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It was at a family event in 2006 when I heard the first whisper that my brother Tim had kidney disease and would need a transplant one day.  My immediate thought was that this had my name on it.  It was not until early 2012 that this was mentioned again – his eGFR (whatever that was!) had deteriorated to the high teens, and he had been advised to find a donor if he could; I just felt that my time had come. We are from a large family and I knew that I was the right blood group. I think five of us volunteered but one was in Canada, one was the wrong blood group and one was not a blood relative, so two brothers went for tissue typing and we were both perfect matches (which is unusual). Since I was retired and that other brother runs a company with Tim, it was obvious to both of us that I should go first through the rest of the testing.

In truth I don’t think that many people outside of Tim’s immediate family realised just how ill he was getting. It is only since the operation that we have not only seen the change in him back to his old self, but also he has said that he “can hardly begin to describe” how well he feels, so I think he’s surprised as well.

There are lots of tests, as described in my blog and elsewhere. There is no standard set and each transplant centre will be slightly different; Tim lives in London and I live in Oxford but I had no real desire to travel that far to his hospital frequently and it was agreed that the Churchill Hospital, my local transplant centre, would do the initial tests.  These covered blood pressure, urine samples, blood samples (every time!), ECG, ultrasound, CT scan, chest X-ray plus a couple of less well-known ones to measure my eGFR and do another sort of scan on my renal system.  There’s nothing in there to worry or cause pain, and I found the entire process really quite interesting.  There are also a few interviews so that they know a bit more about you and your medical history. During the whole testing process I felt that these people really seemed to value me for my commitment, but at the same time I knew that I always had an option to bail out with no reason needed for my change of mind. I was actually surprised as I continually passed each test – clearly I was fitter than I realized.

Eventually, Tim’s quality of life had deteriorated to such an extent that they agreed the operation could be scheduled. His eGFR still said that he was fairly healthy but he was in fact barely existing. What I didn’t realise was that if a donation had not been planned then they would have already been making preparations for him to be on some form of dialysis. This is seriously not nice for a patient as it effectively imposes a new, highly restrictive lifestyle on them, quite apart from being one of the factors that may limit the life of a transplanted kidney. Had I failed testing at this stage, Tim would have had to go on dialysis as a matter of urgency.

At this stage it all got even more interesting as we met the surgeon from St Georges who was in overall charge and would actually remove my kidney (she wouldn’t do Tim as well because the two operations are conducted concurrently in adjoining theatres, with me leading). The date was set and things moved up a gear. There were some final tests and the HTA interview and, almost before we knew it, we were arriving for admission on an October Tuesday morning.

The day was spent on tests, interviews and forms and actually went quite quickly. Once again the staff were brilliant and sensitive to our needs. After our spouses had left, Tim and I soon went to bed, aware very much of the big day ahead. On the Wednesday morning I was showered, changed and ready to go with my DVT stockings on by 7am (these stockings have a hole in the toe so that they can check your toes during the operation as this is a useful monitor of your condition).  At 8am I walked up to the anaesthetist’s room between the two theatres and the next thing I knew I was in Recovery, being told “wake up, it’s all gone very well”. (Later on, phrases like “textbook operation” were mentioned.) I was soon decently conscious but woozy, a bit uncomfortable but not in pain. Soon after, Tim was wheeled in beside me and I was sure from the large bag of urine that at least the new kidney was working well already. It was then around 3pm, and I had actually been operated on from about 9am to 1pm; Tim was in from about 12 to 2.30, I believe. By 4pm I was back on the ward with my wife, surrounded by lots of tubes and wires. That night was pretty uncomfortable as I never really got to sleep properly; I was continually itchy and aware of the tubes and the annoying toe holes in the surgical stockings! Additionally every movement was potentially a muscular pain – even a gentle stretch to reach something like my water.

After the ward round the next morning (Thursday) I was removed from all the tubes except a drain from my wounds. This gave me an almost instant improvement as the general wooziness and the itching were, I believe, side effects of the morphine that I had been on. A price worth paying for freedom from pain, I suppose, but from now on all I had was paracetamol. Soon after that I stood up for the first time and walked down the corridor to see Tim who was looking better than for a long time. It was around then that I realized that my movement was improving and there was now very little pain at all; there was just an ache from my stomach, largely due to gas pressure inside pushing on the wounds. Visitors came and went, amidst much happiness from Tim’s family, who could see his change much more than I could. They really didn’t need to thank me for what I had done as I could see what it meant from the joyous look on their faces.

I then got another bad night’s sleep which included me getting a temperature, having some blood taken at midnight, going for a chest X-ray at 2am and then having some antibiotic at 4am to sort out a minor chest infection. By the Friday ward round at 9.30 my temperature was down to normal and the consultant declared that in his view I would do much better staying locally than in the hospital so I was discharged. A variety of visits and actions followed, one of which was the “pain nurse”:

“Hello, I’m the pain nurse. On a scale of 1 to 4 how bad is your pain?”

“Er well, actually I don’t think it even rates a 1. Is 0.2 an option?”

“Are you sure?”

“Well, last year I had a needle stuck in my upper lip for two minutes to give me a local. I reckon that was a 10 out of 10, and on that scale this is nothing.”

<Exits>

And so I walked out to our car at 1pm, only 48 hours after leaving the theatre.  Jane was clutching my large bag of medications, one of which was the rest of a course of antibiotic for the earlier chest infection. I was leaning forward gently as I walked but otherwise there were no outward signs of what had taken place. We spent the next few days locally with a brother who is a retired GP and then returned on the Tuesday for some quick tests and a check with the surgeon. She pronounced herself very happy with my progress and the healing to date, and reckoned that I was very fit (for my age?) and also had a high pain threshold. We immediately left to come back home to Oxfordshire where my recovery has continued apace. I know that I have had an easy ride, leaving hospital in record time with no pain; I am only having trouble reminding myself that it is still early days and I must not overdo things, despite how well I feel.

Meanwhile, we had visited Tim on both Saturday and Sunday. By then he was looking really good – literally “in the pink”, sparkling blue eyes and able to think clearly without feeling tired, with no headaches or other aches as he had become accustomed. Tim was discharged on the Monday, and it is now the following weekend.  He has just sent out an e-mail saying:

“It may well be an old cliche, but in this instance it is not. The last 9 days have been life changing. Yesterday morning we had to get up at 7 for a hospital appointment, and I woke my wife up. There is absolutely nothing strange in that, except for the past 18 months that has never happened. Previously after 8 hours solid sleep, a cup of tea would arrive to wake me and 40 minutes later I would be able to keep my eyes open. After waking up every morning with pain in my legs, back, chest or neck (or even all 4) and heavy limbs it is a pleasure to lie in bed at ease in my own body with no pain – it has all gone overnight. And that is with a 12″ long cut across my lower stomach.

Sometimes transplants take a few days to ‘wake up’ once they have been done. No such thing with the legend of Matthew’s kidney: overdrive from the first minute…”

The surgeon told me that on Saturday she had asked him how he felt, and he had replied “I cannot start to tell you how much better I feel already”. If I had wanted any thanks at all, that was it, and the sense of satisfaction at a “job well done” was immense.

**********

I have a number of tips for any Potential Kidney Donors (PLDs) out there who wish to donate to someone they know (not all tips will apply if you donate to a stranger). Some of these I learned early on in the process, but others it was too late when I realised what I should have been doing, so you might benefit from my mistakes.

  1. Be positive. Make your decision to donate up front, and stick to it. This will make the process flow more  easily as the staff will recognise your commitment; moreover, it will  encourage your recipient when he/she starts to feel guilty about putting  you through this.
  2. Get fitter. It’s a long process of  approval, so use the time to improve your physical fitness (especially  your abdomen) before the operation.  This will help the surgeon and  aid your recovery.
  3. Take charge of the testing  process.  If you think you’ve already done a planned test, don’t be  afraid to question the need for a repeat (I avoided at least one chest  X-Ray, one ECG and a long walk around the hospital by asking).  Never  leave hospital without knowing what the next step is, or who will tell  you, and when. Phone them for test results, as they tend to operate on a “no  news is good news” policy.
  4. If in doubt about anything, phone the  Transplant Co-Ordinator. This will show that you are interested and  committed. I felt that each time I phoned that I was re-volunteering to  donate; they don’t want to be seen to put any pressure on you!
  5. Get some ear plugs for the operation. An  eye mask and lip salve may also be useful, but the ear plugs really were  essential for me. At least when I had trouble sleeping, it wasn’t due to  the noise!
  6. Always take a book to testing  appointments. You never know how long you will be.
  7. Research the internet with care. I found  that a lot of stuff on the internet is either/both from the USA and/or out      of date – things have moved on so fast in recent times that anything dated  before about 2005 is hardly worth reading. Don’t be scared by stories of  horrible procedures removing a rib to access the kidney which took the  donor longer to recover than the recipient; this is a prehistoric practice      and is NOT how it’s done now.
  8. Help your recipient.  He/she may  actually be more ill than you realize, and so will just not be able to do  much research on the internet (Tim “worked” in a tired haze and then went  home to sleep).  Do some research for him/her as well, and don’t  assume that they have a good knowledge of the operation and the time after  – check up on what they know so that you can help them.
  9. Feel valued. Each transplant costs about  the same as a year’s dialysis so every PLD has a real financial value to  the NHS. If the transplanted kidney works for 10 years then you will have  probably saved the NHS between £300,000 and £400,000 according to the      figures I was told
  10. Think of the wider effects. I was  honestly surprised by the impact on my brother’s family; they were the  ones who had seen him deteriorate close-up, and the effect on them was  wonderful (and emotional). Also, people in his church who I have never met  have sent me messages of thanks. It really gets to me, this sort of thing.  As I said a few days ago here, the Gift of Life is not just to the recipient      but it goes far wider than that. It’s the best thing I have ever done and  I’d do it again if I could.
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60 Responses to “Donated to brother”

  • Further to my entry above, it’s now almost six weeks after the operations and both Tim and I are doing really well. As far as I am concerned I am back to normal but I am taking things gently and not over-doing it – so no lifting, running around or going up ladders!

    I wouldn’t want to mislead people about pain. I have been speaking to the transplant nurse who says that you just cannot predict it – some people like me suffer no real pain at all yet others suffer agonies, even though we’ve had exactly the same treatment from the same surgeons. So, I’m not alone in being pain-free, but I’m aware that there are lots of donors out there who might have exactly the opposite experience and I’m sorry for you.

  • Julia:

    Could you tell me what your kidney function was before you decided to donate and whether by donating the kidney you will be running into renal failure in 10 years time? I am considering donating to a brother and the “risk talk” has put me off somewhat as it looks as if halving my kidney fuction will lead me into stage 3 renal failure by the time I am 70. This I find a bit scary. I am 59 at the moment, I have 83% kidney function,in all the literature and info online I have seen no numbers are mentioned and yet the Doctor I saw said I had to do the maths. You lose 1% kidney function each year.

  • My actual GFR was 82% before with eGFR measured in the 70s (it seemed to vary a lot). After the op my eGFR was 44% and this rose to 50% after seven weeks. I expect it to have risen some more when I have my next check which is to be six months after the last. My brother’s eGFR is now 48% which is the highest it has been for about 8 years, and it is still rising!

    Frankly I do not recall any such “risk talk”, nor do I recognise the figure of losing 1% of kidney function per year. They would not let you donate if they thought there was any predictable possibility of suffering renal failure, which is why the tests are so thorough. There is of course a risk of renal failure but it really is very small. NB the stages of renal failure are defined not only by your GFR but also whether you are showing symptoms of renal failure, so, although my eGFR is technically showing Stage 3, my health says otherwise and so I’m not ill!

    You might like to read this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3812927/ which seems a good summary of studies into the risks and long term outcomes.

    Donating a kidney to Tim is probably the best thing I’ve ever done – to see him back to his bubbly energetic self is well worth it, after years of him being tired and unable to do more than survive another day. It really is the Gift of Life

  • Diane:

    Hi Julia,
    I agree totally with Matthew, there is a lot more to kidney “failure” than the GFR reading. According to the NHS (and this can be found on the NHS website, so in the public domain) “Less than 1% of people with stage three kidney disease develop kidney failure. ” = Less than 1% – that is an exceptionally low risk. A kidney function on the low side does not necessarily mean it is not performing sufficiently.

    As for my kidney function, I am not at home so do not have the figures with me. But at my year 3 check up (last year aged 61) when I was sent all the results, which were also sent to my doctor, the covering letter from the transplant unit said that my kidney function was as good as it was before I donated. Now that to me is success 🙂 – and no 1% reduction per year so far.

    1 in 3 kidney transplants are from live donors. Doctors are not going to allow people to donate if that was a noticeable risk for them. Of course there are risks, but they are minimal.

    Be careful where you do your research. There are some scaremongering sites out there and quite a few with totally wrong information. Go direct to the NHSBT and check out all the information they have on live kidney donation.

    I cannot understand your doctor telling you that you lose 1% of kidney function every year and to go do the maths. Sounds like he is telling you not to donate, which does not make sense. Yes our kidneys must decline over the years, just as most of our organs do. This has to vary person to person. My mum died at the age of 99 and her kidneys worked fine. yes they had declined over the years, and she had reduced function, but nothing to cause any medication or anything else to be administered. :).

    Yes there are risks …. very minimal ….. if they were major risks then people would not put themselves forward to donate like they do now as past results would speak for themselves. 1 in 3 kidney donations is from a live donor.

    Di
    x

  • Melissa:

    I donated to my sister 15 years ago when I was 53 years old. I have my kidney function checked each year. I cannot tell you the percentage only that the doctors are more than happy with how my remaining kidney is performing. I do know that it is more than the eGFR that should be taken into account when determining whether the kidney is struggling.

    If the eGFR is such that the doctors are concerned the tests should be repeated in 3 months time as a urinary infection can affect readings, as can other aspects.
    Other tests

    A number of other tests are also used to assess the levels of damage to your kidneys. These are outlined below but there could be others as well:

    urine tests – used to see whether there is blood or protein in your urine.

    kidney scans, such as an ultrasound scan, a magnetic resonance imaging (MRI) scan or a computerised tomography (CT) scan – used to find out whether there are any unusual blockages in your urine flow. In cases of advanced kidney disease, the kidneys are shrunken and have an uneven shape

    kidney biopsy – a small sample of kidney tissue is taken so that the cells can be examined under a microscope for damage.

    The eGFR on its own is not a 100% indication of a kidney that is causing problems.

    Regards
    Mel

  • Sally:

    Hi I’m 4 weeks after donating to a friend. It has not all been plain sailing,and we have both had our up’s and downs.
    I would have found it helpful to have spoken to folks who had donated,and maybe of had a buddy,to talk to during the last 4 weeks.I know each one of us has a different story,and each hospital is different.I would like to say I had brilliant care in the city hospital Nottingham,and the Pain doctors kept my pain well under control.

  • Diane:

    Hi Sally
    thanks for posting about your experience. What a shame you didn’t find this website sooner as plenty of folks to talk to – and in your area also. But how wonderful you have donated to your friend. I hope the downs are not so down now and you are both feeling a lot better.
    All the best
    Di
    xx

  • katherine:

    Hi there,
    just wanted to thankyou all for your posts.
    Im 24 years old and am undergoing tests to be a potential donor to my father who is 53. He has PKD disease and had received a kidney from my grandma 10 years ago and unfortunately that is no longer working for him and has been back on dialysis for about 2 years now. I hate seeing him struggle with day to day life. On Tuesday we are both going to Addenbrookes hospital to have some genetic testing to make sure there is no sign of me developing the disease. Iv had a couple of scans and there are no signs of any abnormalities although my sister who is 26 years old has received the bad news that she has inherited the disease. Because of my age they want to carry out the genetic tests to be sure there are no abnormalities there before continuing with the original tests to donate.
    I love reading the stories out there like the one above where you feel amazing for helping a loved one, but I also agree there is also a lot of scaremongering ones out there too. and a lot from America.
    I am scared of death and im scared of my future of being able to have children.

    Katherine x

  • Diane:

    Hi Katherine,
    Sorry I am a day late in approving your post, but just back from holiday and I forgot to take any website login with me, so could not approve any postings!

    Fingers crossed that your tests show you are free from the disease and that you will be good match for your father.

    If the tests show you are ok re the disease, does that mean you defo won’t get it? at least not through it passing down through the family?

    I have to show my ignorance on this. I keep meaning to read up more on why people need a new kidney, especially those with inherited conditions.

    If your tests show you are free from the disease, going by your comment re children, would that mean they would not inherit it, or they still could even if you haven’t ? Sorry if I am getting too personal with my questions!

    There are so many things in life to be scared of. I have to admit I am not so much scared of death but of how I will die!! I am hoping my Faith will see me through when the time comes.

    Please post back and let us know how you get on with the potential donation etc. Any questions do just post here or pop me private contct if you prefer (link top right of page)

    Thanks for making contact

    All the very best
    Di
    xx

  • Dolores:

    Hi everyone, just want to say a big thanks to all of you for your comments and especially to Matthew C. In four weeks time I am going to donate my kidney to my sister and although I know there is nothing to worry about, I did feel a bit apprehensive. However, you have all restored my confidence. Very best wishes to all of you and may you all live long and happy lives!
    Thank you!

  • Hi Dolores

    I wish you all the best, and that your recovery is as good as mine. I had wonderful care at St George’s, and I really felt that I was kept safe the whole time. My brother really got his life back, and his family got their Dad back, so I will never regret it. Just take it easy on the recovery!

    If you have any last minute questions, please do ask here or on my blog

    Matthew

  • I am 46 and I am in the very early statages of trying to see if I will be able to donated a kidney to my brother who is 48. I am seeing how long the process is going and not sure how much longer he’s kidney will last. We live in two different states which makes it so much harder. I have been told I will have to make several trips out to new York from Kansas formore testing. I am a stay at home mom with a 9 and10 year old. So although all the trips will be a challenge lots of friends and family are stepping up to help watch the kids (one of my trips for testing will two weeks) I am glad for everyone sharing their experience of surgery and the process it has been very helpful and reassuring. Lisa

  • Diane:

    Hi Lisa,
    Thank you so much for sharing your story with us. I know only the early days for you and your brother but my Prayers are with you both.

    Can you not press to have some of the tests done in a local hospital?

    Please keep in touch and feel free to post any time or if you just wanted a chat you can contact me direct via the contact link top of page. Sometimes its good to just chat to someone who knows what you are talking about 🙂 🙂

    All the best
    Di
    x

  • I had my urinalysis test come back with protein in it. Which makes no sense because my blood work came back great and my kidney sonagram was good. They are are having me do a 24 hour urinalysis test. I feel really bad that I have to do another test which is going to take longer for my brother to get his new kidney.his kidney function is at 10% I don’t have time for I am sorry I don’t what to say to that.I am feeling I am sorry that my test results are what they are. But I am positive we will figure it out and go on to the next step. And I hope it will go a little smother after this.thanks again for everyone’s support and sharing their experiences

  • Diane:

    Hi Lisa,
    I feel for you with the frustration of all this.
    It is not unusual for urine results to show different to blood results as both are different functions. Protein can built up in the kidney and so show in urine.

    The 24 hour test will be good as it will show a longer term result than an “on the spot” one 🙂

    I speak for a lot of hospitals when I say the health of the donor is paramount to them. They will be doing major surgery on someone who does not need it 🙂 but wishes it. There is a big difference. It does lead to frustrating times though for the potential donor .. yourself.

    Please try not to stress or worry too much – things will happen when they do. All you can do really is try and get asap appointments for tests etc, other than that it is all in the hands of the doctors.

    Be strong …. stay calm …. easy said I know 🙂 ….

    Let us know how the 24 test goes.

    All the best
    Di
    x

  • Thanks for your quick response. I am so worried about my my brother. And I will feel so helpless if I can’t can’t help him. And I have lost lots of sleep over this. Now one knows the emotions we go through. Our sister has pkd my other brother has it and my last brother has never been tested but he has a inlarged heart .I am his best hope and I won’t to to do it for him. We are only two years apart and we have too many stories together to let me at 46 and him 48 years old die.

  • Diane:

    Hi Lisa, is your brother on dialysis?

    you need to keep calm if you can so any health checks you have are at their best.

    Wishing you all the best
    Di
    x

  • No my brother is not on dialysis yet but I am worried he will have to do that before I am even able to get through all these test. That is he’s worst fear and I didn’t won’t to see him have to that. But I am trying to stay calm because I won’t to help him so much. I can only do what I can and I am doing everything a possible.

  • Diane:

    Hi Lisa,
    Please try and stay positive. I know dialysis is far from ideal BUT … it is there …. it is what makes the half empty glass half full when needed.

    From all the many many donors and recipients i have spoken to over the years …. however much they have hated the idea of dialysis – it has also been a tower of strength for their “hope” as it is there for the recipient to go on if needed. So try and turn your thoughts about dialysis into positive ones – I know not easy … but it will greatly help. If there was no dialysis …. except there is and however much your brother hates the idea …. it is the difference between half empty and half full cup 🙂 🙂

    All the very best
    Di
    xxx

  • Thanks for the positive feedback. And i will stay positive. I got the 24 hour urinalysis test back and the results were great! happy to say I am able to go to the next test. Which will be the blood tissue match. Hopefully will be able to do that Monday. My brother is going this week for more blood work to find out were his kidneys are functioning at. Thanks so much for your support and I will keep you informed .

  • Diane:

    So pleased the results are ok. Brilliant! 🙂

  • I will be going out
    to new York for my two day testing on June 26 and 27. I am also moving to another state at the end of June and vacation to south Carolina for the first two weeks of July. Then my kids will start their new school mid August. A have alot going on right now. But for the most part my thoughts are focused on staying positive that my test results will come out good. And again as always thanks for all the support. The good news my brothers kidney function test this month showed it stayed at 10 percent. It had been decreasing every month for the past three months. Hopefully it will stay stable until I can get cleared for donation.

  • Diane:

    That is great news Lisa re your brother. Let’s hope you get clearance pretty soon 🙂

    Keep strong …
    Di
    x

  • I am flying to new York the last week of June for my two day testing. We are also moving to Nebraska a new state the same week. When I come home the first two weeks of July we are flying out to south Carolina for vacation.then mid August my kids start thier new school.I got a lot going on right now.but my biggest thoughts are on these test. I live a pretty healthy lifestyle I think. I am not at all worried about donating a kidney to my brother. But have any of you worried about hidden disease or cancer you might find that you have and didn’t know about. This has has happened in my my family.my younger brother was a marine before he be deployed he went through a heath check. At twenty four he found out he had an enlarged heart he is now on heart meds. I also have a lot of cancer in my family.

  • Diane:

    Yes of course, as that can happen. I know a few donors who when going through the evaluation were found to have something wrong with them. At least it was found early. Without the evaluation who knows how long it would have been.

    One needs to turn any negative thoughts into positive ones 🙂
    Di
    x

  • Lisa:

    I went through all my test. Everything was fine. Right before I meet with the transplant team my blood pressure was slightly high so now I have to take a 24hour blood pressure test.crazy my brother kidney is at10% never had high blood pressure and not during any of my testing before.I guess being extra carful. Even the doctors said it made no sense.almost there. So much a long process. His kidney is at 10? now. No luck needed we will get this done! And soon! I all the faith in the world

  • Diane:

    Hi Lisa,
    It can be a long and arduous path to follow to enable us to donate.
    What we need to remind ourselves of, is that we are not sick. Doctors took an oath to preserve life etc. To remove an organ from a healthy person in some ways goes against what they stand for. In fact I know of some transplant surgeons who will not remove an organ from a living person.

    So when they do agree to, they need to know the donor is not just healthy but will be able to take the anaesthetic as well. Having high blood pressure, even slightly high, needs to be brought down. Can you imagine if, with slight high BP you underwent major surgery – out of choice – not because it would help your health – and something happened.

    They need to know the BP is just a blip and not some medical reason that has just caused the BP to start rising. A 24 BP will give them so much more information.

    I know it is so frustrating for this to happen … but they do need to make sure everything is in order for your major op 🙂 🙂 – those who said it made no sense …perhaps they cannot see it from the surgeon point of view 🙂 🙂

    I am sure everything will be fine and before you know it … you will be donating. Just stay strong and try not to worry !! Doesn’t do the BP much good 🙂
    Di
    xx

  • Lisa rson:

    Thank you for your reply. I am taking my 24 hour blood test today today. I’m sure everything will be fine. I think you so much for your time and support. This has been quite a process. already it has changed my life in so many ways already . If you could pray for me and my brother I would appreciate it.

  • Diane:

    Hi Lisa,
    Let us know how it all goes.
    Of course I will Pray for you and your brother….. 🙂 – I have been already.
    Di
    x

  • Lisa rson:

    I will definitely let you know . You have been more help and support then I think you know .

  • Diane:

    God Bless you both
    x

  • Lisa:

    I am finished with all my test. Just waiting for the results of my PAP’s test. If this last results are good surgery will be October 4

  • Diane:

    Hi Lisa,
    October 4th not that far away
    Fingers crossed PAP test okay …. then all systems go 🙂

    Keep in touch
    x
    Di

  • Lisa:

    No not far away. Can’t believe it is finally going to happen. I am very excited and but yet a little nervous.

  • Lisa:

    OK surgery set for October 4th.

  • Diane:

    Great news Lisa 🙂 …..

  • Lisa:

    I am leaving for NY Monday for last test and surgery. Very excited it has been quite the journey and I am very ready for this to finally happen. Any last minute advice? I will keep you informed of how surgery goes and the days after. Thank you again for your support.

  • Diane:

    Hi Lisa,
    Exciting times.
    Last minute advice …. enjoy the moment.
    Take loose clothes as you could have a lot of fluid retention – several lbs some people put on.
    Drink plenty of fluids before if you can and most defo afterwards otherwise you could get headaches etc. Better a lot of water than not enough.
    If they offer you a laxative that night … take it!! 🙂 🙂 🙂

    Can’t wait to hear again from you once op over with. Very excited for you. Prayers your way.
    xxxxx
    Di

  • Lisa:

    I am home from my surgery. Tomorrow will be two weeks since surgery. My brother and I are both doing great! What a beautiful experience. My brother and I have always been very close but the Bond now is something undiscrble. Thanks for the great advice and being an great ear for me to talk to during this progress. It is a experience and a time that i will hold close in my heart for all my life.

  • Diane:

    Hi Lisa,
    What wonderful news I am so delighted for both of you. It will certainly be an experience for you both to treasure. Thank you so much for letting us know how it all went. So pleased!
    Di
    x

  • Riz:

    Hi

    New to this forum.
    Does anyone have experience of kidney transplant in UAE ? Dubai ?

    Also, what is the most painful part of the whole surgery process? Just want to understand what to expect as a donor.

    Thanks , this forum is great.

  • Diane:

    Hi Riz,
    As far as I know kidney transplant in Dubai is relatively new. Do a google on “kidney transplant Dubai” and quite a few links come up.

    As for the most painful part of donation …. it various from person to person. Some people have very little pain at all, others say they do have some. For me it was the first couple of days when I moved and the abdomen had to work 🙂 … but the hospital gave me very good pain meds which really did reduce the pain down to very acceptable. When I got home, I kept up the pain meds but allowed myself a little pain just as a reminder I had to be careful and take things easy (you dont feel ill, so very easy to try and act normally).

    I cannot say, apart from when I had to get out of bed after the operation, that I really had any pain tht was bad pain as the pain meds were very good. But the pain was around the main incision line, which for me was bikini area, so lower abdomen. But sitting or laying down, absolutely no pain at all .. it was only when I moved. Didn’t last for long though before could lay off the pain meds.

    All depends how they remove the kidney. Some hospitl I believe do it around the tummy button or just below.

    Read through my report on the left under becoming a donor and you will read peoples comments and how they felt.

    All I can really add is that if the pain was really really bad … I doubt many people would offer to be a donor 🙂 🙂 ….

    Best of luck and hope you find all the information you require.
    Di

  • Riz:

    Hi

    Thanks to the reply. Few questions :

    1. Do you know how much does it cost to do kidney transplant in UK? Let’s say at the hospital you did it. And do they even do it for foreigners ?

    2. After you wake up from the surgery, are there like lot of pipes coming out of the body? Does anything go inside the penis/bladder?

    3. Generally speaking, is it valid to say that a donor can return to work(office desk job) – and start driving 2 weeks from surgery ?

    Thanks for your help. You r doing a wonderful job and God bless you

  • Diane:

    Hi Riz,
    Who are you donating to? Are they already on dialysis.
    Cheers
    Di

  • MatthewC:

    Hi Riz

    As Di says, everyone is different! Re pain, as far as I was concerned, I never had any real pain – I had two days in hospital (very little sleep) avoiding stretching, coughing or moving rapidly, then I was discharged and spent another week or so feeling fragile, then another month where I felt fine but took things VERY carefully. I am retired but, personally, I would advise against going back to work in less than a month, as I know that even doing nothing I got tired easily.

    Re your second question, I had a catheter inserted which was removed a day after the op. I also had a drain from one of the holes in my abdomen which was removed after two days (neither of these stopped me walking the morning after the op).

    Read my blog at http://diaryofakidneydonor.blogspot.co.uk/ for lots more info and advice.

    Matthew (author of the above tale of donating to my brother)

  • Riz:

    Hi
    It will be to my elder brother.
    He is not on dialysis.
    His creatinine is 6.
    Our blood group matches.

    Kind regards.

  • Diane:

    Hi Riz,
    Okay first off, I am no expert on whether people from another country can have transplants privately in the UK … so what I say may be a load of rubbish!

    I have done a bit of searching and looks like privately it could cost around £60,000+ ….. I am not sure if that is for both donor and recipient though.

    I came up with this private hospital that does do transplant – This is their international website. Suggest you contact them direct to ask your questions. At least you can get some correct answers. I really don’t know if that is possible at all to be honest.
    https://www.thelondonclinic.co.uk/international-patients/our-international-office

    Please let me know how you get on with your enquiries, as would be useful information in case anyone else is in a similar situation.

    All the best
    Di

  • Riz:

    Hi Mathew

    Thanks for your advice.
    Question : do they insert the catherter before putting to sleep or after ?
    And when they remove it, do they again put you to sleep?

    Is it a big deal ?

    Thanks.

  • Hi Riz

    1. After! I had no knowledge of insertion at all
    2. No, you just pull it out yourself!!
    3. Not at all – don’t worry about it.

  • Diane:

    Hi Riz,
    Can I just add to the above that taking out the catheter yourself is not normal practice 🙂 .. generally a nurse will remove it for you.

    Di
    x

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