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Dr. Christiaan N. Barnard
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Artificial Heart
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obert Tools

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Trish Byng
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Reg Chisholm
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Gay Eberhart
Jill Edwards
Maria Encalada
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John Fisher
Mick Foster
Steve Henderson
Buddy Hickey
Tanya Jones
John McCafferty
Derrick Morris
Bob Pitcock
Charlotte Jane Tate
Ann Woodbridge

Heart and Lung
Diana Chandler
John Rueben
Peta Capello

Domino Transplants
Peter Allinson
Shonqueela Mallory
Andrew Wilson

Jonathon Holmes

Carers Story
Helen Nutman
Sandra Taylor

Waiting For Transplant
Diana Chandler

John Fisher
Heart Transplant 30th July 2000

Post Operation Diary

Sunday 30th July 2000
3am arrived at Harefield hospital for transplant, I have to go to Medical Care Ward to be prepared, firstly a shave from neck down to my knees, then a shower in some yellow liquid, then blood is taken, sign consent forms, it looks as if all is going  ahead. A porter arrives and we're off to theatre, my wife Jan is following behind, we stop at the doors of the theatre and now it's time to say "see you later" (not quite as easy as that). I am now in a  room, with three staff members, I have had no pre-med, I got a local anesthetic in each wrist, then a venflow into a vain in each arm. All the time I was chatting to the staff feeling quite at ease. I asked to see the theatre so they opened the doors and I had a quick look around. The  next thing I knew I was in I.C.U.

My operation started at 5.30am, Professor Yacoub was my Surgeon, 11.30am I was taken to I.C.U. still asleep.

Monday 31st July 2000
I woke up sometime today still in I.C.U. but very out of touch with what is going on around me. Connected to various equipment and I.V lines.

Tuesday 1st August 2000
Transferred to ward about midday. I am now quite awake, I have  I.V lines. in each arm and another one coming out of my neck which is not connected to anything, a catheter to collect urine, three stomach drains, three small wires coming out of my chest, I am connected to a heart monitoring machine and I am using a oxygen mask.

Wednesday 2nd August 2000
Trouble sleeping, just could not get comfortable, I find the nursing staff to be fantastic massaging my back etc. Still much the same as yesterday with 2 hourly observation checks. Temperature, blood pressure, pulse and oxygen level. Physiotherapist helps me stand up and walk slowly on the spot.

Thursday 3rd August 2000
Sleeping still a problem, but today I feel like I am on the mend. Stomach drains are removed, heart monitor machine taken away, catheter removed, the I.V's in my arms are both removed, the line in my neck is to administer drugs and take blood samples. Physiotherapist gets me out of bed again more walking on the spot small amount of arm exercise.

Friday 4th August 2000
Queen mum's 100th Birthday and I know just how she must feel, today I am allowed to walk unaided to the toilets and back (50 meters), the Queen mum would win if it was a race. I am in no real pain just aches but glad to be alive and slowly making progress.

Saturday 5th August 2000
Still feel like the Queens mum, taking various pills all the time. I even take a pill to settle my stomach because I am taking so many pills. Now sitting in a chair in my room most of the day, with trips to the toilet and various physiotherapy exercises to do,  very light just to loosen up the muscles a bit.

Sunday 6th August 2000
I think I may win now if I had that race with the Queen mum, a few tears have now been shed for my donor who I cannot stop thinking about. Still sitting in chair most of the day and walking to the toilet. 2 hourly observations.

Monday 7th August 2000
Had to be woken up for breakfast, great nights sleep. I don't seem to have any aches this morning, in fact I feel fantastic. Walking to toilet at normal pace is no problem, whatever happened during the night? I find the day to be almost unbelievable, I can't stop smiling. Physiotherapist takes me to a staircase and we go up 21 steps and down again, she then said I have passed the stairs test, no certificate but I am free to leave the ward and use stairs. I also phoned a internet domain company to buy this website, followed by a call to my local paper to get them to sponsor it.

Tuesday 8th August 2000
Once again had to be woken up, have breakfast and realized yesterday is not a one off. I feel FANTASTIC still on 2 hourly observations, having to keep my own fluid chart in and out. Also filling in a blue drugs chart book and administering my own pills. Yet to learn what each pill does. Still doing exercises in my room and a lot of walking, this website is now taking up all my free time going all over the hospital to get information on transplants etc.

Aciclovir 200mg, 4 x day. Septrim 480mg. Amlodipine 5mg. Itraconazole 100mg 2 x day. Pravastatin 20mg. Nystatin 1mg 4 x day. Frusimide 40mg. Prenislone 40mg. Mycophenolate Mofetil 1g 2 x day, Neoral (cyclosporin) 300mg 2 x day.

"Don't let this list worry you it soon gets reduced"

Wednesday 9th August 2000
Sitting up in bed waiting for breakfast feeling fresh and full of go, it's like a dream come true. Physiotherapist takes me to the gym and I use one of the bikes 10mins no resistance, still feeling on top of the world with the biggest smile you have ever seen.

Thursday 10th August 2000
Much the same as yesterday, a nurse removed the stitch from where the drains were. Once again to the gym for a 10min cycle exercise and various light leg and arm exercises too. 4 hourly observations now, I am doing very well (above average for a transplant patient).

Friday 11th August 2000
I think I am the luckiest and happiest man in the world at this time, given the choice of winning the lottery or my new heart, the new heart would win every time. Going from strength to strength. Now have a cycle in my room to use, just told not to overdo things. Also being reminded that there is a long way to go yet and things can still go wrong, but I have decided to enjoy the good days to their full extent. And when I have a bad one, spend that time feeling sorry for myself, until another good day.

Saturday 12th August 2000
Still on top of the world, my heart is strong now I have to rebuild my body and mind. Before transplant you are told all the time to look after yourself, stay as fit as possible, but time on the waiting list slowly wears you down and you begin to put on weight. At least I did, now I am paying the price. I came in weighting 86.4kg, 3 days after transplant 90.6kg, I was full of fluid, today I weigh 83.6kg.

Sunday 13th August 2000
Just keep getting stronger, today my T-Shirt and sponsor forms have been returned, for the Harefield jog/walk on 17th September 2000. I am still having to keep a record of fluids, but apart from that I feel exceptionally well. More good news Jonathon Holmes, heart transplant Sunday 7th August 2000 is doing well, and since my transplant I know of seven other heart transplants that have taken place and all are on the road to recovery. I have also noticed today I do have slightly shaky hands due to one of the drugs, apparently we all get it and it will soon stop. My weight today is 83.3kg. 

Monday 14th August 2000
Busy day today, still getting stronger. First an E.C.G. then a chest X-ray, echo-cardiograph and then heart biopsy. Observations three times a day (if they can find me), my local papers came in today to interview me as they intend to run a donor appeal week Still working on this web site everyday so I do hope you find it helpful and interesting. Weight today 82.4kg.

Tuesday 15th August 2000
You guessed it, still on top of the world. I am only having five hours sleep a night, then I feel totally refreshed and ready for the day. Still can't believe how good I feel, not to much happening today, THEN my consultant arrives with three other doctors on his rounds, it is the first time I have seen him since my operation he has had a cold (even doctors get ill) so he stayed away. He gave me the once over, said you are far to well to be in hospital, GO HOME. Arrangements were made for me to come back on Thursday and that was it, off home.

Wednesday 16th August 2000
Great to wake up in my own bed, still only sleeping for five hours. As coming out of hospital was sure a surprise, my wife did not have time to get some of the things I need, a exercise bike, various weights, separate chopping boards for food and a few other items. We spent most of the day sorting things out, also the local paper runs my story today with the sponsorship forms and this web site address so I have to try and finish some more of it then post it to the web.

Thursday 17th August 2000
Appointment at Harefield for blood test, echo and E.C.G. I then had lunch at Harefield and back home. Exercising on bike, out for short walks and using weights for small amount of arm exercise. Having to take various pills four times a day, but none during the night. 

As most days are now going to be the same I will only put an entry when something new happens 

Monday 21st August 2000
Back to Harefield for a heart biopsy, blood test and echo. Then it happened, I met Professor Yacoub, I shook his hand, thanked him, told him he had only operated on me three weeks ago and how pleased I was with the results. He then also spoke to Jan, he is not only a great surgeon but is also a very nice man. I also met Jonathon Holmes walking around, he is doing fine. I told him about the website and he said he would visit it later.

Wednesday 23rd August 2000
Still feeling great, nothing to eat since last night as I have to be at Harefield by 8.00am for an Angiogram. Angiogram took place about 9.30am, then you have to lay on a bed for about six hours, to allow the vain to heal/seal. The day seemed to go really slowly as I had lots to do and could not do any of it. But at least now I have plenty of tomorrows. Just after my Angiogram, whilst laying on a trolley waiting to be taken back to the ward, I met the Professor again, he stopped and we had a short chat while he looked at my notes. No doubt to remind himself of who I was, I have heard that he is thinking of retiring next year, that would be a great loss to the hospital and other possible transplant patients. After my evening meal at about 6.30pm I leave the hospital to go home, still having to be driven every where as you are not allowed to drive until 8/12 weeks after transplant, and you have to get the doctors permission first. My weight is still coming down 80.6kg today.

Wednesday 30th August 2000
8.30am appointment at Harefield for blood test, echo and heart biopsy. After the echo I was told that some of the readings were lower than last week, which may be a sign of rejection so I would have to stay at Harefield until the results of my biopsy, which should be later today, if rejection shows I will have to stay in (that was at 10.30am). 6.00pm I was given the all clear and allowed home, I am however going back to Harefield tomorrow, why? You will have to read tomorrows diary up date.

Thursday 31st August 2000
Once again I am off to Harefield, this time to meet a film crew from Carlton TV. We are going to make a short program called "Your Shout" about the government wanting to close Harefield and move the staff etc to Paddington. It was not as easy as I thought, I only got the script yesterday and then ended up at Harefield all day with the script on my desk at home. But I did my best on the day and hope it all turns out OK. As soon as I know when it will be on television I will let you know.

Thursday 7th September 2000
My fifth heart biopsy since transplant, have to be at Harefield for 8.30am. My mum once again is going to take me as I am not allowed to drive yet and Jan is at work. Blood test, echo and biopsy all done and finished by midday, so I buy mum lunch at the Hospital and then back home, I have found that the biopsy or the local anaesthetic seems to make me sleepy.

Thursday 14th September 2000
Off to Harefield again, my second home. Blood test, echo, heart biopsy and muga scan. I did have a muga scan during my transplant assessment which I should now get round to writing about, there is still so much to add this site. All being well this biopsy will not show any rejection and then I can get the doctors to allow me to drive again, although life is almost back to normal now anyway. I have been very busy decorating the lounge and I am still amazed at how good I feel, I am able to do a full days work now. Sunday is the fund raising day at Harefield, so I hope the weather stays fine, as I am taking part in the sponsored walk along with a lot of my family including my Nan. I will of course take lots of photo's on the day. Also I now have brought something(?) to give to the staff at Harefield as a thank you for looking after me during my stay, will do that on Sunday too.

Sunday 17th September 2000
I did some last minute collecting for my sponsor form, then off to Harefield for the walk/jog. It was great to see so many of my family taking part including my Nan and Mum, Jan and simon (my eldest son) jogged round, I chose to walk round with Charlie (my youngest daughter) and my aunty Linda (three and a half miles). I enjoyed the walk and was amazed that I felt as if I could do it again straight after just finishing it once, Rosalyn from the local paper has come to Harefield to support me and she has also arranged an interview with Harefield TV.  The weather stayed fine and I believe everyone enjoyed the day, now all I have to do is collect all the money. Off to visit the wards and see some of the staff to give them my thank you present for looking after me while I was in hospital. Oh nearly forgot, what is it? Well during my stay there I noticed most people seemed to get the staff chocolates, but I decided to try and kill two birds with one stone, so I had some pens made with the following printed on them.


The idea is that the staff use the pens during their working day/night and may pass the website address on to some of the patients, both pre and post transplant which is the main reason I built this site in the first place. As I had looked on the internet before my operation and found it to be all facts and figures. 

Friday 22nd September 2000
Woke up with a slight cold and sore throat, Jan phoned hospital from work to tell them and the next thing I know they phone me and I have to go in for a E.C.G, echo and blood test just in case it is a sign of rejection. Fortunately  everything looks fine and it is decided I have a slight cold. I am going back to Harefield Wednesday for physio and Thursday for another biopsy. The good thing about going to hospital today is that the doctor said it is now ok for me to drive again. My weight is still coming down slowly 79.6kg.

Tuesday 26th September 2000
Started physio at Harefield, twice a week for one and a half hours. Their are a group of us doing circuit training with warm up and cool down periods, I enjoyed doing this and I now have twelve more weeks to look forward to.

Thursday 28th September 2000
Return to Harefield for heart biopsy, blood tests, ecg and echo. I have also noticed that I am becoming hairier, I am also hungry nearly all the time but I don't want to gain weight. I eat at 8am 12noon and 6pm, I only have a piece of fruit between meals or a coffee and biscuits. My weight is stable at 79.8kg and if it goes up I just have a glass of milk for breakfast and do some extra exercise. next biopsy is in two weeks times, if the results for this one are ok.

Monday 2nd October 2000
Noticed small spots on my shoulders and back of neck, spoke to hospital on phone and I was told to see my doctor first to check that what ever it is, is not catching at of course I don't want to pass anything on too the other patients, my appointment is later today. I have been given even more pills to clear up the spots that one of the other pills is coursing. 

Tuesday 10th October 2000
Spots are still on my shoulders and neck, I have phoned Harefield and arranged to go their today for one of their doctors to have a look.

Thursday 12th October 2000
Harefield again this time for another heart biopsy, ecg and echo, all being well with the results and I will not have to come back for another two weeks. My weight is still stable at 79.8kg, and my spare bedroom is looking more like a gym than a bedroom.   

Thursday 26th October 2000
Yet another biopsy, echo, chest x-ray and ecg. Still have rash and my blood pressure is slightly high, apart from that I still feel absolutely fabulous, today I wrote to Tony Blair about my concerns for Harefield Hospital and the Governments plans for it.

Thursday 5th November 2000
Off to Harefield for another biopsy, echo, chest x-ray and ecg. Still have rash and my blood pressure is slightly high, apart from that I still feel absolutely fabulous. So far so good still no real problems and no rejection hope it stays that way.

Thursday 12th December 2000
Yes you guessed it Harefield again, another biopsy, echo, chest x-ray and ecg. Still have rash and my blood pressure is slightly high. My weight has gone up to 85kg, but I still feel good and after Christmas I will work out a lot more.

Wednesday 10th January 2001
Harefield to have a 24hr tape with ecg type leads on my chest to monitor heart. This is routine at six months.

Thursday 11th January 2001
Back to Harefield to have tape and chest leads removed. Once again another biopsy, echo, chest x-ray and ecg. Still have rash and my blood pressure is slightly high, apart from that I still feel absolutely fabulous. Once again I got the all clear, I must admit I was worried this time that I may have had rejection but things are still going well for me. Fingers crossed they will stay that way. I am still glad I decided to go ahead with the Transplant, there is a good chance I would have been dead now if I hadn't, so every day now is a bonus.

Thursday 1st February 2001
I have made appointment to see my local doctor today, as the spots that I have had on my shoulders and neck are now on my face as well. The has given me some cream to use, he still feels the spots are a reaction to some of the pills I am taking.

Tuesday 6th February 2001
Went to Harefield today for a blood test, only to be told later that I have to re-do it on Friday. While I was there I also gave in the Harefield collection box's I had left at my doctors & local chemist. I then went to see Professor Yacoub's secretary and gave her some pens for the professor and his team.

Friday 8th February
Had to pick Jan up from garage, as her car is being serviced. This makes me a bit late getting to Harefield, 9.45am you have to give blood before your morning Cyclosporin (Neoral) immunosuppressant. I also hear that there are two heart patient's here that I made friends with during my stay. John Ruben is in for his first MOT, its now a year since his heart & lung transplant, so I went off to find him and have a chat. Then during lunch in the canteen I met Mohamed a chap I shared a room with for a couple of days after transplant, Mohamed had a piggy back domino heart transplant. He kept his own heart and has a donor heart transplanted next to it. this donor heart came from another patient, who had a heart and lung transplant. 

Sunday 18th February 2001
I brought my self a bike and decided to go for a ride, only to be bitten by a dog. The dog managed to draw blood on my knee and shin, I rang E ward at Harefield and arranged to go in for some floxacillan and a tetanus injection. This could only happen to me, I try to keep fit and get bitten by a dog.

Thursday 8th March 2001
Harefield hospital for another biopsy, echo and ecg. I also took a photo of the pieces of heart removed during the biopsy and have added it to the heart biopsy page. As for the dog bite, the police interviewed the owner of the dog and decided it was very out of character for the dog, and with my permission only a warning would be issued. 

My medication has also been reduced
Prevasatin 20mg, Amlodipine 5mg, Septrim 480mg, Neoral (cyclosporin) 175mg/150mg, Mycophenolate Mofetil (cellcept) 1g/1g & Prenislone (steroids) 6mg.

Thursday 29th March 2001
I have a sore throat, a bit of a cold and a cough, but apart from that I still feel great. Decided to write a letter to my donor family, I have given the letter to my coordinator to pass on, she has told me that some donor families don't read or except mail from the recipient but there always kept on file any way.

Prenislone now down to 5mg, four more weeks and I hope to be off it for good.

Tuesday 3rd April 2001
Cold has got much worse, I have decided to contact Harefield Hospital, they told me to come in for some checks. Blood Test, ECG, Echo and Chest X-ray and see the doctor, he believes it is just a bad cold and gives me a seven day course of floxacillian, If I don't feel any better in a couple of days I am to go back.

Wednesday 4th April 2001
I can hardly stand up as I feel dizzy, no temperature but I feel really rough. Jan takes me back to Harefield and on the way we have to stop several times for me to be sick. Blood Test and ECG see another doctor, he also believes it to be a bad cold. I am to come back on Thursday next week.

Thursday 5th April 2001
Doctor phones me at home to see how I am (why do people knock the NHS?), I still feel rough but not as bad as yesterday, he said stay in bed, drink plenty (not alcohol sadly), and he will see me next week unless I get worse them I am to go straight in.

Thursday 12th April 2001
I feel much better, still not quite over the cold but a lot better than I was. Harefield, ECG, Echo and Blood tests. Doctor gives me another course of floxacillian, and arranges for me to have a biopsy in May. They did tell me to be careful and try not to get a cold or come into contact with any ill. Now I know why, but having a young family makes it nearly impossible to avoid coughs and colds.

Tuesday 8th May 2001
Had to go to Harefield today to do a physio test, this is to check that I am keeping up my exercises and looking after my new heart. When I first started physio, I was weighed, measured and then tested by having to walk round cones and timed. Today I have been retested, and if I have been doing as I was told the result should be about a 35% improvement, the test lasted about 30 minutes. My improvement was not what they or I had expected, I was hoping to be a bit above average, no doubt they were hoping for at least average to keep there figures up. Perhaps I should get to the point:-


Yes! 53%, I am well pleased with that.

Thursday 10th May 2001
Harefield hospital for my 10 month heart biopsy, ECG, Echo and X ray.

Thursday 12th July 2001
My first year is almost up and because I want to go on holiday for two weeks I am going to have my first year check up a couple of weeks early. So 9am back at Harefield, first a blood test, then ecg, echo, x-ray, muga scan, treadmill/exercise test and then a 25 hour ecg tape fitted. Not bad for day one, but I have to be back at 8am for a angiogram tomorrow.

Friday 13th July 2001
Well just my luck, Friday 13th and I am going to have a angiogram, the angio took about 40 minutes and then I had a heart biopsy done to check for rejection. Now I need to lay still for 4 hours before I am allowed to go home, the doctor came to see me while I was having my bed rest and told me everything was fine. I can now lok forward to a great summer holiday with my family.

Wednesday 1st August 2001
Just before I went on holiday I made an appeal on national TV for donors as it was national donor week, just by chance my donor family saw the show and realised I had received there sons heart. On return from my holiday the TV company phoned me and asked if I would be willing to meet them on the show, which of course I did.

Monday 28th January 2002
Time for my 18 month check up, where has the time gone? well this check up was really straight forward, Nothing to eat from the mid-night Sunday, then Monday morning off to Harefield Hospital for Blood test, ECG, Echo and chest X-ray, a short visit with the Doctor and that was it, I have to have a blood test every 2 months and my next main appointment is in 6 months 1st August 2002 for my 2nd year post op check up (MOT).

Monday 5th August 2002
I had my second year check up last Thursday and I am pleased to say it went well, so what was involved? Wednesday morning (the day before test) I had to start my 24hr urine collection, then from midnight I had to fast until after my blood test in the morning. Thursday 9am I was at the hospital for my second year check up (MOT), first was the blood test which included a cholesterol test hence the need to fast from midnight and I handed in my urine collection. Next I was sent off for an ecg, followed by a chest x-ray, then a echo (ultra sound), and then the exercise test 14 minutes on a treadmill which gets steeper every 3 minutes. I then went and had some lunch as I hadn't eaten since last night, after lunch I went back to see the doctor for my results which were fine, I need to have a blood test in 2 months time and a check up in 6 months unless I feel unwell sooner than that.   

21st September 2002
I have had to have my first dental work done since transplant (a filling), the only extra precaution I needed was an antibiotic drink 1 hour before the work was done and another 2 hours after.

11th May 2003
24hr tapeI had a routine blood test last Thursday at Harefield to check the drug levels in my blood, part of the test is to have your blood pressure checked. Sadly once again my blood pressure was too high, this time the doctor decided it has gone on too long and wants to do a 24hr blood pressure test, the good news is you can wear the monitor on a waist belt and then go home and carry on as normal. I didn't find wearing the monitor to much of a problem but it was hard getting some sleep with the arm band blowing up every 20 minutes.

If my blood pressure is found to be too high over the 24hr period then I will have to take another pill, but it will be interesting if the doctor tells me to exercise more, I will then suggest he visits the website and sees how much I am already doing.

12 September 2003
I have just had my 3rd year post transplant check up (MOT) and yes it was a month late. Monday morning I started my 24hr urine collection and then Tuesday morning I went to Harefield hospital, gave in my gallon specimen (well almost a gallon) and then started my set of tests which included:- Fasting Blood Test (nothing to eat or drink since mid-night), E.C.G. Chest X-Ray, Echo-cardiograph, Treadmill exercise test (without the breathing test) and then see the Doctor. Wednesday I had to return to the Hospital for an angiogram, the worst part about that is the 4 hours bed rest and having to shave your groin area, I now feel like I have a Hedge Hog (porcupine) between my legs and I am walking a bit like John Wayne.

I am very pleased to add that I have been given a clean bill of health.  

Robert Tools
Artificial Heart Transplant
Robert Tools

"I realize that death is inevitable, but I also realize that if there's an opportunity to extend it, you take it"

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