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Introduction to Recipient Experiences

Tissue and organ recipients come in all shapes and sizes. The stories that have been shared by recipients in this part of the website illustrate that fact very clearly. They are all real human beings leading ordinary lives like any one of us. Tissue and organ failure does not discriminate. Old people, tiny babies, Muslims, Jews, Gays, teenagers, disproportionately men, agnostics, healthy athletes, high flying executives, the children of leading politicians, celebrities and ordinary people alike can all have their lives saved or enhanced by various transplant procedures.

Between April 2007 & 2008 there were 609 deceased heart beating donors that enabled transplants to take place, a decrease from the previous year. Tragically Matthew Ferguson became a 17 year old heart beating donor following a car accident in April 2008. He and his family helped to save five lives – his family share their reflections elsewhere in this website.

There were 200 non-heart beating donors. (Heart beating donors are diagnosed as brain stem dead whilst still on a mechanical ventilator – that is why they are described as ‘heart beating’. Non heart beating donors have had medical treatment withdrawn because it has been assessed as futile to continue treatment. Consequently their heart has stopped naturally resulting in their death.) These 809 deceased donors enabled 2,381 life saving or life enhancing medical procedures to be carried out. On top of this there were 854 organ donations from live donors to deliver a total of 3,235 solid organ transplants. On March 31st 2008 there were 7,656 patients on the active transplant waiting list and a further 2,092 patients who had been temporarily suspended from the list. Forgive the crude mathematics, but if we had 809 deceased donors and 9,748 people needing a transplant in this period of time what does this tell us?

A person is about ten times more likely to need a transplant than they are to be a donor.

The key difference that sets transplant patients apart from the rest of the population is that a crucial part of their body has decided not to function as effectively as it should do. In some cases a particular organ has failed so badly that the patient will die without a transplant operation. Heart, lung, liver and small bowel transplant patients definitely fit into this category. These types of transplants do not guarantee quantity of life, but they do improve quality of life. For most the alternative to a transplant is death. It was a very sobering fact to be told back in 2005 that I had less than 6 months to live. A very caring and supporting cardiologist basically places you on death row with the clock ticking. The average waiting time for a heart transplant is 103 days currently. As each day goes by the sands of time run slowly away. The health of the patient usually gets worse and more unstable which increases the risk of the operation not succeeding when it actually happens.....if at all.

The cost of caring for a patient waiting for a transplant is considerable. It is an investment based on hope. The hope is that the person will eventually get a life saving transplant.

For over a thousand people each year the hope disappears.

If you were given a choice between dying and a heart transplant which option would you go for?

This appears to be an easy question to answer, but it is not.

Back in November 2008 Hannah Jones, then thirteen, persuaded the High Court to stop the Herefordshire Primary Care Trust issuing a court order that insisted she should have a heart transplant to save her life. Her family won this case on the basis that Hannah did not feel that the operation was in her best interest. Hannah had based her decision on the fact that she had been in too many hospitals for most of her young life fighting a rare form of leukaemia. The medication that helped her to battle with this disease led to serious heart damage. Hannah decided she wanted to spend her remaining years with her family, not in hospital coping with the medical responsibilities that follow a transplant operation.

The kidney transplant challenge

One of the biggest challenges facing the transplant community is renal failure. Most of us are blessed with two kidneys. They filter nasty toxins out of body and surplus fluid that builds up within us as part of our normal daily routine. The design of the human body led most of us to have two active filtration units. We can actually lead a healthy life with just one kidney.

  • By March 31st 2008 6,980 patients had been listed for a kidney transplant – this represented a 7% increase over the previous year and a staggering 51% increase since 1998.
  • The number of patients receiving a kidney transplant rose by 8.5% from 1,339 in 1998 to 1,453 in 2008. In the same period the number of deceased kidney donors increased by just 11% to 789 in 2008.
  • In the USA about half the donated kidney organs come from living donors. In the UK this figure increases each year too. Between 2007 & 2008 there were 829 living kidney donors which represents a 20% increase over the previous year. In total 2,078 were donated; 59% from deceased donors and 41% from living donors.

To be continued



 

Page links

 

Challenging Transplant Issues

Introduction

Solid Organ Donation

What solid organs can be donated?

Human Tissue Donation

What human tissue can be donated?

How to become a Donor


a. Blood donation
b. Bone Marrow donation
c. Cord blood donation
d. Tissue and Organ donation
e. Sperm and Embryo donation
f. Whole body donation
g. Brain donation

Donor Experiences


1. Denise Darvall - first heart donor
2. Leroy Hobden -kidney
3. Matthew Ferguson - multiple organs
4. Living kidney donor Maggie
5.The Herrick twins - kidney
6.Charlotte Pestell - eggs
7.Mark Jackson - sperm
8.Barbara Ryder- kidney
9.Charlotte Newall - blood donor
10.Laura Ashworth - multiple organs
11.Daniel Harrison - tissue donor
12.Adam Rogers - multiple organ donor

Heart recipient stories


1. Louis Washkansky - first heart recipient
2. Graham Brushett - heart & kidney
3.Dave Garry - heart
4.Chet Szuber – received his daughter’s heart
5.Bill Noble - heart

Lung recipient stories


1. Justine Laymond - double lung
2. Elaine Betts - double lung
3.Gill Hollis - single lung
4.Sean Bell - double lung

Kidney recipient stories


1. The Herrick twins - kidney
2. Holly Shaw - kidney
3.Jonah Lomu - kidney
4.Ivan Klasnic - kidney
5.Andy Loudon - kidney
6.Rachel Leake – kidney recipient
7.Soul singer Natalie Cole – received a kidney from a deceased fan

Liver recipient stories


1. Ivo Dawnay - liver
2.Brian Clough - liver
3.Clare Bond - liver
4.Vikki Medlicott - liver
5.Apple Boss - Steve Jobs - liver

Other recipient stories


1. Alex Patrick - eggs
2.Beth Morris - blood and bone marrow
3.Susanne Butscher - ovary
4.Claudio Castille - trachea
5.The Newall family

Waiting and hoping


1. Simon Sykes
2. Rachael Wakefield

And time ran out


1. Helen Miller
2. Adrian Sudbury
3. Lewis Prior

The Organ Donation Taskforce - ODT


1. The Organ Donation Taskforce - ODT
2. Recommendations of the ODT

Presumed Consent debate


1. Why change opt-in?
2. Why is legal and medical consent so important?
3. Opt-out or Opt-in?
4. Alternative consent systems
a. Routine Salvaging
b. Priority consent
c. Preferred consent
d. Conditional consent
e. A Social Contract
f. Mandated Consent

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