This is Rebecca’s tribute to her wonderful husband, Keith. Keith was the recipient of Rebecca’s kidney in October 2010. Then two months later, suddenly and unexpectedly Keith passed away. Please read Rebecca’s tribute to her husband. One of Keith’s greatest wishes was that people sign the organ donor register. Here in the UK you can sign up via this link – Organ Donor Register.
This is a tribute to my dearest, bravest husband. I miss him so terribly, painfully, much.
Keith and Rebecca
The last photo of us together. On my birthday, shortly after the transplant, both apparently making a good recovery and with everything to look forward to.
Keith and I never had any doubts about our life together. We married less than six months after our first date.
Shortly after we got married, we decided to buy our first house together and Keith had to have a medical for the mortgage. We discovered that he had kidney disease (glomerulonephritis). He was in his 20’s and this came as this most enormous shock.The first doctor he saw told him fairly brutally that he would be on dialysis by the time he was 40.
The years went on and I watched his health and diet so carefully. Our local renal unit monitored his health regularly. The years went on. 40, 41, 42, 43, 44 and 45 came and went and with each landmark where he still had sufficient kidney function not to need dialysis he was so pleased, although there were noticeable changes to his health. Increasing levels of medication became part of our lives.
Meanwhile, we did as much as possible together. Knowing that in future, he might be on dialysis and our lives limited dramatically by that, we simply did as much as we possibly could. He said that even if we couldn’t do anything in future, we would still have our photo albums to look at. Whatever happened, we were certain that we could cope with it, simply because we had each other.
In 2010, after his 45th birthday, he deteriorated so far that dialysis or a transplant were necessary.
He started to think about the type of dialysis that he would prefer, although “prefer” is not really an appropriate word to use about anything so unpleasant.
But at the same time, we started the process to find out if I were a suitable donor. We already knew from an earlier scare that I am the wrong blood group, but this isn’t always a barrier. So summer 2010 was fairly grim, backwards and forwards to hospitals for so many tests. I found them frequently upsetting and intrusive, as I loathe being touched by strangers, but the idea that he would be able to have a transplant and get his life back was so wonderful that the only thing that mattered to me was that the transplant should go ahead. Hospitals have to be very concerned about the health of the donor and I had a huge number of meetings with people who warned me about the very many things that could go wrong for me. They also explained the risks that the kidney might fail. But the chances with a transplant from a healthy living donor are good. They do not spend much time on the potential risk to the recipient, other than explaining the usual risks from surgery. The quality of life for someone on dialysis is frankly poor and the long term health risks are such that transplants are infinitely superior. Well, usually.
People wonder how easy it is to make the decision to be a donor, and for me it was very easy. I wanted to do it for him, for us and for our future together. If I had a kidney that I could do without, then it made perfect sense for him to have it.
We were so happy when I turned out to be a suitable donor, and the surgery could be arranged quickly so there was no need for him to start dialysis. He was very brave about considering it, but he really dreaded the idea of his life revolving around it. So each step that brought us closer to a transplant was an opportunity to rejoice.
Keith undergoing plasmapheresis – so brave
In October 2010, we moved to a dismal hostel on site at Addenbrookes. Keith had some very gruelling sessions of plasmapheresis immediately before the surgery was scheduled to remove his antibodies, to increase the chance of success from an incompatible donor. And we were so happy and relieved when we were finally admitted to the transplant ward, and the next morning when we were told that we would have our surgeries at more or less the same time. I was perfectly happy to accept the risks to myself. As the needle went into my arm in the operating theatre, I felt completely ok with the idea that I might not wake up. I had done everything I could. But I did wake up, and they kept me in the recovery ward long enough for Keith to join me. His first words as he came round were about the things we would now be able to do together.
The surgery had been successful, the kidney worked and everything looked wonderful.
We both had to stay in hospital a little longer than expected; me because of some minor complications and Keith rather longer because he reacted quite badly to the huge cocktail of medication he had to take. But finally we were back home together again, taking care of each other as we recovered from the surgery. It was just such utter happiness to feel our lives starting to come back to us. We made plans. Keith and I had always planned to go to London to see the new year’s eve fireworks. So this year, he booked an extravagant stay at a hotel that overlooks the London Eye, with a gala dinner, champagne on the terrace at midnight while watching the fireworks and so on. It cost a small fortune, but he said we deserved it after the rotten summer of hospitals, and pain and difficulty of the transplant.
The new kidney continued to work well. Keith’s twice weekly visits to the clinic at Addenbrookes were reduced to once a week, because he was doing so well. He was relieved about this, not just because it was such a good sign, but also because he found making the journey to Cambridge fairly gruelling.
We started to make small outings together, pottering around the city, and congratulated ourselves on this. Just being able to do a little Christmas shopping with him was such a joy for me. I had suffered some nerve damage following the surgery and he was worried about this, so he took particular care of me, so that I wouldn’t be put under any strain and did everything for me – walking the dogs, taking my Christmas parcels to the post for me, and so on. Keith planned our Christmas celebrations. He put up some Christmas decorations – far fewer than we usually have, but still being slightly fragile from the surgery it was best that way. Every evening, as we sat down together in the sitting room, he told me how lovely the Christmas tree was. He ordered the food for the Christmas dinner – cooking it is his speciality – he adores every detail. We invited lots of people to visit.
He had so many plans for next year, and there were so many things we were looking forward to doing, particularly resuming the travelling that we loved and hadn’t been able to do so much this year because of his health. I suggested that he steady on – my only concern was that the kidney might fail. But we would have handled that because we would have been together. Being together was always the best and most important thing.
He was so committed to his recovery, assuring me that as I had given him the gift of a kidney it was his duty to look after it. He took plenty of exercise, ate so healthily and slept well. He never complained about the enormous quantity of medication he had to take. He used three shelves in the wardrobe in the spare room to house it all and pinned up the pharmacist’s chart to help him keep track of it. I made a list of all the food that, having a non-existent immune system, he couldn’t eat, and put it on the fridge to remind him. People who have to take immunosuppressants are particularly vulnerable to skin cancers, so he began a routine of applying sunscreen every morning, and was so proud to tell me that he was remembering.
Quite simply, we had every reason to be happy and to look forward. And we were so very happy.
And then on 15th December, I saw him sitting on the floor in the hall. I thought he had fainted, but when I touched him, he was so cold even though the house was warm. The paramedics came quickly and worked on him for so long that I believed there was hope that I might get my most beloved husband back. But the hope was false one. And every bit of the hope, joy and optimism we had was so false that it feels so bitter now. The only comfort is that he never knew that. He only knew the optimism and the plans we made.
The post mortem showed that the primary cause of death was pulmonary thromboembolism. I know that this is a risk after surgery. But I thought that only happened to people who didn’t take sufficient exercise, and I had no idea it could happen so long after the surgery. I still cannot believe it happened to him. I can only feel resentful that it was Keith that went, not me. My surgery was more actually more serious and more potentially dangerous. And he was the one whose health was being intensively monitored. So it feels unutterably cruel that he is not still here.
So this is a tribute to my dearest, bravest husband. I miss him so terribly, painfully, much.
Rebecca Farwell
If you would like to make a donation to his preferred charity, Kidney Research UK, please go to this Just Giving page where you can safely donate via the blue button directly to the charity http://www.justgiving.com/Rebecca-Farwell
What would have have meant so very much to Keith was for everyone to join the organ donor register. People joining in his memory would be a great legacy. In the UK, you can join at UK Transplant.
Keith walking our dogs – Lily (Dalmatian) and Poppy
Keith making friends.
April 2011: Rebecca has now set up a Yahoo Groups for people bereaved through Living Donation. To quote from her email: “
http://health.groups.yahoo.com/group/bereavedbylivingdonation/
34 Responses to “Keith and Rebecca Farwell”
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It is so very cruel that he is not still here, but not at your expense Becky, that would have been just as cruel. It is a comfort that he died full of hopes and new dreams, but so sad, so sad. He was truly blessed though, to have been married to you for these nearly 20 years, and to have been given such a gift from you – such bravery.
This is a beautiful tribute,
With Love, Elle, (Keith’s sister)
Thank you. The emotions are just too complex, aren’t they?
(Di, the site owner, whose idea this page was, let me know there was a comment – I hadn’t thought to subscribe to comments.)
Hope you are all well.
Love, Becky
Rebecca, I’ll miss Keith’s company on our travels at APAA – but keep your chin up, you matter too, to all us out here in patent-land.
Dave
I have started a group to offer support to donors and recipients involved in living donation transplants who lost the other person as a consequence of the transplant.
I have felt very isolated since losing Keith – there are plenty of happy stories about successful transplants in the media, but the tragic failures are completely ignored. There is no support that deals with this situation. For all I know, I could be the only person in the world that has had to deal with this, but statistically that seems improbable. Perhaps there are other equally isolated people who would benefit from a mutual support group.
The group is at
http://health.groups.yahoo.com/group/bereavedbylivingdonation/
and I invite all bereaved donors and recipients to apply to join. Medical professionals with a specific interest in this area may also be welcome.
Hi Rebecca, I am so sorry for the loss of the love of your life. You were so blessed to have each other. I hope that the pain you feel right now soon subsides to laughter of funny memories you had with your husband. I am sorry for the deep raw pain you feel right now. I think it is amazing that you want to reach out to others on a similar path to help them. I can see why your husband loved you so much. You are a ray of sunshine in a dark time. It is very hard to put one foot in front of the other and carry on a day after the loss of someone who you loved, let alone hold a candle out and say to others come follow me I will show you the way out of the darkness. God bless you Rebecca!! If I can in any way help you let me know.
This site is for a petition for an opt-out organ donor register. I really believe that this is the way the UK should go, to increase the number of organs available for transplant and save so many lives.
http://donnasdream.co.uk/
Itis the way to go. I really do not know why some people object to an opt-out. The excuses they come up with do not really hold water but are more excuses for the sake of or selfish reasons from what I can tell. Hopefully it will become the way to have an opt-out.
Di
Di, I think people object because they don’t want to be organ donors, but are cowards and don’t want to admit it. At the moment, they can pretend they are going to get round to joining the register. If there were an opt-out one, they would have to admit that they would rather their organs were burnt or buried than used to save lives. I have no patience with them.
Anyway, although I am not sure how much good online petitions actually do, this one certainly can’t do any harm, so I am trying to send it to as many people as possible for them to sign.
So – to anyone who reads this – please sign it!
Rebecca
I am truly sorry about your husband, that must have been so devastating. There are no words that can comfort.
About opt-out. It is interesting but research shows Spain is often quoted as a good example of opt-out system as Spain has one of the highest number of donations. But Spain is the first to say that the opt-out sytem made very little difference to them at all. What did improve Spains organ donation rate to make it one of the top countries was the millions of Euros they ploughed into their supporting health system and it was that which made the huge difference. Each death where there is a potential organ the relatives are asked as a matter of course, by professionally trained people and that has made a huge difference. Perhaps the NHS should look to improving what they have before making changes in the law affecting people globally. I wonder how much is based on £££ and it is cheaper to change the law rather than improve the system that is there. The Organ Donor Task Force report from November 2008 makes it clear that presumed consent isn’t the magic wand people think it is. It sounds a great idea but I hope people are not disappointed if we go that route and it makes little difference. The antis will be shouting the odds.
I had a liver transplant two years ago. The liver was a gift from the deceased donor. Make the system opt out and no longer are organs gifts. I believe legislation should be the last resort.
Hello Timothy,
I have been reading about Spain’s achievements also and that opt-out had little to do with their success. I fully agree with you that this government needs to do more first before bringing in a law that affects everyone. Education about the donation process itself is paramount. Too many people have wrong ideas on the process involved at the time of death. A lot of people also think that every person that has signed their organs will be used – which they won’t. More money needs to be ploughed into the existing system to make it work better. More publicity and education re living donation also should be given. With all the talk about hard or soft opt-out systems, little talk I hear about education people about how to stay healthy and not get damaged kidneys in the first place. Prevention better than cure is always the best policy. If adults today cannot be taught how to live healthy lifestyles then maybe serious eduction in schools should be given so kids grow up knowing how to prevent a serious illness further down the line.
Di
This arises from some research I was doing for the Bereaved by Living Donation group.
I was trying to find statistics on donor death as well as recipient death. This seems to be more common following liver lobe donation.
BUT
statistics in all cases are not straightforward. I appreciate that compiling such things is complex. However, one report
(http://onlinelibrary.wiley.com/doi/10.1002/lt.20875/pdf) begins by stating “The actual risk of death in hepatic lobe donors for living donor liver transplantation (LDLT) is unknown because of the lack of a comprehensive database.”.
A few people are obviously trying to remedy this.
However, I am beginning to suspect that there is no real willingness, anywhere, to look at this. The medical profession generally is so gung ho FOR transplants that it doesn’t really deal with what happens when a death occurs. It does deal
with transplant failures (I mean of the organ) because then there are medical consequences that it has to deal with. A death does not have the same consequences – it becomes, bluntly, a matter for the family of the deceased and
the undertaker.
Although my husband and I were, of course, told that there is a statistical risk of death as with all surgery, there was far more dwelling on other possible
consequences – particularly to the health of the donor.
This means that in effect people are going into the live transplant procedure blind as to the most serious and dreadful potential outcome.
Rebecca
PS I would really like someone to contradict me here and tell me that there are lots of excellent facts and figures if only I knew where to look!
Di, I just noticed your comment “With all the talk about hard or soft opt-out systems, little talk I hear about education people about how to stay healthy and not get damaged kidneys in the first place. Prevention better than cure is always the best policy. If adults today cannot be taught how to live healthy lifestyles then maybe serious eduction in schools should be given so kids grow up knowing how to prevent a serious illness further down the line.”
The more education the better, of course. Increased understanding and awareness from school age upwards are essential.
But – most people who have kidney disease do not have it as a consequence of their own actions, lifestyle or whatever. It just happens, and no-one can tell them why. And believe me, they want answers – Keith spent an enormous amount of time trying to find out what had caused his kidneys to fail because he found it so hard to believe that it could just strike out of the blue. But it did. No-one could give him any kind of answer – there was a vague suggestion that it might be some kind of auto-immune disorder, but that is all it was; a vague suggestion.
I can’t help fearing that if people start to believe that kidney disease is in some way the fault of the sufferer because of their lifestyle choices or whatever, then even fewer will be willing to donate; they may feel that sufferers of kidney disease are getting what they deserved.
Sadly, staying healthy, eating well, not smoking, not drinking, exercising and anything else you care to name, while laudable in themselves, are no guarantee that you won’t suffer kidney failure.
Rebecca
hi Rebecca, there is a lot about teaching people how to take care of themselves. I come across it all the time on the net. Education is also beginning in schools. In fact I spent a whole day at a school in Bath talking about kidney donation and they are learning about organ transplants and why they are needed and how to keep healthy. The two leading causes of kidney failure are diabetes and high blood pressure, often caused by unhealthy lifestyle though not caused by that in every case. People donate because they want to help I do not think I have come across one person who is not willing to donate because of lifestyle choices.
Eating well, staying healthy, not smoking, not drinking excercising etc etc is one very good way to help prevent certain illnesses and diseases. Eating healthily does help keep diabetes at bay and diabetes can lead to kidney failure. No it is no guarantee that you wont get any disease, be it kidney, liver, heart just because you have a healthy lifestyle, but it goes a long way to helping to prevent getting ill.
Disease can hit anyone at any time regardless of lifestyle. Not just kidney disease but liver, heart .. you name it. I believe most people if they are going to donate will donate, regardless of why they think someone may be ill. I know I could not have cared less how someone got kidney failure, or indeed who they were, I just wanted to help as do thousands of people. Those who back away I believe would do anyway.
Di
Rebecca, as far as statistics for death of donors there have not been any deaths for kidney donors in this country to date (connected of course to the kidney donation). The risks they give is 1:3000 but they believe it is even less than that they are now saying. I cannot comment on liver donation deaths as that is not my subject though the operation is far more complicated and i believe the risk of death put at 1:200. This country does not allow altruistic liver donations although USA does and maybe other countries not sure about that. But shows the risks are perhaps too high for altruistic donors in this country.
I really do not believe people are going into kidney donation not knowing the risks. I certainly did not enter into donating having swept the risks under the carpet, I was fully aware of the risks of donating and took a long while weighing them up before deciding to go ahead. Each hospital is different and I think some will inform better than others.
It must be really hard when recipient dies and I do feel for you Rebecca, terrible time for you. I cannot make any comment on the procedure for recipient and how the risks are discussed etc as I never knew my recipient so do not know much about that side of it. I suppose one needs to see what each transplant unit, what their procedures are and how they deal with the subject. They all seem to vary with a lot of the procedures for donation so assume they do also for the recipient side. I suppose because the risk of dying is statistically less likely to happen than say other complications it is not covered as much, I really do not know.
Re your other posts I already have a link to the same kidney site that you posted about, so I have not repeated them here as I would prefer to keep all education links in the one place rather than distract from the subject of the page we are on i.e. tribute to your wonderful husband. People can easily find the links in the kidney section.
Di
x
I know there are many reasons for kidney disease and failure, some are due to our own bad body management and others are due to no particular reason and also can be hereditary. People are beginning to get more educated. I know my son’s school they had a lecture on health and how to try and keep healthy and what sort of illnesses you could get if you do not. I think youngsters are more aware than we think. There will always the the few who “don’t care” have that blase attitude it won’t happen to them. They will smoke at a young age and no matter what you say or what you show them they will continue to smoke because it won’t happen to them. But over the years smoking with youngsters had dropped dramatically. Kids are being taught good eating habits. Hard when their parents do not have good eating habits, but the education is out there. Youth groups also help try and educate. It was Di from this website I believe who said that the youth of today can educate their parents far better than we can, and that is probably true. As Di said in an earlier post on here more education is needed to inform people how to stay healthy. That may not stop all diseases, something we all know, but it will certainly cut down a lot. Prevention is better than cure and if we can use self-prevention that is even better. Resources can then be put to good use in helping to discover why disease can strike even when a good lifestyle is lived. I know you suffer from a NHS non treatable thyroid condition Di, as I have seen your posts on other forums – another illness that has no known cause.
The one thing we can ALL do is be educated on how to live our lives healthily. No it wont stop all diseases. We could still get any one of our organs suffer failure but it is a step in the right direction to look after ourselves.
I do not know anyone who believes that if they live a healthy life they will not get a disease, that would be a super cure/prevention if it was true. But they do believe they have cut down some chances of getting it, and that is true. Not smoking has to lessen the risk of lung cancer. Less sugary foods has to lessen the chances of diabetes and perhaps kidney failure, less alcolhol or any toxic chemical intake has to lessen the chance of liver disease. The word is lessen, not totally prevent and I think most people are aware of that.
I know Di, you believe strongly in natural products and not to use air freshners or body perfumes or any non natural products on your skin, in the air or in your body. I wish it was a lot easier and cheaper to find these products. This is where governments should be ashamed also, as so many chemicals we put into our system slowly do damage.
When I donated part of my liver to my son I knew the risks I knew there was a strong chance I may not get through it, and that he may not get through it but then when I gave birth to my son I knew I would do anything to try and keep him safe even if that meant dying for him. He would have died without a liver transplant and we waited as long as we could, time was running out. I was also aware of other complications could happen.
Having a loved one die after a transplant is so traumatising, just when you expect the person to return to normal or almost normal the worst thing ever happens. I have found most sections of dedicated NHS sections are lacking when it comes to a death in these sort of circumstances. The bereavement councillor is called and then you are on your own. It is treated no differently to any other death.
I look forward to seeing this new kidney donor charity Di when it gets going, end of this year I believe you said.
I won’t be helping out at the forum for a while as off on holidays in a few and busy until then. Let me know when you want me to help out on website again. Only too pleased to give cover.
Best regards
With God’s Blessings
Trudy
Di, thank you for letting me know that there are no recorded deaths for donors.
I have to admit that I am, for obvious reasons, far more interested in recipient deaths than donor ones. When I donated, I was perfectly happy to accept all risks to me. I am sure this is the case for all donors, both directed and altruistic ones. The wish to give overrides all other considerations. Di, you are quite right about donors knowing about the risks to themselves. If your experience was anything like mine, all the medical staff involved spent an enormous amount of time going over this with me, I had to memorise the statistics for my interview with the Human Tissue Authority rep and so on – and it made absolutely no difference to my wish to donate.
Had I been aware of what the risks were to the recipient – well, hard to judge because I didn’t.
What you say about the lack of donor deaths is certainly borne out by those who have joined the support group I started. There haven’t been any recipients who lost their donor. However there are quite a few donors whose recipient died.
(I have also been contacted by altruistic donors from the US. There, they don’t have the same rules that we do about donors and recipients not having personal details about each other, and frequently get to know each other and – inevitably – become friends. So if the recipient dies, even altruistic donors there often know about it, and the consequences are devastating for them, although I won’t go into details here. Our system here in the UK is far kinder, I think.)
Di, I remember when you invited me to contribute this tribute to Keith, I was concerned that it might deter people from giving and you said that you didn’t believe that it would. If people want to donate, they will regardless. I am sure that this is true. I urge everyone to register as an organ donor. Organ donation is a wonderful thing, and my personal loss doesn’t affect my conviction.
So you might be wondering why I am saying all this.
My interest in this is, of course, that it should not happen to others. When someone donates, it should be the wonderful gift of life and health that it is intended to be. Every time. Back to your point about education! When I started the support group, my living donor co-ordinator commented to me that while such deaths are uncommon, they are not as rare as they should be. We need to know how many recipients die following transplant, why recipients die, if there are any common links (for example, lack of proper medical attention to detail) because then we will know how many of those deaths were therefore preventable. If doctors – and patients – know what to watch out for, then the results will be good for all of us.
And Keith will not have died in vain.
(Sorry – hit submit comment before I meant to – didn’t mean to send two messages.)
Hi Trudy,
There are so many chemicals in every day products that we just use and don’t question their long term effects. We have to ask why is it that more and more children (and adults) now suffer from allergies, asthma etc when they never used to be so many. I truly believe it is what is in the atmosphere and what we put into our bodies especially via the skin. Trudy look at your shampoos, make up, hair spray, face cream and do check on the internet for the chemicals a lot of them use. For example most deodorants have aluminium in them – known to cause cancer. It may be in very minute quantity but when used every day …??? I developed “warts” under my arms. On the advice of someone I changed to a non aluminium deodorant (bionsen) within a month the warts had gone. Fluoride is known to damage the thyroid yet it is in our toothpaste, even some water supplies had or still do have fluoride put in, all to protect children’s teeth. So so very wrong that the majority have to suffer chemicals added to products for the minorities lack of care. Again another classic method of governments, give it to everyone, no matter what damage is caused as long as they can boast they brought down the figures for tooth decay. There is enough evidence to show fluoride can cause damage to thyroid. The list goes on about what we find in everyday products. Who know whether the long term effects of some of these chemicals affects our kidneys, liver, lungs, heart. We don’t know but is it worth taking the risk. Natural products are out there and if we cannot find them then we are best not using at all.
You just have to think … we get HRT patches, nicotene patches – those hormones and chemicals get more effectively absorbed into the body than taking tablet form and it is kinder on the liver and the body absorbs far more and quickly so less is required. So what is perfume doing to our skin? shampoos, soaps, foundation, lipstick, body lotions. ??? The effect may not be immediate but some effect over the years must be had, just that it maybe cannot be proved as not an instant bad effect.
How many use asprin or nurofen on a long term basis? Not good for the kidney as thins the vessels so if any other problem that doesn’t help. Toxins we take into our body can damage the liver over time. The list goes on and I could go on, lol.
I have learned a lot since having my thyroid fail on me, especially as the NHS won’t acknowledge there is anything now wrong with me, and privately I am now being treated but with natural products where possible, natural adrenal extract, natural thyroid support because who knows what caused my thyroid to fail? Certainly chemicals we stuff our bodies with do us no favours.
Keep your eyes peeled 1st or 2nd November Trudy, will be some newspaper publicity etc around then about the new charity of which I am honoured to have been asked to support it. Won’t say too much more now as not for me to advertise yet until fully up and running. Aimed at altruistic donors and run by donors/recipients/medical/non medical people.
Keep safe and God Bless!
Di
x
Just wanted to say – what exciting news about the new charity for altruistic donation. Wishing everyone involved all the very best for that. When it is up and running, I would be pleased and honoured to do anything I can to promote it.
Hi Rebecca, I may be a bit premature in mentioning the new charity, lol, as it is not mine but huge press release 1st/2nd November, so keep an eye out.
I know quite a bit about kidney donation in other countries especially in the USA as I have close ties with the USA and know some donors and recipients who over the past 4 years have become very good friends. I hope we never adopt the USA method of advertising for donors or offering to donate publicly, and via forums etc. I appreciate in USA the numbers waiting are huge compared to the UK but I have been in touch with too many recipients who have been let down at the last moment by donors who have answered their call then got cold feet for no really valid reason or have not done their homework first and later found easily available informtion about the donation process they did not like. Too many rush in to offer without thinking about the consequences.
I wish you well in what you are doing Rebecca, certainly sounds like questions need answers but are hard to find but maybe you will end up making the people concerned sit up and take action.
All the best
Di
x
I have diabetes which I am told could lead to kidney failure. My diabetes was purely due to bad living. Too many sugary foods etc. I was told by my consultant the highest number of kidney failures is due to bad life style which brings on hypertension / diabetes and then kidney failure /dialysis/ transplant can then occur. When we are young we don’t listen. We are told = Don’t smoke, don’t drink, don’t take drugs. Some youngster will experiment and because the bad side is not immediately visible they think they are the ones immune to it all. Only later do they realise when having a liver transplant at the age of 25 or diabetes then kidney failure at 45 that they should have listened. I read a suggestion somewhere from someone who said all schools should have children go to a dialysis unit so they can speak to the patients there. Speak to people who suffer liver failure due to their own mistakes. Speak to lung transplant patients who have smoked too much. Speak to families who have lost loved ones due to making the wrong life choices. Only then will a lot of young people really sit up and listen.
I wish I had taken notice over the years when people would say to me I was eating unhealthily and could develop disease. I thought they were just trying to scare me into eating the way they wanted me to eat. I never once thought that one day I could actually end up the way I am.
Some mistakes in life we can correct but damaging our own bodies is not something that we can always put right easily.
Best Regards
Terry
I am on dialysis and I need a kidney. I am blood group A+. I will soon be starting a facebook page asking for potential donors to come forward. I live in Devon area but donor can be anywhere in UK. If you hear of anyone who wishes to donate and help please point them to me.
God Bless and thank you
Kathy
Hi Kathy,
I wish you all the luck in your quest to find a donor. There will be a kidney somewhere with your name on it I am sure. Please let me know what happens and I will certainly remember you should I hear of anyone.
Thank you for posting and best of luck
Di
x
Hello, Rebecca.
You don’t know me but many many years past I was a good friend of Keith’s at school in Portsmouth.
It was quite by accident that I’ve learned, just now, of his untimely death. We lost touch a very long time ago but I have great memories of the lad and we shared some formative adventures and a few wild times.
He was always an older soul than the rest of us back then, exercising a kind of gentle patience with his pimply peers! And such a kind character which it seems from your writing he carried with him into adulthood and marriage with you.
You don’t know me but I wanted to send you a few words of memory from a faraway place in which Keith still lives on.
Best Wishes,
Ash
Shanghai, China
Hello Ash
Thank you so much for getting in touch. May I ask how you happened to hear about Keith?
Your name isn’t completely unfamiliar to me, as Keith did mention you, and that you had adventures together that he remembered with fondness.
I was interested to see that you are in Shanghai. Much of Keith’s business was in south-east Asia and as it is an area that we both love, we travelled a lot in the region, and had made plans to visit Shanghai – but events overtook us, and we never made it, which is a great regret.
Many thanks for your kind words.
With very best wishes
Rebecca Chambers Farwell
I don’t know if this is likely to be of interest to other donors/recipients, but I wrote to the hospital that carried out that transplant, to ask questions about what I still believe were the failures of care that led to my husband’s death. Although I have received several letters, I didn’t really feel that they answered the questions I was actually asking.
So I have written to the Health Onbudsman to ask for their office to investigate. I have had an initial reply very quickly – to say that they have carried out an initial assessment, and will now carry out a further assessment to decide whether to investigate further. It sounds very bureaucratic to me, but at least it isn’t yet an outright rejection of my complaint.
What I am really hoping for, of course, is a result that will mean that greater care is taken in future to prevent this sort of tragedy heppening again in the future.
Hi Rebecca,yes it is of interest. We all need to feel safe in the hands of hospitals and to be able to trust they are doing their best. Let us know what their response is, lets hope you get answers.
Di
x
I finally have an update on my complaint.
After not being able to get answers to my questions about Keith’s death from the hospital, I wrote to the Health Ombudsman to ask for an investigation. It has taken several months, but I finally got a reply today. They have said that with hindsight, Keith was showing early signs of the embolism that killed him when he talked to the doctors, and probably more could have been done that might have saved him – BUT they still don’t think that the hospital behaved inappropriately. They have added that they know this will be of little comfort to me. This makes me in many ways very sad. I had hoped that the only thing that could have come out of this was that something might have changed, some protocol could have been put in place that might have saved others – and there would have been some point to pushing for answers.
But that won’t happen – and the death rate for embolisms following abdominal and pelvic surgery will continue to be high. That is such a waste of too many lives. However, at least I feel that the Ombudsman was able to get the hospital to ask the questions that I was actually asking, rather than the ones they wanted to answer, which is a result of sorts.
Meanwhile, I would advise anyone who has had abdominal or pelvic surgery and feels breathlessness or chest pain afterwards to make the biggest fuss possible. Make sure your doctors take you seriously. Being active after surgery doesn’t necessarily prevent it – Keith was very active, took lots of walks and did everything he could for his own health because he was so pleased with the transplant and said how much he wanted to take care of his new kidney. People can be saved if they receive appropriate drugs. The rates of death from this are quite high, and show no signs of diminishing.
I would hate to think of anyone else dying after having so much hope.
Hi Rebecca,
It seems wierd that they have found that fault did lay with the doctors, yet they also felt not worth tightening up proceedures etc especially when you say the death rate is so high. Hopefully the doctor/hospital in question will tighten up proceedures anyway in view of this.
Thanks for passing on what to look out for and yes people must make a fuss if not taken seriously.
I am so sorry about all this ….
Di
x
Of course I agree with you Di. The words “not unreasonable” appear over and over again in the reply. I feel that transplant patients deserve better than “not unreasonable” care. I do hope you are right and that procedures will be tightened up anyway.
My father was diagnosed with anti Glomerular Basement Membrane Glomerulonephritis on the 15th of July 2010. I know that is hard seeing your loved ones go through something like this. his brother was a match so if he needed a transplant he could get it. he got better again at the start of 2011 but then he found out that he had cataracts as a result of being on prednisone so he got an operation to fix his eyes.
Sorry for your lost
Thank you.