Patient Experience

Below, you can read the experience of vairous transplant patients and their families.


Renal Unit Patient - Paul Tomlinson

Hello, my name is Paul Tomlinson; I am 70 years old, live at Mount Batten in Plymouth and have been a patient with Derriford Renal Unit for about 20 years.

Up until I was 50, I had never been near a hospital, was very fit and healthy. I had been working overseas and on return to UK had a check-up with my local GP. My blood results suggested that my kidney function wasn’t what it should be. I was referred for a biopsy which showed I only had about 30% kidney function, with high blood pressure being the main cause for this deterioration. The Renal Unit managed to keep my kidneys functioning for another 8 years when I then had to go on to dialysis. I chose peritoneal dialysis as I needed to keep working and my job involved some travel. My boss was very supportive and I was able to dialysise while at work. It was at this time that I became a patient rep with the Renal Unit, giving talks to renal patients and imputing the patients’ views to various committees.

I had my first transplant after about 2 and half years on dialysis. However, despite it being a good match it never worked. It is important that I point out that this is very rare and there is only about a 5% failure rate nationally. As I became very poorly it was decided to take out the failed kidney and I soon recovered, although still on dialysis. I was, of course, devastated as I had invested so much in the hope that this new kidney would give me a new life. Nevertheless, I had to put this behind me and get on with it. Fortunately, I have a very strong constitution and was accepted back on the transplant list several months later. You have to stay positive during this wait. Some people wait seven or eight years and with some people it can be as short as a few weeks – it’s all about getting the right match and staying healthy. About 18 months later I got the call again – just before I was about to go on my first overseas holiday while on dialysis – this transplant was successful and I am happy to say that after nearly 11 years it is still working.

Certainly for me, my transplant has changed my life and it has given me so much more energy with the ability to have a normal existence. This would not have been possible without my unknown donor. I owe him everything and try and live my life to the full to reflect his gift. I would also like to thank Derriford Renal Unit who have been immensely supportive throughout. Always there when you need them and as a patient you feel part of one big, informal family.

I would also add that it is important to remember your carers. My partner Melanie stood by me through all the trials and tribulations. She saw and felt things differently to me and it vital that her contributions and concerns are acknowledged.


Kidney donor

It all began when I became aware of the new rules for kidney donation (after watching a TV programme), the heartache kidney disease and dialysis has upon people, gave me the inspiration to put myself forward to be an Alive Kidney Donor (ALKD). Being anonymous is important to me as I never want the recipient to feel indebted to me but for them to regain a life of independence. 

The testing for being a suitable candidate, to donate, was painless and the support from the living kidney transplant nurses, superb throughout. It took for everything to be done but I had a successful nephrectomy and the recipient’s body accepted the kidney. Walking into theatre and meeting all the surgical team reassured me that I was in safe hands. I stayed in hospital two nights and managed my pain with paracetamol (at home); even with awful testicular pain (which lasted about a month).

Being an altruistic donor is important to me as I will forever know that my efforts have been successful. I don’t want to hear if things went array; which will only disappoint me and the recipient. I can only share the success of my journey in the knowledge that I’ve been able to give someone back their life! 

I didn’t volunteer to be an ALKD to receive praise for my actions. My family were worried initially but fully supportive; after hours of continuously talking through the complications and receiving reassurance that all will be well. I am back to normal activity: no pain, running 5 miles and enjoying my life to the full; as I’m confident my recipient is. 


Kidney donor's family

We first starting talking about ALKD after a tv programme when I suggested to my husband that this would be something he would like to do.  I did, at times, wish I hadn’t suggested it. The whole process, although very smooth, was quite emotionally draining, as I was worried about the effects on his life and our life as a family.  Although I did totally support him there were ‘wobbly’ times and some tears. I knew if I asked him to stop the process he would but I understood how important it was to him.  It almost felt a relief to get to the day of donation as we had been talking about it for about 10 months. Seeing him waving from his hospital bed, after the surgery, is a moment I will never forget!  

I don’t think I could have got through this experience without the exceptional support from the Living Kidney donor nurses; all my questions were answered.  The day before my husband’s surgery I spoke to one of the nurses as I was really scared. Their professional calm and confident approach made all the difference for me.

His recovery was pretty quick, although he got a bit frustrated when he was tired but, overall, now he is the same as pre donation.  We both know that our combined actions have enabled someone to ‘restart’ their life and that’s a good feeling!


Renal Unit Patient - Miss Patricia (Pat) Hogben 

I had been nursing for 22 years in QARNNS. Queen Alexandras Royal Naval Nursing Service. Towards the end of my service I developed some problems with headaches, high blood pressure and anaemia.  At the time I was very busy at work and put it to the back of my mind. 

Just after leaving the service I received an outpatient appointment to be seen at Derriford Hospital.  Following this I was admitted for investigations of renal problems.  I spent the next 2 weeks in hospital going through many investigations.

Eventually I was diagnosed with Renal Failure.  I had actually lost 80% of my kidney function.  It was Glomerular Nephritis which was an auto immune condition; basically my kidneys were eating themselves.  As you can imagine this was a great shock to me, although I was relieved that this was the reason for my symptoms rather than anything more sinister!!

I was prescribed various medications which were to attempt to slow down the loss of my kidney function.  These were quite strong doses and made me feel quite unwell initially.  I seen regularly in Outpatients Clinics and dosages were altered as and when necessary. 

Whilst I was in the QARNNS I had been deployed on board ship and was sent down to be part of the first Gulf War in 1990-1991.  I spent 6 months there, having been given lots of vaccines and inoculations prior to and during the hostilities.  It had been suggested that this may have been the cause of my Renal Failure. 

Eventually after 4 – 5 years my Renal Function had decreased so much that it was decided I needed to go on to Dialysis.  I began this in July 2001.  I chose Peritoneal Dialysis.  I managed this very well and was able to continue an almost normal lifestyle.  I still manage to go to work part time.  I was working in the Operating Theatres at Derriford Hospital. 

At this time I was put on the Transplant List.  Unfortunately I have an unusual blood group so knew that the chances of a match were probably less likely.

I continued on dialysis without any real problems and was into a very organised routine.  The biggest problems were the small amount of fluids I was allowed to drink and I was very limited on some of the foods I could eat.  This was all just part and parcel of my life.

On September 18 2005 at 2100 I was sat watching TV when I had a phone call, this was the Transplant Team.  I was told they had a kidney for me.  Well you can imagine all of a sudden I had to get organised to be in the Hospital within 30 minutes.  My Partner drove me in and I was met by the Transplant Team.  All the stops were pulled out and everything was done to prepare me for surgery. 

After a few hours I was able to sleep and was made ready for the Operation the following morning at 0900. 

Even though I worked in the Operating Theatre I was still very nervous about the procedure.  I did know exactly what was going to happen.  I had the greatest faith in all the people involved.  Once into the Anaesthetic Room where I was put to sleep I knew no more until I woke up on the ward.  I had been aware of all the intravenous lines I would have in so it wasn’t a shock.  I also had a urinary catheter in.  I was very pleased about this as no way would I have been able to get out of bed.

It became quite obvious that my urinary output was not what it was expected to be.  There was very little being passed through the catheter.  This was a worry as it could mean that the new kidney was not working.  I was also very full of fluid and very odematous.  I had put on 10 kgs literally overnight.  By this time I was able to get myself out of bed but my legs were like lead weights and I couldn’t bend my knees or ankles.  This did make it very difficult to mobilise. 

A few days went by and many discussions took place as to what to do regarding the kidney.  Eventually it was decided to put me on to a regime of medication to give the new kidney a kick.  It was thought to be what they called “Sleepy”.  I then had to have a new line put in my neck so these drugs could be administered more easily.  This was quite an experience, remembering that these are most often inserted when you are asleep.

Well over the next few days I was given a cocktail of drugs which included some cytotoxic ones.  I was put into a single room to keep me safe.  I was also given a blood transfusion.  Well after a few more days my new kidney suddenly started working and it was a bit like Niagara Falls.  Luckily I had my own toilet in the room as I was passing about 5,000 mls of urine every day.  The other problem was that some of the medication I had been given also made my bowels very loose so there was a bit of urgency involved it that respect.  I had to request softer toilet paper and some soothing cream as my poor bottom became very sore.

After about 3 weeks I had lost all the extra weight I had put on and was feeling much better.  I was now able to feel the benefit of my new kidney.  I was put on a new regime of drugs and allowed to go home.

I had to return to Outpatients Clinics twice a week for the first month, then once a week.  It was necessary to keep a close check on my blood levels and how the medication was working.  The dosages had to be altered quite regularly. 

Of course once I had the Transplant I was now allowed to eat and drink almost normally.  There were a few foods that I am still not allowed but nothing like the amounts I had to avoid when on dialysis.  The fluid intake was to be as much a possible which was great.  I was able to enjoy a proper cup of tea again.

As the days and months went by the medication were altered on a regular basis.  After quite some months things really began to settle down.  I was admitted to have the Dialysis tube removed from my abdomen.  This was lovely to be free of that.

My life completely changed and I was free to do almost anything I wanted.  I have now had my Transplant for well over 14 years.  I have had no problems in that time.  I do have trouble keeping my weight down and it is always a battle to lose weight.  I continue to be monitored regulary and have Outpatient Appointments every 3 months. 

I am so grateful for the family of my donor for being so selfless in allowing a kidney to be donated.

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