The purpose of this interview was to make sure that I understood what I was offering to do and that I was not doing this under any sort of coersion. Was not being offered money or any incentive to donate. They also needed to know there was not any underlying mental conditions that could adversely affect my decision making . That I was donating for the right reasons and my life was stable etc etc.
The interview lasted around an hour and basically we just chatted. The doctor asked me about my childhood and schooldays … also about my time while growing up and then questions about my family life past and present. I was also, of course, asked why I wanted to donate. She probed further and asked me how I would feel if say the operation presented problems … if something went wrong – how would I cope. How did I feel about never knowing who the recipient is? Would that bother me. I explained to her that just knowing they were living a better life and enjoying doing things again was plenty to make me smile. I think at the end of our chat she could see that I was a strong person mentally, knew my own mind and had made my decision freely with no coersion from anyone or payment and with full understanding of the whole procedure and risks etc etc.
It is a bit nerve-wracking knowing you are going to be quizzed by a psychiatrist. All one can do is say things as they are.
The doctor had no more questions and asked if I had any. I said I just had one … “Had I passed!” …. lol …. she said there was nothing untoward in our discussions – nothing that would make her query my decision. She would write up her report and send it to those concerned and a copy to me.
Couple of days ago I wrote to the Transplant Nurse Specialist and asked her to remind me of what happens next. We are so near now. I did chat with her a few weeks ago about what happens once the evaluation tests are done – but I never wrote anything down, so I am in a muddle as to what order things happen next. So look forward to her response.
A Glomerular Filtration Rate (GFR) measures how well kidneys filter your blood. A lovely radiologist called Sarah greeted me. My weight and height were taken. Sarah put a canular into my left arm. It is from this that the blood samples will be taken. A small amount of Heparin was used to stop any blood clotting in the canular which would interfere with the drawing of the samples.
In my right arm she put a “butterfly IV canular” into which she injected a very small amount of special radioactive tracer (probably less radioactive amount than having a normal x-ray). The canular in my right arm was then removed. Read the rest of this entry »
I was challenged recently to try to explain what drives me to donating to a stranger and what is in it for me. If I were paid a large sum of money, then that could be understood as to the motives behind this. But with no apparent benefit – then why do it? Very good question and not always easy to answer.
Why do people decide to sail around the world or climb the highest mountains in the most atrocious of conditions? They are hailed as Explorers and record breakers and daring and brave! Who have they benefited by doing those things? Don’t get me wrong, they are courageous and brave and have pushed the boundaries of what the body can endure to the limit and beyond and I have great admiration for them. Why then when we decide to help someone lead a better life, we are often viewed as … crazy!
Why do we do anything though? Emotions drive us either to do something or not do something. Emotions that just seem to spring from nowhere.
Sometimes the drive inside us is so strong we just can’t ignore it. I had such a desire inside me to offer one of my kidneys to someone who needed one. That desire just grew over time. I knew it was something I really wanted to do. Having said that, I did not go into this blindly. Even though my heart kept telling me this was something I wanted to do, reality also told me to investigate this, really look into it and then decide whether heart or head wins! I found nothing to dissuade me from doing this … so my heart won.
What do I get out of donating? I do agree that whenever we give, we do also receive, whether it is a great sense of satisfaction or disappointment should something go wrong.
Read the rest of this entry »
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 http://www.uktransplant.org.uk/ukt/statistics/statistics.jsp
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.
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 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 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.
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.
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 ….
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.
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. Read the rest of this entry »
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
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 taken for tests (about 8 tubes used)
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.
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