I just wanted to say thank you. A patient of mine told me of this web site that had given him and his wife great help and support at this difficult time. I to have found it useful, and now feel I have a better understanding of the questions, fears, worrys and hope they have. Again many thanks.

2007-11-26 13:54:28 -

Hi All - Just to say that I feel the most fortunate person alive today - 17 years since I received my new heart. Still swimming a mile each time I go (3 times a week usually) It can't get better than that - thanks to my donor

2007-11-21 14:30:43 -

Hello John
I was waiting for my husband and family to go to sleep, then I was going to go to sleep myself (for a long long time). While waiting I went on the net for the last time and came across your site, Thank You - As I will now wake up tomorrow and face the world and hope I can follow your lead
Clair xxx

2007-10-31 03:58:10 - Kent UK

Hi John,

I would like to thank you for giving us the chance to read your story and website, its so good to hear other peoples experiences. My daughter, Molly, had a heart transplant when she was just 5 months old. She is now 2 years 6 months old and is doing very well. I have always found it very difficult that she can not explain to me how she is feeling so its so good to hear other peoples stories. Best wishes & good health to you and all the other transplant patients out there,

Thank you

Inez

2007-09-29 13:36:01 - Ireland

Hi, my mom just had the transplant less than 15 hours ago. Just looking on the web for further information. Thanks for the website and the information.

2007-09-24 12:31:48 - Piscataway NJ USA

Hello John,
Your site is very concise and informative.Keep up the good work.I am only six years out so hopefully I have a ways to go.I hope I can adopt your positive attitude.

michael,Wood-Ridge,NJ-USA
http://heart-transplant-emotions.blogspot.com

2007-09-11 00:47:43 - USA

Hi there,

You have a great informative site, I am a two time heart transplant recipient and am doing great.
visit my blog at http://transplanttalkblog.blogspot.com/
keep up the great work and if you are ever in Northern California, look me up!
troy

2007-08-13 09:46:19 - Redding, CA - USA

Thanks John - Nice to know there are people around who always do as they promise

2007-08-10 18:01:34 -

Hi,

Stumbled across your site as my friend had a heart transplant 9 days ago, so far so good but there were question I wanted to ask him but were too afriad of upsetting him, thanks for your website as they answered a few of the questions.

Stay healthy to all you HT Gang xxx

2007-08-07 12:41:55 -

i love this page. keep it up.

2007-08-06 16:39:05 - lagos nwanne

i had a heart transplant and I would like to hear from others who have had one

2007-07-21 18:59:46 - austin,texas

Hi John.
Its Kenny from the tyre shop in Ashford. Long time no speak. How are you?
Just seen your story about The Great Wall Marathon in the Feltham Leader, congratulations. Website is looking great. We have just moved from Feltham to Hanworth, and its chaos here. Boxes everywhere and I am restricted to the Laptop for the moment, till I get Main PC sorted out. Kelly is keeping me busy with jobs around the place. The website I have listed is the School one I run for my kids school. Must go now, kids playing up. Good luck in South Africa and hope to catch up some time.

Kenny

2007-07-14 03:07:46 - Hanworth

Your site is helpful to me as there are no heart transplant patients in India that I know of. My HT was done 5.6 years ago in New York and I'm looking for transferring my case to England as it is closer to my country. My original Transplant team has left my NYC hospital, so I feel ready for the change now. Where should I start my search??

2007-07-04 07:19:00 - Mumbai, India

i was just wondering how your family coped with all of this. My boyfriend is pending acceptance to be listed on the list. he has many doubts about having the surgery. how can i be a better help to him while he makes his decision? thanks for the great web site!

2007-06-30 05:49:26 - Mahnomen, MN USA

John,

I Stumbled across your website a few hours ago and have read every item on every page. I am a pre-op transplant patient and about to be listed.

The stories and comments on your website are like a torch to me in what seems to be a never ending dark space.

Thank you and everyone else who has taken part on your website as it helping me to see the green trees on the other side rather focusing only on the lions and the crocodiles. Thank you

2007-05-31 22:50:50 - Hertfordshire

I have very poor LV ejection fraction and am subject to V-Tac and A-Fib. I have suffered from 7 BrainTumor operations and am still going although becoming increasingly tired very quickly. After the MI in 1976, I ran marathons for several years. The first tumor was resected in Toronto, ON in 1989. The other six from 1999 through 2005 in London, Ontario. Would I qualify to be aided with an assist device for the left ventricle?

2007-05-31 22:37:23 - Sault Ste. Marie, ON Canada

A Very Informative Website Well Done And Good Luck

p.s. You mentioned on your website about wanting to know about the top hardest marathons.

The 3rd I Believe is a multiday marathon across the sahara desert

2007-05-29 10:51:57 - Greenford , Uk

John you are "One In A Million" what an inspiration...
Hope you continue your good health for many years to come
J R

2007-05-12 18:20:01 - Kent UK

Hi John,
Your web site has been inspirational and informative for me from the time I was told I would need a heart transplant, to the present, 2 years post-transplant. I still take pleasure in visiting you web site and it continues to inspire. Thank you.

Can I also take this opportunity to thank you for the advice you gave my sister when I had just had my transplant and I suffered memory loss, delusion and halucinations! This was a temporary side effect of the transplant procedure and medication that we had not been told about. Your advice helped me and my family.

Take care,
Pete
Heart Transplant 2005 Papworth Hospital, Cambridge, UK

ps It is good to be here, isn't it?!

2007-05-04 13:31:32 - Winchester, UK

..:: Love your website. Keep it up!! ::..

2007-04-21 12:04:49 -

John, what a great web site and personal story of inspiration (along with your collection of other inspirational stories). Thanks for that sharing.

I received my heart transplant back in 1994, have enjoyed an amazing fulfilled life ever since, and share my book of support for heart patients and their families, A GIFT FROM THE HEART, available at http://www.rjwitte.com/changeofheart/GiftFromTheHeart/ or anyone can have it free in a CD format by writing to me at gleasonjim@aol.com

Keep up the great work you are doing and as they say in the Star Trek series, "live long and prosper"

- Jim Gleason
heart recipient 10/19/1994 at the
Hospital of the University of Pennsylvania in Philadelphia PA, USA

2007-04-07 21:50:56 - New Jersey USA

Hi John, We have a mutual friend, Bob Pitcock from TX, USA. He
mentioned that you are about to venture on a walk on the Great Wall. I
was there during 2000 and walk (it felt like climbing) a portion near
Beijing. I am a heart recipient 1996 in NY Presbyterian Hospital in New
York City.

I wish you a long and healthy future, and an enjoyable walk along the
wall. The wall is undulating, and can be quite steep in parts.

As in almost every part of the Orient, you will have to take special
precautions to stay healthy. For example, I made a trip to Norway and
enjoyed the mail boat from the northern-most area near Finland to
Bergen. My wife and I came back with terrible colds. My wife took
antibiotics and was over it in a few days. I didn't and ended in the
hospital for 5 days due to a touch of pneumonia.

Two major notes. Eat only cooked food, peeled fruit and drink bottled
water. Wear a mask where the area is questionable. During your flight,
rural areas, etc.. . The common fuel is coke and the air can be
terrible (smog). It does work because on this trip, My wife and I were
the only ones that didn't get sick. One last point, a common error is
to drink regular water during your flight. From Europe, the water can
be fine but where do you think they get the water on the return flight.
Drink bottled water...

Good luck Don Wong New York

--
To the world you may be one person,
but to one person, you may be the world...

Anonymous

DONATE LIFE

2007-04-07 14:24:07 - New York

my sister madeline g prierra commonly known as awa gomez, is in need of urgent overseas treatment to solve her heart complications.
according to medical report on 15 march 2007 from the medical board of the royal medical teaching hospital, madeline prierra was diagnosed of mitral valve disease with possible association of aortic insufficiency.
the report states further '' she complains of dyspnea, abdominal distension, and fatigue. during physical examination, the following findings are made.
mild jaundice of the conjuctiva. diastolic heart murmur 1V-V\V1 at the apex.
the x-ray shows cardiomegaly globally but more marked in the right cavities.
the board therefore recommends overseas treatment as presently she needs a more specialized treatment which is not available in the Gambia at the moment.
madeline's elder sister who happens to be me eli gomez is pleading with the public, ngo's and other institutions to come to our aid, as we the family could not afford overseas treatment for her.
i am also pleading with our president alh yahya jammeh to help us to take her for an overseas treatment on her heart, said i eli.
madeline was born in kungkunjang mariama 25 years ago.
she scored excellent marks during her school days at fatima senior secondary school in bwiam. her condition change slowly with time and she has been going through a painful moments.
you can reach my family through this emaill address or basiru jobarteh through point newspaper.
pointnewspaper200@yahoo.com

yours faithfull
Eli Gomez.

2007-04-02 18:16:15 - the Gambia

Dear John, April 1st 2007

My name is Jason Blatter. I had a Heart Transplant at Children's Hospital in Pittsburgh on 6/5/84, I was just 14yrs old at that time. That's was over 20yrs ago. There was not nearly as many Hearts Transplant Centers as there are now. I was living in New York at that time, Me and my family had to pick up and move to Pittsburgh, PA. I have to say during the 20 plus years Since my Transplant. I did really, really, Well. During start of 2005 I started getting a little short of breath and felt a little week. During my last few caths, The Doctors started to see, the starting stages of Coronary artery disease. I started to get really weak and was placed in the hospital at status 1A. While waiting, the doctors had advised me and my family that it would be best to have a Bi-Vad implanted into my chest till a donor heart become available.

On March 27th I received my new heart. Today is 4/1/07 and I just celebrated my 1st anniversary. This past year was really tough on me and my family. I ended up Spending a little over 7 months at Columbia Presbyterian Hospital in New York City.

I'm now doing well again. I'm your typical 37yr old guy. I'm currently not working. I still go to the Doctor once or twice a month. I live only 7 minutes from the hospital, with no traffic. That makes it very simple to get to there for me, when I'm in a rush.

Thanks for listing to my transplant story.

Jason Blatter - Heart Transplant 6/5/84 & 3/27/06

MRKINGTOAST@AOL.COM

2007-04-01 19:04:35 - Fort Lee, New Jersey

Hi John,
I recently heard you talk at a BHF Supporters Seminar in Crawley. You truly are an inspiration to us all!

Sadly, I was unable to speak with you after the seminar, as I had to leave early for a BHF event my supporters group were holding. I hope to meet with you one day though.

I'm in awe of your efforts to date and know that I will continue to be in awe as it would seem your not ready to hang up the running shoes OR the bike just yet!

Had a look round your site and its very informative. I shall also visit an Outback outlet soonest!

Till then, Kay. Frimley

2007-03-12 18:50:12 -

You're amazing-I haven't had a heart transplant and could no way do even half of what you have done. What an inspiration, I will jion the organ donor register, then if I do become a donor maybe my heart will let someone else run a marathon as I never will...
Keep on running - Very best wishes for the future- Nick

2007-03-10 00:25:21 - London

John
Site is looking fantastic - lets hope many more people find their way to the advice and inspiration you give us all.

Glad we can be of assistance
Best regards - see you soon

2007-02-27 21:31:50 - In front of a steak !

John thank you for sharing your story. My fiancee is 28 and had a heart transplant it will be 2 years on july 10th. He is in the hospital for 3b rejection. Which is very high. Does any know or has anyone gone through rejection so long out of surgery?

2007-02-23 07:12:47 - Philadelphia

Dear John,

Thanks for a great page. A lot of interesting information.

My father had a transplant in 2004. The first year of recovering was briliant. He recovered faster than expected and everything seemed to be back to normal.

But one year after the doctors found out that a meningioma he had some years before, reapeared and was groing very fast. He had to do radiotherapy and since then, he has been weaker and weaker. Also he needs to take medicine to avoid epilepsy atacks. This medicine has always conflicted with the heart medication.

This summer he had an infection that nobody could detect. It was a liver infection that ended causing a Neuropathy.

He was finally treated and was slowly recovering. But then another infection, Tuberculosis. This one they found it on a very early stage so no major issues.

But the treatment to all the infections and the anti-epilepsu medications affect the anti-rejection medication and his health.

Now he is very weak and eating small dosis. He is totally dependent from my mother and my sisters. And we don't know what else to do.

It is a very unique case, since it mixes a transplant and a tumour that was not related. But I am looking for opinions/ideas/suggestions...

My father lives in Portugal, in a town called Coimbra known for its university and excelent hospital. His transplant was done by Dr. Manuel Antunes, probably the best cardiotoracic surgeon in the country.

Please, if you know any way of helping us, it would be really great.

Thanks a lot and kind regards,

Vitor

2007-02-12 18:05:54 - UK

What a wonderful informative site please keep it up

2007-02-06 17:07:17 - London

Hi John

I wanted to thank you for your wonderful and inspirational website.

During the Summer of last year, my 17 year old cousin's congenital cardiomyopathy caused deterioration of her heart to an extent where she needed a transplant. She received the "call" on 4th December and went into surgery in the early hours of 5th. Very sadly, she did not make it through the operation, suffering what is termed "primary allograft failure".

Firstly, I want to emphasise that notwithstanding our tragic loss, my family and I remain very grateful that Claire had the opportunity to have a new life and that, thanks to the generosity of a donor, she did not become a "transplant list statistic".

Secondly, I want to give my very best wishes to all those who are currently on the transplant list. The last thing I want to do is create fear - what happened to Claire is something that happens in a minority of operations, and as you know from John's site, very many people return to normal life. I would also like to assure you all that you will be in the very best hands when you do go into the operating theatre. Claire was looked after by Professor Bonser and his team at University Hospital in Birmingham. When the urgency of her case became apparent, during her assessment for transplant, there was no delay in getting her onto the list and getting her the priority status that she needed (for the four days she was on the list - she was in No. 1 position). Moreover, when things started to go wrong, every effort was made in the fight to keep her with us. It comforts me greatly to know that such competent and wonderful people gave their all for her.

Finally, thank you again John. Whilst the outcome for Claire was tragic, in what turned out to be the last weeks of her life, the information that I gained from your website and conveyed to her gave her the courage and stamina to keep up her fight for life. In what were very difficult days for her, telling her stories about that amazing guy who had his transplant and has since run half the marathons on the planet (!!!) certainly brought a smile to her face and gave her a lot of hope. When I sat on Claire's bed whilst the operating theatre was being prepared for her, she was full of bravery and optimism for her future. Thank you so much for helping me to help her.

Simon.

2007-02-03 04:58:43 - Bristol, UK

I am a Norwegian who had a heart transplant in 2004. I visited your
site today (and very nice it was too!) and wanted to leave a greeting
in your guestbook. However, my Firefox 2.0.0.1 made so much noise
about some certificate or other that was past its sell-by-date that I
wrote an E-mail instead. Keep it up!

Regards
Rune Eide



http://www.uib.no/people/oodre/ http://www.tx-cor-norge.blogspot.com/
http://visualnorway.blogspot.com/

2007-01-29 17:56:19 - Norway

December 3, 2006

I would like to tell our story...

I am 43 and my husband is 42. Never - never in my life did I think I would be pleading for help and telling our story in this fashion, but here I am...

I have a good job. My husband had a good job. We have nice things. Then all of a sudden - he had a heart attack. This heart attack put him on a list to receive a 'heart transplant'! After 4 months of on a heart machine, a heart became available. He is home about 6 months now, doing well, but and we just cannot keep it up..., he was off 7 months before SS Disability kicked in, and he cannot receive any 'back-pay'. Try to imagine how to keep the household going without receiving 7 months of pay. We hoped for this backpay to catch us up on our falling behind bills. In addition, the disability that is received now is basically a quarter of what he would bring in working his full-time job. Going from a 2-income family to a 1-income ... now, I am scared! I am working up to 60 hours a week and then some. I probably should look for a part-time job yet too. I am burnt out, and depressed, and the whole thing about it is - I made the decision to keep him alive, and I would make again, but now I'm barely home to be with him working all of the time. We are getting deeper and deeper. His work dropped his insurance a month after his heart attack, and now we are paying Cobra for over a year now – a extra bill we hoped to not have, but we need this, so we will struggle to pay it.

He was told he cannot work for probably a year after transplant - however, he is working part-time just to bring some money in. He cannot work alot since he has to stay below a certain amount because of SS Disability. His one paycheck was $24.00. Believe that? Look at him - a 'heart transplant' survivor with the grace of God's help, and he started working part time 3 weeks ago! The stress is just killing us. He says that I should have just left him die....

What is possibly out there for us? What do other people do in our situation? In the past 8 months to a year the credit scores are getting worse. My husband takes 43 pills a day, and he has endless doctor appointments, we need to pay for these things. I am also really scared to find out about Tax time 2006. What will happen then since he is not working? Will we have to “pay in” -- we just cannot take another bill. We are already 3 months behind and just informed of a car on the repossession list.

I'm at a loss anymore. Where could there possibly be help? I have written a letter to Social Security, Veterans Administration, Senator, and the President of The United States.

Our country needs help in the Pennsylvania Health Care system and also Social Security system needs looked into! We worked so hard for everything we have and now within less than a year we will lose it. My credit score went from 770 to 400 within less than a year also. We are selling things that we onced enjoyed to pay bills. We are running out of things to sell...

We need help. I have to drive to work, but the car might be repossesed. I talked to creditors basically 7 days a week peading with them. We are both hard workers, and do not take advantage of the system. I know there are others out there too in our situation. When it comes to paying the car or getting medication - well, of course medication is first. When it comes to the TV or electric bill, of course it is the electric bill. Never before did I watch the fuel tank in my car. It weather is cold here and running on fumes is scarey, and now I'm watching the gage of the oil tank for heating our home and hot water. I went for assistance, but they say we are not eligible.

The link below will direct you to Lancaster General Hospital's website in Lancaster, Pennsylvania.Please read our story: http://www.lancastergeneral.org/content/GSv5n4_01.asp

Please respond and give us some sort of guidance on what can help us before we end up loosing all that we worked so hard for. We are hard workers. Our credit rate went down tremendously only in the time he has been off. I’m dead and very depressed anymore from working so hard just keep our heads "under water"… Please Help!

Tim Vernon Kashner and Lisa Ann Kashner
305 North Academy Drive
Ephrata, PA 17522
(717)738-9120
kashner@ptd.net
Trust Fund: A trust fund for Tim has been created to cover the couple’s expenses:
Sovereign Bank
Lorne G. Mowrer
FBO Timothy V. Kashner
1963 Fruitville Pike
Lancaster, PA 176037603

2007-01-25 03:49:24 - Ephrata, PA

Hi, John. I started reading your website shortly after I was transplanted on 6-30-05. Your site gives me great encouragement and inspiration. I hope to compete with you someday at one of the Transplant games. From what I have seen on the internet, they are great events. May good luck continue and may the peace of our Lord be with you. Thanks again for all that you do.

2007-01-17 12:15:17 - College Station, Texas

Thank you for a wonderful site, my partner is just stepping on the road to transplantation and it is very comforting to find someone who can help us along the way. Thank you so much and lets hope 2007 will be a good year for us all.

2007-01-07 19:45:57 - Coventry UK

Hi, Thanks for a great site, my partner discovered that he had dilated cardiomyopathy 3 yrs ago, and at 37 and previously very fit, found this very hard to deal with, he is now being referred for transplant and is very scared so your site has really helped us - we always knew that eventually this day would come but thought it was best to keep his own heart for as long as he could, until his last appointment with the consultant when he was told that his life expectancy would be longer if he had a transplant. Here's hoping for a great 2007 for all of us. Thanks again.

2007-01-06 23:26:01 - coventry UK

Hi John, I had a heart transplant in July 2006, doing very well now. We have met once at Harefield. Looking foward to playing golf again, how do I get details about the charity golf day in May, would really like to participate. I am hoping to go to Edingburgh all being well, might see you there. Good luck for 2007.

Kind regards

Ray

2007-01-05 14:31:04 - chertsey surrey

John, may you and all of your wonderful network of heart friends throughout the world, have a very "Happy New Year" and may all of your dreams and goals be fulfilled in the coming year 2007. GOD BLESS

Ol' Texas Bob

2006-12-25 19:56:53 - Texas USA

What an amazing site you've constructed and what effort you must've put in. I'll write again, but for now let me inform you that I am probably the only Heart Transplant patient living in India. My surgery was performed in New York exactly 5 years ago! I'm 50 and female.

2006-12-11 18:47:26 - Bombay, India

Inspiring website - my friend's husband just had a heart transplant 4 days ago. Everything went smooth - like right out of a textbook. It truly is a miracle that this can be done. He has a long road ahead, but we are all taking it one day at a time. Thanks for sharing your story - lots of emotions were triggered - happy , sad, hopeful , etc... Bless you and yours...Christy

2006-12-09 17:05:05 - Pittsburgh, PA

Hi John, just having a nosy round your website-its very interesting to read another transplant patients' experience! I was 16 when i had my heart transplant at the Freeman Hospital in Newcastle. i am 21 now and enjoying life to the full. Doesnt seem like anything has changed, i have the same social life as my friends, i work for a big oil & gas organisation and am currently decorating my new flat. life couldnt be better, how can i put pics up on ur site? i am told constantly that if i didnt tell anyone what iv had done they wouldnt have known,

kind regards

Emily

2006-12-05 12:27:40 - Aberdeen

Our daughter had a heart transplant back in January 2006. She was 13 weeks old. We had to travel from Northern Ireland to GOSH

We recently celebrated her first birthday and decided to use that occasion to go public with her story.

http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/6035347.stm

She first took seriously illl on the 22 November 2005. So this time last year we were going through hell. Thankfully we got the gift of life.

It is a very surreal feeling to look back at this time last year and as we approach the first anniversary of her transplant. However all is going great at the minute.

Great Site!!!

2006-11-28 00:31:20 - Warrenpoint, Northern Ireland

hi john
this a very good web site i have learnt more by looking at your site
chat soon charlie

2006-11-23 12:54:49 - shepperton

John, you have made a good site with plenty of info, all the best Vic

2006-11-12 02:47:03 - Birmingham UK

Hi John - Chatted with you today at the lord Mayor Show, many thanks for the pin and postcard - as promissed I have just gone on line and joined the organ donor register - Very best of luck to you in the future - Ben

2006-11-11 22:32:28 - Clapham

Many thanks for such a great website, you are an inspiration to all of us..Please keep up the good work

2006-11-07 20:10:00 - London

Been on the waiting list for 6 months, life isn't so great at the moment.
Your website gives me hope and keeps me going.
God Bless You Tony

2006-11-02 18:41:55 - Kent UK

Dear John
It was really good reading through this website, congats! I too have had a transplant 13 years ago this year! I have competed in bodybuilding completions run marathons and had a beautiful bouncing baby boy who is now 2 years old! and there is still life in in me yet!!! i am hoping to compete next year in bodybuilding again all my love vickie xx

2006-10-29 12:07:54 - UK

John, I would like to take the time, if you don't mind, to report to your site visitors, that one of our beloved heart pals, Andrew Wilson(Journeyman), whom you have posted his heart story on your site several years ago, passed away July 7th 2005 there in London. The 1st anniversary of his passing will be this week July 7th 2006. If any of your site visitors would like, they could post a comment on his own website guestbook http://www.transplantsunited.com/ to offer their thoughts and prayers, to help and ease his parents grief & pain of loosing their beloved son, Andrew. I live all the way over here in Texas USA and I discovered Andrew and his miraculous

2006-10-29 11:59:49 - Texas

Read your diary very interesting to know what happens and very touching. my husband has just had an (ICD) implantable cardioverter defibrillator fitted and is going on the active transplant list tomorrow (5TH OCTOBER) at the freeman's hospital. its comforting to read other peoples stories and how they get through as we have had great support by are heart nurse at the beginning at south Tyneside Joanne couldn't do enough for us and helped myself as well as my husband .Freeman's hospital excellent staff and support and here's hoping there is a new heart out there for my husband, best wishes john keep writing your diary from dawn x

2006-10-29 11:57:18 - United Kingdom