Living Kidney Donation

Altruistic kidney donations:

1st April – 31st March in each year

• 2007-8   =  6 donations
• 2008-9   = 15 donations
• 2009-10 = 15 donations
• 2010-11  = 28 donation
• 2011-12  = 34 donations
• 2012-13  = 76 donations

Since 1st April 2013 there have been 30 altruistic donations which is fantastic news.

Taking Organ Transplantation to 2020: A UK strategy has been launched by NHS Blood and Transplant and the four UK health departments.

The strategy sets the agenda for increasing organ donation and transplantation rates to world class standards over the next seven years and builds on success in increasing deceased donation rates by 50% since 2008.

One of the key aims of the strategy is to improve consent/authorisation rates to organ donation to above 80% (currently 57%). NHS Blood and Transplant believes that public attitudes will need to change if the UK is going to achieve such a shift in consent rates.

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To read the rest of the report please go to this link

Want to make a huge difference in someone’s life? Give a Kidney.

Dr. Susan Hou summed it up perfectly when she said  “I can’t bring about world peace, I can’t eliminate world hunger, but I can get one person off dialysis”. Back in 2004 Dr. Susan Hou donated one of her kidneys to someone in India. She may not have made a difference in this world, but she certainly made a difference in that persons world.

I too made the world of difference to someone’s life by giving one of my kidneys to a stranger. Best thing I have ever done in my life and probably the best thing I will ever do. Please read the links down the left of this page under “become a donor” and read about the evaluation process I went through. The “About” link top of page also gives some information regarding why I donated.

Any questions please contact me (link top right of page)

Di Franks

The Human Tissue Authority has seen a huge rise in the number of people approved to give organs to someone they do not know

Issue date: 16 May 2013

The number of altruistic donors, people giving organs to someone they do not know, approved by the Human Tissue Authority has almost trebled in the last year.

During 2012/13, the HTA approved 104 ‘non-directed’ cases, compared to 38 in 2011/12. The HTA assesses all proposed transplants to ensure donors are aware of any risks and that they haven’t been pressurised or offered any reward to donate.

To read the full report please go to the Human Tissue Authority (HTA) website here
http://www.hta.gov.uk/newsandevents/htanews.cfm/1143-Huge-rise-in-altruistic-donor-numbers–says-HTA.html

In the UK 1 in 3 kidney donations are from a live donor. On average the kidney from a live donor can last twice as long as one from a deceased person. Also the living donor has had so many health checks to make sure they and the kidney are in best possible condition.

Giving the gift of life whether after you die or before is probably the best thing you will ever do for anyone.

Please at least make sure you sign the donor register AND equally as important tell your next of kin. Too many organs are lost because next of kin veto their loved ones wishes.

What if you needed a kidney or other organ one day? Would you accept one from a deceased person? Of course you would – so why not also offer one. One day it might be your loved one that needs an organ and if noone ever signed the register ….they would die.

Upon your death you can save up to 9 peoples lives and help many more.

What an amazing legacy to leave behind for your loved ones to get comfort from.

The first altruistic kidney donation in the UK took place in 2007 and there were 3 altruistic kidney donations. Altogether up until December 2012 there have been 151 altruistic donations! That is fantastic. Well done everyone.

If you look at the picture below you will see there has been a noticeable increase in numbers each year. Will 2013 see us hitting the 200 altruistic donor mark.

(click on image to see larger version)
These are the most recent statistics and so do not appear in the
NHS organ donation annual activity report for 2011/2012

If you want to  see 2011 – 2012 stats for all transplant activity then please visit this link http://www.organdonation.nhs.uk/statistics/transplant_activity_report/

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Christmas time is just about upon us. The time of year when “giving” not only gives pleasure but we receive pleasure also when we give.

Have you considered giving the best present ever to someone – a kidney? Okay you won’t be able to do it in time for Christmas but you can start the giving process this Christmas/New Year by seriously considering giving one of your kidneys to a stranger – or even family or friend that you know needs one.

Look at the links on the top left of this page under “Become a Donor”. Read through them as it gives my pesonal account of my own donation. Step by step; test by test I say it as it was. It covers the operation and my recovery in hospital after and my recovery at home.  Read some of the links going across the top of the page for other information.

When I donated my kidney I didn’t think too much about how would I feel about the actual giving of the kidney. I knew I would feel happy I had been able to help someone but it went far deeper than that. I was quite surprised to feel a wonderful deep sense of contentment in my life knowing I had made such a huge difference to someone (and their family).   If I had another spare kidney I would not hesitate to give it to someone else.

I can’t think of a much greater gift to give someone than a second chance at life. You are also giving them back to their family as the family also suffers when a loved one is so ill.

Being on dialysis is not a picnic.  It does not replace the kidney. Dialysis is a form of Life Support. That is all.

With dialysis comes many problems. Not everyone takes to it BUT they have to as that is all that is available if they want to stay alive. That is – unless they get a kidney transplant!

So – we are a nation of givers. It is human nature to help people where we can. Read this website including comments people have given about their own donations or those waiting for a kidney. Look deep inside you – could you help save someone by giving them one of your kidneys.  Believe me, we do not need two. If we did then live kidney donation would not be allowed.  I don’t even know I only have one kidney. My life has not changed at all. Well actually it has. It has changed because donating my kidney has made me more aware of the vulnerabilities of our own bodies and it has made me take extra better care of  myself. I don’t have to take any medications though because of only having one kidney. Nothing in my life has changed except I watch what I eat a bit more. That is out of choice, not necessity.

Please consider giving the best gift of all.

God Bless
With Love to you all

Di
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Are you on the Organ Donor Register?

If so – thank you!! So many lives could be saved. What a fabulous legacy to leave behind. 

Did you know though, that no matter the fact you have signed the Organ Donor Register, the final word about donating will be with your next of kin and/or family.  Although the transplant team has the right to veto next of kin wishes, they generally do not.

So please ….. If you want to save some lives you must tell your next of kin and your family. Make sure they understand how important this is for you. That however upsetting it may seem at the time, they need to agree with your dying wish to save someone else.

I know someone who, after their loved one’s death, refused to allow the organs to be used, even though their loved one had signed the register. It came as a shock to them to find this out. A couple of days later, they  bitterly regretted their decision to refuse, but by then it was too late.

So please …. sign the Organ Donor Register  AND discuss your wishes with next of kin/family, make it clear this is something you really do want to do.

There is no guarantee that our organs will be able to be used anyway when we die. But at least by signing the Organ Donor Register we have offered.  Another reason why I am pleased I decided to donate a kidney while I was alive. At least I know I have helped one person and hopefully after my death I can help many more.

If you do decide you would like to find out more about living donation, then please read the links on the left of this page, under the heading of “become a donor”. Those links should answer many questions about living kidney donation and, who knows, it may even inspire someone to donate.

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I recently appeared on the Tonight programme “kindness of strangers” and later  on the BBC World News along with Dr. J. Lowney from matchingdonors.com to have a discussion on their organisation which was coming to the UK.

I contacted them to see if they would answer some questions that I and others had regarding their organisation and the role it had here in the UK.  They readily agreed to answer any questions I had but unfortunately, 5 week later they are still not answering any, regardless of repeated  requests. They are now ignoring me 🙂 .   Here is the (lengthy) list of questions I have put to them.  Anyone considering joining the organisation either as a donor or potential recipient may want to read these first before making a decision.  If matching donors responds to any questions I will publish them alongside the relevant question.

QUESTIONS:

The system

Paul Dooley is quoted as saying “The old system of ‘Give us your organ, we’ll decide where it goes’ no longer works. We have the ability to take our system to the UK and save their lives.”

Since the first non-directed altruistic donor was approved in 2007, the HTA have approved in total 160 donors 33 of which were approved in the first half of this year. There are also many potential donors being worked up at the moment with 30 at one transplant unit alone.

1.        Given that the altruistic donation system is very new in the UK, that the numbers of altruistic donors in the UK is increasingly very rapidly year-on-year, and also bearing in mind that the UK population, and thus the pool of potential donors, is a small fraction of that of the USA, on what basis can Paul Dooley justify his statement that our system is no longer working?

2.       Has matchingdonors.com had any legal challenges?

3.       Do all American transplant centres accept directed altruistic donors?

Patients

4.       Does your organisation inform transplant units that one of its transplant waiting list patients is registered with you?

To read more of the questions click this link
Read the rest of this entry »

Publicity was given about the USA organisation Matching Donors bringing their system to the uk. Paul Dooley from the organisation was quoted as saying

The old system of ‘Give us your organ, we’ll decide where it goes’ no longer works. We have the ability to take our system to the UK and save their lives.”

Since the first non-directed altruistic donor was approved in 2007, the HTA have approved in total 160 donors as of September 2012, 33 of those in the first half of this year alone.  There are also many potential donors being worked up at the moment with 30 at one transplant unit alone.

It is very clear that our [UK] system not only works but is increasing greatly year after year. I contacted Matching Donors and asked if they would answer some questions regarding their system and how it affects people in the UK. They readily agreed to do this.

Several people had already asked me questions about the organisation so I put a list together of questions. These questions were relating to how their organisation was run; what they offered members in the UK for the $595 membership fee and what support members and potential donors got once they had joined. These questions I sent to Matching Donors on 8th September, and await their reply.

Living Kidney Donation is very keen to work alongside Matching Donors to ensure the wellbeing of UK members.

If you want to know what is involved in donating a kidney to a stranger then check out the links on the left of this page under “become a donor”. Gives you step by step description of the evaluation process, the operation recovery in hospital and recovery at home. I say it as it s and don’t gloss over anything.

If you feel you would like to donate, then please contact your local Transplant Center to discuss with them. I will help / support anyone through this. It is good to be able to chat to someone who has been through the donation process and know they understand how you are feeling.

Di Franks

2 years since I donated my kidney. Went for annual check up (free for life) and here is the report.

We were very pleased to know that this lady is doing well two years following her altruistic donation of one of her kidneys. Her renal function remains good with a creatinine of 87 and a GFR of 61. This is in fact as good as her renal function prior to donation. Her blood pressure is good at 112/76. Her urine dipstick did not show any evidence of proteinuria. I have sent off a urine ACR for completeness today. This lady remains an active campaigner for kidney donation and we again expressed our sincere appreciateion for all her work. This lady will be back to see us again next year.

Altruistic Kidney Donation (non-directed) =  is a form of donation whereby a healthy living person is able to donate  a kidney, to someone they do not know. The donor does not have a relationship with the recipient and is not informed who the recipient will be.

Giving someone their life back and giving them back to their family by donating one of your kidneys is a most wonderful thing to do. I cannot think of a better gift to give someone than to give them a second chance at life.

If you want to know more about being a donor then please read this website. Start with the links on the left under “become a donor”. You will hear my own views on the evaluation process I went through at the Churchill Hospital, Oxford. Each stage exactly what the tests were and how I felt about them.  I take you through the operation day, my emotions and thoughts and how I felt physically afterwards. Finally my recovery both the 2 days in hospital and then when at home.

I have not glossed over anything and if there was an aspect I was not happy with, I say so. Also read other peoples comments on my posts as each person can view the donation process differently and also have different reactions during the recovery period.  At the top of this page you will find a link to “Blogs” where people have given me their story both donors and people waiting for a kidney.  The “About” page gives my thoughts on why I wanted to donate etc.

So please start reading about what it is like to be a donor by selecting from the links on the left under “Become a Donor” or start with the first one here:
http://livingkidneydonation.co.uk/altruistic-living-kidney-donor-evaluation.htm

You can also find out more about being an altruistic donor by going to these links:
1) NHSBT (NHS Blood and Transplant) non directed Altruistic donation
2) HTA (Human Tissue Authority) non directed Altruistic donation

What I d know is that given the chance I would donate a kidney again – without hesitation.

Any questions please just ask or contact me directly using the Contact form, link is top right of page.

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Di Franks

<°)))><
.“Take what you have, however little, and do your best with it.”

https://twitter.com/kidneydonation
https://www.facebook.com/LivingKidneyDonation
http://LivingKidneyDonation.co.uk

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Karen Brown was 39, happily married with two children, of 3 and 6 years old. She had also recently given up a career in London to spend more time with her children. As you can imagine her world was turned upside down. Here is Karen’s story. Her 6 year old daughter has also spoken of how she feels with her mummy being so ill. Karen’s husband, Matt, explains what life is like for him knowing the wife he adores is so ill.

Karen’s Story

Karen and her two children

I found out I had kidney failure last September, I am what is called a ‘crash lander’. It all happened completely out of the blue. I had been suffering from bad headaches for sometime, and thought my eyes looked puffy, but the doctors thought it was sinusitis. It wasn’t until they checked my blood pressure, and realised it was sky high, that they thought there was a problem, and gave me a blood test. It was that night I got the call to say that my kidneys showed they were functioning at 5%, and I needed to go straight to Brighton hospital for further tests.

Read the rest of this entry »

20 Potential Altruistic Kidney Donors

In the last week or so around 20 people have approached me asking about donating their kidney to a stranger.

WOW!

That is just so fantastic. They all were quite serious in wanting to do this having read recently all the publicity surrounding altruistic donation.  Most had already done some research and were eager for more.

If just one of those 20 ended up donating that would still be one person off dialysis and going back to having a normal life and enjoying all thing things that we take for granted.

To those 20 people and to all future potential altruistic donors – Thank you so much for wanting to help someone by giving them the greatest gift you could ever give them – their life back.

Anyone wanting to know more about becoming an altruistic donor, then please check out the links running down the left side of this page, from the top. It will tell you, from the donor perspective, about the evaluation tests, operation and recovery of being an altruistic donor.

Please feel free to contact me http://livingkidneydonation.co.uk/contact.html if you wish to ask more questions or simply want some support while going through the donation process. It is sometimes just great to be able to talk to someone who has been through the same thing.

Again to those 20 people and to everyone – the world over – who has donated or looking into donating a kidney – whether to a stranger or someone they know – a big huge Thank You!!

Di Franks

12 Altruistic Kidney Donors on the Donor Panel

A new charity has been launched 
“Give a Kidney – one’s enough”.
Dr. Chris Burns-Cox, a kidney donor himself, thought it would be a good idea to have a charity which would help promote altruistic kidney donation and also offer support to anyone who wishes to offer their kidney.

300 people a year die in the UK waiting for a kidney transplant and another 6,500 suffer the miseries of kidney failure while they are on the waiting list.

So far 88 people have found this unnacceptable and have given one of their kidneys to a total stranger.

I am one of those people and am also very honoured to be a part of the charity Give a Kidney – one’s enough and am on a panel of donors who, if asked by a potential donor, can speak with them to tell them what it was like being a donor.

To read a donor perspective of altruistic donation then please use the links on the left of this page starting with “Kidney Donation – Evaluation Begins“.

[as at November 2011 there had been 88 altruistic donors with the oldest being 82 years old and youngest 25 years old]

In the UK between 1 April 2010 and 31 March 2011:

• 3,740 organ transplants were carried out, thanks to the generosity of 2,055 donors.
• 1,008 lives were saved in the UK through a heart, lung, liver or combined heart/lungs, liver/kidney, liver/pancreas or heart/kidney transplant.
• 2,732 patients’ lives were dramatically improved by a kidney or pancreas transplant, 156 of whom received a combined kidney/pancreas transplant.
• A further 3,564 people had their sight restored through a cornea transplant.
• A record number of 567 non-heartbeating donor kidney transplants took place and accounted for one in five of all kidney transplants.
• 1,045 living donor kidney transplants were carried out accounting for more than a third of all kidney transplants. ‘Non-directed’ living donor transplants (also known as altruistic donor transplants) and paired and pooled donations contributed more than 60 kidney transplants between them.
• Almost 675,000 more people pledged to help others after their death by registering their wishes on the NHS Organ Donor Register, bringing the total to 17,751,795 (March 2011).

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Altruistic Living Kidney Donation

Have you ever thought of giving your kidney to someone – when you are still living? It is called Living Kidney Donation. You can donate to family, friend, work colleage or someone you just heard about.

You can also donate to a total stranger. Someone you have never met, never heard of and never likely to know much if anything about. This is called Altruistic (non-directed) donation.

If you would like to know more about the procedure to become a living donor then please check out the links on the left of this page starting with Kidney Donor Evaluation begins. If you follow through the posts it will take you through the whole evaluation process including getting HTA permission; finding a recipient; the operation and recovery process. You can also learn more by clicking on the links at the top of the page including why I became an altruistic living donor.

 “The Choice” with Michael Buerk.

This can now be listened to on BBC iplayer  BBC iplayer The Choice Di Franks

One to one chat with – Di Franks –  about my choice to altruistically donate a kidney and the consequences of that choice. Produced by Dawn Bryan this series has been aired for several years now and is hugely popular.

I hope some people will be inspired to consider donating themselves. It is truly a far greater experience than I ever imagined it would be went far beyond the donation itself – and if I could I would donate all over again.

If anyone has any questions about donation, please feel free to either comment on this post or to contact me  via the contact form, link top of page.

Di Franks

Altruistic donation was only legalised in the UK in late 2006. Initially no one came forward. Then, in 2007-08, 10 people did so. That rose to 15 the next year, then to 23, then to 40 in 2010-11.

Latest statistics show there have been 88 volunteers who have ranged from those in their mid-20s to people in their mid-70s, with an average age of 52. Slightly more men than women do it. Quite a few of them are doctors or nurses, often retired.

I think it so wonderful that altrustic donation is on the rise so much in the UK. When I went for my evaluation in Feb 2009 only 32 people had donated so far. Now it is 88 in total (probably more now). This year should see it reach 100?

I know two people who are virtually at the point of getting approval and one who is donating soon.

Anyone thinking of donating, whether to someone you know or to a stranger, then read my blog so you understand the donor process a bit more, do some research and if possible get to speak to donors. I just know that if I could, I would not hesitate to donate again. I was not expecting or wanting to get anything out of donating, but I did. Each time I think of the recipient, I get a wonderful warm feeling inside me knowing there is a family out there who now has a second chance at life. I have no regrets at all about donating and if I can give support to anyone else donating, then I will.

Di

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A full in depth account of being a Living Kidney Donor can be found here. From my decision to donate, risks of living with one kidney to the risks of donating a kidney. My emotions along the way and why I donated. The evaluation tests involved in being a living kidney donor and what I thought of them! The frustrations and sadness and finally joy of finding a recipient for my kidney. The final pre-donation tests that gave me a sleepless night or two right up until the day before the kidney operation! Then the day of the operation to remove my kidney together with recovery after the kidney donation, in hospital as well as back home.

A lot of useful advice is also given in the comments section of the post, so they are worth reading also.

Please either scroll to the bottom of this page or use the links on the left to read about the different stages of kidney donation. The links across the top of the page also give an insight into my reasons for donating a kidney plus some useful links on the subject.

If anyone has any questions regarding the donation process or how I felt about any aspect of it, then please do post a comment or if you prefer contact me via the contact page (link at top of page).

One thing I will say is that if I could do this all over again I would without hesitation.
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Having donated a kidney to a stranger, even though was a while ago, word got around and I was asked by a newspaper to do an article. The article was going to appear regardless of whether I participated or not, so with the hospitals permission, I did and was also allowed to disclose which hospital it was at.  So I would now like to publicly thank so much all the medical and non medical staff in the Living Donor Programme at the Churchill Hospital, Oxford. They are truly amazing and wonderful people. It has been an honour and privilege to have got to know them and to have been part of the team that enabled this donation to successfully go ahead. I have nothing but praise for everyone there. Over a long period of time I got to see them at work – speaking with the patients and of course evaluating me for the kidney donation.  There was always a smile and a cheery face, no matter how tired any of them were. People were made to feel welcome and I certainly felt relaxed and comfortable during all my visits there.

I am getting the praise for donating a kidney, but without the excellent and dedicated team at the Churchill Hospital, my wish to do this would not have been possible.  They have dedicated their lives to helping people and watching them at work, it is all too obvious just how much they really do care about their patients and the work they do.

I have nothing but admiration for them all and my thanks goes out to each and every person working there. There were also  many people that worked behind the scenes, both medical and non-medical, that I never got to meet. To them I also give my deepest thanks.

It takes a team of people to make this kidney donation happen and the Churchill Hospital have an absolutely fantastic team.  I know I have come away from this experience with memories I will cherish. My life has also been enriched by numerous people I came across – patients as well as hospital staff.

Thank you everyone involved in the donation, I will never forget any of you. We are so lucky to have people like you in this world. I have nothing but praise for you all and for the NHS.

With many thanks
~ Di Franks ~

Evaluation process to be a Living Kidney Donor – finding a recipient – laparascopic surgery to remove kidney – my recovery

Even though the process was not without its frustrations and last minute blips – I would not hesitate to donate a kidney all over again if I could.
For anyone considering donating a kidney, whether to a relative or friend or to a stranger, the majority of this blog would apply. I have been as honest as I can and not just put a glossy cover on it all.  The events are as they happened and my feelings and thoughts at the time. I hope this blog will enlighten some people as to the process of donating a kidney. It has been a great learning experience for myself as well. Spending so much time with people who have kidney problems and speaking to patients on dialysis or just having had a transplant, and speaking with their families ….. it has opened my eyes even more to the fact more organ donors are needed.  There was nothing in my evaluation or the operation or recovery process that put me off having donated.

Through this journey I have met people on dialysis and they are not living a life, they are surviving a life. Dialysis is life support. Without it they will die – with it they are alive but the quality of life for them and their families is not the sort of life anyone should have to live. They do for years.  Once I knew it was possible to give someone and their family back their life it was just something that, God willing,  I was determined to do.

I also want to thank everyone working at the transplant unit. Everyone was great and made this whole experience good. There was always a smile and more than that, everyone had time for me. I was never made to feel rushed. When it came time for the operation itself I was made to feel very relaxed and the after care was brilliant.

Please scroll down to read my account of being a kidney donor. The first posts are at the bottom of the blog, the latest just below this posting.

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My Recovery at Home

I was allowed home 2 days after the operation. The journey home was okay. Couldn’t really avoid all the bumps and potholes in the road so had to support my abdomen during the journey. It was good to be home. Own bed, own bathroom etc. Couldn’t keep my eyes open so had not been home for long before went up to bed. Now of course, my bed does not raise up like the hospital one. So with great effort I got onto the bed at a sort of an angle and then couldn’t move, lol. The pain in my abdomen was intense. Oh well – I just stayed there on the bed sort of laying across it – and went to sleep. Woke about 5am feeling refreshed and wanting the bathroom, but quite a battle to get out of bed. took around 10 minutes trying to work out the least painful way.

Decided that the next night I would sleep with lots of pillows behind me so my upper half is already raised, just like the hospital bed was. It would then be much easier getting in and out of bed as would not have to use my abdominal muscles as much.

In myself I felt very well. Still bloated which was uncomfortable rather than anything else so hopefully the extra 4 kilos would go soon. I got tired very very quickly. In fact I had only been up for around 3 hours and was walking back from the kitchen with a cup of tea and almost dropped it as I found my eyes closing as I walked. The tiredness just came out the blue!! I know I was told I would feel tired, but I was not sure if that meant bodily tired i.e. no energy, or tired in wanting to go to sleep. Now I know. I had to go back upstairs and get some sleep. I arranged the pillows so they were like a backrest. I have a memory foam mattress which is bliss. I could get into bed a lot easier now with little pain. I got a good hours sleep and woke refreshed. Around 3pm the same thing happened and I found my eyes just would not stay open, so got another hours sleep. I must say the first four or five days was like this. Suddenly feeling sleepy when I had only been up a few hours. I didn’t fight it as I knew my body needed the rest. I was also going up to bed around 7pm or 8pm in the evenings. I actually felt more comfortable laying propped up in bed than sitting in the chair downstairs, which squashed my abdomen up a bit and was uncomfortable. I had very good night sleep for the first week, most nights not waking at all until the morning. Pre operation I would wake about 3 or 4 times needing the bathroom. I also found that sleeping with my upper half propped up I could breathe a lot easier as well which I am sure aided a good night sleep. In fact I have continued to sleep propped up and find it much better than laying flat in bed. When I have saved the money I may just invest in a bed where I can raise the back up. I am surprised at the difference in quality of sleep I get this way.

The first week was obviously the hardest as I was not allowed to do much and I felt tired so quickly throughout the day and there was a bit of pain when I walked or used my lower abdomen. For some reason the first couple of days I forgot about the pain medication. Duh! After that I took it and made sure I took enough. Although I still had some pain, it was not troublesome. In fact I was quite pleased I had a little bit of pain as it reminded me to take things easy. I enjoyed being spoilt and looked after the first week!

Some people get no pain at all. I believe the only reason I got pain was because I am overweight and the pressure of a tummy “overhang” on the incision area coupled with gravity pulling down on it when I walked, just aggravated everything! If you picture walking with a bowl of jelly ….?? Yup I think you have the picture!  If I held in my abdomen muscles which then supported the incision area, then I had no pain at all when I walked. Of course remembering to take the pain medication would have helped!

Once 10 days had passed then I noticed a quicker improvement. I was not sleepy during the day any more, although I did physically get tired. It was quite some time before energy levels restored themselves. Incisions were healing nicely and everything was just great.

I also heard that the recipient was doing excellently well! That is the best news of all. Wonderful!

Recovery continued and things are great.  It has been a while since the evaluation finished in October 2009  and some time since kidney donation, so I hope I have remembered everything, I did make notes at the time but not always. Anyway I hope this blog gives a good insight into the process of becoming an Living  kidney donor and the actual donation process itself. I know if I had another spare kidney I would do it all again without hesitation.

After Kidney Removal – Recovery in Hospital

Same day as operation:
My bed in the transplant ward was going to be ready at 5pm so my family had been told to give it until 6pm to allow me to be settled etc. It was actually 6.15pm that we heard my bed was ready and as I was wheeled into the ward I saw my family at the nurses’ desk and called out a “Yoo Hoo” and gave them a big wave. They expected me to be half asleep and out of it I think, and they almost fell on the floor so see me so awake, happy and smiling … hahaha ….I was taken to my room. Very nice room. Just two beds, I was by the window overlooking the little garden area which had a bird table in it. Shared the room with another lady (who had a kidney/pancreas transplant) and we had our own bathroom. My family were told that I needed to be settled in and it would be a little while so to go for a coffee and come back in say an hour.

I was helped off the trolley into my bed. I couldn’t quite manage this on my own as for some reason my right leg would not bend properly and had not much muscle power. This did by the next day correct itself. The first night I was going to be regularly monitored. Blood pressure sleeve was put on and automatically every two hours it would inflate and do its stuff! Gone are the days when the nurse had to come and do it. I was constantly impressed by all the advancements over the years since I had last visited someone or been in hospital myself. I had boot wraps on my calves over the thromboses stockings. They were wired up to some sort of pump and alternatively each one would inflate and deflate so massaging my calves and thus helping to prevent any blood clots (blood clots are rare, but can happen). A “clip” was put on my index finger which was wired up to a heart monitor. I had a drip in my left arm giving me fluids . In my right arm was another drip which was for the pain meds…

The nurse showed me how to use the pain med control. Each press of the button gave me one dose of painkiller. There was a little machine next to the bed that showed how many doses I had. Once I had the maximum amount then I could not use it again for 5 minutes. The machine gave me all the information regarding this. So even though I could self medicate the pain meds, I could not overdose on them. I had a buzzer if I needed to call a nurse and another control for the bed (to raise and lower the head or foot end etc).  The hospital bed was beautifully comfortable, wow .. plenty of support yet you sunk into it and you felt like it wrapped around you, rather like a memory foam mattress. It really was very good.  Pillows too … and no crinkly waterproof covers!! Shows how long ago it was that I was last an in patient! You also had the control that raised or lowered the different parts of the bed. Had fun playing with that later until I dropped the control on the floor and had to embarassingly buz for the nurse to come and retrieve it for me – one look from him as to the position I had got the bed in caused us both to laugh. Believe me, it hurts when you laugh! The table next to me had a jug of water. I had to drink quite a bit of water each day and the amount was monitored and then compared to the urine output in the bag attached to the catheter. Next to the bed was a swivel arm on which was a TV and telephone.

 Once settled my family came and stayed for about an hour. They got me a couple of magazines. They also got me a TV card. £7 for 3 days – quite expensive but well worth it but thank goodness I was not in for a fortnight, unless there was a discount for longer periods. My son set it all up and activated the card. I must say it was great having this TV (with headphones if required), which also had internet and telephone. I Did not make any phone calls during my stay as it was quite expensive to make a call and even for a person to ring you on it – but once the card was activated apparently it automatically sent the number of the phone to my contacts (presumably the numbers I had entered on the form I completed when I was admitted?). The phone rang me later with an automated message to say it had informed my contacts of this phone number. Wow!! I was constantly being surprised. (I later found out that it was very expensive for people to phone in on that number, so advice from me is do not use the bedside TV/phone to phone anyone or for them to phone you. Use a cell phone or ask the nurse for the general ward phone).

A lady from the kitchen came to see what I would like to eat and I chose chicken and leak pie. When it came to be honest I was not really that hungry. The nurse said she could get me a “snack box” if I preferred. I didn’t actually know what that was but it sounded good, so yes! …. I had a choice of sandwich and had ham, then also in the box was an apple, bag of crisps, a snack bar, small drink of juice – can’t remember what else. I ate the sandwich and had the juice and the rest I saved and snacked on them during the night as I got rather peckish then.

Later in the evening the lady in the bed next to me had a bit of a setback and had to be taken to ICU. It was rather upsetting to witness . I believe she was okay though. Next day another lady came to share the room. They both had been given kidney/pancreas transplants. The first night I did not sleep much at all. What with the blood pressure going off every couple hours, which to be honest I found quite uncomfortable when it was doing it. When it reached maximum pressure my chubby arms really felt pinched. Then the bleeps from the heart rate monitor going off periodically and the foot compression pump thing. If I bent my left arm another monitor would start bleeping and a nurse would have to come and reset it. All sorts of little noises and things which I was just not used to. As I would doze off one of them would fire up and make me jump. I was tired but ended up deciding I would put on the headphones, watch TV and maybe would fall asleep in front of that. It didn’t matter really that I was kept awake, I was very comfy and the transplant ward was very quiet. I was quite content just laying there resting. I didn’t have any pain unless I moved then it was where the bikini line incision was to remove the kidney. I tried the pain med and it worked like a dream. Within a very short time (30 seconds or so) the pain was dulled and had I clicked again it would have totally gone. As I rarely moved though, I didn’t bother with the pain med. Also it did make me feel a little light headed which I was not keen on.

I had some discomfort at the back of my right shoulder that I felt each time I breathed in. Again this was normal. To enable the surgeons to rummage around inside me they puff me up with Carbon Dioxide, sometimes a little of the gas gets trapped up around the shoulders and can take a couple days or so to go. Bit of a nuisance more than anything else. Towards the end of the night I was actually getting used to the boots inflating and at times was not aware they had so would actually focus my attention on them to make sure they were still working! I am just so very thankful that there are all these machines and pieces of equipment available to monitor me and help keep me safe. It was very reassuring in fact. The only time a nurse came was to take my temperature (or turn off the buzzer if I bent my left arm – lol!). I had my TV to watch (with headphones so no one else was disturbed). I think I also found it a bit hard to sleep as I was still on a high knowing that by now someone else had a working kidney. How wonderful is that. Doctors, nurses, surgeons, medical, non medical personnel – everyone on the two teams are just absolutely amazing to enable this to happen. I am in awe of them all. I did get to sleep periodically which was fine.

Day after operation:
Various people popped in to see me the next morning. I lost track of names I am afraid as most people I had not seen before and they said who they were before I could take it in. Everyone was just so lovely. Always smiling and a cheery hello. Thought I would use the internet and pop a few emails off. Nearly got as far as sending then got the black screen! lol. The whole screen froze and could not access internet or TV. Shortly after, the co-ordinator came in to see how I was. We had a good chat and I just mentioned the TV was not working now and why. She was brilliant! Got straight onto patientline and they rebooted there and then and I was back in business though have to admit I didn’t try to use the internet again – just in case.

A lady came and asked me what I would like for breakfast. I chose weetabix followed by toast and marmalade. I really enjoyed it. Long time since I have had toast and marmalade, in fact I am having it at home each day now I so enjoyed it.

A nurse came and said it was time for me to get out of bed. Not as easy as it sounded! Just laying in bed I felt fine. I did not feel ill (after anaesthetic etc), or feel any pain in fact I felt totally relaxed and comfortable. I hardly used any of the pain meds as I didn’t need them. When I did (mainly just testing how well it worked really), it worked but I also felt a bit light headed if I moved my head. So I didn’t use it much. Once I wanted to get higher up the bed and it did hurt in my lower abdomen area to do this, so a click or two on the pain med control and with slight discomfort I could then move up the bed. More clicks and there would have been no discomfort I am sure. Trying to get out of bed though was painful. You don’t realise how often you use your lower abdomen until it hurts! I was a wimp and laid back on the bed grinning sheepishly at the nurse as I had given up so quickly!

It hurt a lot around the lower abdomen where the incision to remove the kidney was made. So the nurse said to use more pain meds and get rid of the pain and we would try again shortly. I clicked the pain med button until I got to maximum dose and very quickly the pain went. Let’s have another go. The nurse stood next to me with his arm out in case I needed support. I held on to it and in one courageous effort hiked myself out of the bed …. oh boy! As soon as I was upright I felt so dizzy and light headed, it was horrible, I thought I would pass out. I steadied myself, and said I felt yuk and could he help me to the chair. Luckily it was only next to the bed so a couple of steps and I sat down in the chair. I felt not very nice at all (polite way of putting it). No pain though! lol. My nurse looked most concerned and asked if I was okay. I told him I just wanted to sit there and do nothing, but I was fine. He said he would come back shortly. Another nurse came in to change my urine bag which was nearly full. I turned to say hello to her and my head nearly span off my neck, lol. Oh I don’t make a good patient, that’s for sure. The dizzy feeling made me feel sick and I said that I thought I would be. She quickly got me a sick pan and I retched twice but that was all. I felt sure it was the fact I did the pain meds too quickly on top of the fact I had been laying down for over 24 hours. I just sat in the chair and closed my eyes and waiting for it all to pass.

Couple hours later lunch came, but I said I did not feel like anything. I was feeling not so bad now, but still felt “delicate”. The nurse said I had to eat as I had to keep my body going, it had to heal and get better and it needed food to do that. Very sensible advice, so I did have some food. I have to say, I did feel a lot better after that and very quickly got back to normal. So maybe lack of food also contributed. I still didn’t like the effect on the head of the pain meds though, it made me feel very dizzy when I moved my head, not very nice. The nurse said she would give me tablets instead. The drip was removed and the canula was closed off but not removed, just in case it was needed again. I was given pain tablets periodically. I was also given a dose of laxative! I was offered some the night before and I refused (mistake!) as I did not want to be suddenly caught out. No worries on that account, you certainly do get constipated which can be quite uncomfortable and the laxative is very welcome!

My weight when I came into the hospital was 89 KG … having an operation – then the fluid drip and all the water I had to drink does bloat you. Most people there got bloated. In 24 hours I went from 89KG to 93KG!! quite an increase. My hands were noticeably puffy I also felt bloated in the body. Fluids have to be got into body and they need to give them to me via the drip until they are totally sure I am drinking enough myself and that my body is processing it okay etc. I had to drink quite a bit of water which was fine as I normally would drink 1.5-2litres of water each day anyway. A doctor came to check me over and I mentioned the bloating. He suggested one more drip bag after the one I was finishing then to discontinue.

It was late afternoon now and I was drinking plenty of water and my urine output was fine and the nurse agreed to remove the fluid drip at the end of that bag rather than give me another one. She left the canula in though in case it was needed again. She wanted to remove the catheter but agreed to leave it until the morning. I was just worried that with the incision pain I would find it hard to get out of bed to go to the loo in the night and would have an accident.

Evening meal was really enjoyable. I had mushroom soup followed by chicken and mushroom casserole. Some orange juice and then a small tub of ice cream.

My family came and because I was no longer on the drips I was more mobile so Matthew went and got a wheelchair and they took me out into the little garden. Even at 6.15pm it was hot out there. We had a lovely hour in the fresh air. It really was a glorious day. The garden was just outside the window to my room and the nurse was in there and saw me through the slatted blinds and peered out and gave a wave ….

Just a few minutes earlier I had been telling my family how the nurse from recovery did say she was going to pop in to say hello at the end of her shift, but I think she had forgotten as it was now gone 7pm. Of course she hadn’t forgotten! She turned up and I was so chuffed she had not forgotten. We had a good hug and chat. I will miss her. After a long and no doubt tiring day, she still came to see me. How wonderful was that.

My son wheeled me back and my family left and I got settled in the chair for the evening. It was lovely not having a drip in each arm as I could move around without getting tied in knots or setting buzzers off. No more blood pressure sleeve or the inflatable boots! I watched Britain’s Got Talent then got into bed. I slept very well even though woke a couple of times when had temp checked by a nurse.

2nd day after operation and going home!:
Getting out of bed painful again but I did manage it on my own. Had the catheter removed but a “dish” was left in the bathroom for me to pee into so they could measure how much I was getting rid of. I also had a bowel movement. That was good as believe me, one of the main drawbacks is not having one! Had my weetabix and toast and marmalade for breakfast. I used to have that as a child sometimes which perhaps is why I am now so fond of it again. Someone came and checked my wounds. The top three keyholes had a lot of bruising around them. The guy said when they put the drain in there was a bit of a discharge. I imagine the drain went in immediately after the op and was removed before I came around as I don’t remember any drain being in me. But he was happy with the wounds. Just said to keep an eye on the bruising and to regularly check on them. I had large waterproof breathable plasters on them, so as long as no extra discharge that was fine. The nurse took some more bloods and said they will be sent straight away for testing and if all okay I can be discharged later that day. Probably early afternoon. The pharmacist came and went over with me the medication I would be sent home with. There would be panadol and tramadol for pain relief and lactulose and senna to help with constipation. She would prepare them so they were ready and waiting for me on discharge.

I was then advised by a nurse that they would move me to the Renal unit just up the corridor. Someone had just had a transplant and they were male, so the nurses had to shuffle people around a bit. I would go to Renal. The lady with me who would be in for around 10 days plus would go to another room in the transplant unit and then our room would become a male only room …. I collected all my belongings and then the nurse said to stay until after lunch. Have lunch in my room, then if I didn’t mind not having a bed I could spend the rest of the time in either the Transplant Day Room or the Renal Day room or in the garden. If the blood tests came back okay I could then go home. If for any reason they didn’t then I would have to be officially transferred to renal and stay there. Well that suited me great. I have to be honest and there was a huge difference between the Transplant Ward and the Renal Ward.

Lunch was lovely, again. Couldn’t fault them on the food. The transplant day room was full so I went into the garden for a while. While I was there two patients came, pushed by their relatives and spent some time in the garden chatting with me. They were both resident at the hospital and with failed transplants behind them were back on dialysis.

It was late afternoon now and I wondered when my blood results would come back. I went into Transplant and asked at the nurses desk. They checked and not ready yet, but should be soon. The nurse came and found me in the day room and yes, blood results all okay I could go home. My discharge papers would be done and wouldn’t be long now. I telephoned my family to come and collect me. I was given my bag of medication and discharge form. I thanked everyone for taking such great care of me. I didn’t bother getting changed into day clothes. Apart from the fact I was still very bloated, I knew getting dressed would not be that easy a task. Also what was the point, I would only change back into nightclothes as soon as I got home. I quite happily left the hospital and walked through the car park in nightdress and dressing gown and slippers.

Was good to be home!

Recovery Room after operation to remove kidney

Next thing I could hear a voice saying my name and asking me to wake up. It is strange but you can hear the voice perfectly but for a short while you can’t move or speak. It was not that I was even trying to. I was just listening to this voice but not reacting to it yet. I didn’t even try to open my eyes, I was sort of getting my bearings and remembering where I was. For a second I was confused and wondered why I had to wake up, why had I been asleep? I thought it sounded like the operation was over, yet I had only just gone down to theatre! Of course I soon twigged that it was indeed all over. For some reason I was totally surprised by the lack of “lost time”. How wonderful though. One minute feeling woozy, then next minute it is all over and I am back awake.  Sounds a bit crazy, but I sort of felt I had missed out on the best bit! I would have loved to have watched the operation and having lost a few hours seemed so strange as literally I felt like I had one minute said how woozy I felt and the very next second was being asked to wake up … with no awareness at all of the time lapse between, it was as though the wakening immediately followed the woozyness.

I felt fine in the recovery room where you are expected to stay about a couple of hours and they keep an eye on your stats etc to make sure everything is okay before taking you to the ward. I was told the operation had started at 9.30am and was finished at 12.45pm, so just over three hours. I forget actually what the time was when I came around, but I was in no pain at all.  I was offered an oxygen mask but preferred the nose tube, which only just sits inside the nostrils. It doesn’t go right up your nose and into your lungs which I had previously thought. Duh! Oxygen is pumped through which aids recovery and certainly I felt I was breathing a lot better than I normally did. I felt slightly light headed, but not unpleasantly so and a very dry mouth. I anticipated this as had been under anaesthetic before and had both those feelings before – water seemed to be the cure back then and so I asked for a drink of water which I was given. Head cleared immediately and I felt fine and dry mouth went. Even though you are given fluids intraveneously you do get dehydrated, at least I do and taking a drink of water works wonders.

Recovery unit were waiting for a bed to be prepared for me in the Transplant unit but there was a delay with the discharge of the previous patient I believe, so I was actually in recovery for around 5 hours.   The nurse who stayed with me for best part of that time was great. We had a good laugh together and chat about all sorts of things. She said they had been discussing why someone would do what I did and she couldn’t get her head around why I had donated to a stranger and even explaining it as best I could, she was still a bit “confused” by it all. I can understand that perfectly. Another nurse asked me to explain exactly what altruistic was so I explained. She said that her husband donates bone marrow and had done so 4 times! Wow.  She said it was very painful for him to do but each time of course a life was saved.  What a courageous man. There are some truly remarkable people in this world.  I was offered a cup of tea and while thinking “did I or didn’t I feel like one” – the offer of some biscuits was made. Well – only one answer to that – Yes Please! I suddenly felt really hungry and did I enjoy those biscuits and that cup of tea.  I know the British are sometimes mocked for our love of a cup of tea but I have to say they can mock away all they like – I love my cup of tea, and that day it was the best cup of tea I have ever had! I was beginning to feel rather spoiled. A companion to keep me company for all those hours – cups of tea and biscuits – I have nothing but the highest praise for the NHS and the many many people I have had contact with over the months.

From what I could see there was only one other person in Recovery, next to me. He was still a bit “out of it”. 

My main recovery nurse said when she finished her shift the next day she would come and find me to see how I was. I would look forward to that. She had made my time in recovery go quickly and was very friendly and kind – it takes a very special caring person to become a nurse  and my brief stay in hospital brought me into contact with many very special people who enriched my life more than they will know. 

I was taken up to the Transplant ward around 6.15pm.

Laparascopic Nephrectomy  (Keyhole surgery)

Our journey to the hospital was a hoot. For the first time ever  we missed the turning off the dual carriageway.  Drove on to the next turn off … missed it!! I was not driving. I was sitting in the back keeping my lips very firmly glued together, taking slow deep breaths and Praying!  You see, men go on about how much women talk, but today, it was because two men were talking non stop that between them they allowed two turnings to be missed!! That would not have happened had I been driving and even if I had been talking as well, because we women all know, we are experts at multi-tasking! hee …. Had to laugh though at the reason why we missed not one, but two turnings! Today was not the day to get lost, be late or end up stressed.  A few minutes later and iphone to the rescue with its built in sat nav and my son got the directions –  and we got back on track! We did eventually get to the hospital about 10 minutes late instead of 15 minutes early as planned. I had to laugh. No way could I see anything but the funny side of this. Right up until the last minute these little things were being sent to “try” me. At long last though, I had learned patience and had a bit more Faith!

We went to Day Surgery and I filled in a basic form with personal details, next of kin, telephone numbers etc. A nurse took me through to another room and into a cubicle – my family was allowed to come and wait with me which was nice as I was now into  unknown territory a bit. I could have been quite nervous at this point, but I was not. Here I knew everything was out of my hands and my total Faith in the transplant team and God was all I needed now.

I was weighed. had name bands put on both wrists having confirmed my name, date of birth and address.

At this stage my family went back to the Day Surgery room to wait. They could have stayed with me, but at this stage I preferred to have them wait outside. I felt it was not really fair on them to put them through watching me being injected and that sort of stuff. I would see them again before the op. I was given some tablets and a heparin injection. My blood when originally tested for clotting, clotted very well, so the heparin will help to thin it slightly so as to help stop blood clots from forming. The nurse measured around my calf as I was to wear anti thrombosis socks. She asked me to get changed into the hospital robe. Why is it that the ties that do up around the buttock area are always the ones that are broken, so you walk down the passage with with your bum sticking out! lol  The anaesthetist came and said hello. Checked the forms and got my weight. We had a little chat and off he went.

I then tried to put the stockings on the nurse gave me. They are special ones that help stop blood clots forming. Oh my!!! They were so tight I could hardly stretch them to get them over my toes let alone up my calf and over my knee!  Took all my effort to stretch it partly open. I managed to get the first one on, but not without grunting, groaning and generally going red in the face and feeling exhausted and throwing a mini tantrum – lol!!
…. to read more about my operation – click here

Sorting out last minute hitches i.e. Heart ultrasound

I had to wait a few days before an appointment was given to me. Before I heard, I emailed my co-ordinator a couple of times, flapping around a bit with meaningless questions! lol … Finally the ultrasound department rang me with an appointment for 2 days before the operation. I emailed my co-ordinator to tell her, although I am sure she would have already been told. I also asked when we would get the results? Could I come straight over to her department and sit and wait for them? She responded saying she was not sure if they would give me the results straight away but she had given the anaesthetist my phone number so he could ring me asap once he heard.

The anaesthetist actually telephoned me that evening to put my mind at rest. He reassured me that there was nothing major wrong with my heart at all, that he was just a very very thorough person and wanted absolutely everything covered. I was not to worry. I very much appreciated not only his phone call which did put my mind totally at rest over this, but I very much appreciated him as well. I had 120%+ faith in the whole transplant team. If I was not, I would not be doing this. I was really more concerned for the recipient and how they would feel should the operation have to be postponed until this “wiggle” was sorted. It was the time scale I think that got me anxious. Had all this happened with plenty of time to spare, then it would have been just one more test I had to have. But only 2 days from the operation was not leaving much time to spare should any further tests be required.
click here to read more about the last minute hitch!

 Living Donor Pre Assessment Clinic including final meeting with surgeon, anaesthetist, pharmacist and Transplant co-ordinator.

By law you have to have some medical checks done within 2 weeks prior to the operation. This is to ensure that you are fit and healthy just prior to the operation. Some of the evaluation tests were done a few months ago, so up to date ones would be required. 

I arrived early in the morning at the hospital, knowing I would be there most of the day. Here is a list (as presented to me at the hospital) as to what the day would hold. I was at the hospital for around 5 hours and the following took place but not necessarily in this order:

Tests I had done:
1. Blood and urine samples (they took 20 tubes of blood! yes .. 20!)
2. MRSA swab (gave me a loooong q-tip I had to wipe the inside of my nose with)
3. Chest X-ray
4. ECG

I was seen by:
1. Consultant Surgeon
2. Anaesthetist
3. Pharmacist
4. Transplant Co-ordinator

1. Consultant Surgeon:
My Consultant Surgeon explained that he would not be available to do the operation.  There would be two other surgeons. He told me a bit about them. I was a little unsettled about this, as familiarity of people/faces goes towards a relaxing atmosphere and I felt I knew my current  Surgeon and felt very relaxed in his company. But then I thought I am going to be out of it anyway under anaesthetic, so won’t really matter, so I was okay with that.

The surgeon went through the procedure from admission to after the operation. He drew a picture showing where the incisions would be and why. There would be a small incision just above the belly button, through this the camera would go.  Two more would placed to the right of the camera incision – one just under the rib cage and the other same distance below the camera one. Through those two the surgical instruments would go. My surgeon comically called them “chopsticks”. Another small incision would go to the right of the one just under the rib cage. Through this incision an instrument would go that would move the liver out of the way which is very close to the right kidney. Those four small incisions would be around 1-2cms (the one above the belly button actually ended up around 4cms the others were very small though). The final incision is along the bikini line and would be around 6 inches. It is through that the kidney is extracted.  He also explained that it would be hard to move around in my abdomen as not much room, so they inflate me like a large balloon with carbon dioxide. An after effect of this could be that some gas could escape up into the shoulder blade area and afterwards cause some discomfort for a few days (it did! lol).
Read the rest of this entry »

HTA approval given to donate a kidney – Finding a recipient

My transplant coordinator asked if there were any dates I may not be available for the operation and when was best for me. Once I was registered at UK Transplant things could happen quite quickly so it was important I was not registered at until we were ready. I had a couple of dates that I wanted to avoid otherwise a clear calendar. My family were fine for things to proceed also. My details were then registered at UK Transplant.

The recipient is selected for blood type matching, tissue match, age, length of time on waiting list and various other medical / non medical factors, all of which are there to make the system as fair as possible and also to select the best match to reduce any chance of rejection.

Do not think that once you get to the stage of HTA approval that everything will be straightforward.  It may not be. It was not for me. I made the mistake of assuming it would all now be plain sailing but we still had a few hurdles to get over and it was quite an emotional time for me.
Read the rest of this entry – finding a recipient

It has been  some time since I posted re my final evaluation test, the CT Scan (October 2009). Following that I got HTA approval and I donated my kidney.  Here is an account of that and the operation and my recovery.  There is quite a lot to comment on so I will do it in separate posts. It may take a couple of days to fully post.

Independent Assessor Report and HTA (Human Tissue Authority) approval to donate my kidney.

My last and final evaluation test was the CT Scan in October 2009. That all went well and an appointment was made for me to see the Independent Assessor (IA). The IA is totally separate from the medical teams that have dealt with me, he acts as the HTA (Human Tissue Authority) representative and sends a report to the HTA for approval.
read more about the Independent Assessor Interview

Following several emails asking why I have stopped the evaluation process I just want to say it didn’t stop, I just stopped posting about it back in October as it was important to keep the confidentiality of recipient and donor.  I will post again after several months have passed when I will describe the rest of the evaluation and the donation – in the meantime please scroll down to the bottom of the home page of this blog to read the evaluation process from the start.  
EDIT: I took up posting again and you will find the full account. Links on the left or go to home page and scroll to the bottom to read from the start.
There are also plenty of good (I hope) links and pages on this blog to offer information regarding kidney donation.

If anyone is considering becoming a living donor and would like any information from a donors perspective then please get in contact with me via the contact page or just post a comment and I will get back to you.

Anyone wanting to donate, either non-directed or to a known person and would like some support from someone who has donated then please contact me via the contact form.

“I can’t bring about world peace, I can’t eliminate world hunger, but I can get one person off dialysis”, Dr. Susan Hou had said in 2004

I came across this article and it moved me so much I just had to share it.

What an amazing and wonderful person and her comments sum up totally the selfless person she is and her desire to help anyone she can.

Chicago based doctor Dr Susan Hou is  in India on the occasion of World Kidney Day on March 11. If you are wondering what’s special about Dr Susan Hou, it is the fact she saved her patients life in a true sense by donating her Kidney seven and a half years back . Dr Susan Hou would be speaking on renal disorders in pregnant women at an event organized by Tanker Foundation on Monday.

We have all known of family members or friends donating kidneys to one another.  But organ donations to unrelated patient was not really heard of.

Dr Susan Hou set up a noble example in this regard and proved that one need not be related to donate organs.

 “If we believe in the brotherhood of men, then there should be no second thought in donating your kidneys to anybody as no donation is unrelated,” Dr Hou explained.

Dr Susan Hou, an expert on renal disorders in pregnancy describes her transplant experience as great. Her husband Mark Moli, who is an expert doctor himself, was apprehensive about her decision but was fine post surgery. In fact every nephrologist should donate his kidney for the cause of health care, Dr Susan Hou noted.

It is not all roses with Kidney transplants. The donor’s intent and health condition is of utmost importance. The donor must not be suffering from cancer or any other infection. The donor’s kidneys should be healthy. Not many people are convinced of organ donation. “If we have the feeling a donor doesn’t really want to donate, then we tell them they cannot do it.” Dr Susan Hou said.

On Monday Dr Susan Hou was honored by Georgi Abraham, founder-trustee of Tanker Foundation. But one would be surprised to know that seven and a half years back her decision faced strong criticism. In a male dominated society that India is, there was a fear that women would be forced to donate kidneys to their husbands.

“I can’t bring about world peace, I can’t eliminate world hunger, but I can get one person off dialysis” Dr Susan Hou 2004.

What a noble and inspiring thought indeed!

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The kidney CT Scan appointment only took 30 mins and I was in and out in a jiffy. 

I had to make sure I was not wearing anything metal so necklace and bra came off. Trousers stayed on as elasticated instead of zipped.  So wearing t-shirt and trousers I lay down on the CT Scanner bed. It was explained to me that first of all they have to “plan” the scan. The scanner will take some x-rays to determine exactly where my kidneys are then the main scan will only scan that part of my abdomen instead of all of it – all clever stuff.  To do this I had my arms stretched out behind my head and about 7 times the bed passed through the scanner stopping over my abdomen. There was a little screen on the outside of it with two “pac man” type faces – quite amusing. This recorded voice would say “breathe in” and the little pac-man on the left would light up. He had his mouth partly open as though he was about to go chasing his lunch … lol … then a voice would say” hold your breath” and the little pac man on the right would light up. His mouth was closed and his cheeks puffed out! …. Holding of the breath lasted between 3 and 5 seconds, so hardly any time at all.  The bed you were on moved out of the scanner as the voice was saying “breathe” – you could see a countdown in seconds also. 

Have to admit when the bed first went under the scanner (check previous post to see image of the scanner, like a doughnut), I didn’t think it was going to stop until it had passed totally over me. Being rather claustrophobic I felt a bit of panic start, but then felt silly when it went no further than it had to so as to cover my abdomen!! It stopped with the outside, that was slightly angled, level with my chin, so that was fine.

Once they had “planned” the scanning area on my body, I then had a canular put into my arm. First salt water was injected in (felt a bit cold) to make sure the canular was inserted correctly. Then they attached the machine that was going to dispense two different amounts of radioactive mixture.  This travels through the body highlighting the kidneys etc so the scanner picks it up and can form the image.

I was told that as the fluid went through me it may feel warm also I may feel like I am doing a pee but I wont be! lol !

When the “warmth” was felt, it was hardly anything, I felt my hands feel lovely and warm, but only fleetingly then the feeling disappeared.  I now know what he means when he said I may think I am doing a pee (not sure if this applies to men also…) but I felt a sort of “warm flowing” sensation as though I was weeing, but I knew I wasn’t because no bladder feeling happened. It was just like the feeling of warmth flowing through my hands. I had a joke with him and said I thought I had actually wet the bed! He said he wasn’t bothered as it would be the student with them that would have to clean it up!! We had a laugh ….

Had to wait a few minutes for the mixture to travel round my body. Then a second dose was injected and this would show up the veins and arteries.  Again felt my hands warm up and the feeling that might be having a pee. I hasten to add this was not an embarassing or unpleasant feeling  and was only a fleeting feeling. Not sure how else to describe it except for how the nurse described it!

With my arms stretched out above my head under the scanner again.  I did twice have to hold my breath.  I was under the scanner I suppose maybe 10 minutes. Was not long at all.  There were some see-through sections in the scanner and you could see the “workings” whizzing around. It also sounded very much like my washing machine when on spin cycle, it even increased the revs just like my machine does! Then it was all over. 

So the whole thing was very quick and totally pain free. None of it was unpleasant and was back home before I knew it.

Now I believe the next stage is that my Consultant will review all the test results to make sure they are all okay. He may order other tests, that would be up to him and he may also wish to see me … or may not!  This is always the hard part – the waiting to hear something.

CT Scan now booked – 28th October 2009

CT stands for Computerised Tomography. This will be in the Radiology Department.
The CT Scanner is a machine that takes detailed slice-type pictures of the body using x-rays and a computer. Instead of sending out a single X-ray through your body as with ordinary X-rays, several beams are sent simultaneously from different angles. In my case it will result in detailed image of the kidneys, their location, size, the arteries and veins connected to the kidneys. From this image the surgeon can decide which will be the safest kidney to remove.  Although we have two kidneys they are not necessarily identical. One can be larger (my left one is) and they can each have a different number of veins. The fewer the better as far as surgical procedures.

I will be asked to lay on a couch which then moves through the CT machine which will scan my abdomen.  The machine is an open ring-like structure – rather like a doughnut!   I will feel nothing, but will be able to see lights on the machine.  I may be given an injection of a colourless dye which will help to show up the blood vessels.

This is what a CT Scanner can look like.

CT Scanner

The hospital are great, they promised they would manage to fit in this CT Scan before I went to London and they have. I did not want my time away from home to hold up procedings any more than they had to.

Tues, 6th October

One more evaluation test to come

I thought I had finished all the physical tests but apparently there is a CT scan of the kidneys still required. The CT scan will show the veins and arteries leading to and from the kidneys. It will show everything in much greater details. It takes about an hour and a half. The result of the CT scan will then be discussed at a consultant meeting and this will determine which kidney is to be donated and whether laparoscopic (keyhole) surgery can be performed. Hopefully soon the letter will arrive with my appointment date.

Once it is determined which kidney is to be used, then the consultant nephrologist will review all my results to date. He may or may not wish to see me. If he is satisfied that I have had all the necessary tests and he is happy with the results then I will be referred for my independent assessment.

The Indepedent assessment is a legal requirement set by the HTA (human tissue authority) in order to gain approval for me to donate and for the transplant to take place.

Once approval has been given by the HTA that will be the finish of the assessment and the next stage would be for my details to be registred with UK transplant so that I can be matched with a suitable recipient. This last stage must not be rushed and I will only go onto the donor database when it is totally convenient for me i.e. no committments to get in the way etc. Once a recipient is found which will be almost straight away, then things could happen very fast, so would not want anything to hold things up. But all this will be discussed with the hospital when approval to donate has been given.

I sit back now and wait to hear when my CT scan is. I hope it is before beginning of November as I am then away for about 2.5 weeks.

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The purpose of this interview was to make sure that I understood what I was offering to do and that I was not doing this under any sort of coersion. Was not being offered money or any incentive to donate. They also needed to know there was not any underlying mental conditions that could adversely affect my decision making . That I was donating for the right reasons and my life was stable etc etc.

The interview lasted around an hour and basically we just chatted. The doctor asked me about my childhood and schooldays … also about my time while growing up and then questions about my family life past and present. I was also, of course, asked why I wanted to donate. She probed further and asked me how I would feel if say the operation presented problems … if something went wrong – how would I cope. How did I feel about never knowing who the recipient is? Would that bother me. I explained to her that just knowing they were living a better life and enjoying doing things again was plenty to make me smile. I think at the end of our chat she could see that I was a strong person mentally, knew my own mind and had made my decision freely with no coersion from anyone or payment and with full understanding of the whole procedure and risks etc etc.

It is a bit nerve-wracking knowing you are going to be quizzed by a psychiatrist. All one can do is say things as they are.

The doctor had no more questions and asked if I had any. I said I just had one … “Had I passed!” …. lol …. she said there was nothing untoward in our discussions – nothing that would make her query my decision. She would write up her report and send it to those concerned and a copy to me.

Couple of days ago I wrote to the Transplant Nurse Specialist and asked her to remind me of what happens next. We are so near now. I did chat with her a few weeks ago about what happens once the evaluation tests are done – but I never wrote anything down, so I am in a muddle as to what order things happen next. So look forward to her response.

A Glomerular Filtration Rate (GFR) measures how well  kidneys filter your blood.  A lovely radiologist called Sarah greeted me. My weight and height were taken. Sarah put a  canular into my left arm. It is from this that the blood samples will be taken.  A small amount of Heparin was used to stop any blood clotting in the canular which would interfere with the drawing of the samples.

In my right arm she put a “butterfly IV canular” into which she injected a very small amount of special radioactive tracer (probably less radioactive amount than having a normal x-ray).   The canular in my right arm was then removed. Read the rest of this entry »

I was challenged recently to try to explain what drives me to donating to a stranger and what is in it for me. If I were paid a large sum of money, then that could be understood as to the motives behind this. But with no apparent benefit – then why do it? Very good question and not always easy to answer.

Why do people decide to sail around the world or climb the highest mountains in the most atrocious of conditions? They are hailed as Explorers and record breakers and daring and brave! Who have they benefited by doing those things? Don’t get me wrong, they are courageous and brave and have pushed the boundaries of what the body can endure to the limit and beyond and I have great admiration for them. Why then when we decide to help someone lead a better life, we are often viewed as … crazy!

Why do we do anything though? Emotions drive us either to do something or not do something. Emotions that just seem to spring from nowhere.

Sometimes the drive inside us is so strong we just can’t ignore it. I had such  a desire inside me to offer one of my kidneys to someone who needed one. That desire just grew over time. I knew it was something I really wanted to do. Having said that, I did not go into this blindly. Even though my heart kept telling me this was something I wanted to do, reality also told me to investigate this, really look into it and then decide whether heart or head wins! I found nothing to dissuade me from doing this … so my heart won.

What do I get out of donating? I do agree that whenever we give, we do also receive, whether it is a great sense of satisfaction or disappointment should something go wrong.
Read the rest of this entry »