JULY TO SEPTEMBER 2006

10th August 2006

Justine's shingles have been getting better and she can now mix with people and go out of her room properly. However, in the last fews days she was feeling very depressed and had been crying having been isolated to her room (although it is quite normal for post tx-patients to become depressed shortly after the tx). Although Justine wants to be home she may have to stay in hospital for a few more days.

Justine still has pain from the operation and this is worst in the mornings. She is also not sleeping too well. However, she has been cycling on the exercise bike and walking.

4th August 2006 4.30 p.m.

We have heard from Harefield today that Justine still has great pain from her chest wound.  The good news is that she was allowed out for a short walk .  She is still not allowed to come into contact with other patients.

3rd August 2006 3.30 p.m.
We have heard from Harefield today that Justine is in great pain and that she is still confined to her room and not allowed out.  She is also still having antibiotics to treat her infections.   

We have no news yet on when she may be discharged again but it is hoped that will be next week.

2nd August 2006 - 5.00 p.m.
We have heard from Harefield that Justine is still in a great deal of pain but in spite of this she managed to have 2 sessions on the exercise bike.  

She is also having to have plenty of rest as she is somewhat tired. 

We cannot report on anything else at this time and we have not been able to get any indication as to when she will be discharged again but it is likely that the earliest could be some time next week.

31st July 2006 8.00 p.m. 

The good news is Justine had her first frapachino (out of hospital) - a coffee based, banana caramel which she informs us is nicer than the mint mocha chip.

28th July 2006 6.00 p.m.
Justine has been keeping up her exercise regime as best she can in her condition and the heat.

The major news this evening is that Justine is being discharged from the ward and will be moving into a room or flat in the grounds of the Hospital.  She will be at hand for the check ups needed post transplant

Just now she is tucking in to a hearty evening meal and when Jon arrives he will assist her with the move.

Justine will not have any access to the Internet now and will have to rely on family bringing in her guest book messages etc but she can be contacted by text on her mobile phone.

27th July 6.30 p.m.
Justine has been very busy today trying to do bits of exercise and little walks.  She is hoping to do another small walk this evening.

She informs us that her main problem is the pain and that it is also difficult to cough and that when she does cough it causes increased pain.

More news tomorrow

26th July 5.15 p.m.
Justine has seen her consultant today and he ideally would like to discharge her from the ward at the earliest opportunity as she has spent more than enough time in hospital.  

He has said that although she still has infections it would be best for her to be out but she cannot at this time mix with other patients or eat in the Hospital Canteen but she could eat out in a Pub.

Justine is getting exercise and has in spite of the heat been out for a walk using her new lungs.

More news to follow tomorrow.

25th July 7.00 p.m.
We have now had a chance to catch up with events and speak with Justine this afternoon.    

Justine did in fact manage to go outside her room without any oxygen support yesterday and sit outside the Hospital for a while.   

Today she went for a walk and also climbed up one flight of stairs and managed this okay.  She has also been doing the physio exercises so all in all an momentus step forward.

24th July 5.30 p.m.
Justine has been kept very busy today and we have not been able to get a detailed update on her progress.  We will be able to post the full news tomorrow after she has been able to speak with us.

23rd July 
Justine is going to do some more exercises today to keep her keep fit regime going. She is still in pain but as always Justine fights on and nothing will stand in her way.

We have also received a diary entry which has been added. See Justine's Diary for July 2006.

22nd July
Justine has had a day of rest today no exercise bike, no physio but overall is feeling good.    

She tells us that she hopes to do more exercises tomorrow and is sending us an entry for her diary. 

She is very sore and in paid and still has stitches to be removed from where the chest drains were inserted.  Her surgical stitches will all dissolve.

21st July 2006 12.30 p.m.
We have just heard from Harefield that yesterday they managed to remove the last drain (the right drain from Justine's chest) and she is now free of all drains.   Justine was very emotional at that time and had a good cry.

Justine is still having some oxygen support. We have also heard that she now has a third infection "Shingles" and that too is being treated with an increased dosage of Aciclovir.  As a result of this extra infection although Justine can now much more easily walk around she is not allowed out of her room as routine infection control for the next few days.  If this infection spread then she will be "Confined to barracks" until it clears up.  We have also been advised at this time that it is inadvisable for any family or other visitors who have not had Chicken Pox to visit Justine.      

We have managed to speak with Justine just before this bulletin was posted and she informs us she had a good night and is just about to tuck into lunch.   

She is still in pain and having oxygen support. 

She further informs us that Harefield are really pleased with her progress and recovery and that if her infections clear up; it may be possible for them to consider letting her return home in a few weeks time, albeit she would still have to make regular return visits to Harefield for check ups and monitoring.

20th July 2006 midday
We have just heard from Harefield that yesterday they managed to remove the left drain from Justine's chest and a decision will be made later today by the surgeon in charge as to whether or not the right drain can now be removed.    

Justine spent some time on the exercise bike again yesterday and had 2 sessions one in the morning and one at the end of the day.  She also managed a little walk around.

Today she has been worked hard by the physio and done a lot of walking.

Justine has also told us that she is feeling better today.

19th July 2006 midday
We have just heard from Harefield that they have taken a further X-Ray and are awaiting the results and Justine's consultant has said that if the x-ray looks okay then they may be able to remove the last 2 drains connected.    

If the drains are removed then Justine will try to have a walk around this afternoon.   Yesterday, Justine managed a total of 40 minutes on the exercise bike split into 2 sessions of 20 minutes each.  This morning she has done 20 minutes.

We have also managed to speak briefly with Justine who informs us that she is now resting in bed, struggling with the heat and her stomach is still very upset.

18th July 2006 1.15 p.m.
We did hear from Justine early this morning that she had a temperature and was suffering from severe stomach upsets from the new anti-biotics she is being given to treat the new bug that has been found, Pseudomonas Aeruginosa.  

We have now also had confirmation from Harefield that following the earlier tests carried out that Justine has MRSA (Methicillin-Resistant Staphylococcus Aureus) and that is being treated with anti-biotics.  In addition it was established yesterday latish that she also has another infection Pseudomonas aeruginosa and is being given 2 extra anti-biotics to treat this.  

You may ask what is Pseudomonas Aeruginosa and we can inform you that this is an opportunistic pathogen, meaning that it exploits some break in the host defenses to initiate an infection.  It causes many types of infection particularly in patients such as Justine who are immunosuppressed and in plain English it can be regarded as a chest infection.   As it has been identified it can be treated and 2 anti-biotics are being used albeit Justine is not reacting very well to them as it is making her feel quite unwell.

Her mother took in some Heinz Tomato Soup with rice and toast soldiers for her to eat for lunch and she was really very pleased to get this.

We will not be posting another bulletin today.

17th July 2006 5.30 p.m.

We have just heard that Justine was not feeling to good at midday and she has had her treatment varied a little and after several hours was feeling better and that position remains unchanged at the time of posting this update. 

It is still very early days and Justine is still suffering from an infection which needs to clear up. She still has to be recovered sufficiently for the remaining chest drains to be removed.  

We have established that yesterday she manages 2 sessions on the exercise bike 1 for 12 minutes and 1 for 13 minutes. Today she did s straight 20 minutes and for the first time since she has been at Harefield some resistance on the machine was added.  She managed 20 kilometers per hour and covered a total of 3.25 kilometers (approx. 2 miles) including a short sprint.  Prior to the transplant the best she was able to do was 10 kilometers per hour over a distance of 1.5 kilometers.

17th July 2006 10.45 a.m.
We are awaiting some further news from Harefield.  

We can however report having heard from the physio department that Justine managed to increase her time on the cycling machine on Saturday and managed 6 minutes which was a big improvement on the 2 minuted the previous day.  They are going to let us have timings from yesterday during the day.       

We have been asked to draw your attention to the fact that Justine still has to clear up her infection and still has a way to go to make a full recovery.   

Justine will feel much more comfortable knowing that she has got the infection cleared up and the last drains removed and that will give her a feeling of normality.   

Justine is till very, very tired which is understandable and she cannot cope with visitors outside of her immediate family at this time and even then only one person or couple per day is all she can cope with.  Visits are being limited to some 10 minutes to avoid tiring her out and she needs all her strength which is understandable.    Justine is still having oxygen support and suction but things are slowly improving and the level of support should be reduced over the coming days.    

Justine is receiving all the messages and cards arriving for her and once again she says "Thank you to everybody giving her support and who have been following her journey" 

An updated  bulletin will be posted later today.

16th July 2006 1 p.m.
We can now bring you a more up-to-date report. 

Yesterday Justine did manage to eat a special treat brought in which was a salady roll and some fresh fruit salad apart from the Hospital Meals.  She has had further X-Rays to check progress of her recovery.  She also sat up out of bed for most of the day. Her parents visited yesterday.

She has been reminded that she must not at this time eat sugary drinks or food as it will be important to keep her blood sugar levels low and not to create a diabetic state. 

It will also be important for any food she eats not to be on the permanently prohibited list now she has had a transplant.  Amongst the things no longer allowed are Grapefruit, yogurts of all types, soft cheeses, many seafoods including smoked salmon, salad cream and mayonnaise.  We will publish a full list soon to make sure any fruit parcels or gifts do not contain non-allowed items.  The reason for the ban is that all the food types prohibited if eaten would interfere with the anti-rejection drugs which Justine will be taking throughout her life and put her at risk.

Justine has spoken very briefly with us and says " I had a good night and slept in late today and am just about to have lunch"  Justine slept in and rested until about 12.30 p.m. and will be on the exercise bike this afternoon.

Justine is very pleased with all the kind messages arriving in her guest book and says "Thank you to all" she cannot reply at this time as you will appreciate.

15th July 2006 4.15 p.m.
News has been somewhat slow reaching us today and all we have heard is that Justine had another restless night and has tried to spend much of the day so far trying to get some rest and sleep.  

She is also been pressed by the physiotherapists to do some exercise.  We will have a much fuller updated report to post tomorrow.

14th July 2006 4.45 p.m.
We have established that Justine has been very tired thoughout the day having had so little sleep overnight.  It seems that the team at Harefield do want to get her infection cleared up to enable more progress towards mobility to be made.

Justine has had some physio today and went on the exercise bike and made a start just 2 minutes which is great considering how little she was able to do in more recent weeks.   

They have connected a suction pump just to make things as little easier and to deal with a very minor problem.  It is hoped that next week if she progresses it may be possible to remove the remaining 2 tubes and drains and that will enable Justine to be more mobile and start doing more exercise which in turn will help to get the new lungs working more fully.   

14th July 2006 8.00 a.m.
We have spoken with the night staff at Harefield and they say that Justine was fine through the night.  

Apparently she has only had limited sleep due to the fact the nursing staff looking after her have to continually check the 2 drains and administer various drugs.  

In respect of the pain that she has they are doing their best to control this with analgesic drugs and responding to Justine's request for relief. 

Justine is getting a little sleep as this bulletin is being posted.

13th July 2006 10.30 p.m.
More news from Harefield that fighter Justine has improved during the day and 2 of the drains have been removed (the 2 lower ones) and she is looking much better.  

She has been eating some more solid food but does feel that she should be eating more.

She still has some sort of infection and we are awaiting further news on this.  She is also still suffering from substantial pain but has refused the strong pain antidote of morphine and is trying to manage on more normal pain killers in spite of clearly being in considerable discomfort and very sore.

It should be noted that we are unable to detail the full story as detail is being withheld to enable it to be published more widely with a national paper.

More news will follow when provided to us.

13th July 2006 10.15 a.m.
We have had further news from Harefield and they inform us that Justine was moved to E Ward (the transplant ward) early yesterday evening so she is now out of the IT unit and in the next stage of her road to a full recovery.

Justine has had a good night but she is in great pain and they are still helping her by administering morphine and other strong pain killers but in spite of that she is still uncomfortable and in pain.

Justine is fully aware of her condition and can talk and eat small amounts of solid food now.

We have established that she currently has 2 drains one on each side of her body and 2 tubes at one inserted at the top and another at the bottom of her new left lung and the same on the right lung.  This is to enable blood and fluids to be drained away.

The first biopsy results are back from the sample taken when the bronchoscopy was carried out on Tuesady 11th July. It is clear that one lung has an infection and that will be treated with anti-biotics.  A further more detailed biopsy and test is being carried out and it is hoped that will identify more accurately what the infection is.  We will bring you more news when it reaches us.

12th July 2006 4.15 p.m.
We have now heard further from Harefield that Justine is doing really well.

She is now recovered sufficiently for her to be moved from the Intensive Care Unit onto the Transplant Ward (E Ward) where we understand all the nursing team are eagerly awaiting her arrival so she can give them hell!!  Joking apart she has been a model patient and with her feisty and positive attitude has made her mark in every ward and department she has been in.

She is still having all the many messages arriving in her guest book taken to her and this is for the present the best way to send her messages of support as this is for the time being her only contact withg the outside world.   

We thank all of you for your kind thoughts and messages.

12th July 2006 9 a.m.
We have heard from Harefield this morning that Justine had a reasonable night.

They feel they are getting the nausea under control and that Justine stomach is starting to settle down.  A decision on whether or not they can start her on some solid food will be made later today after the Transplant Team have seen her.

The Team will also decode if she is now okay to be moved onto 'E Ward' the Transplant Ward at the same time.

Justine is resisting having the morphine but they still want to administer this to help control the pain.  Whilst she is on this pain killer she is still drifting in and out of consciousness but the nurse in charge today says that Justine is still very talkative in between being awake and asleep.  Wee those who know Justine would expect nothing less.

11th July 2006 7.15 p.m.
We have had updated information reach us from Harefield that following the X-Ray taken a dark patch was seen in one of the lungs.

Justine's consultant discussed this with her and explained it would be necessary to carry out a bronchoscopy (this is an examination of the lung by means of inserting a bronchoscope which enables the operator to see inside and to remove foreign bodies or take a biopsy) and that this would be done with a general anaesthetic.

This was carried out by her consultant and afterwards he advised that a biopsy sample taken would be sent to the laboratories to identify what the infection was.  They could then make sure they administer the correct drugs to treat this and that there was no need for concern.

Having performed this procedure it was established that the patch was mucus.

In view of this her transfer to the main transplant ward has been deferred as the consultant wishes to err on the cautious side until he has the biopsy results from the lab for the samples extracted.

Justine is now resting and although much as she was yesterday and earlier today she is full of anaesthetic and finding it hard to stay awake for long periods which is understandable.

She has had many of the messages from her guest book read to her and due to the large number some more may be read to her later tonight and hopefully she will be up-to-date tomorrow with all that have been received.

11th July 2006 9.30 a.m.
We have heard from Harefield this morning that Justine had a fairly good night.  She is still nauseous and they are now trying to control this with anti-sickness tablets.

Overall she is looking quite good.

10th July 2006 6 p.m.
Firstly we must apologise for grammar and factual errors in the bulletins posted over the last few days.  These have now all been corrected.  The errors crept in as a result of the combined effects of the stress and exitement of the moment, rushing to get news posted and tiredness from the long hours.

Justine is still doing really well and although heavily sedated she is fully aware of her condition and surroundings.  She has been able to talk a little in between the sedation causing her to drift back into a mild doze.  She has mentioned that she feels nauseous and alternative sedatives are being administered to help correct that unpleasant feeling.

Nevertheless, she is still very alert and asking to see messages from her guest book.

If she carries on with this amazing recovery she may well be moved out of the ITU unit and into the transplant ward which is the next stage in her recovery process.

All the staff at Harefield are thrilled and genuinly so pleased that Justine has now managed to have a transplant and that she is doing so well after such a long period of gradual decline.

All family and friends are overwhelmed with emotional happiness for Justine.

10th July 2006 8.15 a.m.
We have just heard from the ITU unit at Harefield that Justine progressed well through the night.

They have managed to remove the breathing tube and she is now awake.   She is managing to talk and have small drinks.  She still has the nasal spectacles to help provide her with adequate oxygen and it is too early to tell if the transplanted lungs have taken and are functioning 100%.

9th July 2006 10.30 p.m.
We now have news that after a very long operation that Justine has successfully had her double lung transplant.  This was we understand an operation that presented all the expected difficulties of firstly removing her own lung tissue and then transplanting in the new lungs.

This was a very long procedure and she has made it through the operation and is now in the Intensive Care Unit at Harefield Hospital where she is sedated and on life support machines.  The next hours and days are the first critical stage when they will try to waken her and see if the transplanted lungs have bonded and will work.

We also learned that this operation was timely as it did seem that there was very little of her remaining lung left working.

The support rolling in and words of encouragement arriving by text, email and in the Guest Book are a great comfort to all who have been around her through the night, day and again tonight. Some well deserved sleep is to be had now and Justine will be left in the capable hands of all at Harefield.

To those who have already sent messages in Justine's parents would like to say "Thank you from both themselves, Justine and Jon"  It will be impossible to respond to everybody just now.  All messages in the guest book are being printed out and have already been seen by Jon and the family.  These will be kept for Justine to see when she recovers.

9th July 2006 - 11 a.m.
At 2.30 a.m. this morning Justine was woken and told she was being alerted for a possible double lung transplant.  Here fiancée Jon had gone home to Chelmsford for a night out with friends and having had a few drinks had to catch a cab back to Harefield with one of Justine’s friends for moral support.  Her parents were woken and dashed to Harefield and arrive at 3 a.m. 

5th July 2006
Well it has been meltdown everywhere and just when you think things can't get any worse yesterday brought a real contract as after hours of scourching heat just after lunch it pelted down hailstones and torrential rain.

Justine was having a BBQ lunch and was lucky not to get drowned! in the torrent that came down.  Her parents were not so lucky and without a brolly get soaked through to the skin.  Well who would have thought of going out with an umbrella yesterday.

Justine is coping well and looks like getting hooked on a new form of artwork she tried yesterday.  We will bring you details and are waiting in case Justine wants to reveal all in her next diary entry.  We may get her to agree to having some results published for all to see.

The Webmaster will be unable to add any further news bulletins until the weekend but your guest book entries will still be monitored and added for Justine to see. So keep them coming.

3RD JULY 2006
See Justines Diary for this month and also see latest photo of Justine under Fun and Photos.  Justine is going to try a new form of artword today.  Watch this space for more news of her results.