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Life on the waiting list: the effects of kidney failure

In the second part of his fortnightly blog, James Hipwell describes the symptoms he's suffering as he waits for test results on a possible organ donation from his wife, Rachel

A tired man.
Kidney failure leaves sufferers with a feeling of all-round wretchedness. Photograph: Kevin Jordan/Getty images

Imagine the worst hangover you've have ever had. Well, that's the best way I can describe the feeling waking up every day when you have kidney failure. But without the fun part of getting drunk first – and sadly, nor does a fry-up make it any better.

The feeling comes from the build-up of toxins in my blood, similar to too much alcohol. The millions of tiny nephrons in my kidney that filter out the bad stuff have been destroyed by an auto-immune disease. So my blood has become a ghastly stew of waste products, which cause nausea and headaches and general all-round wretchedness.

A simple measurement of how well kidneys are working is the level of creatinine in the blood. Creatinine is a waste product produced by muscles and got rid of through the kidneys. A "normal" level depends on how much muscle you have, so a child's will be around 60 while a bodybuilder's will be as high as 130. Mine is currently around 700 and getting higher.  The only thing that is going to bring it down permanently is another transplant.

Last week, I saw my brilliant consultant, Professor John Cunningham, at the Royal Free in Hampstead, London. He and his team are helping to put my mind at rest about my wife Rachel being a potential kidney donor for me. As I have already described, I have serious reservations about her going through this.

When my brother donated one of his kidneys to me eight years ago, he was left with a 10-inch scar on the right side of his torso that wouldn't look out of place in a gallery of shark attack pictures. I couldn't bear to put Rachel through the same amount of pain.

The Prof told me that kidney removals are now much less invasive. The surgery is done laparoscopically, with small cameras inserted into the donor, and then the kidney removed through an incision in the lower abdomen. My brother was laid up for three months after the operation, whereas Rachel could be out of hospital in three days and

back at work in six weeks. Rachel met with Alison, the sister from the live donor team, who talked her through the process ahead.

It starts with a blood test. This will check whether our respective blood groups are compatible and, most importantly, whether or not I have antibodies that will react against her kidney and cause my body to reject the transplant.

After this, there will be a whole round of scans, x-rays and tests. The hospital will check the strength of both her kidneys separately to make sure that if she is left with just one, it will cope on its own.

She will also have to see an independent doctor to check she isn't being paid to donate or making the choice under duress. I took my brother away for a holiday to the south of France after he gave me his kidney – Rachel is demanding at least the same, if not better. Does that count as a financial inducement? Maybe she shouldn't mention it, just in case.

Uncomfortable as I still am about Rachel donating, I know I am lucky that I have this option at the moment, as well as the national transplant list. If I only had the list to rely on, I wouldn't fancy my chances. Three people die every day in the UK waiting for transplants.

The grim reality of the transplant list was brought home to me this weekend when I saw a friend whose father also needs a kidney transplant. Earlier that week, he had been called in by the hospital as a cadaveric kidney had become available and if it was a match, they would do the surgery straight away. A transplant would have completely changed his life. In the end, the kidney wasn't good enough to be transplanted and after a few hours of hope, he went home again to life on dialysis, hoping another call will come soon.

If Rachel can't donate, then I will also be waiting for that call, never going too far from the hospital, never knowing when I might get my life back. Or worse, if it will be too late.

• This week is National Transplant Week. You can find out more about the campaign and join the organ donor register here.


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  • callen78 callen78

    7 Jul 2010, 5:38PM

    I wish you the very best of luck. It has enlightened me as to what it is like to need a kidney. I am donating to a friend and I was introduced to this site http://www.LivingKidneyDonation.co.uk which describes the donation side in great detail. You may like to read it and help put your mind at rest about your wife donating. I have met quite a few people who have donated and they were up and about in no time, very very small incision marks. The person tells the story from beginning of evalution through to having the operation and recovery. I do hope you can worry less about your wife.

    Also I do not think it so much what YOU are putting HER through. She NEEDS and WANTS her husband - she wants HER life back as well WITH YOU.

    Your wife is doing this for her as much as for you. You are both a team.

    I wish you the very best
    God Bless
    callen

  • aporcupine aporcupine

    7 Jul 2010, 7:49PM

    Hearing accounts like these always make me feel very lucky and make me want to help as much as I can. I am currently on the Organ Donation Register and am willing for anything to be taken for use by someone who needs it when I no longer do.

    I don't personally see why people have a problem with donating their organs, However I do respect the fact that some people don't like it and that some people’s beliefs prevent it.

    One thing I don’t understand though is why some people are happy to donate their organs but not their corneas. Every time I encounter someone who is like this I ask them why and they never really have a reason. Anyone here the same?

  • Eglinton Eglinton

    7 Jul 2010, 8:03PM

    @aporcupine - I agree it's very strange how squeamish people are about their corneas. I've also met people who opt out of donating them when they'll happily sign over their innards. I don't get it either - do they think they will need their eyes after they're dead more so than their pancreas or their heart? Maybe they are holding out for an afterlife and worry they won't be able to find their way in to the light without them.

  • lady66gardener lady66gardener

    7 Jul 2010, 9:57PM

    Our friend is currently in kidney failure and is not on the waiting list for a kidney transplant yet because he has to loose another 4 stone. He is in a catch 22 situation because his previous ( good ) weightloss has dropped completely off as the disease has progressed and he now is too exhausted to take any exercise at all. He is finding life very tough at the moment because not only is he thirsty allthe time ( limited to less than a litre of fluid a day including that which is in his food ) but he cant shift the weight to get on the transplant list. Does anyone have any ideas to help him ? He doesn't know I have written this but we are very concerned and are clueless as to know how to help him.

  • HHelen HHelen

    7 Jul 2010, 11:45PM

    to lady66gardener

    One way you could help your friend is to consider yourself & suggest to other friends the idea of being tested to be a live donor to your friend. At my unit, the West London Renal transplant centre, they have a good record in doing transplants to obese (over 40 BMI) recipients.

    What James Hipwell says about how you feel on dialysis is spot on. I am so grateful that my very much younger half brother came forward 3 years ago. At that time Prof Nadey Hakim said it was the smallest incision he had made so far to remove the kidney and a new record was set earlier this year when he got it down to an inch see:http://www.guardian.co.uk/lifeandstyle/2010/mar/16/kidney-transplant-45-minutes

    I understand how James feels about being worried for his wife and I resisted the idea because I didnt want someone else to have an operation. But for anyone contemplating this - so much care is taken in assessing the health of the donor and preparing the couple for the transplant - it is certainly something the person who needs a kidney and their family and friends ought to consider doing.

    Helen

  • ustr2 ustr2

    8 Jul 2010, 1:01AM

    Are they performing "domino transplants" in the UK yet?

    I work at Johns Hopkins Hospital in Baltimore, Maryland, USA. We have done up to 14 donors and 14 recipients on one day - each one had a willing donor who was not compatible with them, but was compatible with some one else on the list. Through a matching algorithm, they are able to bring donors and recipients together.

    For example - willing donor (D1) is incompatible with her husband (R1). However, she is compatible with recipient #2 (R2). D1's kidney is given to R2. R2's sister (D2) gives her kidney to R3 with whom she is a match. R3's friend (D3) gives his kidney to R1, with whom he is compatible. At our hospital, all surgeries are done at the same time to make sure no one backs out once their loved one has received the kidney. We do it on the weekends to ensure ample operating theatre space and ample theatre staff.

    This approach has saved many lives and is anticipated to save many more as the approach spreads around the world. No cadaveric donors are needed and the surgeries can be planned well in advance.

    Please see the following link if you are interested to know more: http://www.hopkinsmedicine.org/transplant/Programs/InKTP/

    I hope that things work out for you. Will watch your column closely to hear more about your transplant journey.

  • WinnieOfOz WinnieOfOz

    8 Jul 2010, 2:03AM

    Fantastic series, thankyou, and very timely for us as my husband has just started the process (along with his brother) for becoming a live donor for his sister, whose eGFT is down to around 10%.

    What a learning curve it is. Unfortunately I think one of the major obstacles to people offering their kidney MAY be the fact that most people (or all the ones I've spoken to in the last few days) don't realize that it's not a process of dialysis leading to live donor; that if you have a live donor, going down the dialysis path is actually counter productive. My SIL was too polite to stress this, and I only found out by ringing the live donor transplant coordinator myself.

    WHOOP WHOOP Blood group 'O' is 'our' first result. We all drank champagne.

    @ustr2: yes, I think this is going to make a significant difference to the live donor program. I read that even with modern technology, about 30% of donors are not suitable for THAT recipient, which means there are large numbers of donors out there (like James' wife), ready and willing, just not able.

    @callen78: thankyou for that. Having just become involved , I'm a bit obsessive about researching at the moment.

    @ James: In regard to the surgery, hopefully it can be laparascopic. I had this method used to remove an adrenal gland a few years ago, and was out of hospital in three days, back bike riding within three weeks.

  • TopGinge TopGinge

    8 Jul 2010, 4:52AM

    I am blessed with a brother who donated one of his kidneys to me under laproscopic surgery. 16 months on he's as fit as a fiddle and with barely any scars at all.

  • WinnieOfOz WinnieOfOz

    8 Jul 2010, 5:10AM

    which means there are large numbers of donors out there (like James' wife), ready and willing, just not able.

    Sorry, I didn't mean to imply she WASN'T a match, just that she was ready and willing, and IF she wasn't able then this 'paired donor' (as it seems to be called here) may be a solution.

  • noahfinsmum noahfinsmum

    8 Jul 2010, 9:12AM

    Hi My son also had renal failure caused by IgA Nephropathy from the age of 4, he went into end stage renal failure 2 years ago and received a kidney from a cadaver donor at the end of July last year after just 4 weeks on the waiting list.
    We are now forever grateful to the family who decided to allow their loved ones' organs to be donated at what must of been a terrible time.

    I truly believe that we should have an 'opt' out system then it would allow people to actually think about why they don't want to be a donor and consider whether they would want an organ if they ever needed it.

  • kizbot kizbot

    8 Jul 2010, 11:14AM

    I'm inclined to believe that there really shouldn't be any question about organs being harvested form cadavers.. It should be automatic... And I cannot for the life of me understand why anyone would have any objections to it... but people are odd and religion holds too much sway in our society, so we've a way to go before it becomes automatic... no questions asked.

  • aporcupine aporcupine

    8 Jul 2010, 11:38AM

    @ustr2

    This is such a good idea; however I could not see this working with the NHS. There are too many regulations and procedures, even if this was implemented, it would take years and they would spend millions of pounds planning it.

  • DrMoskowitz DrMoskowitz

    8 Jul 2010, 6:41PM

    Although useless in this case, older patients who go on dialysis usually do so because of type 2 diabetes or high blood pressure. In 2002, I published that it was possible to arrest, or even reverse, early stage kidney failure due to diabetes or high blood pressure. That means it's possible to prevent 90% of kidney failure in pretty much every country.

    If the NHS acted on this, there'd be more than enough kidneys to go around for the remaining 10% of patients like James Hipwell whom I can't yet prevent.

    More details are at http://tinyurl.com/healthcrime.

    Dave Moskowitz MD
    CEO & Chief Medical Officer
    GenoMed, Inc.
    www.genomed.com
    St. Louis, Missouri, USA

  • WinnieOfOz WinnieOfOz

    9 Jul 2010, 12:37AM

    @DrMoskowitz

    Your link doesn't seem to work. (Or is that just me?)

    I'd be very interested to know about reversing kidney damage due to high blood pressure, as hyperaldosteronism (now cured) left me with reasonable, but not good enough for donation, kidney function.

    ~~~~~~~~~~~~~~~~~~

    @ a porcupine

    Hopefully it IS already happening in the UK, it's happening in Australia.
    I wouldn't have thought the logistics of 'matching' would be that difficult - all you need is a data base of willing donors (who've been a poor match) and a data base of recipients. I would have thought it wouldn't be difficult to find two 'couples' in this situation.

    Given live donation has a greater success rate than using cadavers (not to mention the fact that the recipient is possibly in better health prior to dialysis than after) it sounds like a no-brainer to me.

    ~~~~~~~~~~~~~~~~

    I know I'm in another country (der) but I found this to be the easiest resource to follow:

    http://www.renalresource.com/pdf/Kidneytransplants2009.pdf

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