Living Kidney Donation

I have been contacted by Annika Hambilton who is a student researcher at the University of Birmingham and she is currently doing a degree in Healthcare ethics and is conducting a research project on altruistic living kidney donation in the UK. She has asked if I will post her request here to see if any altruistic donors or potential ones would assist. The below is the letter she wishes me to post on her behalf.

Dear Sir/Madam,
I am a medical student at the University of Birmingham. I am writing to invite you to take part in a research study being undertaken for the purpose of my degree.

The study intends to look at the attitudes of people who have donated a kidney to a stranger and those who intend to in the near future, about whether they should be allowed to pick which kind of person receives their kidney. Currently, this is not allowed in the UK. I would also like to look at what factors motivate people to donate their kidney to someone they do not know.

As the number of people who have donated a kidney to someone they do not know is very small in the UK, I would be very grateful if you could spare less than an hour of your time undertaking a telephone interview with me.

If you are interested in taking part in this study please could you email me at the axh690@bham.ac.uk and I will send you some more information about why I am doing this study, what the telephone interview will involve and what will happen to the information you give.

I hope that you will decide to participate in this study, whether you have already donated a kidney to a stranger or if you hope to in the future, as the information produced may be seen by people who make decisions about UK policy on directed donation and organ transplantation at the moment and will provide insight into this unique type of organ donation.

Yours sincerely,
Annika Hambilton
Axh690@bham.ac.uk
Medical student, University of Birmingham

Home Dialysis – not always a picnic!

Home dialysis has great advantages over hospital dialysis. With hospital dialysis generally one goes about three times a week and each session lasts 3 – 4 hours.  Not every hospital can do dialysis so ofter the person has to travel very long distances each time. The whole day can be taken up.

With home dialysis that aspect of it is gone. Instead the person has dialysis over night while asleep using a different method to that in hospital. It takes much longer perhaps 8 – 10 hours, but at least it is at home and in the night so the days are free. Also becuase it is done daily theoretically the person should feel healthier as there shouldn’t be a build up.

But …. isn’t there always a “but” ! …. it does not come without problems. Things do not always go smoothly. Of course there is the phone to call for help and advice, but even so, it is a tremendous responsibility and when things do go wrong can be very stressful and worrying for all concerned.

My dear friend in Oklahoma, USA (you can read part of her story under the Blogs link) – Judy Ladd cares for her husband. She had a bit of a scare yesterday. Things didn’t go as they should. Read her account here:

 Home PD Dialysis – not always easy

Judy had been emailing me that morning and with her permission I was going to quote from her email anyway regarding supplies of dialysis equipment. 

Judy says:

Every month the company that brings his supplies calls for a order.   I just have to tell them how many cartons of each item we have and they figure out what he needs to last another month.  The problem is the weight of the cartons.  Lots of different supplies such as drain tubing and such that is not heavy.  The solutions he uses in his treatment weigh 26 pounds each. We have about 70 boxes right now each weighing 26 pounds along the wall in our bedroom and we are low because we get another delivery at the end of the month.  I’m very worried about the weight being on that floor so I’m trying to figure out how to put all those boxes in the front bedroom where I work, no traffic much on this floor.  We have wood floors so I don’t know how much weight they will really hold.   So even though we are low on supplies we have 70 boxes each weighing 26 pounds making a total of 1820 pounds plus 4 more boxes of a different solution that weighs even more. This weight is on a inside wall and the floor is starting to be weak.  Well shot now that I added it up I know I need to move them to a outside wall for more support.   
 
You know PD dialysis is better for the patient and they hate to go to the dialysis centers and sit in those chairs for 3 plus hours while that huge machine takes their blood out and cleans it.  Gary likes the home dialysis much better.   The tubing is in his stomach lining and dextrose fluid is put and it stays there for a hour and drains out. It’s taking out poison as well as draining out the solution that has been dwelling there for a hour.  A drain tube is in the toilet stool and that’s where it drains.  He does 7 of these exchanges every night about 10 or 11 hours if we don’t have any problems.   For the one that takes care of the dialysis patient its so much work.  I do allot of lifting and cleaning up in the morning when he comes off and in the evening when he gets on.  It took me a hour and 1/2 last night.  I had to call tech support because machine would not work after all that setting up.  I had to start from scratch all over again then it worked. 

I’m not complaining just overwhelmed today I guess.

It is that last sentence “I’m not complaining just overwhelmed today I guess” …. overwhelmed! I can imagine reading that and the link to her blog post just how overwhelming it can get.

I have posted this becuase I wanted people to know, that although dialysis takes over from the kidneys, it is certainly not an ideal solution. The lives of not only the patient but the carers, family and friends is disrupted. Some people have been on dialysis for 20 years plus even. Not everyone is suitable for a kidney transplant, but those on dialysis that are, the wait for “that call” must be unbearable at times.

PD Dialysis

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Dialysis/Transplant Patients - Getting  to the Hospital

How is everyone coping in the snow? I really feel for people who have to go to hospital for dialysis. I know a lot of people live many miles from the hospital and in this snowy weather, travelling must have been really difficult. I hope you are all coping.

Anyone booked for a transplant I hope the operation was not postponed and you all managed to get to hospital.

But to everyone in this cold wintery weather – keep warm and keep safe.

x DF

Just thought I would post to update people. My evaluation tests have finished and as far as I am aware they are all okay. I have to see the consultant and independant assessor before approval is sought from the HTA.

However once approval is given (assuming it will be!) and I am put on the donor database things can start moving very quickly. The hospital will not put me on the database until they get my agreement. Now I need to make sure that I have a totally clear calendar free from committments. I need to have uncluttered time for a few weeks after the operation and also make sure that family that will be there to assist me in the early stages afterwards will also be available.

Having made the decision to donate a kidney that is what I am going to do but being unable to anticipate when the evaluation process would actually come to an end various family comittments were made and over next few weeks I will be keeping them.

Also being an altruistic donor means I am donating to a stranger and that is how I want it to stay. I truly believe that recipient and donor should remain anonymous and should I give out information in this blog that would lead the recipient or one of their friends or family to work out that I must be the donor …. well I cannot do that. So I wont be adding to my evaluation/donation process until a while after the donation. At that time I will give full details as to what the procedure was like etc etc. I hope you will understand my reasons for now keeping quiet, what with my committments and the need for total anonymity as far as the recipient is concerned.

I will be making other posts on the blog though so I wont be totally silent. And I will most certainly be back to post about the donation when the time is right.

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

Kidney Donation Final Stages

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.

.

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 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 and with full understanding of the whole procedure 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.

Sarah explained that I had to come back in an hour when a blood sample will be drawn. I also had to come back each hour after that – four times in total.  I had to be as near to the hour as possible – give or take 5/10 minutes. She will know what time to expect me so to sit outside and she will come for me.  When the last blood sample is taken I will have another small amount of tracer inserted in left arm and wait a further hour then the scan can take place.   The type of canular used in the arm means I don’t have to have a needle go into my arm each time. Just the once to put in the canular.  When the blood is drawn or tracer inserted –  the needle enters the end of the canular only.  I didn’t feel a thing. 

Between samples I was allowed to leave the department, go to the canteen or even pop into the village to a delightful coffee house there!  As long as I was back at the appointed time .. that was important …. I could leave the department. 

I thought the day would be really boring especially as I was there from around 9:30am until about 4:00pm, but it was not too bad. An hour goes quite quickly if you have a good book to read. Also there were a few canteens to visit including a Starbucks.   I chose the Reception area as my “home base” where there were very comforatable chairs.  I found it quite fascinating to just watch the people – it was almost like a “day in the life of a hospital reception area”.  

When I returned each hour for the blood sample to be taken, it took no time at all.  Had a quick chat and laugh with Sarah who, as the day progressed, looked noticebly more tired!  It made you appreciate just how hard the medical profession works. On the go the whole time, I don’t think she had time for lunch even.

When the last blood sample was taken she gave me the injection (via the canular) for the kidney scan (NM Renal DMSA). So one more hour to wait ….. I rang  to arrange for my lift to come and pick me up as it would be about an hour for them to get to me.

The scan was quick and very fascinating.  You lay on your back on this “trolley” which is then wheeled under the scanner which is squarish and when lowered is just above the abdomen.  I had to lay still while the scan took place. No noise from the machine so you were unaware it was even working … except that on the monitor you saw two pictures of your kidneys taking shape.  One picture was from the top and one from the back of you.  Wow … it was amazing. All these white dots building up a picture.  My left kidney was noticebly larger than my right, which was slightly lower than the left. Both these are quite normal, one kidney is often larger and one kidney a bit lower.

Tests now complete I could go home. Overnight the blood samples are prepared and my consultant will sent results of those and the scan asap.

The small amount of radioactive material injected into me will have no affect on me and will be flushed out my body within 24 hours.

As far as I am aware I have now had all the physical evaluation tests.  The psychiatrist evaluation should be next followed by an overall assessment by an independant person who then puts the report in to the Human Tissue Board and asks for permission for me to be a donor (assuming of course I pass his assessment). 

Bless our Troops

Leaving the hospital carpark we ground to a halt and there the traffic stopped flowing for perhaps half an hour. To begin with frustration set in as all I wanted to do was to get home.  After a short while a car park attendant walked by us and said that the delay was due to the repatriation of the  bodies of the servicemen killed in action being brought to the hospital mortuary.  At that moment I could not have minded if we were stuck in the carpark for hours. My heart and prayers went out to the family and friends of those servicemen.  It seems to be all too often now that we hear of the Procession through Wootten Bassett en route to John Radcliffe mortuary.  Standing at the side of the car park road were two servicemen with their large heavy packs on their backs. They were just standing there and looked so “lost”.  I smiled at them as we slowly crept passed.  I had this huge desire to get out of the car and hug them and to say “thank you” .. I didn’t but I wish I had now. For some reason I keep seeing them in my mind – just standing there.

The Royal British Legion standard bearers and representatives of veterans’ organisations had earlier been gathered at the Headley Way entrance to the hospital to salute the fallen men as the cortege arrived from RAF Lyneham, in Wiltshire.

Lance Bombardier Matthew Hatton, 23, of 40 Regiment Royal Artillery, from Haxby, in North Yorkshire, was killed by a makeshift bomb in Helmand on Thursday.  Rifleman Daniel Wild, 19, from County Durham, and Captain Mark Hale, 42, from Bournemouth, went to his aid but were killed by a second blast.

May God Bless our troops

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

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 is only a couple or so years old.

I felt it useful to show those statistics as some people think that only around 20+ living kidney donations have taken place …. that is altruistic donations though.  Stats above will show you that over 900 living donations have taken place in 2008/2009. Since 2005 -  2009 there have been 3,307 living kidney donations.

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 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.

Immediately after the operation there is a small risk of chest infection, but as I don’t smoke this is highly unlikely …. 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 shoes 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 to take on the 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. I don’t think I am likely to take up one of those sports! …. me = wimp!    I had all the risks thoroughly explained to me and I asked many questions relating to them. Every answer given was more than acceptable to me as a very lo risk indeed. 

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. 

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.

30th June

Met with the psychologist today, a very nice lady, felt immediately comfortable chatting with her.  She needed to know that I fully understood the risks involved and that I was not under any pressure to go through with this. Also that I was aware of the mixed emotions that I may go through.

She asked why I wanted to donate to a stranger.  Various personal experiences over the years I know have contributed towards the way I feel about other people.   We had a long chat about certain aspects of my life that I believe have influenced me over the years and made me the person I am today. Certainly my faith in God has played a large part over the years. 

Several questions were asked to make sure I wasn’t feeling pressured into doing this.  She made it clear that if I ever felt the need to chat to anyone about any aspect of this, either during the evaluation or after, then she is just a phone call away as are other members of the Living Donor Unit. 

It was explained to me that after the operation some people can feel a bit down and “neglected” and suddenly after the months of evaluations and attention, it is all over.  I could also feel a bit depressed as an after effect of the operation.  I have always been able to cope with those feelings quite well in the past.  I don’t think I would feel  a bit down becuase it was all over and no more attention. I could very well feel rather down because I cannot share in the joy of the recipient except in my imagination, but then I knew that right from the start.

I also have to understand that the transplant may not be successful and was I prepared for that. 

I was told that anything I said was confidential and although the assessment would be based on what was said,  if I didn’t want any of the information to be put into the report then that was fine.

10th May

Great news. Got a letter from the Consultant Nephrologist advising that I am fit to proceed to further evaluation although I should lose some weight and come off HRT before being a donor.  The former I am working on! The latter will be fine over the short term and who knows maybe wont need to go back on it.  He is still waiting the results of other blood tests but they should present no problems.

Had my second appointment.  Had several more blood tests including a fasting one. Luckily I was first in the queue for that one, so could then go and have breakfast before before my next test. I had a kidney ultra sound scan. There was a small scar on the top of my right kidney but apparently that is not unusual and more than likely meant I had an infection as a child and was probably never even aware that I had. It should not affect my ability to donate.

I saw the Consultant Nephrologist who checked blood pressure, weight, height and general fitness. Again the question of my weight came up. 

I understand it could be another 2 months before the evaluation is finished.

I am not sure what is next on the list … I wait to hear…

Kidney donation – altruistic

February 3rd 2009

My first appointment at the hospital to meet the surgeon and have some initial tests done. It was during the heavy snows we had but luckily once I had got a few miles out from home, the snow thinned and travelling wasn’t a problem.

There had been some mix up with the appointments and I was in the book for 30 minutes after the time in the appointments letter. The hospital was also  running 1.5 hours late and I had arrived 30 minutes early!! No matter, it gave me time to read up on literature there and just watch and listen as to what was going on in the reception area. I was struck by the assortment of people there that had kidney problems … young, old, mothers, fathers, youngsters … it was a reminder than anyone, any age can be seriously ill and need help. I had time sitting there to think about the struggles some people have  to try and lead a normal life. It made me realise I have been very lucky in life as regards my health. Whatever I have had wrong with me has easily been treated. Not so for thousands of people. I am so glad I made this decision to donate.  Sometimes being kept waiting for an appointment has its advantages as in this case – it opened my eyes even wider.

I saw the surgeon first, very nice guy. Very friendly, smiley face and good sense of humour. I immediately felt relaxed in his company.

He made sure I knew exactly what it was I was offering to do and explained that a Doctor would be assigned to me to look after my interests.  I would go through a very thorough medical assessment.  I would also have a psychologist and psychiatric report made. The whole team needs to know that I fully understand what I will be doing. That I understand the procedure and what could go wrong etc etc.  Once I pass the medical tests and the psychiatric report, the details are then sent for approval. If I am approved as a suitable kidney donor, then I will be put on the database and once a suitable recipient is found, arrangements will be made for the transplant.  The evaluation process can be between 3 and 6 months, but they anticipate that once accepted it will be a very short time before they locate a suitable match.  

They would remove my kidney in this hospital and then safely transport it to whichever hospital the recipient is in.

The surgeon asked me about my medical history and my families. We have all been clear of major illnesses that might affect the donation.   The only down side was that I am overweight. I thought that might get mentioned!  lol ! I was weighed and although my BMI (Body Mass Index) was just within the acceptable limit, the surgeon did advise I try to lose some weight.  My current weight would not hold up the operation, but if I could lose some then that would assist the  surgery and also my recovery afterwards.

I then saw one of the transplant nurses. She asked more questions re medical history etc and then organised some  tests:

Blood pressure
Blood taken for tests (about 8 tubes used)
Heart Trace
Chest X-ray.

  It was also explained to me that during the very strict and thorough evaluation process, at any stage they could find out I am not suitable as a donor, so I also have to prepare myself for the disappointment of not being able to help someone.

My biggest worry at the moment is losing weight. I have an under active thyroid which piled the weight on a few years ago and losing it  is extremely hard – I never used to have a problem with being able to control my weight, but now it is a real battle.  

Please Pray that I pass the evaluation process with flying colours.

My next appointment is April 17th when I see the doctor … regarding what exactly not too sure, will have to wait and see.