JUSTINE NOW HAS HER NEW PHONE BUT IT PROVED IMPOSSIBLE TO RECOVER ANY OF HER STORED CONTACT PHONE NUMBERS FROM HER BROKEN PHONE.

COULD ANY OF HER FRIENDS AND THOSE WHO HAVE BEEN IN CONTACT WITH HER SEND HER A TEXT MESSAGE TO HER PHONE GIVING THEIR CONTACT NUMBER/S SO SHE CAN KEEP IN TOUCH.  SHE HAS MANAGED TO RETAIN HER ORIGINAL PHONE NUMBER BUT DOES WANT TO KEEP IN TOUCH AND HAS NO OTHER RECORDS AVAILABLE TO HER.

19th June 2006 4.15 p.m.
We have spoken with Justine today and she informs us that she feels good today.

18th June 2006 3.30 p.m.
Justine is holding her own and apart from suffering from the heat and being unable to sleep last night as it was so hot she is doing well.

She has had some visitors today but found it hard to cope as several people turned up at the same time and she cannot cope with lots of people as it is very tiring.  She was still pleased to see everybody.

She has managed to walk just outside her room as all her tubes connecting her to oxygen, pumps etc  are quite long.  She can just reach the nurses station and that is the limit of her umbilical cords (tubes).  In a way it is rather like astonauts who are limted in movement by connections to their spaceships life support systems.

16th June 2006 midday
It seems that actually Justine had another bad day yesterday after contact had been made with her.  Her Consultant popped in with his team and it seems that they had been monitoring her blood following the operation on 16th February her blood has devoloped excessive anti-bodies.  He advised that if a patient was presented to them with this type of blood they would not accept them as a candidate for a transplant.

The reason being that with so many anti-bodies this could cause chronic rejection of the donor lung/s.  However, following  the meeting yesterday of the Transplant Team they have agreed to keep Justine on the Transplant list.  

However, to deal with the rejection they will have to apply the strongest anti-rejection drugs they have available ands she will have to have these permanantly.  This can cause long term problems and effect the kidneys.  

Normally they give these drugs first and then reduce the dosage once the transplant organs are stabilised but they positive side to this is they do know what problems they are going to encounter after the transplant is performed and can therefore deal with them immediately.  

So it is great that she is still on the list and it is hoped that another transplant opportunity will happen soon and everybody is confident that it will be 3rd time lucky.

15th June 2006 5.15 p.m.
We have spoken briefly with Justine this morning and she is in good spirits today and we will have a fuller report tomorrow after she has been seen by her family. 

14th June 2006 midday
We have spoken with Justine and it seems she had another drama overnight as her drain tube became blocked.  In order to rectify this the drain was clamped and cleaned and she also had to cough heavily to help clear all blockages.  Following which she was able to breathe again normally.

She managed to eat all  of her Burger last night except for one mouthfull.  She is feling fine now. 

We have also corrected the entry from yesterday to read  more accurately recording the events and Justine has approved this corrected entry.

14th June 2006 - 9.30 a.m.
We now have the full picture from Justine’s bad day yesterday. Justine was we are told very anxious about what was happening yesterday and her difficulty breathing. It was established that the first drain although inserted successfully was not working as unfortunately it was sitting just on the outside of her lung rather than ending up inside as needed.  That was not known at the time we posted yesterdays bulletin.

13th June 2006 - 5 p.m.
Well today has been another down run on Justine’s roller coaster.  When she awoke this morning she found that the chest drain tube inserted into her body was almost out of her body.  She tried to push this back into her body (clearly ill advised) but it did not stay located and nurses and then a doctor attended to try to temporarily hold in place.

11th June 2006 - 5 p.m.
Just when you think all is well news reaches you that things for Justine are still a roller coaster of ups and downs.

See her diary where all is revealed.

25th MAY 2006 12.30 p.m.

9th MAY 2006 - 7 p.m.

Justine has had another good day. We will be posting an update from her Consultant tomorrow and her next diary note which she has just written but it will not arrive in time to be added today.

8th MAY 2006 - 7 p.m.
Justine continues to stay stable and she was again in good spirits all day.

7th MAY 2006 - 11.00 a..m.
Justine has had another good few days.

Yesterday she manged 2 sessions on the exerice bike (a Tunturi machine) one of 40 turns and another of 42 turns making 82 in all another record for her.  Is there no stopping this girl!

She has been eating heartily and even had ice cream and fresh raspberries for desert last night.

She is a fan of The Apprentice and eagerly awaits the outcome of the final one Wednesday - who will Sir Alan Sugar fire and hire?   She also stays glued to TV for the Strictly Dance Fever program hosted by Graham Norton every Saturday evening.  These programs will mean nothing to those overseas but they have become both cult and compulsive viewing and will be missed when they come off air.

Justine is breathing well using a face mask but still needs the suction pump to prevent her lung collapsing.   She also manged for a while while eating just using the nasal spectacles (canulas).

5th MAY 2006 - 8.00 p.m.
Justine has had another good day.  Fuller details will be posted tomorrow.

4th MAY 2006 - 9.00 p.m.
Justine had problems breathing yesterday without the suction pump and eventually it was re-connected in the evening.  She then managed to breathe normally and her oxygen saturates returned to the high levels they have been at for some weeks now.

It seems that the discussions from a few days ago were long term plans of what the consultant would like to see happen as ideally they would like to return Justine to a level of fitness which would allow her to return home and be removed from the risk of further Hospital infections.

She had a good day today and had 2 cycling sessions 30 turns and then another with 32 turns which has beaten her record.

3rd MAY 2006 - 5.30 p.m.
Justine had another good day yesterday.

She managed a short walk today with the help of 2 nurses but found she was breathless.

Her consultant has indicated that they would like to remove the suction pump attached to her chest drain as that cannot be left connected indefinitely.  They would also like to prepare her to return home but the timing of that is not yet known. It could still take some weeks before she is fit enough and all the necessary support facilities have been re-instated.  

They are also talking about carrying out the operation originally aborted when she had to have the major surgery on 16th February 2006 whereby they pump talc in to help stick the lung to her chest wall.

They also want to list her for a single lung transplant as that will increase her chances of having a donor organ as apparantly availability of double lungs are quite rare.

Nothing definite has been decided but nevertheless Justine is extremely anxcious about returning home in her condition as she is frightened that her lung will go down again.

We have just heard that the suction pump has now been removed.

1st MAY 2006 - 4 p.m.
Justine had a harder day yesterday as she found it a little harder to manage her breathing.  She did improve her cycling and made 35 turns her best to date.

She has managed for half a day so far without the mask and just breathing using the canula.

As she has posted a diary entry rest of news can be found there.

30th APRIL 2006 - 1.30 p.m.
Justine had another good day yesterday. She is managing to each much better and is building up her strenght and hopes to put on some more weight over the next few weeks.

She is still managing well on the face mask.

She hopes to be much improved over the next few weeks so that he can start to have visitors.

29th APRIL 2006 - 11.00 a.m.
Justine had another good day yesterday. She probably eat more food than on any day so far.  She had a cooked breakfast and lunch and an evening meal followed up by a half slice of strawberry gateau.  She tells us that she has now put on 2 lbs.

She also had 2 sessions on the exercise bike and managed 15 rotations each time making a total of 30 which beats her best to date of 20 turns.

She had another cooked breakfast this morning and so far appears to be making excellent progress.  She is managing very well on the face mask.

She still has a drain inserted which is working on suction as her lung is still leaking.

26th APRIL 2006 - 8.30 p.m.
Justine had a really good day today.

Her tracheotomy tubes were removed but a cap has been left in as a precaution in case it needs to be re-inserted.  Justine has been on a face mask all day and is now able to talk and is starting to eat larger meals.

Milestones all round after a terrible weekend.  She is even wearing some normal clothes and managed a session on the exercise bike (20 pedals round).

She even managed to eat some home made soup (chicken) brought in by her mum before she tucked into a hearty evening meal.

She has written another entry in her diary which has just been posted.

25th APRIL 2006 - 7.30 p.m.
Justine had a second pneumothorax on Sunday, however the suction pump was used again and she is ok now in that respect.

Yesterday she managed to eat 2 full meals and was back in positive mode. Today she has been able to breathe for a short while using a nasal cannula which is the system that provides oxygen through the nose and the system Justine had been using until she was taken ill earlier this year. 

Justine has lost 1 stone in weight over the last month which will need to be re-gained. Justine is having regular physio sessions every morning.

22 APRIL 2006
After another bad night Justine had a small pnemothorax today - the effect of which meant she was struggling to breath. A suction pump was used and she is ok now. This followed another difficult nights sleep.

20th APRIL 2006
Justine had a bad night last night and was unable to sleep or eat breakfast or lunch. However, she did manage approximately 30 meters of walking. The trachetomy has been changed to a lower sized mechanism (from size 9 to 6) and so, although with difficulty as it is very tiring for her, she is able to vocalise some speech. Justine sends her love to everyone and as always desperatley wants her new lungs.

18th APRIL 2006 10.30 a.m.
We can report that Justine made good progress again yesterday.  She has managed to eat a hearty evening and for the first time managed to finish her main course.

The outreach team have in mind stepping up the pressure and they may try to remove the tracheotomy this week.  They want to start eliminating any extra sources of infection and the plastic tubes inserted can be a breeding ground for germs and cause infections.

We have also learnt that one of the donor lungs which became available for transplant on 14 April (which sadly Justine was unable to receive due to her infection (see below)) when inspected was unsuitable for transplanting.  The recipient therefore had a single lung transplant.

Justine has wrote an entry last night for her diary which has been added today.

17th APRIL 2006 4.30 p.m.
We can report that Justine made good progress yesterday.  She has managed to eat a good evening meal Spaghetti Bolognese and trio of ice cream to finish (Vanilla, Chocolate and strawberry).

More importantly she has been seen by the outreach team looking after her and they have now reduced the volume of air support so that Justine can almost breathe on her own.  They want to get her off the tracheotomy and hope to achieve this over the next few weeks.

Justine had a fairly good night and had managed to receive a few visitors today.

Her chest infection is clearing up and seems to have responded to the anti-biotics.

Overall the outlook is good and a far cry from the unfortunate state of she found herself in last Friday when she lost the opportunity for a transplant.  Justine has got over the disappointment and remains very positive.

16th APRIL 2006 11.30 a.m.
We can report this morning that Justine had a better day overall yesterday and in the end has managed without intravenous feeding.  She has started to eat solid (real) food again.

She had a good nights rest and was got out of bed early by the nursing staff.  Whilst she still has a temperature and chest infection, woke up early and was sat up in a chair by the nursing staff.  The good news is that her infection does now seem to be responding to the anti-biotics which have started to kick in and do some good.

She was seen by the medical team this morning and they are hopeful that her chest infection will clear up in a weeks time.

Justine is feeling much better in herself and as always fighting back.


15th APRIL 2006 8.00 a.m.
We are sorry to report that following the blood tests carried out on Justine they found that her infection was increasing and therefore they could not carry out the transplant. All the nurses looking after her had their fingers crossed that the tests would have been okay.  This was not destined to be Justine's day.

Justine had this explained and the fact that as she had an infection which was rising not decreasing - the Transplant Team at Harefield could not put her life at risk.  The reason for this is that after a transplant you have to take have the body's immune system suppressed to help prevent rejection of the donor organ.  The bodies immune system would detect an enemy in the body and try to destroy it (part of the human anatomy defense system). To prevent this you have to take anti-rejection drugs for the rest of your life.

Justine has been waiting over a year now for a chance of having a transplant and this was the first time she had had the call that they had a match and had all been well she would have had the transplant by now as it would have been done last night.

This is a blow as she was 100% a few days ago and doing so well and she is naturally very down.  She did not want to be left alone yesterday evening.

She had been unwell over last 2 days and yesterday was totally off her food and did not eat.  Last night they were re-inserting the intravenous tubes to feed her on the drip to help keep her strength up.

Justine has been talking more recently of the fact she is now aware her time is running out and it is understandable how dissapointing this is for her and her family, fiance and friends.  Justine's need for new lungs is extremely urgent

The next person on the waiting list was called in to have a transplant. Even if one does get the call the surgeons still have to inspect the donor organs to make sure they are 100% as they will not carry out any transplant without checking due to the overall risks of the operation.  It is often the case that even if you are 100% fit and get called in that the operation may not proceed.  We are informed it is rare to have the luck to get called in and have the operation first time round and most patients get many aborted calls.  The records is one patient had come in 13 times before having a transplant.

On the positive side it does demonstrate that Justine had clinical priority as her need was the greatest and that has been explained to her.  She has been told that she must fight the infection, get rid of it and that she is in the best place in the world and that her day will come.  Nevertheless a biyter blow and a real downer to moral but we are confident that Justine's spirit will recover and she will bounce back and fight on.

It is clearly more than unfortunate that she has contracted yet another infection whilst in Hospital and although great care is taken she is more prone to catch an infection due to her weak state and the fact she has plastic tubes in her body.  The chest drain, 
tracheotomy and now feeding tubes.


14th APRIL 2006 6.15 p.m.
We have just heard from Harefield that the transplant co-ordinators have made the first alert call to Justine that a pair of lungs may be available this evening.

They have taken samples of her blood and they are doing tests to check as to whether her infection will or will not prevent her having transplant.  This will take about 30minutes to 1 hour.

In the meantime the lungs when they reach Harefield will have to carefully inspected by the surgeon in charge of the transplant team.

Quite often call outs are made and at the lats minute they find that the donor lungs are not fully compatible or that they are not 100% perfect.

In this instance the unknown is whether or not her current infection is going to mean she looses the chance even if the donor lungs are compatible.

If all is in order then the transplant will be done this evening and overnight.

As her family are now en route to Harefield and her fiancee is already with her we may not be able to provide any updated information for a while.

14th APRIL 2006 11.45 a.m.
We were unable to provide an updated report yesterday and we apologise for that.

Justine had a very bad day yesterday and was not feeling at all well.  It has now been confirmed that she does have a fresh infection and she has been started on anti-biotics.  She had fresh X-Rays and this showed that the pneumothorax does not appear to have increased in size.  (We were not aware that she still had a pneumothorax and this news did come as a surprise to Justine.  We will have to investigate this further)

Yesterday evening she was having difficulties breathing and did get distressed.  She did not eat much and declined to have a few sips of a fresh Frappacino her father delivered.  She was asking for her oxygen support to be increased but as all her readings looked satisfactory they were reluctant to do this when they were trying to reduce her dependence of the respirator support so she could breathe on her own with either a face mask or nasal canula as was the case before this years events evolved.

The doctors felt her breathing difficulties were a combination of having a temperature, the anti-biotics just started (but which will take at least a day or so to kick in and help) and the fact she still has a pneumothorax (which is why they have left a chest drain inserted.

We were informed this morning that she had a bad night and has again been sick and is very weak.

We must hope that this is just another case of her going 3 steps forward and 2 steps backwards in the overall process of recovery and weaning off ventilator support.

12th APRIL 2006 12.30 p.m.
We have been told that Justine has managed to walk a little this morning without the zimmer frame!

12th APRIL 2006 10.00 a.m.
We have been been informed that Justine picked up during the day yesterday and managed to sit out of bed and also had two sessions breathing using a face mask without the ventilator being used.  Then she reverted to having ventilator support through the tracheotomy.  She did not manage any walking as she was recovering from a few days when she was under the weather and not feeling good.

She wrote a diary entry last night which we have added this morning.

11th APRIL 2006 1.00 p.m.
We have just been been informed that Justine has been able to sit out of bed again today but she is feeling very weak and still not managing to breathe using a face mask.  She is still having ventilator support through the tracheotomy.

She has ordered a treat today a Mint Mocha Chip Frappacino from Starbucks and this will be delivered to her this evening.  It is hopes she will at least be able to enjoy a few sips to taste her favourite drink.

10th APRIL 2006 6.00 p.m.
We have been informed that Justine was sick again today and has a very upset tummy. She is also running a temperature again and is thought to have an infection.

We have no other information BUT we do hope to have a fuller and up-to-date report from the Hospital by midday tomorrow.

9th APRIL 2006 6.00 p.m.
We have been informed that Justine was sick again this morning and most of her intavenus tubes have been removed.  One may be re-inserted tomorrow.

She managed to do a little cycling on the machine after her luch but found it hard toget on the bike and do the cycling but she certainly has been trying.

She now clearly seems to need her afternoon sleep and had one again today.

We have added a short entry Justine wrote today to the Justine's Diary section of this site. 

8th APRIL 2006 6.00 p.m.
We have been informed that Justine has been worked hard again today with the physio and outreach teams.   She is working hard on her breathing but it is not easy due to the advanced stage of her LAM.

She had started 3 paintings later last year as a wedding present for her brother Spencer who got married in December 2005.  She did in fact manage to finish these just before she was taken ill today but the pictures had not been signed.

Justine signed all 3 pictures today and also wrote personal messages on the back of each and gave them to Spencer.  He will now be able to hang these and they will take pride of place at his home.

Justine also saw her mother and Lizzy (Spencers wife) saw her for just a few minutes.

It seems that Justine has such a hectic schedule that it is not possible to visit her in the morning and to avoid her getting tired a rota of visitors is being set up.  No visitors who are unwell can see her and anybody who has been sick or had diarrhoea (tummy upset) is not allowed on the ward until 72 hours have passed with no repeat symptoms. This is to ensure no infections are brought into the ward.

If any friends want to visit they must first telephone the Ward (E Ward) at Harefield and then ask the nurse in charge to check with Justine if she wants a visit and is up for a visit.  If the all clear is given then at the moment it seems that around 2 p.m. is the time when she has her rest period and could briefly see people.

We have also found out that although many emails were sent direct to Justine she never received them as after 30 days they are automatically deleted.  If anybody did send an email and had no reply - if they are sent again arrangements have been made to monitor her email account and make sure she gets the messages.  Justine apologises but as you will appreciate she does not have access to her computer.

Justine does enjoy getting her messages and the travelogue from Olly and Melbourne Mad Mikey.

7th APRIL 2006 8.15 p.m.
We have been informed that Justine has been worked hard again today with the physio and outreach teams.   She was on a face mask for a while this morning but found it difficult and tiring breathing.

She also had her longest walk with the physio and got outside her room and saw the nurses station.  She needs the help of a zimmer frame and tells us that she get very tired walking.

She has not been able to use the cycling machine but it is a great piece of Tunturi kit.

Justine had a hearty meal this evening and started with pea soup (just sipping a little, followed by plaice in a mushroom sauce with mashed potatoes (she eat nearly all the portion served up) and to finish a real treat a chocolate mouse and some lemon sorbet. This is the biggest meal she has eaten.

Apparently it is very difficult to keep to the schedule set out on 5th April and she has only had the speaking valve in once today .

Justine has made it clear that she knows she really needs a new set of lungs as time is running out as her lung is very poorly.  She also thinks that if she had not had the surgery then she would have died.

She is still positive and las are all who know her, family, fiancee and friends and she has been told by her father that we all believe she will get the transplant she needs. However, she says deep down she has real concerns.   She is also worried that if she manages to get off the ventilator and have the tracheotomy removed that she may be sent home.  She has made it clear that is a real fear as her condition is now so poorly and she is not confident anything could be done if she was at home and had another problem.

She has not felt like writing anything for her diary today.

6th APRIL 2006 5.30p.m.
We have been informed that Justine has had a hectic day and as she has written a further diary entry we refer you to that for further information.

5th APRIL 2006 8.30p.m.
We have just been informed that Justine has now had a routine set up to wean her off ventilator support.  She has had a hectic day.

Justine has agreed that this may be of interest so her timetable is reproduced under.

09.30 - Justine will have the speaking valve connected via a face mask for 30 minutes.

10.00 - Justine will then be assisted to sit out of bed.

10.45 - Physiotherapy session

11.30 - Back on speaking valve with face mask.

12.00 - Lunch

14.00 Back to bed for a rest or sleep.

17.00 - Sit out of bed for dinner.

18.30 - Back on speaking valve via face mask.

19.00 - Exercise bike for cycling as long as she can.  They have installed a cycling machine in her room and the Physiotherapist will be teaching Justine how best to use this tomorrow.

Justine has eaten 2 meals today and a small breakfast.  She had a fruit cocktail, water ice, place in white sauce and finished with water melon brought in by her father.  She is still only eating a few mouthfuls of everything but it is a start.

Justine is also writing up her main diary which she wants to have published.

We understand it may be difficult to keep to this timetable and many other tasks have to be performed in between - but this does give some structure to Justines day.

4th APRIL 2006 7.30p.m.
We have just been informed that Justine managed to walk a bit today and did manage to get outside her room.  She has also been breathing through a face mask for a while and put back on the high flow ventilator.

She became very tired and was also sick again.

She has written a diary entry today which has more information.

3rd APRIL 2006 5.30p.m.
We have just been informed that Justine managed to sit out in a chair for a while this morning.

Justine also enjoyed a lunch of mashed potato and soup.

They were hoping to fit a speaking valve but Justine could not manage with this as it makes it very much harder to breathe.  They are trying to locate a different type of valve which may be easier for her to use.

Justine still remains on the high flow ventilator support today.

3rd APRIL 2006 9.00 a.m.
We apologise for no bulletin being posted yesterday but Justine's parents had a days respite and were out for the day celebrating a friends mother's 90th birthday. (Her father is one of the Webmasters and no other was available).

Justine had a good nights rest both on Saturday and Sunday.  She has requested a Mango puree as a fresh taste this morning so good old mother will organsise.

1st APRIL 2006 4.00 p.m.
We have just been informed that Justine has seen her consultant again today.  He has informed us that they are going to try to switch Justine to a face mask for oxygen supply.  They will cap the tracheotomy and leave that connected as a failsafe.

That change-over may be done later today.

Justine is now settling in to her new surroundings and has not got out of bed today as she is to tired.

She has seen her parents and did manage to write a lenghty entry for her diary.  This has been posted and can be found in her diary for April.

The British Lung Foundation feature Justine in their news section on their webite.