Hello I am Lucy Pearson

Update January 2009

Mum no longer updates the website really, instead she writes a blog. You can find the blog here:

http://thelifeofahearttransplantrecipient.blogspot.com

If you wish to read the blog please could you email me via my email link giving us an email address to use and telling us who you are. We will then send you an invite to read. It is set to private for many reasons which will become clear on reading.

Update February 2008

My mum really does need a slap on the hand for not keeping this updated doesn't she?

I've been having the usual hospital appointments for cardiac checks, blood tests, physio and everything else. My white cell, lymphocyte count and EBV (Ebstein Barr Virus) levels are all high. My lymph nodes in my neck and groin aren't enlarged which is a good sign. I'm growing well and eating like a horse but have yet another cold grrrrrr.

I went on a transplant ski camp in January which was held in Switzerland. I had a lovely time and met lots of other children who had received some form of transplant. It was nice for me to be able to spend time with other children who knew what I was going through. I have some very good memories and made a friend with a boy from Canada called Jacob who had received a heart transplant. If you ever read this Jacob, please could you email me, because I was too embarrassed to ask for your email address! Dad has asked through the organisation if someone could get hold of your email address but hasn't heard back from anybody.

Update January 2008

Sending best wishes to all of our readers for a happy, healthy and prosperous 2008.

Update August 2007

We both deserve a slapped wrist for the lack of updates.

Well..... here we are on the eve of Lucy's 1st year with her new heart and it's a day full of very mixed emotions. Jubilation that she is still here, but also sorrow for the family who are grieving their loss.

We are incredibly grateful and always will be for what they have done in giving our daughter a second chance - they made the bravest and possibly hardest decision. To look at Lucy now and to see how far she has come in this past year and the things that she has been able to achieve since she received her transplant is amazing ...... and it is all thanks to these wonderful people.

Lucy sent two balloons up into the sky yesterday with a short note attached for her donor. I don't think there were many dry eyes. She is a remarkable little girl and has gone through so much. She loves her life and is still achieving many firsts, one of which was only last week - to ride a horse.

Lucy's CMV is not detected at the moment and we have been making the most of our freedom. We've been away camping - something that couldn't even be contemplated before her transplant. She is still having weekly visits to hospital for maintenance on her Hickman Line and fortnightly blood work, even so it's lovely to not be tied to daily IV's. She is also having regular physio and OT sessions. Cardiac checks are monthly at the moment. We really don't care how many hospital appointments she has, so long as she is well and enjoying her new life.

We don't know whether this is read by her doctors, but if it is, thank you for everything that you have done in the past and are continuing to do now. Here's to another year!

Footnote:
Organ donation is a truly wonderful advancement of modern medicine, without it Lucy wouldn't be experiencing a life she has never known. She remarked the other day that she had never felt hungry when she had her old rusty heart, but that she is very hungry now! Thus why she has grown so much in a year!

Thank you everyone xx

Update May 2007

We are sorry that we haven't kept the site updated - life is being incredibly hard at the moment ....

By the 16th March Lucy's CMV titres had risen yet again. It was decided by ourselves and the doctors at Southampton that Lucy needed to have a more permanent solution for giving the IV's. The final say was left to us, but Steve and I went for the option of a Hickman Line. This then meant that Lucy didn't need to be poked and prodded with needles any more. Her line comes out under her arm on her right hand side. It is tunnelled under the skin up across her chest and goes into her right atrium. Yes there is a risk of infection, but as long as we are VERY careful, hopefully it won't be a problem. It means that she can't have a proper bath or go swimming, but hey it's not the end of the world.

Lucy then commenced on a 3 week, 3 times a day course of Foscarnet. We asked if she could be transferred to Salisbury which is our local hospital so that we could bring her home between treatments. We decided that this might be for the best because she is getting very down about the whole situation. She has spent more time in hospital post transplant than she did in the year running up to it. On the flipside, at least she is still with us and enjoying a relatively good quality of life.

On 6th April it was decided that Lucy would need to continue with the Foscarnet once a day. We had hoped that we would be trained to give the medication at home. Great Ormond Street, Southampton and our GP were all for it. Transplantation is about quality of life - there isn't much at the moment because we are having to take her into hospital once a day for the IV.

We believe our downfall was probably asking to go back to Salisbury, perhaps if we had stayed at Southampton things might have been different and we might have been trained to give the IV's at home. Steve and I are really down about the whole situation. It means that we can't go away for a weekend, or come to that for a weeks' holiday which I must say is desperately needed at the moment!

Lucy had a biopsy to check for rejection at Great Ormond Street on 18th May. We should have the results back on 21st/22nd. IF it shows there is no rejection then the idea is to maybe lower her immunosuppression. She will be watched for about a fortnight. IF during that time she remains stable then her Foscarnet may be stopped. It will then be a case of waiting to see whether her body can fight the virus and keep it under control. Hopefully she may, but we have to remember that she has never managed up until now. It might not be helped by the fact that she is lacking a spleen. She will need to have regular blood tests to check the CMV titres (levels) - again thank goodness for the Hickman Line, it was the best decision we have ever made, and thank you to Southampton for making it possible, and for doing it so quickly!

There are a hell of a lot of politics going on at the moment with regard to administration of IV's at home. If the person who is the sticking point in all of this were to read this, Steve and I would like to thank them very much for what they are doing and have done to our family over the last 6 weeks. It's not just Lucy that this is affecting, it's EVERYONE. We wish you were here in the evening to hear Alice and Ben cry when Lucy goes off in the car ............

Update February 2007

13/02/07

Lucy was discharged from hospital on Friday evening, it's good to be home. Her virus levels are low. She is having weekly blood tests at the moment to check on the levels. Fingers crossed that she stays out of hospital now - she has spent more time in hospital post transplant than she did in the year running up to it.

Thank you to everyone who has sent cards and gifts to her. She has already received a few Valentine's cards - thank you to whoever has sent those!

03/02/07

Lucy is to have the 3rd week of IV's to hopefully bring the virus levels right down to the barest minimum. We do know that it will probably never go away though. She is bored stiff and wants to come home, but knows that she needs to have these IV's.

We had a very positive chat with her consultant today, who himself seems very positive about the future. At least we all know what's going on now which is really nice.

Steve and I are swapping over tomorrow, so there won't be any more updates on this page until the end of next week.

02/02/07

Nothing much to update really. The doctors at Southampton are still waiting for their phone calls to be returned. No one totally knows what is going on, it's very frustrating and feels very much like she is out of sight out of mind. I guess that everyone at the Unit are very busy with transplants at the moment which in itself is good news and is what lots of people are working towards - getting the numbers down.

Lucy had her central line put in her neck on 25/01 and that is starting to pack up. Hopefully it will see out the remainder of her treatment. The nursing staff are putting heparin down it to prolong it's life and keep it working .

I've had to bring all of her personal things home because we have lost a couple of items this week, one of which had only be loaned to us and the other a frozen pasta meal which had her name on it. How can people be sick enough to take from a child? Nothing surprises me anymore. These people are in the same position as the rest of the families on the ward, yet they obviously feel that they are entitled to do this. At the end of the day, it will be their children that suffer in the future when there isn't anything on the ward for the children to play with. The ward are losing stuff left, right and centre. Anything from a TV aerial to a laptop computer - it is so sad. So our dvd and frozen meal are nothing really in the scheme of things. Just sad that they have to take things that belong to another patient.

Update January 2007

24/01/07

Lucy is on her 3rd cannula now. They aren't lasting with this treatment - usually 24 - 36 hours. Apparently the drug is hard on the veins as it causes inflammation and sends the veins into spasm. No wonder she gets upset when it starts to hurt! Steve was told last night that the doctors are planning on doing the sub clavian line on Thursday now. They are just so busy on the ward at the moment, and I guess something like this just isn't priority for them. I hope it's done soon because it isn't helping Lucy's needle phobia.

She had bloods taken on the 22nd which have been sent to London to test the CMV levels now. I will update when I know the information - don't expect it to be before Friday because it seems to take ages for the bloods to arrive in London.

Other than that, she is ok - eating and drinking well and bored stiff with the prospect of having at least another 2 and a bit weeks in hospital. It's a shame that we can't be trained to do the IV's at home. The only thing against us doing it at home is that the doctors have to keep a close eye on her Renal function as the drug can knock that off and she is in the right place if dialysis were needed - as a doctor told me on Sunday.

21/01/07

Lucy was moved to Southampton yesterday afternoon and is well in herself although she did spike a temperature of 38.9°C overnight. Better IV access is needed, so discussions are going on as to how best go about it. She will probably need to have a subclavian line put in. This maybe will happen on Tuesday in the catheter lab as she needs to be knocked out for it.

18/01/07

Lucy was re-admitted this evening on the instructions of GOSH as her CMV levels are high again. She has had to go into Salisbury as Southampton don't have any beds at the moment. She commenced the Foscarnet IV treatment this evening and will continue to have this every 8 hours for at least the next 3 weeks or until the virus is irradicated this time.

06/01/07

Alice's 5th Birthday and Party. I have been able to invite some friends to come along too and will be able to run around and dance as we are having a disco.

04/01/07

Just a small update, not about me, but about a dear friend of mine called Emily. Emily is 22 years old and has Cystic Fibrosis. She has been on the Active List for 22 months and was incredibly poorly. Emily got called to transplant this evening. She went to theatre at 9pm and is currently undergoing her surgery. This was her second call, her first was a false alarm that happened a few days after I received my transplant.

I have gone to bed tonight a very happy little girl knowing that my prayers have finally been answered that Emily would get her lungs.

I also said a prayer for the wonderful family out there who made the decision that even though they were struggling with their loss, they have given my friend the chance to carry on living her life.

God bless xx

03/01/07

Outpatients at Great Ormond Street

Update December 2006

31/12/06

Wishing you all a very Happy New Year - it's early, but the website may not be updated for a few days. We hope that 2007 will be the best year yet for everyone. Thank you for your kindness, your support and your friendship throughout everything we have been through this year.

25/12/06

I had a fantastic Christmas and Father Christmas was very kind to me. He bought me my roller skates that I had asked for. He also bought me lots of other things which I am really pleased with.

We have had a lovely Christmas. Mummy and Daddy were able to relax and enjoy themselves this year.

A Merry Christmas to everyone reading.

17/12/06

Mummy has been very naughty at keeping you all updated - sorry! I had my Nativity Play last week - I was a Narrator, Alice was a Star. Ben had his Nativity and he insisted that he was going to be a Fireman, he was infact the Wise Man bearing Frankincense!

I have had a good result back from my CMV blood test - the level is down to 16,700 now. Mummy and Daddy say I am looking the best I have done for a couple of months. I am starting to eat and eat ..... oh and eat! So hopefully I will regain some of the weight I lost.

Only 1 1/2 days left at school before we break up for Christmas. I am so excited about Christmas, as we all are in this house.I am off to a Christmas Party at Southampton General today. I will meet my friend Wills who I was in hospital with earlier on this year. I haven't seen him since I had my transplant and will be able to run around with him today - I bet he will be surprised!

08/12/06

HAPPY BIRTHDAY SWEETHEART! Wow, the last 7 years have certainly gone fast. Keep doing what you are doing and keep smiling your beautiful smile.

Mummy and Daddy love you very, very much, as do Alice, Ben, Robert and Emily.xxxxx

Thank you whoever you are for making this an extra special day for us. God bless x

06/12/06

Outpatients today at GOSH. I actually spoke to Dr Burch today, up until now I have always gone quiet when he has spoken to me. I hope he didn't think I was rude, I am just a little bit shy with some of my Doctors. I have been the same with Dr Keeton but will speak to him now!

01/12/06

We were given two options over possible treatment for the virus this time: oral valganciclovir or admission and more IV's - we chose the oral option. If it doesn't work then we have the other to fall back on. Fingers and toes crossed that it does work though! Regular blood tests will determine whether it's going the right way.

Update November 2006

29/11/06

Just to let you all know that the CMV has increased again in Lucy's blood. This was something that I was worried would happen when she was discharged as the virus was still present. It affects our whole family, not just Lucy and now means that Alice will become increasingly wobbly again. We received the news this morning from a Registrar at Southampton after the results of a blood test that was done on Monday came back.We have to take her up for a repeat blood test this afternoon and she will most likely have to stay in. Thus spending her 7th Birthday in hospital - we really hoped and prayed this wouldn't happen. Southampton are waiting for GOSH to speak to them to tell them which way to go with this. Blasted CMV!

27/11/06

Lucy has gone to school today for the first time since July. She did go for an hour on Friday last week and has been very much looking forward to going back today. I am in total awe of my little girl and what she has achieved over the past few months. I have to admit to having a few tears in my eyes when she went off with the rest of her class today. I am so, so proud of her - she certainly puts things into perspective! It's thanks to the fabulous gift that she received this Summer and the fantastic care that she has had post transplant that she has done so well.

22/11/06

Lucy is home. The CMV levels according to the tests done at Southampton stood at 32,700 copies/ml when we were discharged. We don't know the levels from the other test done in London as they didn't come back whilst we were in hospital. She has to go back to hospital twice a week for blood tests on a Monday and Thursday and is also having some psychology for her needle phobia whilst she is there, which thankfully seems to be helping again. She had lots of needles whilst in for this last month, so it isn't surprising that she has a problem again. She is going back to school next week for the first time since she was transplanted. As she has a statement she has been receiving schooling at home since the school year began which is brilliant as it has enabled her to keep up with her classmates. She will be going back mornings only for the first week. On the days that she has hospital appointments she will be going for afternoons. Alice is really looking forward to having her big sister at school with her.We need to start shopping for her bits and pieces for school now - there wasn't any point in buying school shoes until we knew she could go back. We also have a birthday in a couple of weeks time - hard to believe that she is almost 7. This is a birthday that Steve and I thought we wouldn't be celebrating, and to be honest we have the Donor and their family to thank for the fact that we are. It is amazing to see her running around the garden chasing after Alice and Ben. Life has changed so much for her over the last few months. Christmas is going to be extra special for us all this year.

As I know many people from SGH read this, we just want to say a huge thank you for everything you did whilst Lucy was in over the last month. You have all been brilliant, and believe it or not, she is missing you!xxx

10/11/06
The CMV levels are back and have gone up to 64,000 copies/ml. No one is particularly worried about this slight rise - so we aren't either!

08/11/06
Apparently a comment I had made on my previous update has been taken the wrong way. Having read it I can't really see how it can have, but to anyone who may have read it wrong or misinturpreted it, here is an explantation.

When I mentioned that we were living day by day waiting for the next set of blood results to come back because the virus levels were going up, then down, then up again it was true we were....... we were just waiting to see what the next set would show. Everyone was after news, and we didn't have any until the next blood results came back. I knew there was never any chance that the CMV virus would cause her to reject, but there were other factors, i.e. that the doctors caring for her were worried about her diarrhoea and vomitting and her not absorbing her anti rejection drugs properly. So everyone was really being very cautious and in that situation we were just sitting there waiting and waiting, but also checking to make sure that there were no signs of rejection. We did understand that CMV is treatable, but when your child has it for the first time and you are told the possible risks/side effects of the drugs etc. etc. you are going to worry. Especially when your child has been so well post transplant. I think added to that the fact that she didn't seem to be getting on top of the virus didn't help really. The hospital she is in now have been fantastic in keeping us to date with everything that has been going on and have been wonderful with Lucy. These guys aren't used to treating this virus, so like us, were being extra cautious and some of the doctors were incredibly worried.

Anyway, enough of that, here is the proper update: Lucy's virus levels came back last night - 56,000 copies/ml. I am touching wood whilst I write this, but I would like to think that she is winning now. Last time I celebrated that the level was coming down, it shot back up again. It hasn't been this low since she has been poorly, so as I say fingers crossed. All blood tests for kidney and liver function and blood counts seem to be good. She is still on a magnesium supplement at the moment. Don't know whether this will stop when the foscarnet stops. She is starting to get back to her usual little self now and seems a lot more interested in everything. She is getting her colour back too and is back to being cheeky, so that too is a good sign, as is the fact that she is starting to eat. Has been sick a couple of times but I think it was because she got her magnesium tablet stuck. Her tacrolimus level was checked yesterday and we await that result - it was 6.4 when last tested. The result should be back either late today or tomorrow hopefully.

She had a subclavian line put in last Friday in PICU which became quite a problem and required her going back to have it moved. They took her down to the catheterisation laboratory on Monday and put her to sleep properly to do it this time. At the moment it is working well and we are all hoping it will last until the end of the treatment.

02/11/06
Lucy's blood results came back last night. Her tacrolimus, which is one of her anti rejection drug levels needed to come down. It apparently needs to sit at 12 for her to be protected enough against rejection. It was 30, came down to 23 and last night it was 10. Hopefully this will help her body increase it's own natural fighting ability enough to help fight the CMV virus along with the foscarnet.

The new long line that was inserted on Tuesday has to come out, it is causing redness up at the top of her arm when it is flushed. The doctors are discussing how best to insert a new one because Lucy is very needle phobic and has got worse during this admission. It is being discussed whether she needs to be very heavily sedated to make insertion easier for all concerned. We have to start patching her left eye again [note to myself to remember to take in the patches] as her right eye has deteriorated slightly. Hopefully the CMV virus level will start to come down now. It currently stands at 1,600,000 copies/ml. Bloods are being taken today and will be tested to see whether we are starting to make any headway, the results of which should be back late tomorrow afternoon. We are still living day by day waiting for the results to come back because the level just keeps going up at the moment. Neither Steve or I can see any light at the end of the tunnel yet.

On a lighter note, she has been allowed to go outside. Her white cell count is 4 and so long as she isn't in crowded places or around anyone with germs/bugs etc., she is allowed to spend time either going out for a ride around in the car, or out in the hospital grounds. This has seemed to perk her up a bit and she looks forward to getting out as she has now been back in hospital for two weeks. We dare not ask for an estimate of how much longer she will be in. I guess it will be at least another 2 - 3 weeks.Steve and I will swap duties tomorrow, he is coming home for 5 days and I am going in with Lucy, so the website won't get updated on this updates page. Steve may keep you all up to date via her guestbook, so check there.Thanks everyone for the continuing support at this time, it is greatly appreciated as we are struggling to keep things together at the moment. Alice and Ben are struggling with it all, which is very, very hard. They had got used to their 'new' sister and want her back.

Update October 2006

30/10/06

Talk about coming back down to earth with a huge bump!Lucy was doing so well, but has been very poorly for the last 12 days and is back in hospital with a virus called Cytomegalovirus or CMV as it is more commonly known. In a person who is immuno suppressed this is a very serious condition. It has to be treated quickly.

Lucy was started on a drug called gancyclovir on 19/10 but it had little effect on the virus. She has since been started on a drug called foscarnet.

She will be in hospital for at least another two weeks if the treatment works. Daily blood tests are done to check on different levels. She is having an eye test as the eyes can be damaged by the virus.

Please everyone keep her in your thoughts and prayers. She was doing so, so well and is feeling very poorly at the moment.

4/10/06

In Lucy's own words "I feel GRRRRREAT!" This is testament to how good transplantation can be when it works. Lucy is due to go back into hospital at the beginning of the month for a heart biopsy to check for rejection. She showed some signs of rejection after the first biopsy. We are keeping everything crossed that the rejection is less or shows none at all this time. I will admit that I am worried about this appointment, especially as I am not going to be able to be there - Lucy is going with her Daddy, who is more than capable of looking after her. It's just she has never gone under general anaesthetic without us both being there with her. We watched some old film of her yesterday and cannot believe just how ill she was in the weeks leading up to her transplant. Life was a huge struggle back then, just getting her to eat and gain weight was a problem. We feel really let down at the moment, as we didn't get any support from where it was truly needed, just grief and stress.

Other than that, we think that Lucy continues to be doing well. We will hopefully find out soon if she will be able to go back to school part time. She is missing her school friends terribly. We have been able to keep her up to date with her school work as she is still statemented and her new one to one, Mrs Cassin, has been able to come to the house to give her some lessons.

Update September 2006

Firstly, thank you everyone for the cards, gifts and good wishes following Lucy's transplant. We cannot believe how so many people can think so much of our little girl. It is truly mind blowing.

Thank you also goes to the transplant team, and to the team on cardiac critical care 4 for the fantastic care of not just Lucy, but us too. A big thank you to everyone involved in the actual transplant surgery and for listing her for transplant right back in December. Also the care received on Ladybird Ward has to be among some of the best that Lucy has ever received in her 6 1/2 years. Without you all, we know that she didn't have long left.

Also, thank you to the donor and their family for the fantastic gift you have given her. This selfless act, at such a difficult time, is going to enable Lucy to experience a life that she has never known. May you all find peace and comfort in the fact that what you have done means so much to all of us. Mum is starting a new page where our thoughts can be written over time.I have spent this month doing everything that I couldn't do before - and more besides.

Some friends that Mummy made on a charity called Heartline's message forum all clubbed together and bought me a 14 foot trampoline. I could only dream of being able to bounce before I got my new heart - now it is a reality.

I have a new bike and the ladies and customers from Barilla Kennels in Ringwood have all clubbed together and bought me a bouncy castle. Thank you everyone, I LOVE IT. It was one of my wishes, to be able to use a bouncy castle instead of having to sit and watch.

I received some VIP tickets to go to see McFly at Wembley Arena courtesy of the Sharon Osbourne Show. Emily, Alice and I had a FANTASTIC time. We did get to meet them! WE LOVE MCFLY!!

I also got a VIP tour of Moors Valley Country Park by Mrs Cassin's husband as he works there. Thank you both of you, I really enjoyed my time out with you. What a fun packed month! I am recovering well, eating well and really doing everything well!

Next month I have to have another biopsy to check for rejection. Let's hope that it shows up less than last time. Fingers and toes crossed!

Update August 2006

We came home from our holiday and visiting some of Daddy's relatives in Yorkshire to an absolute bomb site. Some work was being done to the house and Mummy thought that it would be finished when we got back - no such luck! I have had a pacemaker check. The battery life is going down really quickly, much quicker than it has ever done before. The battery has 2.5 years left on it. I've only had this pacemaker since January 2005 and it started off with 6 years on it! The rest of August went by so quickly - I GOT MY TRANSPLANT CALL!

The only concern mum and dad have is where the Hypertrophic Cardiomyopathy has come from????

Update July 2006

I have been to get some more insoles for my shoes as my feet have grown. I also have a psychology appointment at Salisbury this month. 08/07 We went to Brighton and all did a 13 mile walk to raise Donor Awareness and raised getting on for £200 not bad for 4 hours work. I'm starting to find things more difficult now.
10/07 I have hardly been to school this week, I am too tired.
13/07 Managed a day at school
14/07 Am home again today.Well it's the summer holidays soon! We went up to North Yorkshire for a week and had a lovely holiday on a farm. Little did we know what was just around the corner...........

Update June 2006

14/06 Had my 6 monthly re-assessment at Great Ormond Street. Mummy and daddy both thought I wouldn't need this appointment because we all thought I would have a new engine by now. My exercise tolerance is getting less. The people that matter can see a deterioration in my health.

Update May 2006

I've been back to the Orthotics department about new insoles and have also been to see my favourite lady in Salisbury about my eyes - she has said that they aren't getting any worse so I only have to wear my eye patch in the afternoon now - wooohooooooo!

Update April 2006

Been in hospital again this month - I collapsed at school twice - maybe three times, but no one is certain about the first time I collapsed because I may have just tripped. I've had lots of tests done - pacemaker, ecg, echo, brain scan, xray..... and there is no answer as to why I did it. Let's hope I don't do it again, perhaps I am doing too much and not getting enough oxygen now - who knows? Mummy and daddy certainly don't! At least I didn't do this at home and there is a third party involved, now mummy and daddy can't be branded paranoid parents again!

Update March 2006

I am having lots of problems eating now and have been into hospital for nearly 2 weeks. I am going to see a psychologist now as apparently I am showing anorexic tendancies. I just can't eat, if I eat too much I am sick. Mummy and Daddy think that it is because my heart is getting so bad, but they have been branded paranoid parents. Miss Sharpe my one-to-one at school has been noticing this problem since way before Christmas and everyone at school knows the truth.

Update February 2006

Lucy has an appointment on 28th for an ultrasound scan of her Femeral arteries, veins etc. This is just to provide a picture of how good her IV access will be on the night of transplant.

Update January 2006

Nothing much to report really. Lucy had chicken pox over Christmas, so was suspended from the Active List for 3 weeks. She is now back on and we are playing the waiting game again.Have been up to GOS a few times this month for Psychology to get her over her fear of needles.

Update December 2005

I am going up to GOS on 5th December to have an echo.The echo took over an hour and gave mummy and daddy some concerns regarding my heart. I am to be discussed in their Conference on 8th December which is my birthday. Mummy has told them not to phone on that day with bad news!Well the news has come back. There is no more surgery available for me. There is a chance that I might be suitable for heart transplant. We are going to go up for an assessment as soon as they can get a date for us. It probably won't be until after Christmas.Mummy has had a phone call 9/12/05 to ask us to be at GOS on 12/12/05 for Transplant Assessment, we will be there for 3 days. Mummy is panicking.15/12/05. I have been for my assessment. I am suitable for transplant. Mummy and Daddy are very surprised at this, because they were told that I probably would never be a suitable candidate. We have come back with a pager. It could go off any time. I am to be listed from tomorrow 16/12/05.

Update November 2005

We are still waiting to hear of a date to see GOS, they say that they haven't received any of my data yet!

Update October 2005

Mummy took me to see my cardiologist at hospital this week. There is nothing more surgically that can be done for me there, I am to be referred to Great Ormond Street to their Heart Failure Team to see if they can do any more for me.

Update February 2005

I am seeing a Clinical Psycologist on a weekly basis to try to get me over my fear of needles and going down to theatre. My parents hope that it will help me, as nothing else has!I am beginning to get very tired now, I cannot manage a full day at school any more. I am only going for the morning now (9am - 12 noon). I am also starting to sleep a lot more and am getting increasingly breathless when I try to walk around.

Update January 2005

I went back into hospital on 12th January for a pacemaker change which took place on 13th, I did so well that I came home on 14th late in the afternoon. Everyone was really pleased with my speedy recovery from the operation. We now have to wait to see whether or not I am going to have the TCPC done, Mummy and Daddy have been told that I have only a 50-50 chance of surviving the surgery. Mummy and Daddy aren't too happy about putting me through this surgery.

Update December 2004

I went off to Lapland on 21st December with the Children's Heart Federation, mummy came too. We had an absolutely fantastic time and you can see pictures of our trip on a separate page.

Update October 2004

Mummy and Daddy are really pleased - I GOT MY STATEMENT which is 25 hours a week. My School should be very happy with that.

Update September 2004

SCHOOL - I love it. I am making lots of new friends. They have all been told about my heart and that I can't do everything that they can. Everyone looks after me.I have been in for my last Carvedilol increase and have tolerated it very well. I am now on the maximum dose. Mummy and Daddy will hopefully get to have a meeting with my Surgeon and Cardiologist next month to discuss where we go from here.I started school full time on 17th September. My teacher is Mrs Crump and my Special Needs lady is Miss Sharpe. I do get very tired by the end of the day though. We are having lots of meetings with different people at the moment about my Statementing. Hopefully we will know if I am going to get it and at what level by the end of October.

Update August 2004

I have been in for my second and third dose increases of Carvedilol and seem to be tolerating it all ok. I was very tired for a couple of days afterwards but soon got back to my normal self.I also now have my inserts in my shoes - I don't like them much! I now have to get used to them and will go back to see my Physio in a couple of months.

Update July 2004

I am now under the Physiotherapy and Orthotics Departments at Salisbury District Hospital - they are going to try to get me walking better than I do now. I am going to have special inserts made to go into my shoes. This will turn my feet over and thus move my knee joints into the correct position. I am getting very blue and very breathless now. Hence I have also been back in to Southampton General E1 ward a couple of times over the past month.The first time was to increase my Enalapril. It made a difference for a few days but I soon went back to how I was. The second admission was to put me onto Carvedilol and Spironolactone. The doctors are trying to get my right ventricle functioning properly. Mummy and Daddy were warned that I would be very tired after the initial dose - this is very true and I am being quite crabby at the moment! I need to go back in on August 2nd to have the Carvedilol increased, then again two weeks after that. The doseage will be increased a few times more after this, it depends on how I tolerate it though.We all spoke to Dr Keeton and Mr Haw, they are intending to get us back to chat with them somewhere in October to discuss my surgery.I also start school on 1st September. I am undergoing the statementing process at the moment as I am going to need lots of extra help at school. It is a long process but hopefully we are all going in the right direction. I will be attending Western Downland Primary School. I am really looking forward to going and already have most of my school uniform!