Archive for July, 2009

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.
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It is important that anyone considering donating a kidney is aware of the risks involved. 

Firstly let me say that altruistic donation (the operation and recovery etc) is no different to someone donating to a loved one. Here are some statistics *.

In the UK between 1 April 2009 and 31 March 2010:

  • 3,709 organ transplants were carried out, thanks to the generosity of 2,021 donors.
  • 978 lives were saved in the UK through a heart, lung, liver or combined heart/lungs, liver/kidney, liver/pancreas, heart/kidney or liver/kidney/pancreas transplant.
  • A total of 2,739 patients’ lives were dramatically improved by a kidney or pancreas transplant. 160 of whom received a combined kidney/pancreas transplant.
  • A further 3,099 people had their sight restored through a cornea transplant.
  • A record number of 552 non-heartbeating donor kidney transplants took place and accounted for one in five of all kidney transplants.
  • Living donor kidney transplants are increasing – 475 in 2004-05, 589 in 2005-06, 690 in 2006-07, 831 in 2007-08, 927 in 2008-09 and 1,038 in 2009-10 – and now represent more than one in three of all kidney transplants.
  • Almost a million more people pledged to help others after their death by registering their wishes on the NHS Organ Donor Register, bringing the total to 17,400,213(September 2010).

As you can see from the above, more than 1 in 3 kidney transplants are via living donors.  There may only have been a small amount of altruistic donors so far, but the law allowing that only came into force at the end of 2006.

Did you know that a kidney transplant from a deceased person – the kidney has a life expectancy of only around 10 years. A kidney transplant from a Living Donor – the kidney has a life expectancy of around 20 years!

Yes there are risks involved. There are in any operation.  What must be pointed out though is the doctors would not allow this operation to take place on any individual if the risks were not minimal. The rigorous tests a donor is put through prior to being accepted as a donor makes sure they are very fit and healthy.  It was explained to me that a reaction to the anaesthetic could occur. Something unexpected could occur during the operation itself.  This is very unlikely but no operation is without some risk however small.  There could be post op complications but again, very minimal and doctors are on top of watching out for any complications. It is also up to the donor that once they leave hospital to make sure they take care of themselves during recovery and seek advice from a doctor should they suspect anything unusual.  Regular checks after the operation will ensure kidney function is performing as it should. 

Immediately after the operation there is a small risk of chest infection, being a non smoker certainly reduces that risk …. but it can happen after any operation, even though the risks are small.  A blood clot could form – again very unlikely.  I asked what precautions are taken to prevent blood clots and was told that my bloods ability to clot was tested before hand. That for the operation I would wear these special long socks – anti-embolism stockings (do a google but I am not sure if they are full length ones or below knee ones).  Some special calf wraps that gently compress the lower leg to aid blood circulation.  I would be given heparin to thin the blood slightly. I would be constantly monitored.  More details on the above can be given by any Transplant unit or your doctor.

As for living with only one kidney afterwards that does not present a problem to me.   The remaining kidney will slightly enlarge as it takes on some extra work.  There is no reason why I can’t go back to a totally normal life afterwards.  Very active people have donated and carried on with an active life afterwards just as before. Some people are born with only one kidney but don’t know it. They feel perfectly well with just one. I am no more likely to get kidney disease becuase I only have one kidney.  Generally a kidney problem would affect both kidneys, so having one would present no greater risk.  Playing a contact sport (boxing, rugby etc) where a blow could occur to a kidney should be avoided if possible or a protective belt worn. I don’t think I am likely to take up one of those sports! …. me = wimp!   After the operation the GFR levels do drop slightly then then rise again.  There can be slightly less function with one kidney but one has to remember that we have a surplus of available “function” that is never used. So a slight drop in function and the kidney still works just as good as before. There is an extra risk of hypertension occuring later in life but a good and healthy lifestyle is the rule to follow.  I had all the risks thoroughly explained to me and I asked many questions relating to them. I also did a lot of research myself as to what complications donors have had. Some have had nerve pain for a while afterwards, digestion problems and other things that with time disappeared. Every answer given was more than acceptable to me as a very lo risk indeed.   With only one kidney drinking sufficient amounts of water each day is helpful. If possible NSAID’s should be avoided as they “may” cause a problem for the kidney.  Normally with two kidneys not a great problem but when you only have one then perhaps being that little bit more aware of what does or does not go into our bodies should be considered.  There can also be a huge emotional surge within us. Some people have told me they got quite bad depression, rather like post natal depression that lasted many weeks. If that happens to you, don’t just take it. Ask for help in dealing with it.

To me there is a greater risk each time I get into my car and go on the road where I am likely to come across drivers with no licenses, drivers under the influence, drivers that are just plain bad drivers. They don’t wear stickers on their cars saying “avoid me”. Yet I choose to take that risk.    People who smoke know they are taking a huge risk and putting  their health at risk.  People who regularly go out and drink excessively…. they know they are damaging their health, yet still do it!  People climb huge mountains; jump out of airplanes;  take part in extreme sports – they love the adrenaline rush and the challenge, yet know there are risks.   They are hailed as amazing people for achieving these things – yes they are – they have far more courage than I do. We all do things, knowing the risks, accepting them – yet the risks involved in donating a kidney to me are far far far less than a lot of those risks. 

* Statistics taken from here

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 ….

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…). 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.

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.