Nice information john. Thank you...

2011-03-17 01:06:58 - London

Hi,
Fantastic post.
I really admire this kind of information.

2011-03-17 00:56:32 - London

I did not know you, we never met
But the gift you gave me, I won't forget
You had to die, so that I could live
Life, the greatest gift anyone can give
I've done so much since that fateful day
And met some amazing people along the way
Today is my 11th Transplant anniversary
Thank you for the life that you have given me.

John Reuben, Heart & Lung Transplant 4/1/2000

2011-01-04 04:21:13 -

No efficient words for your works for your web site, tanks for your information.
Dank U, merci, tanks, grazie,
Please don't stop

2011-01-02 04:31:10 - United States

Hi John!
Our friend John just put me onto this site. So many special stories, so many special people.
My Daughter Colette suddenly suffered 2 severe strokes at the age of 11.
She was rushed to Gt Ormond St Hospital where it was found that she had dilated cardiomyopathy. We stayed there four months until she received her new Heart...we will be celebrating her 9th 'Heart' Birthday in June. Colette is my inspiration!

2010-04-02 07:06:07 - Watford

My dad had a Kindey failure back in 2002 when I was in year 2 at my primary school, he has been on the waiting list ever since with no luck yet. Im just leaving a message to say that I hope to join the Donor register as soon as I become old enough to do so.. I just wish more people realised what good it would do to many people all over the world.

2010-02-28 13:48:14 -

Hi John,
It's been a long time since I've been in touch and I hope you are well.
I was just looking through some of the messages on your guest book page and I thought maybe some of your visitors might like to know about our organ donation webside www.strangeboat.org. There might be some useful information there, and it may also give support and comfort to people in the organ donation fraternity who are suffering in their different ways.
Strange Boat Donor Foundation is currently working on a very special project, to establish a national commemorative garden to celebrate the lives of all organ & tissue donors and to raise awareness of the importance of organ donation. It's at a very early stage as yet but it looks like this sculpture/garden will be located just outside Galway city in Ireland. The website will keep people updated on the progress of the project. Good luck to all who visit your site and we would welcome them at www.strangeboat.org.
Best regards to you John,
Martina

2010-02-23 06:48:17 - Ireland

Hello My Name is Charlotte tate . This year will be 16 years post Heart Transplant . If anyone would like to ask questions or swop stories That would be great From Charlotte Tate ( Rogerson)

2010-02-06 12:31:35 -

My son, Josh, was pronounced brain dead on Wednesday, June 3rd 2009 after he suffered a serious head injury resulting from a car crash. He was 17 years old. It took not a moments hesitation to offer his organs for donation. The following 14 hours were so precious to us as myself, my husband and Josh's sister sat at Josh's bedside as he was kept alive on a ventilator until recipients could be found. We held his hand, kissed his forehead, stroked his hair and talked to him. Many of his friends turned up to say goodbye and stopped all night with us. He went for his operation 10.45am on Thursday 4th. We received an amazing letter from Trillium to say that Josh had saved 6 lives - people who were critically ill. We miss Josh so, so much. Words cannot describe our feelings, but we feel so comforted and proud of Josh that he lives on not only spiritually but physically too in others.

Many, many of Josh's fellow schoolmates signed up to be organ donors in memory of "The British Kid".

2010-02-03 12:54:59 - London, Ontario, Canada formerly Redditch, Worcs.

Hello everyone,

Jim from Sydney here.

I have two children, both post heart transplant... Andrew (17) and Lauren (11). Andrew had his transplant at 13 and Lauren just a few months ago. Both doing fine.

The most important advice for new parents/carers I can give is to look after your own health and get some respite breaks. It is a long haul and so easy to burn out.

Best wishes all.

2009-12-06 04:51:46 -

I was the same with my kids when I was told I needed a transplant. I did not want to hurt them by being too close to them if I died, so I grew a bit distant. It hurt me to see how much they loved me and so how much they would be hurt if the transplant was not a success, iyswim. Also, the illness is terribly depressing which makes you hard to be with. Be there for him when he wants you, try to understand when he does not. Good luck to you both.

2009-11-06 09:42:51 - Winchester

Please can anyone offer any support, advice. My ex boyfriend ( of 17 months)is waiting for a heart/lung transplant. I am very much in liove with him, but as his illness got worse he starting to push me away, i was/am very confused and love him so much. vicki

2009-10-11 16:50:28 - leicester

Good site John, thanks for comming to my 10th party last march...time we got together again. Time flys too quick for us.

2009-10-06 12:13:03 - Grays Essex

my daughter had her transplant when she was 1 years old at great ormond street she is 5 now and doing realy well i celebrate every hearts birthday but as the years go on i start to panic as i know it wont last 4 ever but i do everything to make her time the best does this mean im selfish 4 feling this way im not sure .

2009-09-21 13:02:09 - Birmingham b34

Hi,
I am trying to start a chapter on Transplants for children.In the memory of my son Jonathan.
My son received his transplant 7 yrs ago, but I lost him Aug 31 2008. He was 22.
Can you help me or steer in a direction that can help me?
I enjoyed your site.
Any help would be greatly appreiciated.
God Bless You
or if anyone that reads this can help please email me
I wanted to do this for a long time for parents and the children.....
Thank You

2009-08-22 12:07:42 - Shady Spring Wv

My dad had surgery on Tuesday 16th June 2009. He's still in ITU and at times I've been so desperate to have further knowledge and read other people's experiences of heart transplants.
I found your site at 2am on Saturday morning and it has given me the information, guidance and hope for the future.
John - I talked about you to Nicky one of the co-ordinators and she said she knows you and you have got her into triathlons - well done.
You are an inspiration to all.
Thank you. x

2009-06-21 06:07:36 - Dorset

Hi. My wife, Christina, had heart transplant on May 16th 2009 (after many years aortic valve stenosis and Ross Operation), she is currently in hospital and everything seems to be ok. Your site gives us such hope. Many thanks.

2009-06-07 23:17:14 - Greece

Hello John.....I'm visiting your website for the first time because your twin sister told me about you at Curves where I work out.
You really are an inspiration !!!
My eyes have been opened....

2009-05-13 04:46:51 - Gold Coast, Australia

HI i had had my transplant on june 4th 2008 and im doing great thanks to all the team at papworth hospital they do a great job.... all my thanks to dr dunning and all his team.

2009-05-10 11:08:32 - southampton

Great website. I had a heart transplant 23 years ago and I'm doing well. Big thanks to Papworth hospital. xx
Anyone waiting for the op, hang in there.

2009-04-30 09:40:02 - Hampshire, UK

I had a transplant in april 2006,just lookin at your site gives me so much hope..............thanks so much

2009-04-26 07:40:32 - Nova Scptia, Canada

Hi Mickey,
Truly God is great! I am proud to be one of your friends. God bless you!

2009-04-07 20:00:06 - Philippines

My mum had a lung transplant at Harefield last week. Doing well. Glad I found this site though. Thanks

2009-03-23 11:51:52 - UK

keep up the good work,my first wife BARBARA dawe.had her transplant 13/6/1985. she loved life to the full,also she was a very brave person .sadly she passed away 21/11/2000.and i miss her. i believe in transplants,

2009-02-05 05:21:43 -

HELLO MY NAME IS CHRISTINE I HAVE 2 CHILDREN BORN WITH DILATED CARDIOMYOPATHY... MY SON IS ALMOST 3 AND IS DOING WELL WITH MEDS. MY DAUGHTER IS 10 MTHS OLD AND SHE RECEIVED A HEART TRANSPLANT 6 MONTHS AGO SHE WENT ON A MECHANICLE DEVICE CALLED THE BERLIN HEART THAT KEPT HER ALIVE UNTIL SHE GOT HER NEW HEART AT 4 MONTHS OLD. SHE JUST GOT HER FIRST HEART BIOPSY AND SHE SCORED A ZERO WHICH MEANS NO SIGN OF REJECTION IM SO GRATEFUL GOD IS GOOD!

2009-02-01 21:25:14 - HOUSTON TEXAS

My 37-year-old fiancee has a congenital heart defect called Transposition of the Great Vessels and is facing transplant within the next few years. We go in January for his evaluation to find out where he will fall on the list. He is terrified and I don't know how to help. I found this website, and it is very encouraging. I am glad I found it. I sent him the link with part of your story, John. Thank you for taking the time to make this website.

2008-12-29 01:26:33 - California, USA

Thanks for your inspirational story. My husband, Scott, is currently in the hospital on the list for a heart transplant. We've been waiting for one month and I sometimes wonder if the time will ever come. Scott made the wait a bit easier to take today when he said that every day we wait is another day alive for someone 'out there'.
The stories of amazing transplant outcomes gives me such hope. I want to have my husband for a long time yet and our 4 little kids need him too!
Thanks,
Melanie

2008-12-22 23:53:21 -

Hi John, I just want to say that your story is inspirational to all those who have had any form of transplant, and there really is light at the end of a very long tunnel. My dad has had chronic heart failure for as long as i can remember, but it all came to a head in 2006 when he contracted septicaemia and had multiple organ failure. No doctors thought he would live, let alone have a transplant, and now he is as fit as a fiddle thanks to a 16 year old boy who decided to donate his organs after his death. More people should seriously consider organ donation, it will help more people enjoy precious time with their family that they otherwise would not have.
Charlotte Roberts

2008-11-25 03:48:14 - Manchester

I am a third you degree nurse studying at Brighton university, hoping to one day become a specialst cardiology nurse. I am in the process of researching my dissertation (of which I have yet to decide a title) that surrounds the idea of whether nurses truely understand patient's experiences following heart transplant, and how this affects the nursing care provided, pre and post operatively.

I cannot express how useful all of your stories and experiences have been in terms of opening me up to the way real people feel (rather than reading it in a research paper).
I would be extremely grateful to anyone who would like to share anything with me that might contribute toward my personal understanding (and of course for my essay), such as good responses by nurses, any psychlogical, social, or emotional issues that have (or haven't experienced when you may have expected), whether your post operative care surrounded rejection psychologically, etc.

As starting grounds I am very interested in your individual experiences and feelings surrounding this area, but am sensitive to the fact that these may be extremely personal views, however please e-mail me should you wish.

I am fully aware of my role within the maintenance of confidentiality and can assure you that none of your personal details would be disclosed unless full permission is given.

Thank you ever so much,
Alexandra

2008-11-21 17:37:55 - Brighton

Nice resource I will share with my members.

2008-11-20 23:13:41 - USA

Have you any Christmas cards this year? I loved last years ones and would be happy to give a donation again??

Jillx

2008-10-17 04:50:37 -

Congratulations to you John and to all who took part in the London Triathlon.
You are all such inspirational people.
Keep in touch with us at www.strangeboat.org.
Best regards,
Martina

2008-09-03 08:55:29 - Ireland

Hi, I am new on this site but thought that I could pass on some good advice to Heart transplant patients.
My daughter had a transplant in 1988 at the age of 9 months thanks to Sir Magda Yacub. She grew through her childhood with no problems at all and even won a few medals in the transplant games. When she got to 18 her local 3monthly check ups stopped at Leeds Infirmary as she was no longer classed as a child. Our GP although asked, never set up another clinic to visit for her check ups & Huddersfield said they couldn't offer it. So apart from her 12 monthly Harefield she has not had any other tests.
As an adult she was always complaining "why do I need check ups anyway? I am always told I am fine" & being a rebel teenager she started to refuse her cyclosporin which was added to by a few months of depression which didn't help. We had to change GP's to get her some support for that. Still the new GP never managed to set up any check ups for her transplant. Kelly Marie Wood decided that as she had been missing taking her Cyclosporin & nothing had happened to her, She thought that she didn't need them anymore despite pleese from Mum & Dad.
Kelly started with a cough & tummy aches then on 14th July she was out walking & complained of shortness of breath. After a nights sleep she said she was no better & had chest pains. I rung our GP & he saw her later in the afternoon. He said that her blood presure was low & her pulse was very high & that she needed to go to hospital. Huddersfield told him not to send her there & that she had to go to Calderdale hospital which was 10 miles away. We took her and they admitted her on the Tuesday evening. Apart from a fluid drip they didnt treat her for anything else despite me suggesting that she may be rejecting her heart. They politley told me that maybe I knew more about medicine than they did? She was not seen by a consultant and on the Wednesday I was going mad because they were not doing anything for her (even offered her paracetamol when she complained of chest pain). She wasn't seen by a consulant in the 4 days she was there to our knowledge & they still hadn't found her hospital records from Huddersfield.
I went home & rung the transplant clinic at Harefield & told them I wasn't happy. When we got back to the hospital at Halifax they had rung & told them to test her cyclosporin level & do an echo. They didnt do that until the next day & I could see Kelly going downhill quite fast. Thursday night they put her a steroid drip up & friday she was ice cold & white, needing oxygen to help her breath. They told us that they were sending her to Harefield.
Saturday morning at 8am the anbulance set off with her down the M1 with no doctor seeing her & checking her condition prior to her leaving, she was white, cold to the touch & her lips were very blue & she needed an oxygen mask on all the time. The ambulance was booked for just a hospital transfer with no permission to use the blue light. It took well over 4 hours to get to Harefield & she was so ill on arrival they took her straight into ITU. Harefield were alarmed that Calkderdale had not told them just how ill Kelly was & that they hadn't sent her with blue lights.
I was told that Harefield had written a letter of complaint to Calderdale but I do not know what it said.
Kelly was put onto life support & we were never able to speak with her again. Doctors told us that they didn't expect her to last 24hours.
Kelly was a fighter & in fact lasted 8 days in ITU, but on the 28th July she gave up & passed away due to 'Acute cellular rejection'. We were not spoken to by a doctor following her passing but just given a pack to register her death.

My advice to all people having a transplant or have had one is;
1) NEVER stop taking your ant-rejection drugs as 100% certain you cannot live without them.
2) ALWAYS insist that you get your blood tests & check ups even if you have a rubbish GP or local hospital like us.
3) If you do have symptoms like Kelly did, contact Harefield FIRST not your GP or local hospital. They do not have the experiance or knowledge to deal with it.
4) Dont waste a minute as I think time saved may have just saved Kelly's life.
5) Heart transplants DO WORK if you follow all your transplant clinic advice. Kelly had 20 good years & I belive she could have had 20 more!
We raised £172 for the Harefield Scanner Appeal from donations at her funeral.
If you feel you want to read more about Kelly's life. Go to The Huddersfield Examiner on the internet & in search put Kelly Marie Wood.
You can also just put her name on the internet & her pals have put a tribute to her on You Tube.
We shall forever miss her.

Good luck & best wishes to all patients, friends & relatives at Harefield Hospital (Kelly's Home)
Martin Wood
Good luck

2008-08-24 07:06:51 - Huddersfield

Great to share the breakfast table with you yesterday at Harefield Hospital.

Thanks for the bracelets. We are passing them on to friends. Where can we get some more from?

Natasha's check up went very well and the doctors are very pleased with her progress.

We handed over a cheque for £800 to Martin Carby. This was from a fund raising event to celebrate Natasha's 7th anniversary of her heart/lung transplant from 26th June 2001. It's great to see her looking so well and without the Hospital's skill and dedicated staff, she wouldn't be here today. Not forgetting too, the donor family, who at a very sad time, made a very brave decision. We don't know who they are, or where they come from. But, from the bottom of our hearts we say THANK YOU for that wonderful gift of LIFE. We hope and pray that as we have celebrated 7 great years, they will indeed find some comfort knowing that from their loss, NEW LIFE is being enjoyed.

Keep up the good work John. You are an inspiration and maybe next year I will be able to join you in some of your fund raising running events.

God Bless You

Graham, Ann & Natasha Rogers

2008-08-01 06:58:02 - Northampton

Hi John,

It is Michelle Hampton here, Sarah Hampton’s sister; we met at the Race Night in Staines.
Can I just say that you have an amazing website here, it is full of Inspiration and information for people who are pre and post op.
I know that when Sarah underwent her Heart Transplant 10 years ago at the age of 9, there was not as much information around as there is today. I feel it defiantly helps to read up and prepare yourself and your family for what the future has in store. The mix of Information and real life stories and statistics is what makes this website so great!

Keep up all the brilliant fundraising you do, you should be very proud of what you have achieved so far, good luck for future races and i am sure i will speak to you soon!

Take care, best wishes,
Michelle Hampton xx

2008-07-05 02:46:00 - Greater London

hi my mum who is only 36 has to have a heart transplant iam scared and i dont no anything that is going on also is she ever going to get a heart transplant as she reguse negative could you please help to try and give me some information as i would love to understand and try and help my mum thank you

2008-06-24 10:19:12 - essex

I have part time job for people that have just recieve transplant and those that need money to do the transplant, this is my area of contribution. The job is easier and they get little money to take care of themselve.Any intrested person should contact me through my email. wendy_1978_wendy@hotmail.com

2008-06-16 01:45:35 - uk

being put on a transplant list for a heart i'm 58 years old and have had four heart attacts. i"ve had angeoplas,2 steints,quadruple by-pass and an icd. now its down to the transplant with out it they say i can live maybe two years. thank you for your time and good luck in your coming years

2008-06-15 08:11:13 - chicopee,ma

Hi

Do you know Steve Deakin? who you are running with? If it is the one I know from The World Games then you are in for a surprise. He is truly inspirational, comes from Liverpool area I think and runs with no feet!!

Speak soon

Jillx

2008-05-24 07:23:52 -

Excellent site and thoughtful work. My girlfriend discovered your site 4 years ago while I was "waiting" in the hospital. I was fortunate to receive a transplant a month later and we were married later that year. I was a marathon runner before cardiomyopathy and have moved to the bike post-op. I am planning an Organ Donor Awareness/ Fund Raiser bike ride from Boston to University Hospital, Cleveland, Ohio later this summer. 700 miles or so, with stops at Centers and Hospitals along the route. I may continue on to Pittsburg, Pa, time permitting. I want to thank you for your inspirational vision and work ethic in regards to Organ Donor Awareness. My best to you.
Richard

2008-05-09 23:11:16 - Boston Ma USA

Well done you put me to shame - I had a heart transplant in 1987 and I am sorry to say I haven't really raised any awareness...
I have been a regular visitor to your website and secretly thinking "he will never keep it up!"
Wrong again, as here you are 7years on and still doing your bit as well as mine and several others who haven't - well that is for me until now.
21years post heart transplant I am going to do my bit and raise some awareness, but that doesn't mean you can stop now.
Transplantation and all the people on the waiting list need you.
Keep it up
Kevin H

2008-05-01 16:16:22 - UK

Great site and great information. Thanks for your time and effort. Transplanted due to Cardiomyopthy at the mere age of 6 in 1986, 22 years later im doing ok, but am now in heart failure again. Luckily I am still able to keep it under control with me medication and the continuing care and dedication of Papworth Hospital, Cambridge. Life is good, I graduated with my Masters Degree last year and I begin my FE Teacher training tomorrow so I can become a University Lecturer.

2008-04-29 17:07:49 - Derby, UK

Congratulations on both your birthday and running the London marathon John. See you in France

Jill

2008-04-24 10:39:11 -

Your website is great, my Grandad has had a heart transplant for over 18 years and still hepls me to play football and golf....

George Hart age 10

2008-04-24 08:42:41 - Wiltshire

I had a heart transplant 6yrs ago last month. if ne one wants to chat to me about it feel free im always willing to answer any questions u may have.

p.s i think of my donor every day but i still cant write them a letter to say thanx but i suppose in time i may have the strengh to

2008-04-16 13:17:32 -

hello i found you website very intresting as my partener age 21 had hes heart transplant last nite n is currently in intensive care we still dnt no wat caused hes heart to fail but im sure we will soon enough. i cannot thnk his donor family enough as he has saved my parteners life x

2008-04-11 15:31:12 - england

hi i have just found your website what a great site .my son had a heart transplant 3 years ago ,he was 20 years old .he is now getting married in july .life is very good for him and his family.i cannot thank his donor family enough we will always be in there debt

2008-03-31 12:34:08 - chiswick

Hi John - Just to say the mag is out - it is in Yours on page 3 - with Linda Luski on the front cover

2008-03-25 09:15:33 -

I was just letting you know that my boyfriend, Jeremy recieved his new heart on March 8 2008. He is doing well at home now. Thanks for all the information you have provided for us.

2008-03-20 12:22:07 -

John, we are all very proud of you. You are truly a asset to the Organ Transplant community regarding your upcoming participation in the 35 mile Cape Town Marathon March 22nd. You are truly a inspiration to others worldwide.

2008-03-11 09:38:03 - Houston Texas USA