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Following several emails asking why I have stopped the evaluation process I just want to say it didn’t stop, I just stopped posting about it back in October as it was important to keep the confidentiality of recipient and donor.  I will post again after several months have passed when I will describe the rest of the evaluation and the donation – in the meantime please scroll down to the bottom of the home page of this blog to read the evaluation process from the start.  
EDIT: I took up posting again and you will find the full account. Links on the left or go to home page and scroll to the bottom to read from the start.
There are also plenty of good (I hope) links and pages on this blog to offer information regarding kidney donation.

If anyone is considering becoming a living donor and would like any information from a donors perspective then please get in contact with me via the contact page or just post a comment and I will get back to you.

Anyone wanting to donate, either non-directed or to a known person and would like some support from someone who has donated then please contact me via the contact form.

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71 Responses to “My evaluation to become an altruistic kidney donor”

  • Mary:

    I too had open because I had no choice. I would not recomend it. I had no complications, but why go through all that pain when you do not have to? Why spend so long in hospital when you can be home in two days? why spend months recouperating when you can be up and around in one month? Ken I am not sure why you call it a good experience when keyhole would have been better all around if there is a choice.

    A friend of mine donated 3 months ago with open surgery and still has pain in her side and around the hip area. She gets digestion problems with terrible gut ache which she never had before. She cannot do a lot of the things she used to yet and the doctor says could be another couple of months before she can. Not sure why anyone would recomend open surgery.

    Mary C.

  • Debbie:

    Mary I donated 6 months ago and still have discomfort. I don’t think it’s fair of you to say “not sure why anyone would recommend open surgery”. This is a forum to discuss things, not to impose your views or make anyone feel stupid for opting a certain style of surgery. Even I knew back then what I knew now, I’d still have went for open surgery. It’s just my personal preference.

  • Mary:

    Debbie,
    I have not gone out to make anyone feel stupid and I certainly am not imposing my views on people. If you feel stupid then I am afraid that is your interpretation, nothing to do with me. I stick by what I said. With all the pain that people talk about wiht open surgery I still do not know why they recomend it when they could have far less pain. I am a huge wimp when it comes to pain and no way would I recomend open surgery because of the pain. Now that is just MY view, just like you have YOUR view. Do not turn this into a personal battle because you don’t like my opinion. Maybe you can explain why you would recomend an operation that involves a lot of pain when you could have one that doesn’t? Yes it is your choice and I am interested to know why people would not only choose that method themselves but why they would recomend it when it involves a much longer stay in hospital, pain and discomfort for months on end when they could opt for an operation that has them out of hospital in 2 days, up and about in a month. Surely that is a simple enough question to put??

    As you so rightly said, this is a place to discuss and that is what I am doing. I am saying I do not know why anyone would recomend open surgery, because I don’t. That is my personal opinion. If you wish to discuss that then fine, but do not throw accusations around just because you have a different view to mine. So please tell me Debbie, why would you recomend an operation that takes four times as long to recover, gives pain for 6 months after when someone could have an operation where they are back to normal in a month? Lets discuss??

  • Giles:

    Hey ladies!! Calm down. I have to be honest Debbie I did not read anything bad in Mary’s posting. I read her comment about why would any one suggest having open surgery as a simple comment based on the rest of her posting about the pain. As I said in my earlier posting, I would not have chosen open surgery if I had a choice because of the pain and although I have not had the surgery yet, I will reserve the right to either recomend or not recomend afterwards, but I doubt I would recomend to be honest not unless the surgeons come up with some safety aspect that makes keyhole dangerous. I think Debbie you have misread into Mary’s posting something that is not there. Maybe we draw a line under this and leave things as they are – I just feel there has been misunderstandings and we do not want this getting into a war of words. That is the problem with the written word, there is no emotion behind it as there is with the spoken word. One can read into posts a variety of different intentions depending on how places the emphasis etc.

    Lets all just be friends.

    Ken still waiting to hear back from you.

    Giles

  • Diane:

    Hey gang, group hug! lol.

    Mary I think if you re read one of Debbies earlier postings you will see she chose open because she felt it safer than keyhole because of the larger incision. I believe in actual fact it is a safer method to use open simply because it is a quicker operation and with the larger incision there is more room to work in so less chance of something going wrong maybe. Keyhole takes different skills and is a longer operation. I don’t think any offense has been intended by anyone here, just a misunderstanding as to the way words are phrased.

    But hey guys and gals, here we are discussing the pros and cons of open or keyhole. There is another option. Now girls, I think I can safely place my bet to say you would both say a huge NO to this method – just read about this
    http://bit.ly/fRYRLK

    I think they can leave that part of my anatomy well and truly alone!!! lol

    Di
    xxx

  • Giles:

    That sounds quite horrible. Next they will be wanting to pull it out through a man’s thingumy whatsit!!

    Giles

  • Diane:

    hahaha ! oh my that made my eyes water thinking about it!

    Di
    x

  • Mary:

    OMG!!! Give me open surgery any day of the week than THAT method! That would give me nightmares I think! I know I have read that in USA some hospitals have just one single incision inside the tummy button through which they also remove the kidney so leaving absolutely no visible incision or scarring. What will they think of next, hahah!

    Mary

  • Jessica:

    Hello all,
    I had to laugh at that link. At the same time I was cringing. I think you are all marvellous for what you have done or are about to. I had a kidney from my brother three years ago and you cannot imagine how much it means to recipients to know there are people out there willing to give of their bodies to someone else. I cannot put into words exactly how much that means. Thank you all.
    My brother recovered well and was back to work in three months.
    Thank you all for the wonderful gift you have given people. Giving us a second chance of a good life is amazing.

    Thank you Di for doing this blog. Someone gave me the link for it as it inspired them so much they are now donating. They got their HTA approval yesterday. You know her as you supported her – Sheila?

    Thank you all so much.

    Jessica
    God Bless

  • Diane:

    Hello Jessica,
    Thank you for your kind words. We each have our own reasons for wanting to donate but I am also thankful to all the medical teams because without them and the people who discovered ways to do transplants, none of this would be possible.

    Sheila? Yes! I had to stop supporting her for a while due to my own ill health. But thankfully I got back to normal and was able to be there for her again. I had her good news waiting in my in box this morning. Maybe I will meet you one day it would be good to hear first hand what it is like to be a recipient.

    Di
    x

  • Jessica:

    Hi Di,
    I would love to meet up with you one day. Maybe once Sheila has donated and the weather is better we can all get together.

    Sheila said you had been unwell, I hope nothing too serious, but she did seem rather worried about you. Glad to hear you are better now. Keep up the good work. I am sure you have been an inspiration to a lot of people. Can I contact you through Sheila? Would like to discuss an idea with you.

    Jessica
    God Bless

  • Diane:

    Hi Jessica,
    Yes, of course you can contact me, just use the contact form on this blog, link top right of the page, then we can get together via email. I am intrigued as to what your idea is.

    Yes I am well now thank you, things just got a bit too much for me for a while and I had to back away from committments for a while. I had some wonderful support from people like Sheila and life now is great.

    I am going on holiday in May so hopefully we can all get together June or July. BBQ time I think!! Hey it would be nice if say there was a regular get to gether in the area for people, for donors and recipients and those waiting, just informal – meal out sort of thing, what do you think?

    Di
    xx

  • Diane:

    Giles,
    I will try to answer the question you put to Ken.

    From the research I did and also speaking with two men who had testicle discomfort.

    One of the men said all they were told was that there could be swelling in the testicle and pain which will subside. That sometimes the blood flow to the testicle gets cut off and that has to get back to normal. To wear support briefs, not baggy boxers and most of the pain should go with support. Its gravity taking over that is not good! One guy had swelling for around a month. I am not sure how normal or not that is. The pain initially was excrutiating I have been told, but the support briefs helped greatly. One guy said when he got home he wore a “pouch” which was even better as he could alter the amount of support it gave.

    My research showed that if you have had a vasectomy then you are more likely to get testicular swelling and pain, but both men I spoke with had not had a vascectomy. I don’t think this is the norm but rather the exception.

    Giles suggest you speak to your surgeon or co-ordinator more about this and learn exactly why it can happen, what can be done to prevent it and what the heck do you do if it does happen to you!! Maybe you need to wear support briefs anyway, just in case! Let us know what you find out.

    Maybe Ken will post and tell us what he was told !? Or any man out there who reads this that it has happened to?

    Would also be nice if someone from a Living Donor programme could post?? Or any professional who knows about these things?

    Di
    xx

  • Jessica:

    Hi Di,
    Have sent you a contact message.
    Shelia says you used to have a forum, would it be helpful if as a recipient I joined?

    Jessica
    God Bless

  • Diane:

    Hi Jess,
    Got your message and will email fully later when a bit more time. Yes we did and do have a forum. It ended up with so many spam comments when I was off with ill health that it took ages to clean it all up. So now I have made it a private forum and another donor actually runs it for me. If you use the contact form (link top of page) then she will sign you up.

    Di
    xx

  • Debbie:

    My spologies, perhaps I read things and gotten them slightly misconstrued.

    To answer your questioon. I chose open surgery for the following reasons:

    1.) I simply do not trust keyhole.
    2.) Not all surgeons are able to do open and keyhole surgery. The only surgeon I met whom I trusted with my life could only do open surgery.
    3.) I didn’t want several little scars all over my abdomen.
    4.) As ridiculous as it sounds, I wanted one big scar I could look at every day and be proud of. And that’s exactly what I’ve got.

    One of my friends went into hospital recently to have an infected bit of kidney removed via keyhole surgery. An artery was nicked accidentally and my friend almost died on the table. She received 3 full blood transfusions and the surgeon had his hands inside her abdomen to try and stem the flow of blood.

    As far as i’m concerned, if you have one big incision and can see what you’re doing, it leaves less room for error.

    I apologise if I offended you in any way Mary, i clearly mis-interpreted what you were saying.

    I personally would risk having more pain and a slightly longer recovery than have something going wrong.

    However, I must point out, that at the time of my surgery, I was 24, extremely fit, had no children and had no worries in regards to time off work. I may have been swayed in my choice had I needed to be able to be back up and about sooner rather than later.

    Di, I seen that method before, over my dead body would they be removing it via my lady bits :-D xxx

  • Mary:

    Debbie,
    No problem …. it is easy to misunderstand the written word. I understand your point of view. Interesting how we can all have different views based on what we know and history etc. The thought of a huge incision and someones hands rummaging away inside me just freaks me out for some reason, bit like a horror movie! hee. Little scars with instruments, even if not safer, somehow sounded less intrusive, less scary to me. But I had no choice in which type of operation I had. I would have chosen keyhole for three reasons, one I have just given – it gives me less nightmares, lol; secondly I run my own business and a lot of money was lost due to my time off work and thirdly I am a huge wimp when it comes to pain and anything to make that less. I can see why you prefer the open though.

    I still have nightmares over my surgery. Didn’t help I suppose watching a video of open surgery a month before!

    It is a shame there is no clear cut winner with the different methods as would make life far easier all around.

    Di you had keyhole, were there any aspects of it that you did not like and thought maybe you should have had open?

    Mary

  • Diane:

    Hi Mary,
    Although I was given a choice of keyhole or open, I have to admit the surgeon was all for keyhole and I was happy to go that route. He was the top surgeon in the hospital and very experienced at keyhole and transplants, so I did have full confidence in his ability. In fact I had full confidence in the whole team, if I had not, I would not have donated. Also I felt it unfair on my family to put them through any more worry than they would already be going through. I mean I was not ill and I was not giving the kidney to a relative or loved one, so I felt it a bit unfair to put them through any more than I had to simply because I was doing something I wanted to do but was not essential and especially as the recovery period greatly affected them and their lives also. Had I felt, though, that open would have been better then maybe I would have thought differently. Hindsight is a wonderful thing .. but can also confuse, lol!

    But having had keyhole there was nothing about it that I did not like or made me think I wish I had open. Everything really went well. I had a slight surface infection when one stitch broke through but that could have happened with open also. Salt water washing soon got rid of it. Had something gone wrong, then no doubt I would wish I had open instead.

    Given the choice again, I would still go for keyhole simply because nothing went wrong and because of my family – I would feel guilty the whole time I was needing their support and help. Had I been donating to a loved one, that may have been different because they would have been part of our family circle, I really don’t know. After the event there is always more knowledge so hard to know what one would have decided sometimes given different circumstances. I just know I was very happy with the way things went.

    Di
    xx

  • Mary:

    Thanks everyone for comments. Interesting subject. Someone I met in hospital is donating they are waiting permission now. They have chosed keyhole because of the quick recovery time as they can then get back to caring for their family.

    Giles I will wait to hear your posting about how your donation went. Succes to both you and the recipient.

    Mary

  • Tony:

    Ken,
    Can you confirm what Diane has said re the question Giles asked you? I would be very interested to hear whether you experienced that at all.

  • Diane:

    Hi all,
    Just letting you all know that my choice to donate, and consequences for my son, is the subject of a 30 minute interview with the well known reporter Michael Buerk. Might make interesting listening. Radio 4 The Choice on Tuesday 31st May at 9:00am repeated at 9:30pm and I believe then available for 7 days on iplayer. We did 1.5 hours of recording altogether which then had to be edited down to 25/30 minutes so not too sure how it is going to come across but ….it was certainly fun doing the progamme and meeting Michael Buerk who I have had tremendous admiration for many years.
    Di

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