Book on Kidney Donation Experience

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SammieRowley
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Joined: Tue Jan 27, 2015 3:27 pm

Book on Kidney Donation Experience

Post by SammieRowley »

Hi

I donated one of my kidneys to my sister-in-law in October 2013 and have since written and self-published a book about the experience as a whole, from the decision to donate to the operation and then the recovery. It's an honest in-depth account of what happens when you donate and I'm hoping that the book will raise awareness of the need for living kidney donors and help potential donors understand exactly what happens when you go through the donation experience. It was an amazing time for me and my sister-in-law is doing fantastically well 15 months after the operation and I am doing great too. I would do it all again in a heartbeat. I feel blessed to have been able to give my sister-in-law her life back and give my niece and nephew a healthy mum. If you're interested in reading the book it's available on Amazon (Kindle and Print), Waterstones, FeedaRead.com and other book seller websites. The title is 'You Only Need One: A Living Kidney Donation Experience' and my full name is Samantha Rowley. If you read the book, I hope you enjoy it as much as I enjoyed writing it. :D
skyeskye
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Joined: Wed Jul 01, 2015 5:36 pm

Re: Book on Kidney Donation Experience

Post by skyeskye »

Hi everyone. My husband donated kidney to sibling 10 years ago. He has had many problems since which has caused the whole family much distress. I have never found a website or anyone that could help us; all help out there seems to be for the recipient. The whole process left us bewildered. If this site is not meant for donors please let me know and I wont post again. Many thanks.
MatthewC
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Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Book on Kidney Donation Experience

Post by MatthewC »

Sammie - I donated to my brother, also in Oct 2013; I didn't write a book but I have a blog (http://diaryofakidneydonor.blogspot.co.uk/) as I have been far too busy with a building project!

Skyeskye - you are, I am sure, most welcome on here. I'm sorry your husband has had problems. Donors like him, Sammie and I are renal patients as well. You might well find much helpful information here about your husband's problems if you'd like to post again. You might also like to look at Diane Franks website (http://livingkidneydonation.co.uk/) if you haven't found it before.

Matthew
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bigbuzzard
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Re: Book on Kidney Donation Experience

Post by bigbuzzard »

Hi skyeskye

You (and your husband) are indeed very welcome here.

I'm really sorry to hear about your husband's problems. While we know that major problems for donors are rare, we know it's a risk. I've been the very lucky recipient now of two living donor transplants (both donors thriving, I believe).

If you're willing to say more about what happened, especially if there are things that others may learn from, then please do. Though obviously it's completely up to you. This is an open public forum, so anything posted here, while anonymous, is open to Google and the world.

If there's any help, support or advice that we can give here (apart from specific medical advice) we'll do our best.

Best wishes.
bb
skyeskye
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Joined: Wed Jul 01, 2015 5:36 pm

Re: Book on Kidney Donation Experience

Post by skyeskye »

MathewC and Bigbuzard, thank you so much for your replies and we will look at information provided. I can't really go into, on here, all the medical problems. The Problems arose from post-donation care. We now just 'live with it' - which is so unfair. I and our family feel so sorry for my husband, he gave someone the gift of life and will suffer for it for the rest of his. We have battled for years trying to get things resolved, but there is nothing the medical profession can do e and actually don't seem to care. Hubby is self employed and we have lost so much money having to go to hospital appointments because of this (not including annual review in this). All this is impacted by recipient whose attitude has never been, lets say grateful.
Grey
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Re: Book on Kidney Donation Experience

Post by Grey »

Unfortunately this is the real world and I know for a fact donor's are warned that in some instances, however rare, problems can occur. This information should be carefully weighed up in making the offer to donate. I am surprised to read that the clinic concerned and I quote "and actually don't seem to care. ". My experience from a recipient point of view, my wife was a donor is exactly the opposite, I can only praise the NHS and the superb care and attention we have had. If that is the case I would strongly suggest that you contact PALS and take the matter up with them. This must be a rouge person or clinic you are dealing with and if what you say is correct then it should be sorted. My wife donated, she was out of hospital in 3 days and a week or so later was driving and if you met her you would never think she had given a kidney a week earlier. I will agree that far too often recipients seem to think they are owed a transplant and in my wife's case has not had ANY AKNOWLEDGEMENT OR THANKS for her superhuman gesture. We unfortunately live in a world where too many people think the world owes them and take everything they can with no regard for where it came from. There are fortunately more people who do appreciate this life changing gift and show appropriate appreciation. Anyone thinking of donating please do so, in the vast majority of cases it goes without any problems and as a recipient can assure you it IS TRULY A LIFECHANGING SUPERHMAN GESTURE.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
DeanH
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Joined: Thu Feb 12, 2015 5:01 pm

Re: Book on Kidney Donation Experience

Post by DeanH »

Grey, I do think that you are being slightly premature and a tad unfair in critising your wife's kidney recipient for not writing already, I had a double transplant at the start of March and still do not feel ready or able to put into a letter how I feel about receiving such a life changing gift, or able to put into words my thabks to the donor family, personally I would prefer to wait until I feel able to properly explain what a difference it has made to me and my wife's life and would like to be able to explain what is has enabled me to do, to almost expect a letter right away simply is not always possible, they may be having other issues or struggling with the whole process to be able to thank your wife.
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bigbuzzard
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Re: Book on Kidney Donation Experience

Post by bigbuzzard »

Skyeskye – thanks for the reply. No need to go into any details at all. Just know that you're welcome to ask anything you like here, or just get something off your chest, whether kidney-related or not really. This is usually a very supportive and unjudgemental community.

Gratitude is a tricky thing. I know as a recipient of two living donor transplants, both donors well known to me, that it's easy to feel overwhelmed in the face of feeling as if you are expected to be seen to be infinitely grateful. Of course I am, but how do I show that to the rest of the world? There's a huge mix of feelings involved including obligation and guilt, that somebody else put themselves on the line for me. That 'guilt' might be even stronger if something had happened that caused the donor to suffer long-term problems. In my case, the first transplant deteriorated much more quickly than expected and I had to go back on to dialysis – there's guilt associated with that too: 'was there something I could have done differently?'. I do believe this is one aspect of living donation that could be better handled, so that all parties are more psychologically prepared for all possible outcomes. I know that most people who know that they do, or might one day need a transplant are incredibly grateful to everyone who makes that more possible, either by joining the Organ Donor Register or by being a living donor. Especially as a living donor, it's not just the direct recipient who has cause to feel grateful, but also everybody else who needs a transplant, because that is one more kidney being added to the transplant pool – the more there are, the better for everyone. So all donors and families of donors, living or otherwise, should know that there is a huge amount of gratitude directed their way, even though they may not see it.
Grey
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Re: Book on Kidney Donation Experience

Post by Grey »

Dean that mey be how you feel but I could not wait to contact my donor and thank her. I know she was waiting for some message and I will quote an extract from a letter I have had back. " I am so grateful for your letter. I was aware that there might not be any communication from the recipient (she had been warned that some people simply do not offer any appreciation or thanks) and so to receive your letter and a little information about your family WAS HUGE. It helps to make everything worthwhile......"

In my humble opinion it is not really about how we the recipients feel, it is more about showing appreciation to the donor as soon as possible to help them in rationalising the decision they have taken. Obviously in my case it was a living altruistic donor, but again in my opinion even if someone had suffered a tragic loss that made the donation possible it would go a long way to ease their grieving knowing that in passing their loved one has helped a deserving recipient. Anyway that is how I feel.

My standard opinion when facing different opinions in life, such as yours and mine is "just because I think differently to you about something, does not mean I or you are right, it just means we differ in opinion" So I never judge someone else's opinion and refer too them as harsh, after all neither you or I are the final arbitrator on this topic, we just have opinion's.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
wagolynn
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Re: Book on Kidney Donation Experience

Post by wagolynn »

Well said Gray.
Grey
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Re: Book on Kidney Donation Experience

Post by Grey »

I do hope young Dean does not think I am having a go at him...I am not ....just voicing a different point of view. We are all entitled to our opinions and have a right to voice them. Keep smiling everyone.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
skyeskye
Posts: 4
Joined: Wed Jul 01, 2015 5:36 pm

Re: Book on Kidney Donation Experience

Post by skyeskye »

Grey - thank you for your reply. Of course we 'weighed up' the risks, doesn't everyone who is considering live donation. However as donor knows the procedure will save a life there is NO other option but to go ahead. I am pleased your experience has been first class with NHS and that is how it should be. You have suggested in your post that if our problems have actually happened to contact PALS. Firstly, I find this comment most 'unhelpful' - why would I/we lie about such a subject and after what we have experienced all these years post - donation, this kind of attitude makes us extremely angry. Of course we contacted PALS, etc, etc. Also, we have experienced the attitude from members of NHS that is a couldn't care less attitude! The problems that have arisen due to post transplant care cannot be fixed but will affect my husband for rest of his life. Yes, almost all live donor donations are highly successful, thank goodness, however in our experience (we have been extremely patient about this) there should be much more help/advice for donors, especially when things do not go to plan. There should also be some kind of help/advice regarding the emotional side of donating, this would be good idea for recipient and donor.
Grey
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Re: Book on Kidney Donation Experience

Post by Grey »

Hi I can understand you are angry, probably under a lot of pressure and stress so it's to be expected. The intention of my post is not to question what you have said but offer some advice. So for the record, please don't be angry, it is misguided, my only intention is to help. Accept my sincerest apology for the misunderstanding.

I am very surprised that after contacting PALS you have not had a satisfactory solution, and I will try and help on this matter. I happen to know someone who works in PALS and will refer them to this thread and ask for their advice about what you should do next and relay it too you. It is a little difficult because you have not outlined the problem, but what worries me more is the lack of compassion you have experienced from the staff concerned. The " couldn't care less attitude" is simply not acceptable and not what we expect from people paid to help patients through thick and thin, so my question to the PALS person will be, what can you do about that. Who can you contact to address that attitude and have it sorted out for future reference. For the good of everyone that kind of attitude cannot be tolerated.

I personally would take it up with the hospital management at the highest level but lets see what comes of my question. Best of luck Grey




.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Book on Kidney Donation Experience

Post by Grey »

I have had some feedback already. In the event that you have not had any luck from PALS, I assume it was the PALS office at the hospital, then they suggest that you try the complaints department that should be located near to the PALS office on the site. Personally after trying that and if you don't get a good result then try contacting in writing the senior management of the hospital trust, or the "Directorate Manager Renal Transplant" who has a more direct interest in the transplant division. Good luck.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
skyeskye
Posts: 4
Joined: Wed Jul 01, 2015 5:36 pm

Re: Book on Kidney Donation Experience

Post by skyeskye »

Grey - thank you for your replies. I completely agree with you that the attitude of certain staff is unacceptable. Unfortunately the problem cannot be 'fixed' as the damage has been done. We have battled with this for so long, been passed from pillar to post, we have been told that they will learn from it and hopefully will not happen to anyone else. We have now come to the conclusion that there is no point going any further.
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