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Karen Brown was 39, happily married with two children, of 3 and 6 years old. She had also recently given up a career in London to spend more time with her children. As you can imagine her world was turned upside down. Here is Karen’s story. Her 6 year old daughter has also spoken of how she feels with her mummy being so ill. Karen’s husband, Matt, explains what life is like for him knowing the wife he adores is so ill.

Karen’s Story

Karen and her two children

I found out I had kidney failure last September, I am what is called a ‘crash lander’. It all happened completely out of the blue. I had been suffering from bad headaches for sometime, and thought my eyes looked puffy, but the doctors thought it was sinusitis. It wasn’t until they checked my blood pressure, and realised it was sky high, that they thought there was a problem, and gave me a blood test. It was that night I got the call to say that my kidneys showed they were functioning at 5%, and I needed to go straight to Brighton hospital for further tests.

It was devastating. I was only 39, happily married with two children, of 3 and 6 years old. I had also recently given up a career in London to spend more time with my children. As you can imagine my world was turned upside down.

I realised very quickly I had to go on dialysis to stay alive, I opted for the water based dialysis and two operations later I had a tube coming out of my tummy, which I connected to bags of water, and drained in and out every four times a day, this effectively was cleaning the toxins out of my body, a substitute for what my kidneys would normally do. The good thing was that I was able to do this from home, but it was difficult to manage with two young children around too.

Things took a turn for the worse just before Christmas. I came home from hospital where I had been for a check up, but was sent home with an all clear. I ran upstairs to put the bath on for the kids, and ran down, and then my vision started to go all-strange. That was all I knew until I realised I was in an ambulance on the way to A&E. I had suffered a provoked seizure, basically a fit; from fluid overload as a result my blood pressure had gone through the roof. This happened right in front of my children. I could not imagine how they were feeling, or my husband as he tried to deal with me in this state. After two days in Intensive care, and a week in Brighton hospital, I returned home. I changed to an overnight water based dialysis, which I was told was better for me as the fluid cleanses you tummy in short but regular timings, so hopefully I would not therefore absorb the fluid.

Unfortunately because of the fit, I was told that I could not drive for at least 6 months, so this was a really harsh blow. Not only could I not walk very far because of the pain from my tummy, now I could not drive! So I have had to rely on my husband, elderly parents, and friends to do a lot of running around for the children and me.

Happier times

In January the tube started to protrude out of my tummy, and after a couple of weeks it started to create a blister and cause me excruciating pain. I was rushed in to hospital to get it urgently removed as there was concern for infection As a result I had no way of dialyzing until I could get a ‘line’ placed in my neck and move onto haemodialysis for an interim period. I waited a week for this operation, which was pretty horrible, and quite painful, but it meant I now had an access point to connect up to a haemodialysis machine and get my blood cleaned.

So presently I am go down to Brighton’s Haemodialysis department, three times a week. I get up at 5.30am, picked up and taken in now by Transport team, who are wonderful volunteer drivers, and get home about 1pm. My husband now takes the children in to school and nursery and gets into work late. Before using transport, he was driving me down to Brighton all the time, he has had so much time off, in fact It was his first full week this February since September last year. I have no idea how other people manage; we are very lucky that Matt has an amazing employer who has been completely supportive throughout. Matt too has been absolutely amazing, so I am blessed to have such a wonderful husband.

Last week I had another op for a new tummy tube, and am hoping to be back on the overnight dialysis at home very soon, that’s if all goes to plan, and everything has been successful.

When we first found out about my kidney my husband set up a page for me on Face book, which has been really useful in generating interest in my search for a kidney donor. It was also set up so we could control people calling and texting, asking ‘how I was’ all the time, which was very hard to begin with, especially for the children.

I would like to share my Facebook page with you if you don’t mind: -

 http://www.facebook.com/BrownsSearchForAHero

This has generated so much interest, but sadly only two people have come forward, which is a little sad out of all the people I know and have reached. Unfortunately neither where matches for me so the search continues.

I contacted Diane originally because I wanted to know if I could play a part in changing peoples perceptions, and encouraging more live donors to come forward, or at least encourage more people to sign the donor register. This change in the way people feel and think about organ donation, could make such a difference to so many lives.

If telling my story can help in some way to do this, I do hope so. Thank you for listening.

Karen

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My Mum (by Ella Brown – 6 years old)
My Mum has kidney failure. 
I want her to get better. 
Sometimes Mum has to miss special assemblies. 
I have still got memories of when mum skipped, played, runed, swimmed and practised sports day. 
But I came in 2nd place! 
But now we can’t do those things so much with mum. 
But we still love her very much.
 
Ella x
 
Ella drew some wonderful pictures on her letter. Here is a picture of her letter:

——————————————————–

This is Matt’s story:

The most common things I’m now asked is “How’s Karen?” and “It must be so hard”, normally said with droopy eyes and body language.  6 months on and I still haven’t perfected a straightforward, short answer! 

Having led, enjoyed and protected a private family life within “our four walls” the events of the last 6 months have broken down both walls and defenses, some of this though has surprisingly been to positive effect.  Up and till Karen had been diagnosed with Kidney failure my existence centered between home and work, long hours at work and a long commute meant that I never had the opportunity nor did I make a concerted effort to visit my children’s schools, or get to know anyone living around me.

Matt Brown and family

The point I’m making is that I lived in a self built cocoon of work and home, me the bread winner and my wife supporting home life…it’s all I’d ever needed.  The days following Karen’s diagnoses were the worst days I had ever lived, was she going to die? would it be just me and kids?, how could life ever be as good? Up and till September 6th 2011 we were living the dream we just simply didn’t know it!   The mind wanders everywhere when you are told something shocking, one thought and thing I was certain of is that contrary to the saying there’s plenty of fish in the sea I know that this just wouldn’t be the case for me or my children…we’re just so close.

Setting aside everything I feel for my wife, I just couldn’t ever raise the effort to meet or get to know anyone else, why? because my wife is a one off built for me, that makes her irreplaceable, anyone else would be less and having experienced the best nothing else would ever work or do.

On diagnoses work stopped immediately and I received full support from an amazing employer and his family. I became a mother to my children and a 21st century husband to my wife, myself and Karen were making daily trips to the Renal Unit in Brighton, for daily tests and daily information intakes that left the head mentally and emotionally drained beyond belief.  In looking after the children I had also started to feel a sense of loneliness in crossing the busy school playground and even being around home, this work / home existence is not the perfect set up after all! 

I realised quickly that I’d have to start smiling through this and put privacy to one side!  The schools and parents have been amazing, today as I write, the illness is still obviously with us but out of the negativity I have formed a closer relationship with my children, I’ve joined the parents association at my daughters school and can probably subscribe to be a recognisable face in the playground, I’m making an effort and it’s becoming a way of life….every cloud has a silver lining they say.

My wife and I are both hard workers and good parents, our little children make us laugh every 5 minutes and shout very 10, they take away 90% of the silent moments and ensure you don’t get a lot of thinking or worry time. We are strong and dealing with Karen’s condition together and we will win through, personally I council myself on the fact that that this is a temporary situation and that she will get a transplant.

Selfishly I look forward to the day that I will one day run my hands over her without feeling tubes and without her feeling less womanly and inhibitions getting in the way. But I’d trade that for my children to have their energetic Mum back, that they get to go on a summer holiday and go swimming with her, and I want Karen to have the same choices and freedom that we all do, I’d love to be able to give her the ultimate present.  

The element I do feel mixed about is the lack of living donors coming forward, the first thought is that our close friends have children of a similar age to ours, i.e. young, so it is very easy to understand the fear and responsibility you have towards your children and that’s enough to stop people coming forward. The 2nd thought though is one of sadness for Karen, it’s hard not to look on and think well you know who your friends are….I don’t feel bitter about it, I’m just sharing a mental battle of feelings that you never really resolve. 

The other area in relation to organ donation is that in this time of austerity and spiraling NHS costs how is it that as a country we haven’t adopted an “opt out policy” on organ donation? what a waste!  It’s not so much the money saved, but actually the opportunity to recycle the money saved and put it into research for other illnesses that in turn can perhaps save more lives and indeed money.  I’m told its circa 35k a year for a haemo dialysis patient and 27k for a PD patient…..8000 people waiting for Kidney transplants that alone is circa 240,000,000!   Hearts, Livers, Pancreas, people we are talking hundreds of millions.   

Off soap box now and back to me, personally I do not find the dialysis treatment upsetting, I see this more as a friend keeping my sole mate with me, but seeing your loved one pop 20 odd different coloured pills a day I actually find more difficult. Leaving her overnight in hospitals for operations, seeing her missing her children’s birthdays or being forced to break children’s promises, are also difficult moments to contend with. Being kidney patient means it’s difficult to make plans and this often affects everyone involved, adults can deal with it but it’s not always fair or understood by the children. Your forced into having to take life one day at a time, accept that everyday is a new day and that you can’t look too far ahead.

I’m not sure if the worst is behind us or in front, I guess that when the call comes for a transplant that will be another huge emotional challenge, and I wonder with my personal strategy of always preparing for the worst how I will deal with everyday post transplant…one thing is for certain you don’t take life for granted once you’ve been through this, especially so relatively young.

You can’t ask someone for a kidney, I can’t ask someone for a favour without saying sorry first…..but if you are reading this and get the urge to help my wife and my children through becoming a kidney donor then I can tell you that you would not be giving it to a more deserving person. You see Karen is not just special to me, but to everyone she knows or comes into contact with…you know she’s just one of those people who lights up a room…luckily for me for as long as I and her treatments support her she’ll continue to light my life, and no one can trump that.

So how’s Karen?  Stable and waiting for a transplant.  It must be so hard? Course it is but I’m not going to tell you that!

Matt Brown

 

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9 Responses to “Karen Brown – a “crash lander” now waiting for kidney transplant”

  • Steve:

    Hi Karen/Matt. I just got done reading your story/reality and thought how close it is to me and my wifes situation. What you both have written has been exactly how we feel. My wife, Cindi, is 39. We have two kids, 15 year old boy and a little girl turning 6 on the 25th of March. My wife was diagnosed with igA neuropathy with 7% kidney function. She hasnt done any surgeries for dialysis yet but probably within the next couple of weeks.

    Although we don’t know each other, I’ll be praying for your family as well as my own. Stay strong!

    Best wishes to your family,
    Steve (California, US)

  • karen brown:

    Dear Steve.

    Thank you for your message. I too can’t quite believe how similar our stories are!

    As you said we don’t know one another, but I will be thinking of you all, and hoping all the best for Cindy in the coming weeks/months. Somehow it helps to know there is someone else out there who is going through the same thing. I am happy to be at the end of an email if you need to chat through anything at all. Sometimes it helps to share thoughts and emotions.

    Wishing you all the best to you and your family,

    Karen
    (UK)

  • russy:

    Hi karen
    I knw how difficult it is for u and ur family, I wish I can help u but I am very faraway in africa! Wish u al the best!

  • Judy:

    Hi Karen, my 25 year old daughter has had a similar shock like yours n is now on the waiting list for a kidney, wish it was easier, I am a match for her but overweight and I feel horrible about this. She is very down at the moment even though she tries to work and study. She too is on dialysis(PD). I can understand how hard it must be for you , I m so glad you have a very supportive husband.I do hope you will get a donor soon same for my daughter too.did you watch the program about kidney donors @19.30 on itv?Do hope things work out soon . Good luck. Take care . Please donot give up hope.

  • karen brown:

    Dear Judy,

    I do hope that your daughter is well, and that she too receives a kidney soon. It must be very hard trying to study and work. I have now moved onto haemo dialysis, as the PD was not working well enough for me. I am now in Brighton 3 days a week doing this, which is a great shock to family life. I only started last week, and it takes a lot of adjusting, especially trying to fit around the children.

    Stay strong, you and your daughter will get through it, unfortunately there is not much choice, I’ve spent many a night crying myself to sleep, and asking, “why me”, but realised that I just have to get on with it. I’ve learnt to put on a brave face, and realise that it could be worse, at least I can more or less lead a normal life when I’m not on dialysis. She will get through it, as hard as it is.

    It must be hard for you if you can’t help, but don’t worry yourself. My husband hasn’t been able tp help, he has tried, but was not a good cross match, so he feels really bad too, but I just think that it was obviously not meant to be, and know that something will be around the corner. I don’t know what I would do without the support I have around me, so stay strong, she needs you to be strong.

    All the best, let me know how your daughter gets on.

    karen xx

  • Find a kidney donor–Letters | Real Numeracy:

    [...] Letter by a child, image courtesy of Living Kidney Donation UK [...]

  • Carolyn ranns:

    Hi Karen it’s carol here from Brighton I have now had a haemo dialysis machine set up at home and I am dialysing 6 days a week I too have iga as well as cindi and wish her all the best .I was 41 when my kidneys failed and had a friend give me a kidney but unfortunately the iga returned after 2 years and a further 5 years later my transplant failed. I don’t think anyone knows exactly what our kidneys do until we loose them I hope you get a transplant soon . I was in Wales last week when they changed the ruling that the you have to opt out and this is a sign that things are moving forward. I hope you get your kidney soon it must be so difficult for you with small children there is only my husband and I and we find it taking over our lives Well done for bringing this message to people. I was forwarded this from my friend in France

  • karen brown:

    Hi Carol,
    Thank you for your message. Im sorry to hear about your situation. Kidney failure is pretty harsh on anyone, and their family, and its very tough. Thank you for getting i touch You have obviously been through so much, its nice to know youre not alone.

    How are you managing doing the dialysis at home? Im currently dialysing 3 times a week, in Crawley…but ive been advised to do it from home as my bloods are so high in between sessions, and fluid output is almost nil, so i would be able to control my fluid a bit better – Im just really nervous of needling myself, and generally nervous of being on my own doing the treatment. How do you manage it? It would be really nice to get your thoughts, because i only hear it from nurses and consultants, and of course they all recommend it, but wondered on your thoughts?

    Thanks again for your message – I wish you well for the future, and heres hoping the opt out system gets rolled out here soon.

    Karen x

  • Carol ranns:

    Hi Karen hope you are keeping well I’m doing terrific dialysing at home. I still have a neck line in as I refused a fistula as the first one didn’t work and I didn’t want any more ops. My friend passed all her tests and we had a transplant arranged and then just before the op she developed divaticulitis so no abdominal surgery was recommended so my daughter passed the tests and when we went to see the surgeon for a date I had developed an anti body against her so no transplant and so far no matches on the paired scheme. I do hope that since we last spoke you have received a kidney. Wishing you all the best wishes carol x

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