{"id":714,"date":"2017-12-20T11:37:08","date_gmt":"2017-12-20T11:37:08","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/imperial-medicine\/?p=714"},"modified":"2018-06-25T14:12:48","modified_gmt":"2018-06-25T13:12:48","slug":"would-you-give-the-gift-of-a-kidney-to-a-stranger-in-need","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/imperial-medicine\/2017\/12\/20\/would-you-give-the-gift-of-a-kidney-to-a-stranger-in-need\/","title":{"rendered":"Would you give the gift of a kidney to a stranger in need?"},"content":{"rendered":"

\"Kidney<\/p>\n

It is the season of giving, so we look at how kidney donations from strangers are giving kidney\u00a0disease patients a second chance at life.\u00a0<\/strong><\/p>\n

\n

As far as generous Christmas presents go, donating your kidney seems for many at the extreme end. However, for a few lucky kidney disease patients, this is the gift of a lifetime. Known as unspecified or non-directed altruistic kidney donation, this form of live organ donation is on the rise, and could potentially wipe the waiting list if more stepped forward. I met Frank Dor<\/a>, a consultant transplant surgeon and Head of Transplantation at Imperial College Healthcare NHS Trust, who has carried out hundreds\u00a0of live organ donations.<\/p>\n

The waiting game<\/h2>\n

Frank receives a phone call notifying him that a kidney from a deceased donor has been allocated to one of the recipients at Imperial. This single kidney is in high-demand as there are around 5,000 people on the UK NHS Blood and Transplant<\/a> (NHSBT) waiting list for a kidney; some waiting for up to five years. Unfortunately, a few hundred of these will die in the meantime for lack of one.<\/p>\n

These patients have chronic kidney disease, meaning they have lost their kidney function so dialysis three times per week becomes the norm. However, life on dialysis is debilitating, difficult and time-consuming. \u201cDialysis is merely a way of keeping people alive, it\u2019s just a temporary measure that can never fully replace the kidney function,\u201d Frank tells me. \u201cEventually patients on the waiting list get to a point where they start to lose hope and stop making plans for the future\u201d.<\/p>\n

The long-term solution is receiving a kidney transplantation, of which there are two types \u2013 living and deceased. Transplantation<\/a> provides patients with the opportunity for a longer and better quality of life, with patients typically gaining 10-20 years of life compared to dialysis. However, the odds for receiving one are not favourable: there are 1,500 patients on dialysis in Imperial College Healthcare NHS Trust but only around 200 of those get transplanted every year. There is a huge gap between supply and demand nationally and internationally.<\/p>\n

Default thinking<\/h2>\n

Although the number is slowly rising, there are not enough people registered to be deceased donors. Frank highlights the importance of the opt-out system \u2013 currently debated in England \u2013 which is associated with higher rates of registered organ donors in other European countries. If organ donation was the default option it would result in a culture change. Compounding this is the fact that not every single organ from a deceased donor is suitable. In fact, each year only one in 15,000 people die in such a way that they can be an organ donor, and even then, the organs might not all be suitable for a number of reasons.<\/p>\n

The beauty of live donation<\/h2>\n

\u201cYou don\u2019t need two kidneys, so why not give one to someone who needs it?\u201d The kidney is one of the few organs you can donate whilst you\u2019re alive. The Nobel prize-winning procedure was first performed in 1954 and the surgery has improved enormously over the years thanks to modern operative techniques. It used to be a big operation with a huge incision, and rib resections. It\u2019s now a minimally-invasive operation \u2013 often using the keyhole technique \u2013 that is being performed around 1000 times per year in the UK.<\/p>\n

Living donor kidney transplantation offers the best treatment in terms of live expectancy compared to a deceased donor kidney transplant. This is because the donors are screened medically, the operations are planned and done during the daytime so a full team of staff will be present. Deceased donors tend to be elderly with multiple comorbidities \u2013 more than one illness \u2013 so the kidneys aren\u2019t always in the best shape. Frank\u2019s ethos is about giving patients the best treatment option first, so live donor kidney transplantation is regarded the gold standard.<\/p>\n

One of Frank\u2019s biggest passion is avoiding dialysis for his patients, and this is possible with live donors and a little careful planning of the transplantation. \u201cIn these so-called pre-emptive live donor kidney transplantations, even better results are obtained in terms of patient and graft survival, and even incidence of rejection. Clearly, we need to work much harder to ensure that every patient gets the opportunity to find a live kidney donor. Secondly, to identify this live kidney donor early enough to be able to finish the work up before the patient needs the transplant so that the majority of patients will receive a pre-emptive transplant. This should be the default. In the old default thinking, people would be dialysed and then be waitlisted for transplantation, which is clearly not the best way forward for most patients\u201d, explains Frank.<\/p>\n

Pure altruism \u00a0<\/strong><\/h2>\n

A new wave of live donation that is on the rise is unspecified or non-directed altruistic kidney donation \u2013 giving up your kidney anonymously to a complete stranger \u2013 without any direct benefit. Typically, we associate live donation with a donor giving up a kidney to a family member or friend; specified or directed kidney donation. When a person makes this personal sacrifice because of a family member there will be a bit more self-benefit for the donor, as they will get a much healthier loved one back after the transplant.<\/p>\n

Every year, in the UK, a few hundred altruistic donors come forward that feel compelled to donate a body part to a recipient they may never learn anything about. This is a trend Frank strongly welcomes because if the numbers continue to rise at the same rate as previous years, it could potentially wipe the waiting list. This could lead to a ripple effect where one altruistic donor can set off a whole chain of transplants. So, one altruistic donation typically helps multiple people with incompatible live kidney donors that can be swapped in a national exchange system, as well as a person on the deceased donor waitlist that does not have a live kidney donor.<\/p>\n

The idea of giving an organ away altruistically is something that divides people and until 2006 it was actually illegal in the UK. Frank puts it down to the fact that this ultimate form of \u2018do-gooding\u2019 is a gesture that most can\u2019t comprehend and some have even labelled this type of behaviour as crazy.<\/p>\n

But what exactly motivates exceptional altruist? \u201cI\u2019ve met hundreds in the UK and in the Netherlands, and each one has an individual story. One thing that they have in common is that their life is full of charity, doing good and often already donors of blood or bone marrow. Often, they\u2019ve had someone in their life with kidney disease or chronic disease and this is their way of paying back the NHS\u201d Frank says, \u201cand I don\u2019t think that is crazy at all\u201d.<\/p>\n

Risky business<\/h2>\n

\"\"<\/p>\n

Any adult in good health and with two kidneys can make this sacrifice. However, it\u2019s not a decision to be taken lightly, warns Frank, and \u201cprobably not suitable for the squeamish\u201d.Over a period of months, the donor is put through a plethora of medical tests, X-rays, scans (to ensure that the donor can live a healthy life with one kidney), ultimately culminating in an operation, that is actually very safe.<\/p>\n

The operation provides no personal benefit \u2013 only risks (albeit very low) \u2013 to the donor so Frank feels a massive responsibility when operating on altruistic donors: \u201cThey learn about the risks involved, but it doesn\u2019t deter them. Most of them already decided long before that they\u00a0want to do it.\u201d<\/p>\n

A tricky subject<\/h2>\n

Non-directed altruistic donors are still quite rare compared to directed altruistic kidney donations, making up around 9% of all live kidney donors. For the most part, the onus is on the kidney patients to find a suitable donor from their social circle. This can be a challenge for some of Frank\u2019s patients who live in one of the most diverse areas of the country: \u201cSo many different ethnicities, religions, countries, views to life and body integrity are represented amongst my patient cohort.\u201d This brings its own set of challenges, as some patients are reluctant to talk about life matters, such as organ donation, with their peers. \u201cIt requires a very individualistic tailor-made approach preferably in people\u2019s native language, and with an understanding of the culture.\u201d<\/p>\n

Patients are often too afraid of asking someone in their social circle whether they would be willing to donate a kidney. Understandably so. \u201cIt\u2019s not just a pint of milk from your neighbour, you\u2019re asking an individual to be put through multiple tests, screens and an operation to remove an organ.\u201d But what restores Frank\u2019s faith in humanity is that most people are willing to help when asked.<\/p>\n

Crowdsourced kidneys<\/h2>\n

With the\u00a0demand for organ donation growing worldwide, some of Frank\u2019s patients are looking in unlikely places for their kidneys. Public solicitation for organs offers an opportunity to find a living donor for potential recipients who do not have one within their social or family network. For example, in the US, Facebook offers members the ability to\u00a0identify themselves as organ donors on their Facebook pages\u00a0and patients can search for these donors and contact them.<\/p>\n

Franks has written extensively on the topic of public solicitation<\/a> and doesn\u2019t think in principle there is anything unethical about it. Whilst there are clear guidelines for this in the UK, Frank has noticed that patients who engage in this activity are often not well prepared for the consequences and often not guided by a transplant professional. Namely, those who have been on the waiting list for years are frustrated and in a vulnerable position. These individuals would go extreme lengths to find a donor, such as paying for one, which is illegal (apart from in Iran), unethical and dangerous.\"Frank<\/p>\n

Frank Dor (right) with colleagues<\/span><\/p>\n

A second chance at life<\/h2>\n

Even after performing many hundreds of kidney transplants, Frank finds every single one just as rewarding; \u201cThe beauty of it is that you get to know both the donor and the recipient in live donor kidney transplantation. You find out what\u2019s important to them, what they wish for, and what they can\u2019t do anymore in life, especially when on dialysis.\u201d The numerous thank you cards and gifts found in Frank\u2019s office are a marker of his kidney donors and transplant patients\u2019 gratitude to be given the opportunity to donate a kidney safely, or at a second chance at life.<\/p>\n

The decision as to who gets the kidney that had just become available for an Imperial patient is out of Frank\u2019s hands and is down to a complex algorithm managed by NHSBT based on priority, best match and proximity. However, Frank is just about to make a phone call that will make one kidney patient\u2019s Christmas.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

It is the season of giving, so we look at how kidney donations from strangers are giving kidney\u00a0disease patients a second chance at life.\u00a0 As far as generous Christmas presents go, donating your kidney seems for many at the extreme end. 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