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Latest New on Justine

january - march 2007

JANUARY TO MARCH 2007

22nd March 2007
Oh dear..Justine's lung function is starting to play up again. Will she be able to have this six week break after all? We will keep you posted.

5th March 2007
Good news! Justine's next visit will be in six weeks time (19th April) - dependant on Justine's daily spirometry readings at home (lung function tests). Justine expressed shock in a positive manner as was not expecting this (and nearly fell off her chair when told)! The lung function results from clinic today were about the same as last week - so no drop and the consultant is happy at present with this.

Finally the steriods are being reduced by 5mg every 3 days, so will drop from the initial 40mg back to 10mg (that Justine used to be taking). As you can imagine relief and joy in hearing this too - as Justine's appetite will to go back to normal (and prevent Justine feeling constantly hungry and craving food).

Regarding the nebulisers - the consultant has expressed to actually continue them until June this year as opposed to Spring time - to help fight off anything else. It will be then one year that Justine would have been taking nebulisers (as opposed to the initial 2-3 weeks she was told to do post transplant). And also nearly one year post transplant!

27th February 2007
The consultant is yet again bewildered with Justine's lung function, which has dropped again since last week. Justine needs to go yet again the following Monday (5th March) for the usual checks. Depending on results and whether another decline in function/similar readings, a Broncoscopy and Biopsy will definitely be needed to be done. Also, another week of high dosage steriods has been recommended to maintain.

20th February 2007
Great news, Justine is home again after a better lung function result at Harefield hospital yesterday. Not only was Justine shocked by this - so was her consultant (who thinks that perhaps increasing the steroids helped with the recovery). However, another visit for checks again will happen the following Monday (26th Feb). Also, it was stated that perhaps another broncoscopy will need to be done - to check for any damage to the right lobe/lung that was seriously inflamed from the recent RSV virus.

16th February 2007
Justine has expressed very confused and mixed emotions from yesterday's clinic. Unfortunately, lung function levels are still low and Justine has been told to go back onto high level steriods for ten days until the next check up at that time too. Apparently, the steriods were supposed to maintain on a high level when Justine left 31st January...but this was not communicated. The next check up has been booked for 26th January for the regular checks (blood tests/chest x-ray/lung function) and that another broncoscopy/biopsy may be required if lung function levels low. Reason being to check this time for rejection.

However, early this morning - Justine recieved a call from Harefield hospital to come back this Monday 19th January for the regular tests - and depending on these results, check for rejection and yet another stay in hospital. Justine went into shock as mentally was delighted having a ten day break only to be short lived and return on Monday, and her body started to shake with shock.

Then ontop of that recieved another call from Harefield shortly after, to take part in research and have a tube put through her nose into the lungs and for this to remain overnight to test acid levels or something in her new lungs. This is just too much for Justine right now, and has said that she needs to deal with one thing at a time, and if another broncoscopy/biopsy is required to check for rejection - then mentally she needs to deal with that overnight and not about a tube going through her nose to check for something else. However, Justine would be willing to do it another time - to help with research. So, yet again we are not knowing anything yet until further investigations are done into Justine's new lungs. As we all know Justine seems to bounce back from all knockbacks and I hear that she will continue her day with exercise and food and keep smiling.

7th February 2007
Justine has been keeping herself busy trying to improve her lung function with plenty of exercise. Also, Justine is very excited at the prospect in celebrating her 34th Birthday next week (12th Feb), and hoping that all will go well at Harefield Hospital a few days after.

LATEST UPDATE 31st January 2007

JUSTINE IS BACK HOME!! Justine was shocked when her consultant said that she could go home this afternoon - as the virus has cleared. However, Justine's lung function still needs to be looked into - with another visit to clinic 15th February.

Obviously Justine is over the moon, and happy going home after 2 and a half weeks in hospital being confined to her room most of the time with drugs throughout the day and night. Justine wants to get back to the gym and start working on improving her lung function again, and hopes that this will work, so no possibility of rejection.

31st January 2007
See Justines diary entry written on 30th posted today.

We have spoken with Justine and she tells us she did not get much sleep overnight and that she is still so very tired.  She is trying to get some sleep during the day.

Justine has not seen any of the medical team today and so we have no further news to report.

29th January 2007
Justine has now been taken of the overnight “immunoglobulin” IV treatment although all other treatment continues.

She still awaits some news on her progress with all the treatment that has been given.

She does appear to be in a better condition in herself but clearly does want to know what the current state of play is, whether she has to have another  Bronchoscopy .

She enjoyed a hearty home cooked chicken meal this evening which her Mum had prepared and taken in.

27th January 2007
Justine is very, very tired after the 3 nights of intensive treatment on top of her other treatments and drug routines.  She is looking forward to getting some much needed sleep.

We have also learnt that the other drugs taken prior to her overnight treatments are I.V. Paracetamol for 15 minutes and then Piriton ( an anti-histamine).  The name of the actual drug being used that is providing Justine with the immunoglobulins is Intrathect.

Justine has now drawn a cartoon of a masked face with curly hair outside her room stating "Si masked mysterious lady is here".  She is in good spirits still and if anything she does appear to look a little better today but she says that is because she has spent some time pampering:-applying a face mask and wearing eye make up.

It seems it will still be some days before we know as to whether or not all this treatment has actually helped clear the infection out and before her overall condition is known.  It is therefore not clear whether she will be in Harefield for another week or so and as to whether or not they will want to do a fresh Bronchoscopy and biopsy.  

26th January 2007
We spoke with Justine late this afternoon and she tells us that she did not feel like herself.  It seems that all the drugs and lack of sleep have now affected her.

Justine is finding it hard to adjust to her new drug and treatment regime and she is both shattered and drained.

She also informs us that he steroids have been changed to a much higher dosage.

In spite of this she is still in good spirits.

25th January 2007

We have just learnt that the new drugs being given to Justine were for a 7 hour period overnight which is much longer than we were initially led to understand. 

She will in fact have another 2 nights of this treatment.  The correct name of the drug being administered in “immunoglobulin” not as incorrectly spelt and notified before. 

The Heart Monitor Machine she is connected to is being used to checking her blood pressure and the alarm on this machine was going off all night preventing Justine from getting any sleep. She is now shattered from lack of sleep. 

She informs us that she now has to take drugs over the 24 hours daily.

The good news is that our gutsy Justine is back in fighting form and is now in much better spirit having taken in her stride the new routine.

Justine has had suction up her nose today to check to see if virus has gone.  This test will be repeated tomorrow.  She needs 2 clear tests in a row.  However, Justine has been told her toxic treatment will probably last for longer than the minimum of 3 days.  Justine has swollen lips and a sore nose from the toxic nebuliser and will be given a cream to sort that out. 

Justine’s lung function is still dropping and doctors have advised that if the lung function still remains dropped when this virus has been cleared, she will have another bronchoscope and then a biopsy to check her lungs for rejection. 

Justine will clearly be in hospital for longer than she expected but she is still in good spirits. 

Justine is hoping to write another diary entry later today and this can be posted tomorrow.

13th January 2007

Weekly visits are now on the horizon again for Justine as her lungs seem to be doing its own thing - with her lung function going up and down and recently not improving again. Justine's consultant has advised her to bring an overnight bag for Monday's check up (15th Jan) - with a view to further tests. One being another CT Scan and perhaps this time a Broncoscopy. However, Justine has been doing lots of exercise from her last weeks visit and is hoping that this may improve the results without needing to stay in hospital again and stay out to celebrate her Birthday in 4weeks time.