I've made the phone call"
We sat there puzzled. Are we hearing things?
"YOU'RE GOING HOME DEBS!"
So ..... My INR is 1.9 (Billie is still floating along high) and this is an important factor. The steroid dose will remain the same and I will hopefully be flying home towards the end of next week (if my body behaves and there are no infections etc).
So now are in the hands of the insurance company (again!) (Jonathan watch out!)
At the moment we're all finding it hard to take in - but to be honest we're quite enjoying it!!!!!
So there's our news.
Lots of love
Debbie, Andrew and Kate
PS for those fasting, wishing you g'mar tov and well over the fast
Sent from my iPad
Status update Thursday 12 September
12 September 2013
Dear all
Ok. I was wrong. 'Exciting' things do happen around here! I got a 2 hour exiat!!!!! The aliens abducted me! I escaped!!!!!!
Andrew and Kate stole me and took me to their flat!!!! The most important to note from my point of view was that it was really hot - and I haven't felt the midday sun for 5 weeks! I also got dressed in real clothes? It was great. I saw people and shops! I went to the flat (picture to follow later), had a bloody good shower with privacy, a hair wash and then sat on the balcony watching birds.
I was exhausted when I got back. I had a nap and then I had volunteered to be a subject in a 4th year med school exam. Aren't I a good woman?
This was the best day I have had since arriving in Brisbane.
So what next? I'm being let out for lunch over the weekend. And I may get a day to lounge around the flat. I may even go shopping!!!!! Maybe they will fly me to the moon!
I think the docs are testing me as part of my repatriation. But no word on that yet
No blood results today (rest day!)
Lots of love
Debbie x
PS: if people are trying to ring or text my phone and not getting any reply it's because there's something weird with it (or the roaming).
Sent from my iPad
Status update Wednesday 11 September
11 September 2013
Dear All
Debbie seems to be on good form today and has been doing her exercises diligently. The food seems to be agreeing with her more which may be helping.
Liver function test results today were static while blood sugars seem to be improving.
The consultant came around after lunch and seemed happy. She says that tomorrow Debbie will be allowed out of the hospital for an hour or two. This evening we are going to take her on an expedition to the ground floor and tomorrow she's coming to the flat.
Some time next week (subject to improving blood test results) the consultant expects to restart discussing with the Royal Free whether and when Debbie can go back to the UK, which will still be direct to the Royal Free, initially for assessment by them.
So watch this space.
Love to all
Debbie, Andrew and Kate x
Sent from my iPad
Status update Tuesday 10 September
10 September 2013
Dear all
Andrew's report-
No blood tests today so no results to report. Debbie said she had felt better than she had for months yesterday but today isn't as good. The Physio got her on an exercise bike and concluded she is fit to exercise. So we have to keep her active [Debs: my ticket out of here?????]
Food is still an issue, and there was no kosher chicken at Coles in Carindale - shame as this is just about the only place in Brisbane that sells kosher (frozen) meat. Bizarrely they did have veal though. Kate and I were invited out for dinner last night and the doggy bag we brought back made a gourmet lunch.
Liver doctors meet on Wednesday and Friday. No indication of whether any decisions to be made about Debbie either on Wednesday or Friday. Today we had a visit from the most junior doctor alone - an indication that Debbie is no longer regarded as the sickest liver patient on the ward, but that may just be because they have had a few really ill liver patients in this week.
Debbie's report-
Everyone is well at home - the Skype conversations with kids are necessarily short but it's great to catch up on school news etc. Gemma is doing a stirling job at home (thank u Gem!) - she seems to be catching up on her sleep too! Lucas seems very at home which is a pleasure to see!
Kate is finally skyping Jonathan (she is struggling with the time differences - it is very confusing for us!)
That's it for now folks!
Lots of love
Debbie Andrew and Kate x
Sent from my iPad
Status update Monday 9 September
9 September 2013
Dear all
Sorry that today's update is late. Both children are now back at school and we have just spoken to them on Skype. Attached is a photo of them in school uniform.
Blood test results today showed another small improvement. They are now the best they have been since Debbie got sick but of course they still show that Debbie's liver is nowhere near working as it should. Still the doctors described them as "good" today so they must be pleased with progress.
Debbie has decided she is a "tea snob" and can only drink tea using a bone china mug and "Yorkshire Tea" tea bags. We now have both and Debbie is happier. Meals not yet sorted but the dietician has been and they're trying a few tweaks to the computer to see if that improves the selection available. In the meantime Kate has been cooking and tomorrow we're going on an expedition to the kosher food emporium to pick up some more inspiration.
Debbie has also been chirpier today, even in the morning which is usually when she is most tired. This is despite a bad night due to other activity on the ward.
No blood test tomorrow. Alternate days off!!!
Love to all
Debbie, Andrew and Kate x
Status update Sunday 8 September
8 September 2013
Dear all
So after yesterday's long update, authored by all three of us, and with no blood test results to report on, it will be a challenge to provide much content today. In addition some of you may recall that nothing happens on Sundays in Brisbane hospitals.
Kate and Debbie have been discussing psychology so Debbie's mind is obviously working, and after multiple visitors morale today is also high.
Food today was a bit more substantial than yesterday but they haven't yet got "high protein". Meeting with dietician needed on Monday!!!
Election result was "called" no more than 45 minutes after polls closed, but Tony Abbott doesn't get to meet the Governor-General, to be asked to form a government, for about a week. Admittedly it took that long after the last UK general election but that was in different circumstances, so in a UK context, where the new prime minister typically moves into No 10 after kissing hands with the Queen all within 24 hours of polls closing, this seems very slow. The hospital was a polling station and here they count at the polling station, so we could watch them counting votes. With a PR system, voting is very complicated, and by law the ballot paper cannot be more than 1.2 metres long! (So with more candidates the printing has to be very small!!). To be valid you have to number every candidate on the ballot paper (and there were 11 in this constituency) in order of preference - the only relaxation is that you can omit a number against the last candidate. And then although there were senate elections yesterday, for just over half the senate, most of the new senators do not take office until 1 July 2014.
So neither Debbie nor Kate has anything further to add, so this is close for today.
Lots of love
Andrew on behalf of Andrew, Debbie and Kate x
Status update Saturday 7 September
7 September 2013
Dear all
So today is a big day in Australia - it's Election Day! In my life the arrival of Kate had been my big day! It's fab to see her!!!!!! Apparently I am more yellow than she imagined and I look like I've had a bad spray tan!
She came armed with various English things and pressies from people - thank you so so much! Thanks especially to mum for the gluten free ginger cake!!!!! Yum yum yum.
Kate has observed that Andrew and I are not agreeing about the meaning of bloods results etc and things that the docs say. I realised that this was happening but not really the extent. Sorry for the confusion folks but I think even the docs don't know either which leaves rather a lot of room for interpretation.
On that note billirubin up today, INR down. I will not comment!!!!!
Over to Andrew!
Apparently providing more than two days' kosher food is a problem for Queensland Health, so lunch today was two poached eggs and tonight dinner is an omelette. And there's no-one to take this up with further until Monday. So they're still struggling to provide Debbie with her required high-protein diet. So supplementing again with food parcels and soups. Debbie is doing her exercises (under Kate's supervision) which is good but tiring.
Polls have now closed in the election. Networks seem to have called it for Abbott, but the size of the majority is what is of interest (ish) now.
And now a guest turn - over to Kate:
Hello everyone, they've stolen my best observations (spray tan and differing interpretations). On the last point though I'm pleased to see that Andrew has compiled the day-by-day bloods on an excel spreadsheet to track trends. Overall this shows INR coming down and bilirubin wobbling about all over the place.
I've just watched Debs do her exercises: apparently anyone who pleases the Physio goes home! So she's highly motivated. So hopefully she's going to beat me home.
So that's it from the three of us. No blood tests tomorrow so expect only a limited medical bulletin.
Love
Andrew, Debbie and Kate x
Sent from my iPad
Status update Friday 6 September
6 September 2013
Dear all
Today the Physio has been. I told her how pleased I was to see her because it's a sign I'm going to get out. Everyone else has been released about a week after she's been to visit (fingers crossed but no promises!)
We also had a visit from the local (Greenslopes) rabbi, who came to see me and blow the shofar for us both.
After the disappointing INR numbers of the last couple of days, today's INR was back down and bilirubin unchanged. Doctors have decided I only need blood tests every two days. They have also decided that I need to be doing some (light) exercises, both in bed and walking round the ward. Something now that I can do to help me recover. They're also putting me on a high protein diet (once they can find a lactose-free supplement!), and reducing the steroids a bit more from Tuesday.
The plan is therefore still watching and waiting for the right, safe, opportunity to fly me home.
This time tomorrow Kate will be here. We are looking forward to that!!!
Love to all
Debbie and Andrew x
Sent from my iPad
Status update Thursday 5 September
5 September 2013
Dear all
Good yom tov wishes from sunny Brisbane. I hope as you have sat down to your yom tov meals with your chopped liver, pâté etc that you have been thinking of us. My liver continues to underperform ie numbers are the same. Whenever I ask about anything they just tell me I am really sick (I've finally worked out that it’s sick as in poorly not as in vomit! Little words lost in translation!) So we're waiting for my liver to decide it wants to get better. All the canulas have gone which is more comfortable, but they've left lots of bruises.
Andrew has enjoyed a new shule in Brisbane, interesting company and Algerian food.
We are looking forward to Kate joining us in Saturday and just hope she doesn't find it to boring (or too "exciting"!).
The kids and Bernice and Jerry seem to have a hectic schedule over the next few days - thank you everyone for looking after them we are very grateful to you all.
Lots of love
Debbie and Andrew x
Sent from my iPad
Status update Wednesday 4 September
4 September 2013
Dear all
Here is my Shana Tova (Happy Jewish New Year) photo. Kosher hospital meals.
Today's blood tests mixed again - one more day on anti-biotics. The big news of the day is that my sister Kate is coming out to be with us. We're very much looking forward to welcoming her to the PAH.
Jacob went back to school yesterday, and they have a busy schedule of meals over the yom tovim. Thank to Jerry and Bernice and all our friends looking after them while we're away.
Wishing you all and your families a happy, healthy and peaceful new year.
Lots of love
Debbie and Andrew
Sent from my iPad
Status update Tuesday 3 September
3 September 2013
So today's news is that there is a bed free in Ward 4E and they're supposed to be coming to fetch Debbie in about half an hour.
No real news on treatment or timings - just more of the same. Today's blood tests were mixed but still seem to be following the trend of static/slow improvement and doctors seem content.
It's been a tiring morning as nurses and doctors (in increasing seniority) tried to get a cannula in for the i.v. antibiotics - sixth time successful. Two more days to go. It's difficult to do soduko puzzles when you cannot bend your arm.
Missing everyone at home. Wishing you all Shana Tova u'Metukah.
Love
Debbie & Andrew
Sent from my iPad
Status update Monday 2 September
2 September 2013
Dear all
So the highlight of Debbie's year - a ******************** won Australian Masterchef.
Another uneventful day today. Bloods stable and heart monitoring removed. The (liver) consultant seems pleased with matters so far but it looks like they want to keep Debbie here for at least another ten days or so.
We're getting into a routine, although at the time if writing she is still waiting for a bed to become available in Ward 4E (with the girls).
All the best
Andrew & Debbie
Sent from my iPhone
Status update Sunday 1 September
1 September 2013
Dear all
Nothing happens on Sundays in Brisbane hospital. Still true this week. Debbie is still on the cardiac ward. Last night they removed the monitoring equipment. Today they restored it. This does seem to be very cautious care as there has been no recurrence of Friday's excitement.
Blood test results today were fine (INR static and bilirubin down). Liver doctors still describe her as at least stable or even getting a bit better. But treatment plans are not changed on a Sunday and we haven't seen the liver consultant today.
Debbie is enjoying reading The Australian but is struggling with the sudoku. For those of you not in Australia, there's a general election campaign going on, with a Federal Election on Saturday. We were hoping to catch up with the results on the Internet from the UK but it looks like we'll be following on TV with the rest of Australia instead.
Missing you all
Andrew & Debbie
Sent from my iPhone
Status update Saturday 31 August
31 August 2013
Dear all
Sorry that today's update is late. No real news today. Blood test results were broadly stable (one slightly up one slightly down). Debbie has been temporarily moved to a different ward for easier monitoring (instead of waking her up every hour). The patients in the room on this ward aren't as friendly but the ladies on Ward 4E want to lead a breakout to come down and visit. Mind you on this ward visitors are allowed to make tea/coffee for themselves while on 4E it's patients and staff only.
Dinner in the hospital today was ... nothing. Just stewed apple for desert. Thank goodness for the supplies of gluten-free dairy-free soups I had laid in in the patient fridge.
We've spoken to the children on Skype each morning (UK time) and they seem really happy to be home. And Andrew has been able to spend lots of time in the hospital with Debbie.
All the best
Andrew & Debbie
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Status update Friday 30 August
30 August 2013
Dear all
Today's news. Blood test results continue to improve. Unfortunately Debbie may have picked up a minor infection which caused a little bit of excitement this morning. They now want to put her on antibiotics for a week before thinking about letting her fly home.
The Rabbi came round this afternoon with challot, honey cake and his shofar. Looks like we're going to see Rosh Hashanah in Brisbane.
All the best.
Andrew & Debbie
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Status update Thursday 29 August
29 August 2013
Dear all
So the children got home safely and seemed happy to be home. Children we miss you.
Lots of tests this morning in readiness for transfer back to the UK but we've had no results yet. Processes are therefore in hand to get us back but we still don't know when - most likely seems to be next week some time.
Thank you all for your support
Love
Andrew & Debbie
Sent from my iPhone
Status update Wednesday 28 August
28 August 2013
Dear all
So at the time of writing this we know that the plane with our children on board has landed at Heathrow but we have not heard from them yet how the flight went. Thank you in particular now to the Hougie Support Group - Brisbane (and Hong Kong) branch for all your help during the last couple of weeks. From the emails we have seen it's clear that the Hougie Support Group - Radlett and St Albans branches have commenced operations. Thank you to you as well.
The latest news from here is that the consultant now believes that Debbie's liver is at least stable and may be making a slow improvement. She sees this as a "window of opportunity" to send her back to the UK, probably as a medical evacuation on a scheduled flight, and this evening intends to start the discussions with the Royal Free and medevac team at our insurers.
The official description now is "cautious optimism".
All the best
Andrew & Debbie
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Status update Tuesday 27 August
27 August 2013
Dear all
Main news of the day is that the children have now left Australia and should be arriving in Hong Kong in a couple of hours. After quite a long stopover there they will then be on their way to London due to arrive at 06:20.
I wasn't here this morning to see the doctors but Debbie gave me the impression that the consultant is increasingly upbeat. Still too soon to get excited but good that thought processes seem to be moving in a good direction.
Love
Andrew
Sent from my iPhone
Status update Monday 26 August
26 August 2013
Dear all
Blood tests over the last couple of days have been pretty static. Over the week the doctor seems happy that the trend is at least stable, so the plan is to continue treatment for another week and if the trend continues perhaps to start thinking on Friday or early next week about sending her home. Doctor tells us that she's no longer waking up at 3am worrying about Debbie and seemed much more optimistic than a week ago.
While we don't yet have confirmed flights for Alex and Jacob we expect them to be going home tomorrow, arriving in London about 5am on Wednesday.
The Rabbi came round yesterday (while we were watching X Factor) with home-made GF chicken soup, so now Debbie is supplementing hospital food with chicken soup, chollent and mashed potatoes.
Debbie remains in reasonable spirits (her words) but still quite sleepy. She hasn't called herself a koala for a few days.
All the best
Andrew & Debbie
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Nothing happens on Sundays in Brisbane hospital
25 August 2013
Dear all
Bloods are basically the same...... Doc seemed happy at 8am.
Lots of visitors - Mink (v old - yeah! School friend from Leeds now resident in Sydney) Louise (mink's daughter) and Hannah (Mink's niece who is escorting the children home - hopefully on Tuesday). Whilst Lisa was here Pam rang from Melbourne (lovely to here from u chuck!)
So I slept all day!
Here are some hospital selfies - what are they? Kids only answers on a postcard!
Off to the high light of the week - Australian X Factor Live on tv!
Maybe some news tomorrow.......
D x
Sent from my iPad
Update from Saturday 24th August
24 August 2013
Dear all
So sorry that today's update is late and doesn't really include any news. The doctors are continuing to monitor Debbie's blood test results, tweaking treatment from time to time, and we're still hoping that on Monday they will tell us that the trend shows Debbie's liver is recovering.
The highlight of the day was cholent. First Alex, Jacob and I went to the Brisbane Synagogue (lovely traditional building surrounded by huge tower blocks in the centre of the City) where we'd been promised a cholent kiddush. Jacob was invited to lead Anim Zemirot which he did with aplomb. Cholent was excellent and the Rabbi said he'd put some to one side for Debbie.
So after Shabbat he came round with some of his children and a very generous portion of cholent which Debbie enjoyed enormously.
No reservations yet for the children to come home - it looks like confirmation of flights will need to wait for Monday UK business day, but there are now flights held so they should be arriving in London either by BA or Quantas early Wednesday morning.
It looks like all four Hougies will have a hectic social life again tomorrow. If the update is late, or doesn't arrive at all, it will probably be due to tiredness rather than anything worrying.
Thank you all for your support
Andrew & Debbie
Update from Friday 23rd August
23 August 2013
Dear all
Today's blood tests were mixed but the opposite way round to yesterday so while doctors aren't yet ready to call it an improving pattern it is beginning to look like one.
The other important news is that our travel insurance company have finally confirmed cover and are in the process of organising a return home for the children, probably Monday or Tuesday.
Finally the hospital have become a bit concerned that Debbie is being stressed by all the phone / skype calls. We have loved hearing from you with all your good wishes and messages but for at least a few days please can you rely on hearing from us in the "daily update" emails.
With the removal of the travel insurance stress and doctors looking a mite happier our spirits are creeping up - although we are both very tired. We hope that the news over the next few days will improve.
Best wishes
Andrew & Debbie
Update from Thursday
22 August 2013
Good morning all
Today's blood tests mostly showed an improvement although one of the two important ones has got worse. The doctors described it as "lagging" so here's hoping it reverses tomorrow. The other major one got better and everyone (not medically qualified) thinks I'm looking less yellow. The medics haven't commented.
Andrew's challenge for this morning (thanks Sharon) was to find knitting needles and wool and since he is typing this paragraph I can report that he met the challenge.
Debbie's challenge was to say "Stuart Broad" at every opportunity but this doesn't seem such a good idea any more.
Debbie is a bit tired today and is now knitting lying down in bed.
Still no confirmation from AXA that they're covering us - they've referred it to the underwriters, which I hope is just a boring routine. We are now hoping to send the children home over the weekend or early next week so they have time to prepare for school.
Love to all
Debbie
Sent from my iPad
Update from Wednesday
21 August 2013
Dear all
No real news yet!
Today's bloods showed an improvement in most fields but its too early to see if this a pattern as yet. For the first the time the dr sounded slightly encouraged. Prayers / thoughts please to get these steroids working!
Today's highlight so far - going outside! However it was so hot we had to come in again! These Brisbane winters - I don't know. Thank you to those of you who made this my goal for the day!
Any suggestions for tomorrow?
No poetry today just a photo - it's a real one and was v smelly (according to Alex)
Update from Tuesday
20 August 2013
Dear all
So the steroids were started yesterday. The plan is to see how Debbie's liver responds (through blood test results) over a week and then assess whether she's recovering enough to go home (by medevac). Today's results showed no improvement but they were not expecting any reaction just yet. Now hoping and praying for improvement to follow.
Thank you all for your continued messages of support, email and calls.
All the best
Andrew
Update from Monday
19 August 2013
Well at last some decisions!
I have been placed on a cocktail of steroids - as so little has changed they decided that there should be some intervention. They aren't sure what the outcome will be but fingers crossed it will make me well enough to travel ( via medivac perhaps ) - I'll keep you posted!
In the meantime I have been concerned by the increasing use of vampire power in the Queensland hospital system. I include my thoughts here (any psych type people out there these thoughts are not Hepatic encephalopathy induced! Other things have been but not the vampires or koalas!)
🐨 V 👨 (koalas versus vampires)
In the bowels of the hospital
Deep under ground
Live the gruesome Australian vampires I'm sure
There is talk of jugulars and platelets, red cells and white
I was taken down there last Thursday and something bit my neck (ouch!)
They kept saying "get it from her jugular"
So I knew I was right
In the bowels of the hospital deep underground
They claim it was a biopsy but I'm not so sure
they were feeding on my blood and taking liver for their tea
My neck is very sore and the holes were quite big
But they've healed quickly which laid suspicion in my head
In the bowels of the hospital deep underground
Then there are the early morning blood tests
She sounds a little bit German
But I think she's from Transylvania
and is replenishing her stores of my blood
In the bowels of the hospital deep underground
The vascular test on my neck was clearly a ploy
Just to see if my blood was good enough for them
So last week I was a koala and this week a vampire victim - a koala vampire?
Who will win this epic Australian battle?
In the bowels of the hospital deep underground
Sent from my iPad
Update from Saturday
17 August 2013
Dear all
There's not a lot to report today. The Rabbi came to visit yesterday and brought us challot, and some St Albans friends on the way home came to visit and brought wine, so we were able to make kiddush in hospital, and then Alex, Jacob and I went out to eat with them, which we enjoyed. Today Debbie had a local visitor (originally from England - more Jewish geography), and the kids and I met up with relatives of one of my work partners. Someone asked Debbie if she was getting bored - so far she has 'phone calls, emails and text messages as well as the odd visit to keep her entertained. She still gets very tired but with all these contacts (and please keep them up) she's had little chance to be bored so far.
Latest blood test results were still not good enough to be called "getting better" but she doesn't seem to be getting any worse and the doctors are content to keep observing for now.
So still no idea when any of us might be coming home.
Thank you all for your support and good wishes.
All the best
Andrew
Update from Friday
16 August 2013
Dear all
Thank you all for your continued support and messages of support which are a great source of comfort to us. Debbie's spirits today have been good.
The biopsy test results today were inconclusive but with some improved blood test results the consultant seems happy to wait a day or two to see if progress continues before starting any significant treatment.
The support network has been kicking in here which is great; still no idea how long we're going to be here.
All the best
Andrew
Sent from my iPhone
Update from Thursday
15 August 2013
Latest news from Brisbane: Debbie had her biopsy this morning. It went well. She's been very groggy having had plenty of valium but was beginning to be a little more awake when I left her this evening.
No test results yet but they are expected tomorrow. Once the medics have those results they should be able to tell us the treatment plan.
In the meantime the children and I have moved to Brisbane. Lovely though it was staying in Eumundi with Debbie's wonderful friends Sue and David, being here in Brisbane somehow feels like progress, although it's also quite lonely. We've made contact with some siblings-in-law of one of my partners which may provide some company and activities for the children this weekend.
Hopefully we will be able to pass on something positive tomorrow.
All the best
Andrew
Update from Wednesday
14 August 2013
So the latest news. Debbie has loved receiving all your calls, messages and texts, which really help to keep her spirits up.
As I write she's being transferred to the Princess Alexandra Hospital in Woolloongabba, Brisbane for the intra-jugular biopsy, but as she was leaving another test for autoimmune came back positive. If this is confirmed by the biopsy then they can start treatment.
We're going to transfer to Brisbane, probably tomorrow, as they're not expecting to send her back to Nambour.
I'm not fully au fait with the technology but Jonathan used Skype to call my Australian mobile today. For those that understand this, Debbie now also has an Australian mobile - +61 488 226 018. She's still learning how to answer it but hopefully she'll work that out.
A further update may follow when Debbie has settled in.
All the best
Andrew
Sent from my iPad
Re: Update from the yellow one in Queensland
13 August 2013
BTW my room number is 29
And I've been bored in the night so I have writing silly poems!
Here's one
D x
A visit to the doctor (Australian style)
Whilst on holiday in Aussie
I started to feel very mozzie
My skin had gone all scruffy
And my ears soft and fluffy
I had grown clawed fingers
And rough paws like zingers
I had started to stink
Like a great big mink
Eating eucerliptus had become rather fun
And my poos had started to run
I started to sleep 20 hours a day
And yawned so much I just wanted to eat hay
So off I went to to the Australian doc
Who gave me a very large shock
It seems Mrs Hougie
That you have turned into a pougie
Better known in Dawala
As a koala!
The prognosis is quite good
If you consume this pud
We'll have you right as rain
By eating sugar cane
Watch out , don't eat any zander
Or you'll turn into a panda!
So I went home from Aus
With a cuddly toy called doz
and a creature from Dawala
Better known as a koala!
Update from the yellow one in Queensland
13 August 2013
Dear all
Once again thank you all for your good wishes, words, love and thoughts - it is all much appreciated down here.
Basically there is no news except that I am still waiting for test results. I am having CT scan today.
I am having technology problems as there is no wifi ( so no skype, viber, facebook etc )and I have 4G but its all expensive.
So I will give you the land line that is next to my bed
+61 7 5370 3300
There is a 9 hour (plus) time difference.
I'll be in soon.
Debs x
Cruck in Queensland
12 August 2013
Dear all
Thank you all for your good wishes - they are much appreciated.
This is where I'm up to.
I have some kind of hepatitis. To say it in Australian 'you're really sick darlin'. They have to do various blood tests and scans to find out which I have. This could include a liver biopsy in a hospital in Brisbane. It is not until this point (could be 3 or 4 days!) that they can treat me (with steroids if is autoimmune hepatitis ) and then check that the treatment is working.
The upshot is is that I am not fit to fly for at least 2 weeks! It could be longer but we don't know that yet.
Because of this we have no idea what we are doing or when we are leaving! We just have to wait and see. Luckily my amazing friend Sue has kindly leant us her house! So least Andrew and the kids have a base.
We are starting to work on contingency plans that may involve Andrew and the kids flying back and me flying home with a buddy (mum, dad or Pam(fab to talk this evening Pam!)
Thank you to those sending gossip - I will try and to everyone but they put us to be v early!
Thanks everyone - I'll keep you posted by email
Lots and lots love
The cruck yellow one in Queensland!
Debs xxxx
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