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. Please either click on the links below to read the individual stories of Karen and her family, or … just keep reading from the start.
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.
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: –
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.
My Mum (by Ella Brown – 6 years old)
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.
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!
Diane asked if I would update my blog…
(uploaded to this page on 1st April 2015)
As it is World Kidney Day I thought it a great time to share my little miracle.
In April 2015, three years after being on dialysis, I received a kidney from an altruistic donor.
Since then, everything (touch wood) has been just fine. I have my whole life back and it is the most amazing feeling. I want to share my story to give people hope, that there really is life after dialysis, and to try to be positive if you are suffering from kidney failure.
From my previous blog, so much has happened.
The main problem I faced was that it was difficult for me to find a donor. I had extremely high antebodies, and I since learnt that there is only 3% of the population who would be able to give me a kidney, so things were looking very bleak for me.
Since writing the blog, I had many problems coming to terms with kidney failure and finding it out so suddenly and out of the blue. I suffered a seizure in front of my husband and children, which was due to the water dialysis actually being absorbed into my body and draining out.
Further complications were that I developed a stomach hernia, whilst trying to have our first family holiday using the water dialysis. This happened on the first day, which ended in me being rushed into intensive care for emergency surgery. The doctors had to sort things for me to move as soon as possible to haemodialysis. It was again a sad time for my kids and husband who spent five days in a caravan in rainy Devon whilst I was in intensive care.
I then moved onto haemodialysis, and really struggled with the needles into my arm, the blood and had loads of blood pressure crashes. It was hard travelling to the dialysis unit one hour away every other day, I missed taking my kids to school, I missed assemblies, sports days, not to mention boxing day mornings…it was a pretty grim time. The grueling diet and fluid restriction of 500ml a day, meant a social life didn’t exist. Even a simple meal out was difficult due to high potassium or phosphates that I battled with.
I never gave up hope. My children and my husband gave me strength. I needed to be well and positive for them. They were all an absolute brick for me.
My husband used his digital media skills to set up a facebook page..
This was set up to keep people up to date with how I was, largely to stop the phone calls and good will messages and flowers which we was lovely but overwhelming and unsettling for the kids. It also was set up to try and find a donor.
If you take a look you can track my journey on my facebook page, and you will see that we now have a very positive message on it, thanks to my little daughter who managed to raise £1,500 for Kidney research shortly after my transplant…
One lovely day I received a message from a lady who contacted me through my facebook page, she had also seen my story on Dianes blog page. This was Gemma Coles, and she was the most amazing lady, who wanted to help me. She had been looking to find someone to donate to, and after reading about my circumstances with my young children she was very keen to donate to me.
Unfortunately the authorities would not allow this, as she was not seen as my ‘friend’ and had never actually met me. From then on we wrote to each other constantly, swapping stories about our families. More and more we had so much in common, and had a great time chatting over email.
We became amazing friends, she was an absolute rock for me.
For two years we fought the system, wrote letters and eventually convinced the powers that be to allow her to try and donate to me. Unfortunately however, Gemma was not a match but the amazing thing was, we had paved the way for future people looking for donors via social media. The guidelines had actually been relaxed at last, and each case would be viewed independently.
You can see the our story which was put into the Guardian front page… http://ind.pn/19KtOt0
We however did not give up, Gemma was keen to go into the kidney pool with me. However this again was not allowed. Letters written once again, and again the decision was also overturned. The strange thing was that on the day that Gemma was about to go into the kidney pool for me, I received a phone call from the transplant team. An altruistic donor had come forward and happened to be a 000 match which is an absolute perfect match. I was over the moon!!
Life couldn’t have moved in a better way. By receiving an altruistic living donor, it meant my kidney had the best possible chance of working. I was worked up with drugs pre-op, and so was my donor. It was a very healthy kidney too, as my donor had obviously gone through a full MOT. So it really was the most beautiful thing for me…and I am so indebted to my donor, who gave me my new kidney.
Looking back on nearly my first anniversary, I believe my years on dialysis were not in vein. Gemma and I were able to make a difference to the system of transplantation, and hopefully this can help people in the future.
And as for my family, it has given us an amazing life lesson – we never take life for granted, as we know how life is so very precious. We make the most of every day, as you never know what is around the corner.
And most importantly it has made me so humbled to realise what special people there are in the world to give up an organ to save a life. I thank my donor from the bottom of my heart.
Happy World Kidney Day.
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