Living Kidney Donation

Posts Tagged ‘kidney donation’

We often take the NHS for granted. Quick to moan when things go wrong, such as long waiting lists. Okay the NHS is not perfect (what medical system is). We all know the NHS is under funded and has not been “updated” for far too long.

When this lady contacted me – who is a Vet in USA – I count my blessings that I have the NHS – warts and all! Family (including myself) have been treated quickly for cancer. A family member was given so much home help when she became old and unable to care for herself. Many instances where I am so grateful for the NHS. Yes there have been times I have been frustrated but ……

I hope things have changed in the USA since I heard from her. I often have people from other countries contact me with stories of despair and hopelessness. Brings me to tears and I feel so frustrated and sad that I cannot help. It also reminds me to be so very grateful for our NHS.

This is her story.
———————————
quote
I’m a 100% service connected veteran with kidney failure. I have been trying to survive my disease, fight for care & benefits from the VA for both myself and other vets, deal with additional complications
such as breast cancer and other ailments.

Getting on multiple kidney transplant lists. Ohio State, U of Toledo, Nashville, and U Cincinnati. My VA doctor told me “not to try so hard and get my hopes up”! Been on dialysis for 30 years! I’ve overcome many obstacles to reach this point and I’m now able to pass the battery of exams to be considered. Each transplant center optimistic about my chances. VA doctor is determined to block me by saying ALL of the copay after A & B is on me and could be $90,000!

I am ready for a change in my life! I realize that there is NO cure, but a change would allow me a better quality of life and will allow me to work to inspire others by showing what I’ve done and how to accomplish this goal. VA doctor suggested that I not get my hopes up for a possible transplant at University of Cincinnati. UC called for referral and as I hung up the phone, another nephrologist called to say that he would sign for me to get on the list. I’m Nashville bound late October. Ohio State University Eval mid October. UC bound mid October.

Now, just informed that the grant that pays for dialysis patients to have their Medicare B paid in order to have the insurance to cover transplants is NOT available to me because I am 100% service connected for my kidney failure and I must now pay $730/quarter in order to have the benefit of listing at the additional transplant facilities. My only option is VA Nashville to be fully covered and I previously waited 8 full years without one single call. The Dayton VA record for transplants has been only 3 in 15 years!

unquote

I donated my kidney and it did not cost me any money at all. The NHS paid for the operation and recovery check ups. I have annual renal check ups to make sure my remaining kidney is performing ok (it is) – doesn’t cost me anything. The recipient of my kidney – received it at no cost to them, the NHS covered the cost. At times we can complain about the silliest of things – yet this lady and many like her … struggle just to stay alive. This was a few years ago and I pray that things have changed for people in the USA.

NHS Organ Donation

Did you catch the latest episode of Surgeons: At the Edge of Life? It followed the story of Marcus donating a kidney to his wife, Tracey, and the incredible team at Addenbrooke’s Hospital in Cambridge who made it possible.

These words from Tracey to Marcus after the transplant are so inspiring: “I would say thank you but there are no thank yous in the world that do it, I wouldn’t be able to say it enough times.”

You can watch the episode again, using the link below. Please remember that this show features footage of live surgery.

https://www.bbc.co.uk/iplayer/episode/m001hsry/surgeons-at-the-edge-of-life-series-5-episode-3

Worth a thought ……One  of the richest and most powerful men in Brazil, Thane Chiquinho Scarpa, made waves when he announced plans to bury his million-dollar Bentley, so he could drive around his afterlife in style. He received lots of media attention, mostly negative and was severely criticized for the extravagant gesture and wasting of a precious commodity. Why wouldn’t he donate the car to charity? How out of touch with reality is this guy? He still went ahead with the ceremony.

Moments before lowering the car in the ground prepared for the burial of his Bentley, he declared that he wouldn’t bury his car and then revealed his genuine motive for the drama: Just to create awareness for organ donation.

“People condemn me because I wanted to bury a million dollar Bentley, in fact most people bury something a lot more valuable than my car,” Scarpa said during a speech at the ceremony. “They bury hearts, livers, lungs, eyes, kidneys. This is absurd. So many people waiting for a transplant and you bury your healthy organs that could save so many lives!”

Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.

If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

— Robert N. Test

Don’t take your organs with you – Sign the Register
and save a life !

NHS Organ Donation Register

Very interesting article on the  BBC News website

The NHS has released figures revealing that 457 people died in England last year while waiting for an organ transplant.

Doctors’ union the British Medical Association (BMA) and politicians alike have called for an opt-out system to be adopted in England, where people’s consent to donate their organs after their death is presumed unless they have explicitly said otherwise.

This system is currently in force in Wales and in a number of other countries throughout Europe.

In a recent Parliamentary debate on organ donation, Labour MP Dan Jarvis said: “England must now move to an opt-out system. The evidence is clear – hundreds of people a year are paying a price of us not doing so.”

But there is a lack of evidence to support this claim.

Presumed consent

In Wales, where an opt-out system was introduced in December 2015, there has actually been a small dip in the number of deceased donors, from 64 in 2015-16 to 61 in 2016-17. This resulted in a drop in organ transplants from 214 to 187 respectively.

This is not to say the opt-out scheme is having a negative effect – some fluctuation is to be expected – but so far, despite the claims, we don’t have any evidence that it is having a positive effect.

The BMA says it believes that over time such a scheme would lead to an increase in organ donation.

The Welsh government is in the process of evaluating the scheme and plans to publish a report by the end of this year.

One concern raised by Dr Margaret McCartney, a GP, in a paper for the British Medical Journal is that the Wales model of organ donation creates a group of non-donors who did not exist before.

In the English system there are two groups of people: those who have opted in and registered their wish to be a donor, and those who have done nothing whose families will be asked to decide.

In Wales there are now effectively three groups of people: those who have opted in and so registered their wish to be a donor; those who have done nothing for whom it is assumed they are happy to donate their organs, but it is still ultimately for their family to decide; and a third group who have opted out and so expressly registered their wish not to be a donor.

As it currently stands, 6% of the Welsh population has opted out of organ donation. This is a group of people who in an opt-in system were still potential donors, depending on their families’ wishes – they may not have ended up donating organs, but we just don’t know.

Spanish system

There is correlation between countries having opt-out schemes and having a higher number of organ donors.

But the countries which have the most donors per head combined the introduction of their opt-out schemes with other changes, like better infrastructure, more funding for transplant programmes and more staff working to identify and build relationships with potential donors before their death.

Spain is often touted as an opt-out scheme success story.

So-called “presumed consent” legislation was passed in 1979 but donor rates only began to go up 10 years later when a new national transplant organisation was founded which co-ordinates the whole donation and transplantation process.

The legislation is also not strictly enforced since families are always consulted and have the final say.

However, opt-out schemes don’t always translate to increased organ donor rates. In Sweden, for example, such a scheme has been in force since 1996 and it remains one of the lowest-ranked countries for organ donation in Europe. Luxembourg and Bulgaria also have opt-out systems and low rates of organ donation.
Declining rates

In France and Brazil, variations on a “presumed consent” system actually led to a decline in the rate of organ donation.

Another difficulty in assessing whether opt-in or opt-out schemes are driving different countries’ donation rates is that these schemes take different forms across the globe.

In both Spain and Wales, families of potential organ donors are always given the chance to refuse. But this is not universal – Austria and Singapore both have “hard opt-out” systems where those who have not opted out are presumed to have consented to organ donation regardless of their families’ wishes.

And there are other differences, for example in Israel a priority incentive scheme means those who have agreed to donate their own or a deceased family member’s organs are given priority on transplant lists should they themselves need an organ in the future.

In “hard opt-out” systems there were increases in the organ donor rate of up to 25%.

Original article found here
http://www.bbc.co.uk/news/health-41199918

Every patient waiting on a kidney transplant in Scotland is to be sent an information pack telling them how to get a living donor in a bid to reduce the current waiting list.

At present there are more than 400 people on the transplant list, facing an average wait of up to three years for a kidney from a deceased donor.

This latest move by the Scottish Government is part of a national drive to increase awareness of the possibility of donating a kidney to someone in need of a transplant, whilst still alive, either to a loved one or a stranger.

Over the last ten years, more than 500 people in Scotland have become living kidney donors, with figures highlighting 86 people donated in 2016-17 alone. The information pack has been designed to inform patients of the different routes to living donation and reinforce that a successful kidney transplant from a living donor is the best treatment option for those waiting, as the kidney tends to be healthier. It features the perspectives of donors, recipients and various clinical specialists working to ensure each transplant is as successful as possible.

———————————

Interesting idea …. read more about it here  Living Donor Scheme

.

Wales organ donations rise in year after consent law

The Welsh Government says more lives have been saved since Wales became the first country in the UK to introduced a deemed consent system.

Adults are regarded as having allowed organ donation unless they have opted out.

In the last year, there have been 160 organs transplanted and 39 were through deemed consent.

BBC article on Wales organ donation

I find it interesting whenever the subject of paying donors for their kidney – the subject of Iran comes up. Iran is the only country where they legally pay their citizens to donate a kidney to another Iranian citizen. News reports praise their scheme saying they do not have any waiting lists for kidney transplants. BUT – which media reports are to be believed. Here are two links re the Iranian kidney donation system. Are these to be believed? Who knows, I have not had the time to investigate to decide. I know at the very bottom of this link it shows the “official” waiting list for transplants in Iran.

I have also read reports that it is still only the rich who benefit. The poor living in outlaying villages who have no money are not even on the waiting lists as they cannot afford to even travel to the hospitals, or if they can no way can they afford the required medication needed after a transplant ……

There are many myths surrounding the Iranian system – which to believe and which not – I am going to try and find out. So if you hear/read of anyone saying paying donors to give a kidney gets rid of waiting lists – look at Iran – then send them to this link.

I am not after debating whether donors should be paid or not, that is an entirely different post altogether. This is about the possibility of media/people implying tht paying donor for their kidneys solves the kidney waiting list.

The case for Iran – to me – is far from proven. I am not saying the information on the link below is 100% correct. This is just it. Which media information we read is correct? I am hoping to find out.

Please read this link: (.pdf) Incentives, kidney donation, and the myth of the Iranian waiting list

Being a living kidney donor is not for everyone. Hopefully my website will show people what being a live donor is like. After reading the links down the left under “Become a Donor” it will inspire some people to want to be a living donor. If that is the case I would love to hear from you 🙂

BUT – there is nothing stopping most people signing up to the organ donor register. It DOES make a difference. Read this story about a lovely lady who received a kidney when she was 19 years old. 31 years later – yes 31 years – that same kidney is working well.

This is truly an inspiring story
http://www.itv.com/news/wales/2015-08-17/glorias-story-organ-donation-turned-my-life-around/

Mainly aimed at my USA readers, anyone living near to the Arden Theatre in Philadelphia, PA then this is for you.

Playwright Michael Hollinger has produced a play on the comic aspects of a kidney transplant.

Sometimes it takes comedy to get the message across. Now, of course I have not seen this production but am assuming it will be well received and word will spread.

Now we just need someone in the UK to produce a similar play for the West End and to travel around 🙂 …….

If anyone gets to see this play, would love you to report back on your views and whether it has had any positive impact re kidney transplant/donation etc.

Under the Skin, which will begin previews Thursday and run through March 15 at the Arden Theatre, Philadelphia (USA) –  is the result of Hollinger’s deep dive into the world of organ donation – a months-long process of interviewing local donors and recipients and examining the fraught interactions that arise when a person is asked to hand over a chunk of her own precious tissue.

You can read more here – Under the Skin by Michael Hollinger

Come on! Any UK playwrights out there want to do something similar over here? …. don’t be shy 🙂

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.

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/

.

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.

.

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.

.

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.

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.

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 »

I thought it might help to just go over what has happened so far, and the evaluation stages left.

I had an initial consultation with the surgeon and a Transplant Specialist Nurse. Various questions regarding my health, past and present and my families health as far as any illnesses they may have had.  My weight and height were checked.

Blood pressure
This gets taken as high blood pressure can cause damage to the kidneys.  Blood pressure is taken more than once during the evaluation period. 

Urine sample
Urine sample is taken and checked for underlying problems such as glucose, protein, bacteria, etc.

I have had blood taken three times and  checked for a variety of things. Blood group, tissue type …. infections, all sorts of things are checked for to make sure you are quite healthy.

Blood tests
Blood samples will be taken which is checked for blood group, tissue type, can show if there is anaemia, various infections etc etc . Various checks on the blood are done to make sure you are quite healthy and the kidney and liver are functioning okay ….

X-rays
A chest x-ray was taken.

Electrocardiogram (ECG)
I had an ECG (Electrocardiogram) where you have electrodes placed on you and your heart is monitored and the electrical impulses of the heart are recorded onto a graph and from that they can tell if there are any weaknesses in the heart.

Renal ultrasound
This is a non-invasive scan.  It  checks that there are two kidneys. Some people are born with only one kidney but are totally unaware of the fact.  The ultrasound can show the size of the kidneys, if there is any scarring or obstructions.   I had a small scar on the top of the right kidney which was probably due to an infection as a child.  It did not affect my ability to donate.  For those who have never had an ultrasound (most pregnant mums have) – then for a kidney ultrasound they wanted it done on a full bladder (that was the hardest part ..lol…). A gel is put onto your abdomen/side and then the technician moves a probe over your abdomen and sides and the probe can “see” your kidneys.  Once she had done the part that required the full bladder I was allowed to go and pee ! Then came back for the rest of the ultrasound. It is totally painless, not at all uncomfortable. The gel was a bit cold but that was all.  None of the tests I have had have been at all uncomfortable.  

A doctor was assigned to me to make sure that everything was being done that should to ensure I was healthy and fit enough to donate.  He checked my weight and height.  Asked me a few questions.   Listened to my heart which sounded okay. Blood pressure was 138/81. Peripheral pulses were present.  His opinion was that I was fit to proceed for further evaluation.  Ideally though I should lose some weight (being 89kb with a height of 1.6m). I also take HRT and was recomended I come off that for the donation. 

(Note: I do not take any form of  HRT which is derived from pregnant mares – such as Premarin etc.  I take kliovance which is plant based.  Speak to your doctor about switching if you are concerned about how the medication is produced).

I am working on the weight loss …. !

I saw the psychologist (see previous blog entry) and that is all fine.

Still to come ….
Psychiatrist Assessment
I am waiting to hear my appointment date for this.  They need to make sure I am fully aware of what I am committing myself to; that I am mentally okay and freely consenting to this procedure.

DMSA
This I have yet to have. It This is where they have to check the anatomy of each kidney. Arteries and veins have to be identified. It is not unusual for a kidney to have more than one artery.  These results go towards making a decision as to which kidney will be removed.   

GFR Test (Isotope Glomerular Filtration Rate).
I also have this to come. I believe I will be having this same day as the DMSA. The GFR is a test to assess the capability of the kidney to ’clear’ the blood of a substance. A small amount of dye is injected into a vein and blood samples are taken at hourly intervals for three/four hours, to measure the renal clearance of the dye. 

Finally I have to see the Consultant Nephrologist again  as he gives the final decision as to whether I am medically fit enough etc to donate a kidney.

All the information is given to an independant Assessor and I have a meeting with him. He  needs to make sure I understand everything etc etc. He then makes a report and presents to the Human Tissue Board and seeks their permission for the donation to go ahead.  The producing of the report and seeking permission can take up to a month in total.

It was explained to me that there was no guarantee that it would be keyhole surgery.  The surgeon would make that decision once both kidneys had been evaluted etc. It is not unusual for a kidney to have more than one artery and vein and if it turns out that there are two or three arteries and/or veins etc, it maybe that the operation would easier  with open surgery.  So that does affect recovery time.  Keyhole surgery – the stay in hospital is shorter by a couple days I believe and the recovery time  is much quicker.

I have some personal committments late Autumn  that are a must to keep and may involve physical activity. So allowing enough time for the donation and full recovery, it may be difficult to make the actual donation any earlier than late November/December.  That is fine and allows plenty of time for the rest of the tests and assessments to take place. Approval for the donation will be sought once my committments are over.  I certainly don’t want to be under any pressure during my recovery especially as I don’t know if keyhole or not – so need to be sure  there is plenty of time afterward to get back to normal.