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Posts Tagged ‘living kidney donation’

A full in depth account of being a Living Kidney Donor can be found here. From my decision to donate, risks of living with one kidney to the risks of donating a kidney. My emotions along the way and why I donated. The evaluation tests involved in being a living kidney donor and what I thought of them! The frustrations and sadness and finally joy of finding a recipient for my kidney. The final pre-donation tests that gave me a sleepless night or two right up until the day before the kidney operation! Then the day of the operation to remove my kidney together with recovery after the kidney donation, in hospital as well as back home.

A lot of useful advice is also given in the comments section of the post, so they are worth reading also.

Please either scroll to the bottom of this page or use the links on the left to read about the different stages of kidney donation. The links across the top of the page also give an insight into my reasons for donating a kidney plus some useful links on the subject.

If anyone has any questions regarding the donation process or how I felt about any aspect of it, then please do post a comment or if you prefer contact me via the contact page (link at top of page).

One thing I will say is that if I could do this all over again I would without hesitation.
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Evaluation process to be a Living Kidney Donor – finding a recipient – laparascopic surgery to remove kidney – my recovery

Even though the process was not without its frustrations and last minute blips – I would not hesitate to donate a kidney all over again if I could.
For anyone considering donating a kidney, whether to a relative or friend or to a stranger, the majority of this blog would apply. I have been as honest as I can and not just put a glossy cover on it all.  The events are as they happened and my feelings and thoughts at the time. I hope this blog will enlighten some people as to the process of donating a kidney. It has been a great learning experience for myself as well. Spending so much time with people who have kidney problems and speaking to patients on dialysis or just having had a transplant, and speaking with their families ….. it has opened my eyes even more to the fact more organ donors are needed.  There was nothing in my evaluation or the operation or recovery process that put me off having donated.

Through this journey I have met people on dialysis and they are not living a life, they are surviving a life. Dialysis is life support. Without it they will die – with it they are alive but the quality of life for them and their families is not the sort of life anyone should have to live. They do for years.  Once I knew it was possible to give someone and their family back their life it was just something that, God willing,  I was determined to do.

I also want to thank everyone working at the transplant unit. Everyone was great and made this whole experience good. There was always a smile and more than that, everyone had time for me. I was never made to feel rushed. When it came time for the operation itself I was made to feel very relaxed and the after care was brilliant.

Please scroll down to read my account of being a kidney donor. The first posts are at the bottom of the blog, the latest just below this posting.

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My Recovery at Home

I was allowed home 2 days after the operation. The journey home was okay. Couldn’t really avoid all the bumps and potholes in the road so had to support my abdomen during the journey. It was good to be home. Own bed, own bathroom etc. Couldn’t keep my eyes open so had not been home for long before went up to bed. Now of course, my bed does not raise up like the hospital one. So with great effort I got onto the bed at a sort of an angle and then couldn’t move, lol. The pain in my abdomen was intense. Oh well – I just stayed there on the bed sort of laying across it – and went to sleep. Woke about 5am feeling refreshed and wanting the bathroom, but quite a battle to get out of bed. took around 10 minutes trying to work out the least painful way.

Decided that the next night I would sleep with lots of pillows behind me so my upper half is already raised, just like the hospital bed was. It would then be much easier getting in and out of bed as would not have to use my abdominal muscles as much.

In myself I felt very well. Still bloated which was uncomfortable rather than anything else so hopefully the extra 4 kilos would go soon. I got tired very very quickly. In fact I had only been up for around 3 hours and was walking back from the kitchen with a cup of tea and almost dropped it as I found my eyes closing as I walked. The tiredness just came out the blue!! I know I was told I would feel tired, but I was not sure if that meant bodily tired i.e. no energy, or tired in wanting to go to sleep. Now I know. I had to go back upstairs and get some sleep. I arranged the pillows so they were like a backrest. I have a memory foam mattress which is bliss. I could get into bed a lot easier now with little pain. I got a good hours sleep and woke refreshed. Around 3pm the same thing happened and I found my eyes just would not stay open, so got another hours sleep. I must say the first four or five days was like this. Suddenly feeling sleepy when I had only been up a few hours. I didn’t fight it as I knew my body needed the rest. I was also going up to bed around 7pm or 8pm in the evenings. I actually felt more comfortable laying propped up in bed than sitting in the chair downstairs, which squashed my abdomen up a bit and was uncomfortable. I had very good night sleep for the first week, most nights not waking at all until the morning. Pre operation I would wake about 3 or 4 times needing the bathroom. I also found that sleeping with my upper half propped up I could breathe a lot easier as well which I am sure aided a good night sleep. In fact I have continued to sleep propped up and find it much better than laying flat in bed. When I have saved the money I may just invest in a bed where I can raise the back up. I am surprised at the difference in quality of sleep I get this way.

The first week was obviously the hardest as I was not allowed to do much and I felt tired so quickly throughout the day and there was a bit of pain when I walked or used my lower abdomen. For some reason the first couple of days I forgot about the pain medication. Duh! After that I took it and made sure I took enough. Although I still had some pain, it was not troublesome. In fact I was quite pleased I had a little bit of pain as it reminded me to take things easy. I enjoyed being spoilt and looked after the first week!

Some people get no pain at all. I believe the only reason I got pain was because I am overweight and the pressure of a tummy “overhang” on the incision area coupled with gravity pulling down on it when I walked, just aggravated everything! If you picture walking with a bowl of jelly ….?? Yup I think you have the picture!  If I held in my abdomen muscles which then supported the incision area, then I had no pain at all when I walked. Of course remembering to take the pain medication would have helped!

Once 10 days had passed then I noticed a quicker improvement. I was not sleepy during the day any more, although I did physically get tired. It was quite some time before energy levels restored themselves. Incisions were healing nicely and everything was just great.

I also heard that the recipient was doing excellently well! That is the best news of all. Wonderful!

Recovery continued and things are great.  It has been a while since the evaluation finished in October 2009  and some time since kidney donation, so I hope I have remembered everything, I did make notes at the time but not always. Anyway I hope this blog gives a good insight into the process of becoming an Living  kidney donor and the actual donation process itself. I know if I had another spare kidney I would do it all again without hesitation.

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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

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.

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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.

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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 »

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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.

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Kidney donation – altruistic

February 3rd

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.

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