Living Kidney Donation

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.

Why do our wonderfully brave men and women join the Forces knowing they may get injured or killed if they go to war? They are indeed exceptionally brave and courageous people and no-one will doubt that at all, I am in awe of all of them and I am just a shadow in their presence.

Why do we do anything though? Emotions drive us either to do something or not do something.

Sometimes the drive inside us is so strong we just can’t ignore it. I had 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 wanted to do.

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.

Regardless of what we give – love, help, gift or simply a hug – we get some sort of emotion in return, even without asking for it.

I am certainly not doing this for any emotional thrill at the end. I have had some stress so far. Evaluation started Feb. 3rd – it is now nearly a year later. .. the wheels turn so slowly – I am not a very patient patient…lol. There is not much support to be found as altruistic kidney donation is very much a new development in kidney donation in the UK. So finding people to just chat to about this is not easy.

This was one of the reasons I started this blog, as was hard to get the full donor perspective of it all. I know some people who I should tell I am donating, but they would be against this or just wouldn’t understand, so I have not told them. I will tell them nearer the time. This also means that people close to them I cannot tell, as it is not fair to expect people to keep secrets. I can do without negative attitudes at this time and only need people who are prepared to support me – whether they agree with me or not. So that is somewhat stressful, having to keep quiet to people who perhaps I would like to include.

Once I have donated, then what? Unlike donating to a partner or child or sibling, I will have no-one to hug, no-one that I can share in the joy of seeing them begin to lead a normal life; no-one I can look down on when they are asleep and feel my love for them sweep over me – no-one I can tell that they have to take me to the Peking Palace twice a year for a slap up meal!! – No-one I can telephone to ask how they are. I will probably feel a bit depressed because I want to give them a hug and can’t. In fact I will know very little if anything about them at all. I won’t know the recipients name, or anything about them except that they so desperately needed a new kidney – so I imagine I will have a bit of an “emotional hole” for a while. I will Pray the recipient does okay and lives for many years a good life. I will also feel so very happy knowing someone has a new start in life. That feeling will far far outweigh any negative feelings. So there are no “emotional highs” in this so far – just many “emotional frustrations”.

I have had people email me offering their support. Someone who donated last year and people who are currently undergoing evaluation right now and someone just offering me their prayers and wishing me luck. I also have had emails from people telling me I am crazy, nuts, stupid!. .. .I have been verbally abused and sworn at in emails. I cannot say some of the emails have not hurt they have, even though those people do not know me at all. Yes I put myself in that position by having a public blog. But I have also had four people contact me who are wanting to donate (3 to relatives and one considering donating to a stranger) but find it hard to get first hand information from the donor perspective.

It can only help people to give the full picture. I have not done the blog for any glory or emotional high. I have done it so other people won’t struggle like I have in trying to get certain questions answered but finding the medical answers still leave some holes, which as a potential donor those questions need full answers, and hopefully I can help fill those holes and so help someone make a decision – one way or the other – or be there for a donor who just needs a bit of emotional support from someone who is going through it – been through it.

Most of my life I have known people who help other people just as part of a normal day. .. often putting themselves out no end just so someone else wasn’t struggling. There was never any question of whether that person deserved help or whether one had the time to help them, one made the time and effort no matter who the person was and if you couldn’t help for whatever reason, you sure as heck found someone who could.

When I heard it was now legal to donate to a stranger, I had this strong desire to make a real difference in someone’s life. Between knowing I wanted to donate and starting the evaluation proceeding I had a year. In that time I did a lot of research and speaking to people, including donors. I sought council from my Church and spoke with immediate relatives. I have not gone into this lightly.

None of my research or discussions with people produced anything that made me think twice about my decision. My Christian beliefs I am sure have played a large part in making me the person I am. Life experiences have also influenced my attitudes towards events and people and life in general. It is very rewarding to be able to help someone, regardless of who they are, no matter how little or large the help.

I have been in three situations over the years where I have really really needed help, physically and or emotionally and never really got it. What help I did get – people soon tired and turned their backs. .. I do not like the thought of people struggling, wanting help and not getting it. I know the emotional pain and depression it can bring and believe me, no one should have to go through that. If I can give help to someone, I will – and God willing, I hope that is what I can do in this instance.

What makes us feel the way we do? Why do we feel certain emotions? I don’t really know. All I do know is that this is something I really want to do.

The desire to donate must come from within the heart and not from any outside pressure. I hope this blog can help anyone who does have the desire to donate – whether to a family member, close friend, or to a stranger – to find some useful information here that will help one way or another.

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 2008 and 31 March 2009:

• 3,513 organ transplants were carried out, thanks to the generosity of 1,854 donors.
• 977 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 2,536 patients received a kidney, pancreas or combined kidney/pancreas transplant.
• A further 2,711 people had their sight restored through a cornea transplant.
• A record number of donors were living donors, 954 people donated a kidney or a segment of their liver or lung, representing more than half of all donors.
• The highest number of non-heartbeating donor transplants took place- 579 transplants, a 35% increase on 2007-2008.
• Living donor kidney transplants are increasing – 589 in 2005-2006, 690 in 2006-2007, 831 in 2007-2008 and 927 in 2008-2009 and now represent more than one in three of all kidney transplants.
• At the end of March 2009, 7,877 patients were listed as actively waiting for a transplant.
• 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 at 31 March 2009 to 16,124,871 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.