31st MARCH 2006 6.30 p.m.
We have just been informed that Justine was moved this afternoon onto 'E Ward' the Transplant Ward at Harefield and has a room to herself.

Her Consultant has confirmed her treatment will continue and the transplant team have also confiirmed that they do not have a donor organ at this time.

Justine will now have to settle in to her new surroundings and she was to tired to write an entry for her diary.

31st MARCH 2006 10.00 a.m.
We have just been informed that yesterday although Justine was quite sick in the early part of the day she did manage to walk about 8-10 paces with a Zimmer Frame.   She also had a little yoghurt and in the evening a little jelly.

Justine has also seen her consultant who has returned from paternity leave and he explained some more to her about her condition.

Justine is in good spirit and has been able to see one of her friends she was to tired to write a messagefor her diary but we hope to have another entry soon.

30th MARCH 2006 1.30 p.m.
We have just been advised via Justine's Mum that Justine has been put back on the transplant register and that this will be for a double lung transplant.

She will stay at Harefield until the transplant is carried out.  We have no idea when that might be it could be weeks, months as it will all depend when they get a door organ that matches with her blood type, tissue, body frame size and so on.

She managed to speak to her mother on the phone whilst having the speaking valve connected for a few minutes.

She is still in the intensive care ward but they do want to move her to the transplant ward just as soon as a bed becomes available.

This is the best news we have had for a long time.

29th MARCH 2006 1.30 p.m.
This bulletin contains the news we could not post yesterday.

We were informed that Justine overall had a good day and for a short time in the morning had a special valve fitted to her tracheotomy which enabled her to talk to the patient next to her.

She managed well with her breathing on very little support from the machinery.

She had the valve refitted for 15 minutes in the evening and talked to her father, fiancee and many nurses gathered round to hear her voice.  This made her tired and the valve was removed.

Justine was so very sad and very upset having had a letter from the father of Julie Teed one of her very good friends who lives in Guernsey informing her that she had died.  They were in regular contact writing to each other every week.  Julie had been waiting for a double lung transplant like Justine.  She was sent a greetings card which Julie had been making but not finished as her father felt she would have wanted Justine to have this.

This is the second friend of Justine who has unfortunately died waiting for a transplant and all were trying to console her fiancee, father and nurses.

Justine did say "I don't want to die" and she has been reminded by Sister that she had been very ill and "was doing just grand" and it was made clear all her friends "would want her to fight on and survive" and "she was not going to die and she was getter better everyday".

The Hospital inform us late yesterday that they are hoping to move Justine to 'E Ward' out of the intensive care unit when a bed becomes available.

A short message has been added today to Justine's Diary.

28th MARCH 2006 6.00 p.m.
We have been unable to post a full bulletin today but we have heard Justine is doing well.

27th MARCH 2006 6.30 p.m.
We have been informed of the following developments today with Justine:-
1) She is breathing more easily
2) She is having much less support from a ventilator
3) She still has the tracheotomy
4) She managed to walk a few more steps than the last try a few days ago
5) She is much more positive
6) She still gets very tired and has to rest or sleep after physiotherapy exercises.
7) Visitors today her Mother and fiancee

She has managed to write a diary entry today.


26th MARCH 2006 5.30 p.m.
We have been informed of the following developments today with Justine:-
1) She was moved out of her isolation room with the IT Ward this afternoon into the main Intensive Care Ward.
2) She is still managing on the by-pat respirator (This is a less agressive breathing machine which also allows a patient to do some breathing on their own)
3) She managed to breathe on her own for some hours this morning
4) The tracheotomy valve was removed for a short time and she was able to have some small drinks of water and also managed to say a few words through the tube in her neck.
5) She has been working hard on breathing exercises and physiotherapy.
6) She is very tired from the hard work today.
7) She is concerned that she may not be able to rest or sleep with all the noise in the IT Ward after the peace and quiet of the isolation unit.
8) Her isolation unit was being cleaned and steralised ready for use by another patient when needed.
9) She saw her father and fiancee.
10) She even remembered to get a mothers day card organised with an orchid in spite of all her difficulties.
11) Her moral is high and she is looking the best she has for days and weeks.

Overall we are informed that this is a major step forward in her recovery from the major surgery carried out on 16th February.

The next targets for Justine are:-
a) To clear the chest infection
b) Manage to breathe without any ventilator
c) Have the tracheotomy removed
d) Get re-instated on the transplant register.

25th MARCH 2006 3.00 p.m.
We have been informed that Justine has been having a better day today and she has also been seen by 2 doctors from her consultants medical team who are very pleased with her progress over the last few days.

24th MARCH 2006 5.00 p.m.
We have been informed that Justine has again been very tired and has not been able to receive visitors today other then her fiancee and she will be seeing her brother Spencer this evening.

The task for Justine today was to try to walk and she managed 3 steps before feeling very sick and having to stop.

More good news is that the third MRSA test result has arrived and is negative (clear) and now the next major hurdle is for Justine to get her chest infection cleared up to start clearing the way to get her back on the transplant register.

Justine still has a temperature and her chest infection continues to be treated with anti-biotics.

23rd MARCH 2006 5.30 p.m.
We have been informed that Justine has been very tired and has only managed to see her Dad and fiancee and for a few minutes only her brother Gavin.

Justine also has a temperature and chest infection which is being treated with anti-biotics.

The good news is that the 2nd MRSA test has arrived and is negative (clear) and only one more clear test is needed.  Then if the chest infection is cleared up she can be considered for re-instatement on the transplant register.

She has also managed all day on a different ventilator which is the next machine down from full ventilation and for just under one hour on a normal breathing machine.

Justine has been provided with a communicator the first to arrive at Harefield.  This is something like a very small tablet PC and you type what you want to say and it appears on a neon message strip or it can actually speak the words.  This will make it much easier to communicate rather than struggle trying to get people to understand what is being mouthed.  It is also quicker than writing and less strenuous.

Note:   A new diary entry has been posted for Justine today see Justine's Diary.

22nd MARCH 2006 5.30 p.m.
We have been informed that Justine has been cheerful but clearly has not had such a good day.  She has had a number of anxiety moments which increase the strain on her heart.  Visiting has been cut right back today just Jon (her fiancee) and Mum as she is just to tired to manage any more.

Justine may have another infection and tests are being done to check this out as she has been running a temperature for  a few days now.

The results of the first of the three required MRSA tests were received today and the good news is that they are clear. These still have to be repeated 2 more times before they can be certain Justine is clear of MRSA.

21st MARCH 2006 6.30 p.m.
We have been informed that Justine had a much better day today.  Her sedation was reduced to a very low level and she managed to sit out in a chair for a few hours and also did some arm and leg exercises (a 4lb weight was used for her leg exercises which many 100% fit people may find hard to work with!).  She also ended up with her favourite - using the leg cycling machine for a few minutes.

She has also been on a different ventilator for a few hours this afternoon which provides a much lower level of support and she will be back on the full respirator overnight so she is not strained or tired out too much.

Justine has been very much calmer today even though she still has concerns.

This has been the best day Justine has had for some days now and we hope she will not end up being very tired again tomorrow.

We also hope that she will be able to catch up on all her guest book messages tomorrow.

We have been asked to point out that if any emails have been sent to Justine that they have not and are not being monitored whilst she is in Hospital.  Messages can be sent to her via the guest book or by sending cards to her  c/o her parents address (not the Hospital) and they will be taken to her to see.

We are hoping that she may be strong enough tomorrow to prepare another personal message for adding to her diary.

Justine has made it clear that all your messages are both a comfort and giving her the courage to fight on.


20th MARCH 2006 6 p.m.
We have been informed that Justine had her tracheotomy replaced early today with a new one.  She had difficulties breathing during the morning and was having her sedation reduced but later this afternoon she had more difficulty and she has been sedated and her level of ventilator support increased.  

She was clearly very tired but read her greetings cards which arrived via her parents and had her messages from the guest book read to her.  These messages are giving her comfort at a time when even the strongest may be getting distressed.

19th MARCH 2006 6 p.m. We have been informed that Justine has been asleep most of the day. X-Rays have been taken and her chest drain adjusted to try to catch an extra pocket of air causing a small lung collapse.

She is still in good spirit  and has been able to read all greeting cards sent and messages posted to her guest book.  She is so grateful for these and has asked us to say a big thank you.  

18th MARCH 2006 6 p.m. 
We have been informed following the report this morning that Justine suffered breathing difficulties several times and she has been sedated and will be kept sedated until tomorrow.  This is to enable her breathing to be done by the ventilaor without causing her any distress.

18th March 2006 10.30a.m.
We are informed that Justine remains stable.  She is being given all messages that arrive in her guest book and although she cannot reply to any she is encouraged by all the support received.  We can only ask that you continue to post messages to help keep her moral and spirits up as it is clearly very depressing to be isolated and unable to eat and talk and have anywhere near the normal quality of life we are all accustomed to.

We have also had many inquiries on what the position is for getting Justine re-instated on the transplant list.  In order for that to happen she must be  free of the MRSA and everything possible is being done to eradicate that.   Then if at all possible she needs to get of the ventilator and be able to breathe on her own.  This is possibly the hardest task of all as due to the advanced effects of LAM she only has around 20-25% of her lung tissue working.  It is also vital for this to happen soon before the lung tissue deteriorates further as the pressure support provided by the ventilator has been finding weak spots in the lung tissue and that has been the cause of the most recent pneumothorax's last week.

Justine remains both "strong, brave and the most willing patient to co-opertate with everything she has been asked to do" quote from doctors looking after her.

17th March 2006 11 a.m.
We are informed that Justine had a good night, her lung has re-inflated and she is smiling again this morning.  Once again she has bounced back to fight on for another day.  Her close family and fiancee are around to support her moral.

16th March 2006 5 p.m.
We have just been informed that Justine's left lung suffered another pneumothorax (lung collapse) early this afternoon.  She was sedated and the chest drain which was  inserted on 14th March is fortunately still in place and it has not been necessary to add another drain and it appears to be helping re-inflate her lung.

She is now partially sedated and comfortable.

16th March 2006 1.30 p.m.
Following a meeting with the surgeon and doctor in charge we were advised that Justine has recovered well and has been much better over the last 2 days than she has been over the last week and the medical team are encouraged by this.

It will still be necessary to get rid of the MRSA which is being treated and the medical team will also be working hard with Justine to get her weaned of the ventilator.

Justine was sitting up again this morning in her chair and doing exercises and was in good spirit but making it clear she would like to be normal again and be able to talk and eat.  She had a game of noughts and crosses with her mother and may be able to start more diary entries for the diary she intends to publish and may even start doing some drawings.

16th March 2006 9.30 a.m.
You will have seen that Justine has recovered from the set back on 14th March and she does seem to be doing much better with her breathing on the new ventilator.

A meeting is to be held with her surgeon today and if we have any more news it will be posted.

14th March 2006 - 6.15 p.m.
We have now heard that after a series of X-Rays over a few hours it was decided that a new drain would have to be inserted to re-inflate Justine's lung.  This was done visibly using a cat scan to make sure it went exactly where required.  This has been successful and her lung has re-inflated.

Justine has had her sedation turned off and is once again conscious.  A different ventilator has been used which is more portable and it is envisaged that she will be connected to the latest state of art ventilator equipment in next day or so.  This equipment was arriving at the Hospital today.

Justine's overall condition is now as it was early this morning before the pneumothorax but we have been informed it is possible this may happen again.

Those following this will know that the purpose of the recent surgery was to prevent further pneumothorax's occurring again.  Therefore this incident today was both unexpected and unfortunate.  This was a shock to Justine and those close to her but we are confident her spirit will resurface so she can battle on to make a full recovery.

14th MARCH 2006 - 1 p.m.
We have just been informed that sadly Justine's left lung (which was the subject of the recent surgery) has suffered a pneumothorax  (lung collapse).  She has been sedated and will be unconscious whilst a decision is made on what can be done and the surgeon who operated has been called in.

Her fiancee and parents are either en route to or at the Hospital to be at her side.

11th MARCH 2006
Justine has been sitting in a chair again today and is comfortable and stable. She is being kept updated with printouts of all your messages and they are helping to keep her moral up.   Do keep sending them as it is clearly very depressing not to be able to eat, drink, talk or do anything.

10th MARCH 2006

8th MARCH 2006
Justine has regained movement in her legs and arms and is now capable of writing.

She spent 4 hours sitting in a chair today.

The Targets for Justine now are:-

1. To clear up all infections: MRSA, Chest etc
2. To regain her strength
3. To get of the Ventilator so she can talk, eat and be more normal
4. To get re-instated on the Transplant List (currently she has been suspended due to her infections and being on a ventilator)

5th MARCH 2006
Justine's condition remains stable, and whilst still requiring respirator support, she is now very much awake and she has been able to write the following note:

"(1) All my support has been worldwide (including teddies and cards);
(2) Missing everyone;
(3) Family and Fiancée have been great;
(4) Can't wait/wishing to come home to talk to people like Kimberley, Joe, Lucy and all the rest etc.;
(5) I can't still talk, eat, drink or poo :)!".

4th MARCH 2006 6.15 p.m.
Justine remains stable and no major changes are advised.

3rd MARCH 2006 1 p.m.
We are informed that Justine remains stable but weak and is still being treated for infections. She is still on a respirator but the amount of support being provided has been reducd as part of the process of weaning her of the respirator and on to the next stage of recovery.

Her eye infections have responded well to the anti-biotics which cleared these up.

Her sedation has been reduced so she is now partially aware of her surroundings and condition.  She is when awake (even though still sedated) clearly frustrated by not being able to talk and has indicated she would like all the support lines and respirator removed.

1st MARCH 2006 1.30 p.m.
We were informed by the consultant looking after Justine that she can be expected to be in the isolation unit in intensive care for at least a couple of weeks.  Then if she progresses she will be moved into a High Dependancy Unit.

Justines sedation has been reduced and she is now aware of her surroundings and is receptive to words spoken.  She cannot speak due to the tracheotomy.

We are further informed that the curent tracheotomy is to be removed and a new larger and different type of tracheotomy will be surgically installed which will allow more flexibility for looking after Justine.

Her medical condition remains unchanged.

28th FEBRUARY 2006 - 1.30 p.m.
We are informed that Justine remains stable but her condition has not changed overnight and this morning.

She remains on the ventilator, sedated on full support as previously notifed.

27th FEBRUARY 2006 5.30 p.m.
We delayed posting news today as we were waiting the latest report from Harefield.

Justine is still on full ventilator and life support but is stable and comfortable.

26th FEBRUARY 2006 10.30 a.m.
Justine progressed well yesterday and her ventilator support was reduced to enable her to breathe on her own.  Consideration was given to slowly (over the next few days) reducing her sedation with a view to partially waking her up so she could be aware of her condition and assist with her recovery progress from a conscious state. 

During the night she was struggling to breathe and full ventilator support has been re-introduced and her condition will be monitored continuosly over next 24 hours.

She remains fully sedated and all infections continue to be treated.

Apart from the breathing problems and infections (the infections can and are being treated) in all other respects she is remains strong.

25th FEBRUARY 2006 11.30 a.m.
Justine was stable overnight and the process of weaning her fully of ventilator support continues. Both her eyes are being treated and she still being treated for infections.

She remains fully sedated.

24th FEBRUARY 2006 11 a.m.
Justine remains stable and has been seen by an eye specialist and her eye infection is to be treated with anti-biotics.

It is planned to start a process of weaning her of the ventilator during the next few days.

Updated information will now be posted once daily.

23 FEBRUARY 2006 9pm
The MRSA has been found to be limited to the nose and throat and is being treated accordingly. Justine will be kept in isolation until this infection is cleared up. However, she has also developed an eye infection in her left eye and a specialist will be looking at that tomorrow.

One of the 2 lung drains has now been removed. Justine remains sedated but stable.

23rd FEBRUARY 2006 11 a.m.
Justine had a comfortable night and is stable.  She has been moved into an isolation unit and microbiologists are carrying out further tests to identify precisely where she has been infected by MRSA.  They can then start treating the MRSA.

They will try to reduce her life support during the day to see how she copes.

22nd FEBRUARY 2006 8.15 p.m.
A successful tracheotomy was carried out this afternoon and the respirator has now been changed over from the mouth and throat to the tracheotomy. Justine remains sedated on full life support as before.

Following further tests it has also been confirmed that Justine has also contracted MRSA externally. She will be moved to an isolation unit on her own and receive antibiotics to deal with this and prevent it entering the blood stream.

22nd FEBRUARY 2006  11 a.m.
We are informed that Justine's condition is unchanged and the IT Team have discussed carrying out a tracheotomy today.

More news will be added tonight when we have more information.

21st FEBRUARY 2006 6.00 p.m.
We have been informed by the consultant in charge that Justine has developed an infection and that they are treating this.  Apart from that her condition is unchanged from earlier reports over last few days and this morning.

We have been further informed that her condition will have to be assessed on a day by day basis.

21st FEBRUARY 2006 10.30 a.m.
Justine's condition remains unchanged and she is still sedated on the ventilator.

20th FEBRUARY 2006 9 p.m.
Justine's condition remains unchanged and she is still sedated on the ventilator.

20th FEBRUARY 2006 11 a.m.
Justine's condition remains unchanged and she is still sedated on the ventilator.

19th FEBRUARY 2006 8.30 p.m.
Justine's condition remains unchanged and she is still on the ventilator.

19th FEBRUARY 2006 11. a.m.
We are informed that Justine remains sedated on full life support and is still having to rely on the ventilator.  

The next major hurdle is for Justine to get off the ventilator and to re-build her strength to ensure she is really fit for a lung transplant.

Although she is fully sedated she does appear to be aware when any treatment is given to her.  Overall her condition has not changed since yesterday.

18TH FEBRUARY 2006 7.30 P.M.
Justine is still on the respirator,full life support and sedated.  Once again it was not possible to remove the ventilator.  The process will be re-considered again tomorrow.

She has done well to pull through the surgery and her next hurdle is to get her lung function to work without the need for a respirator to do her breathing.

18th FEBRUARY 2006 - 11 a.m.
It had been hoped to take Justine off the respirator yesterday afternoon but that was not possible and we understand they will try again today.

Justine's condition remains the same and has not changed since yesterday evening.

17th FEBRUARY Update 1.10 p.m.
We are informed that there is no change to report and Justine's condition remains the same.  The IT unit removed the respirator for a short time but it was to early and this had to be re-inserted as Justine has not recovered sufficiently.

Her fiancee and family are at hand to support her and prayers are being said for her speedy recovery.

17th FEBRUARY 2006
Justine fights on and we are informed she that she is still being looked after in the Intensive Care Unit, on a respirator and well sedated.  No change in her condition from yesterday and she will be seen by her doctors during the day.

16th FEBRUARY 2006 - UPDATE - 10.30 p.m.
We can now confirm that last night Justine had another pneumothorax (this time the whole lung collapsed) and another drain was inserted and she was quite poorly which is why she was moved to the High Dependance Unit.

It was not possible to do the procedure the consultant had in mind and following discussions a full surgical procedure was decided on.  This carried a 40% chance of success.  Justine decided to go ahead.

The surgery was carried out during the afternoon by the leading chest surgeon and his team.  We understand that a large group of medical people watched and 3 anestetists were present including Justine own Consultant who watched the operation.  The operation took around 3.5 hours.

This was an extremely difficult operation and in the realms of groudbreaking surgery due to the fact Justine has only 1 working lung(her left lung).  This is the lung operated on which very diseased with LAM.

Justine has made it as the operation was successful and now she has to recover from the surgery itself.  She is in Intensive Care on a ventilator and she is very weak and sedated.  She is stable and is in good hands at Harefield.

The purpose of his surgery was to stick the lung to her chest to prevent the recurrent pneumothorax's occuring.  This should reduce the chances of another pneumothorax and was essential as Justine could not continue as things were.

As a result of her left lung being stuck down it will now not be possible to carry out a double lung transplany but it is still possible for a single right lung transplant to be performed.

16th FEBRUARY 2006 9.30 a.m.
We have just been informed that Justine was taken very ill during the night and her lung collapsed again.  She was moved into a high dependence unit at Harefield.

We are also informed that the procedure discussed yesterday cannot be done.  A chest surgeon and her consultant have agreed to an operation to try to help and we hope to gave details by the end of today.

The operation is to be done just as soon as a slot is available in theatre.  Her parents and family are en route to be with her.

15th February 2006 Update No. 2 6.30 p.m.
We start by pointing out that today has been a day of evolving developments which is why we have taken the decision to post updates to enable you to see what Justine has to experience.

We have now heard that following the results of chest X-Rays and a Cat Scan that Justine's left lung has fully inflated.  In normal circumstances that would be what one would have hoped for but in this instance it is not what was required.  This means that it is not possible to insert the 2nd drain as had been planned.

Justine's consultant feels he cannot allow Justine to carry on as she is as to have had 4 pneumothorax's in a month is unacceptable. He had hoped she would stay stable to ensure she could have a double lung transplant but clearly the current situation could not be allowed to continue.  He will be speaking to chest surgeons tomorrow (none were available this evening) to see if one will agree to carry out a surgical insertion of a drain and the required procedure.  It is possible they will refuse if after considering the condition of the remaining lung it is felt it would be to dangerous.

If that is the case consideration will be given to Justine staying at Harefield for a week to see if the lung collapses and they could then quickly carry out insertion of a drain in the required position and the pleurodeses.   An alternative strategy has also been discussed involving her being discharged and having to wait at home until the next pneumothorax occurs after which Harefield will attend to the whole process.  On the positive side if this was done and she staid stable for some months then she would still be eligible for a double lung transplant.

Justine wants the surgical procedure carried out now if it can be done as she does not want to have to suffer again and her consultant agrees.


15th February 2006 Update No. 1 12.30 p.m.
Justine has now seen her consultant and they would like to insert a 2nd drain at the top of her left lung as it appears that a small space exists. They will in fact be carrying out checks either by scanning or x-rays to carefully check to make sure that a large enough space exists and precisely where it is.  This will be a precision insertion as they cannot enter the lung blind.  They cannot risk puncturing her lung as it would collapse again.

If they are able to insert the 2nd drain once this is in in situ they would remove the one currently at the bottom of the lung.

They cannot carry out the procedure with the drain currently inserted as it would not work as the fluid to be pumped in would do nothing.  They need this to be done from the top of the lung so the liquid runs down to the bottom of the lung.  They would have to rotate Justine so all the lung gets coated.

It is not clear when this will be done but it is clear that it does have to be done and Justine is agreeable to this.

The pleurodeses is expected to prevent another pneumothorax happening but we are informed it is still possible that Justine's lung could collapse at a future date and the whole process of drains being inserted to re-inflate her lung and another pleurodeses would have to be carried out.

As to whether or a single or double lung transplant can be done that will be the decision of the transplant surgeon after reference to Justines notes and taking into account her condition at the time.  

Justine now feels much happier and is more positive.  She hopes she will get a transplant this year as she has now been waiting for 10 months.

15th February 2006
The medical team at Harefield were discussing Justine case yesterday before she arrived as it is clearly unsatisfactory for her to be suffering from the recurrent pneumothorax's.

Justine was in pain when she arrived at Harefield yesterday (late afternoon) and very distressed.  The teams prognosis was explained to her namely, that they had in mind (with her approval) carrying out a 'pleurodeses'.  This is a surgical procedure whereby they pump a form of liquid talk into the pleural space with the hope that it will inflame the lung lining and cause it to adhere to the chest wall.  

There are risks but an 80%+ chance of success is expected in such procedures where a small drain tube has been inserted as Justine currently has.  With this small drain a risk is that the liquid will clot and block the drain tube.  

We understand that the procedure will be discussed with the Transplant Team as it is likely that they will not be able to carry out a Double Lung Transplant to Justine's left lung due to the increased`risk of bleeding although it may well be possible to deal with bleeding the overall transplant operation would take longer lung and may cause the donor lung to be lost and the transplant operation failing.  A donor lung only has a short time scale as it does need to have a blood supply re-instated without long delays.

However it is understood that would still be possible to do a right lung (single) transplant.  The opinion of the transplant team will be conveyed to Justine today and she will then have to decide if she wants to go ahead.

Yesterday evening and this morning Justine has indicated to her family that she will go ahead as she cannot continue with the continual lung failures, pain and distress this is causing.

Overall Justine is now very week and not as positive as she has been which is understandable.  She does wish to fight on.

It must be remembered that whatever is decided Justine still has the underlying progressive disease (LAM).

14 February 2006 - Update
Justine was moved into a respiratory ward and is resting but clearly very upset and alarmed.  We have heard from Chase Farm and they are planning to send Justine to Harefield Hospital during the afternoon.

We hope to add an update later tonight or tomorrow morning when we have more news from Harefield.

14 February 2006
Justine was having breathing difficulty in the early hours and at 2 a.m. was taken by Ambulance to Chase Farm Hospital, Enfield. Following  tests and X-rays at 4. a.m. they inserted a chest drain to help re-inflate her lung.

She was more relaxed and able to breathe again at 6 a.m. and is to be moved to a respiratory ward.

3 February 2006
Justine returned home last night.  She had a restful night and is now trying to get used to being home again after her traumatic last few weeks particularly last Sunday 29th January.

2 Februay 2006
We have been informed that the drain was removed yesterday evening and Justine has been told by the consultant looking after her that she can go home.

He has said that if her lung is going to go down again it will make no difference if she is in hospital or at home and she will be more comfortable at home.  If the lung collapses again she will have to be taken to A. & E. of the nearest hospital.

We also understand that if this happens again over the next few weeks the consultant will consider fixing her lung so it cannot collapse.  This would be done at Harefield.  We did understand that if that was done a transplant would not be possible.  However, the consultant has informed Justine that it would still be possible to carry out a transplant but it would be much more difficult and would carry a greater risk of bleeding.

1st February 2006
We have now had confirmation that the reason why Justine was unable to breath on Sunday was due to the fact that both the top and bottom of her remaining left lung suffered from pneumothorax's.

Various tests were carried out yesterday evening and comparative X-Rays this morning show that the lung has recovered.  However, the overall condition of the lung left is not good due to the LAM disease and is full of cysts which could burst at any time causing another pneumothorax.

The drain has been clamped to see if the lung remains stable.  Further checks will be carried out and a fresh assessment made possibly late today or tomorrow morning.

Harefield would like to keep Justine mobile so she does not loose all the fitness she has built up in previous months.


31st January 2006
Once again Justine has not had sleep and she is both tired and weak.  She was transfered by ambulance from Barnet to Harefield Hospital during the afternoon.

Further news will follow when we have updated report from Harefield.

30th January 2006
Justine did not get much rest overnight and we are advised depending on the results of further tests and an X-ray later this afternoon that she will be blue lighted from Barnet to Harefield Hospital.

29th January 2006

Justine was unable to breath in the early hours and at 4 a.m. an ambulance took her to Barnet General Hospital where she had a fight to stay alive.  The portable drain was removed and a suction drain was fitted - but Justine was still struggling as she was unable to breath.  On all previous occasions when a drain was inserted she got instant relief, was able to breathe again and had relief from the pain.  The A. & E. team at Barnet attended to her for some 10 hours and finally managed to restore some normality to her breathing.  She is thought to have had a pneumothorax at home during the early hours and another during the morning whilst in the A & E resuscitation unit at Barnet

She was moved to the Larch Respiratory Ward

28th January 2006
Justine came home on 26th Jan with the portable drain left in her lung. Justine was glad to come home and was extremely tired. The next day (27th Jan), Justine was in so much pain - and a local Doctor visited and after liaising with Harefield recommended pain relief every 2 hours and alternating her tablets. The stress of all this re-occuring again has made it difficult for Justine to sleep and feeling anxious and really wanting a transplant soon. For peace of mind the Doctor also recommended anti-depressants again, to which Justine is now taking - but only wants to for a short period again.

Justine returns to the Harefield Hospital 31st January for an X-ray and if her lung is inflated the doctors will remove the chest drain.

Justine's had intended to add to her diary -with hows she feels but in view of developments on Sunday 29th January that will not now happen.