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Ami Agbolegbe
I've been living a fast-paced lifestyle working in Central London and spending downtime between the Essex countryside, Ibiza and the South of France. So the news that I would have to juggle CAPD treatment into my routine came as a bit of a sharp shock and posed a challenge. A year on and I'm still as busy as ever, albeit with a much more 'relaxed' vibe! All that high blood pressure is definitely not good for you. The kind people at Kidney Research UK have asked me to blog about the ins and outs of my weeks as a way of showing others that we have normal lives too. I'm lucky that my job involves treats like meals in London's fabulous restaurants, and friends are usually pulling me off on spa days and weekend breaks. I'm always out experiencing something, somewhere - and now you lucky lot get to hear about it! I'll also pass on whatever useful hints and tips I can about the kidney diet and healthcare. I've become a bit of a whizz! I even give talks to local GPs.
Last summer I walked the London Bridges Walk with my entire family to raise cash for the charity. It was brilliant fun - a beautiful day out for all the family and I hope it was the first of many to come. If you're looking for a way to get involved wirh the charity sign up to an event today and get fundraising. Maybe I'll see you there.
Time Out
Barbados was fun despite the ash clouds and airport closure. We landed in Barbados just UK airspace closed so we were slightly concerned about how we’d get home – but not that concerned! We'd got out of the UK just in time and were in fact stuck in paradise. What luck!.
The transplant date had been scheduled for May as felt the March date given was too soon. So I wasn't too worried that the delay would cause me to miss my surgery date. There were concerns however about where I would find medical supplies as I’d only taken a week's supply.
I called a local dialysis centre to see if they could point me in the right direction of stock that I could dip into. I was forwarded on to a renal specialist at The Queen Elizabeth Hospital. The specialist let me know there are no suppliers on the island, nor on the neighbouring islands and that the nearest supplier is in Miami, Florida from where they can ship fluids to arrive within in 24 hours. What a relief!
If any of you are CAPD’ers and regularly travel to the islands and think the contact information I was given will come in handy, please email me. Fresenius Medical Care were far from helpful and merely stated the obvious - that they "cannot fly anything anywhere as UK airspace was closed. Sorry. Good luck" Nooo.. you don't say!! I'd only asked if they had any island contacts.
It turned out that airspace opened in time for our scheduled flight home, unlike others who were stuck in the beautiful sunshine and on whitewashed beaches for an extra month.
Here’s some travel information in case any of you are thinking of packing up your supplies and taking a holiday in sunny Barbados.
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FLY: Virgin – their excess luggage charges are cheaper and the airline is extremely accommodating. The excess luggage fee is £30 per item if booked in advance online (recommended) – and more at the check-in desk. Four parcels, each consisting of two CAPD boxes taped together cost of £120. This is a steal for a long haul flight, compared to the £400 Easyjet charges in excess luggage fees for the same weight to fly short haul.
STAY: we stayed at Coconut Court Hotel. It has clean, bag exchange-friendly rooms, clean bathrooms, TV, kitchenette, pool and a wonderfully large beach. The food outside the hotel is much better than the fare served in the restaurant, although the hotel’s buffet breakfast was good if a little sparse, with lots of CAPD friendly offerings.
Butterfly Beach further down the South coast is also a good option; large rooms, TV, kitchenette, a great pool, a beautiful beach with sunbathing decks and a varied buffet breakfast.
Back home and I had four weeks till the transplant and the preparations for surgery began.
Catching Up
Hello there, what a crazy 6 months it's been!
In November I began helping Kidney Research UK with their ABLE project. The aim of the campaign was to educate the British public (Asian, African and Afro- Caribbean residents in London and the South East) about Kidney Disease and the importance of organ donation, and to publicise Kidney Research UK's campaign effort to relevant media.
The ultimate goal was to sign as many people to the NHS Organ Donation Register as possible and this was achieved by placing specially chosen 'educators' to speak to consumers on a one-to-one basis at public events and in public spaces - and goodness did it keep me busy. The campaign was a success.
During my time working on the project I met and spoke with a man preparing to receive a kidney from his Fiancee. Eric hadn't yet reached the point of needing dialysis yet, nor did he want to wait till that time came and opted for transplantation. He turned out be an inspiration and very influential in the events which followed with regard to my time as a dialysis patient.
Speaking to him about the process gave me the courage to approach my healthcare team about an organ transplant. A subject which I had shied away from, believing a transplant would be unachievable and not for me. The medication and their side effects, the surgery, and the ongoing aftercare and maintenance all seemed like a huge commitment that I wasn't ready for having adapted so well to Dialysis. But speaking with Eric throughout his preparatory time and also after surgery changed my mind. He described it as "a piece of cake".
So I made the call to the hospital to chase test results that were due months earlier, but hadn't been chased as I'd been reluctant to become fully engaged in the transplant programme. It was December.
Eric made me realise that I could pull it off and I began to understand that transplant life is indeed better than Dialysis life, even though I was enjoying a full and happy life on the CAPD system.
In January to my surprise the hospital confirmed my Mum was a match and that further testing was to begin right away. And so the journey began. And what an exciting journey it was! In February we were called in to hear the conclusion of the results - my mum was a strong enough match and they were proposed to transplant the kidney in March. March! My jaw hit the floor - March as in, the next month? I left in a daze, knowing that life was about to change, again, and soon.
First things first - I needed a holiday to unwind after the busy spell; to enjoy some sunshine, to relax and to focus on the changes ahead. So I flew, Dialysis and all, to Barbados.
Kidney Research UK tackles the death taboo
A belated Happy New Year to you all.
The past few weeks I’ve been helping Kidney Research UK with a project that takes messages about kidney health and organ donation out into the community. A recent study has showed that certain groups of the UK population donate more readily than others and in a bid to save lives this is something the charity wants to address. The study also showed that death is considered a taboo topic, like poo, both for older and younger generations and the charity is keen to break that taboo. What do you think? Why don’t we talk about death until it’s thrust upon us? Surely to tackle the topic and plan ahead would be the best way to approach it. After – it’s inevitable that we will all meet an end, eventually.
On a brighter note I’ve moved to a fabulous new city apartment and I’m excited about what 2010 holds. My parents have begun the organ screening program and we’re keeping our fingers crossed that both are a match. My Mum hates needles and returns home resembling a well used pin cushion, and my Dad has suddenly ditched the wine and fast food for apple juice and lettuce leaves! I can’t help finding it slightly amusing.
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