Everybodys Talkin

It's been organ donation week in the UK. There have been lots of positive news stories showing how lives are changed by the gift of organ donation.

As a person who has lived with kidney problems since birth, leading to the need for dialysis at the age of 38, I can certainly agree that a shorter wait for a donor kidney is very welcome if not life-saving. I was lucky, I only had a four year wait.

The gift of a kidney literally gives the recipient a new lease of life. A chance to remember how it is to have free time, enjoy food, have the energy to do something active and feel like yourself again.

Thankyou to my donor's family. Thankyou to my donor. And thankyou to anyone who reads this post and talks about it to their family, so that, should the worst happen, the terrible decision may be slightly less terrible.

Nilsson provides the beautiful track...

How to Save a Life

Another year has passed. Nine years of real, enjoyable life as a result of another family's kindness. This is my annual post when my transplanted kidney is at the forefront of my mind.

A few of my daily dose

Kidney transplantation is a cheaper treatment for kidney failure than dialysis. Although most people have one more kidney than they need there are never enough kidneys for the people on the waiting list. France has recently introduced the opt-out donor system which means there is 'presumed consent' to donate. In the UK we still opt-in, by signing the register and carrying a donor card. In both systems family-members can over-ride the wishes of the deceased when the time comes. I'm not religious; I think that people should donate their body parts after death, but appreciate that the death-bed is a hard time to be making such a decision and I'm not entirely convinced that the Government should make the decision on behalf of the dead.

Make sure your family know your wishes

Please sign the organ donation register TODAY

I'm grateful to the NHS and the fact that it still (just) has enough funding to cover the dialysis costs for everyone who needs it, unlike some other countries. Of course, our poor NHS needs assistance from charity more and more as less 'real time' money is put into the system that we're so proud of. I hope my donated kidney lasts longer than the rest of my body so that I won't need to return to dialysis in the future. Having said that, the improvements to dialysis systems are huge and hopefully they'll make it to the UK from the US - wearable dialysis machines? Really!

Thank you to all of you who have already chosen to save at least one life after you've moved on...

Here are The Fray singing along to this post:

Organ Donation Week 2016

As it's Organ Donation Week (previously known as National Transplant Week) I was thinking about what my life would be like if I hadn't been fortunate enough to have my kidney transplant in 2008.

I would have been on dialysis for 12 years. Dialysis options have improved significantly in 8 years so some of these thoughts may be unfounded. Also, at the time, I had some good friends at the hospital who made the sessions a little more bearable. And you have to make the best of whatever life throws at you.

No allotment - Eurgh! Imagine that. As a dialysis patient the idea of digging an allotment would not have entered my head! Everything we've learned, grown, seen on the plot over the last 7 years wouldn't have happened!

Blogging - I only started the blog as a record of what we were doing on the allotment. Now if I ever have to return to dialysis (fingers crossed that never happens) I might blog about it, but it would be a bit dull, with no nice photos (like this post!)
Food - the strict dialysis diet makes food rather dull and kidney failure impacts on appetite anyway. My (slightly)  increased interest in cooking has only been as a result of growing our own.

Vegetables Only small amounts were advised - a bit tricky when you're a vegetarian, but my appetite was so small anyway. Fresh vegetables are too high in potassium so kidney patients have to over-over-cook them. For example, potatoes had to be double-boiled and the boiled-out nutrients washed down the sink.

Buglife - we've always enjoyed nature but having the allotment and the energy to work on it has provided the close access to interesting creatures that was missing from our lives since we moved to the flat without a garden.

Social life - we wouldn't have met and made friends with our lovely fellow plotholders. The allotment has opened up this side of our life in Hungerford. We'd probably still be more into computers and gaming. Of course, there's nothing with that, but real world is good too.

Sleeping - All the hours we spend on the plot would probably be spent sleeping. Dialysis cleans the blood but the tiredness remains.

Time off - I always treated dialsysis sessions (4 hours at the hospital every other day) like a job - but a job with no annual leave and no extended Christmas or Bank Holidays. And no sick days.

Holidays away - we first visited Tenerife while I was on haemodialysis, so it's definitely possible, but I certainly don't think we'd be having an annual holiday. It's more involved to arrange dialysis sessions away, locations are restricted and it's more expensive for insurance

Lethargy I'm certain that I wouldn't be learning spanish and wouldn't have taken on my new job. The inspiration to do new things isn't there when you're waiting for your next dialysis session, waiting for a hospital appointment, waiting for the call..

These are a few of my reasons why I see organ donation as 'a gift of life'. I wouldn't be dead without a new kidney but my life would be significantly limited.
Please have the conversation with your loved ones.

THANKYOU TO ALL THE DONORS AND DONOR FAMILIES 
AND THE NHS DOCTORS AND NURSES

8 Years and Counting

April 5th 2008 was an important date in my life. I was woken by a phone call at 4:50am and told there was a suitable donor kidney available for me at the Churchill Hospital in Oxford. I had received this call twice before, but on those occasions the kidney turned out to be a more suitable match to other patients than for me. But, with thanks to the generosity of a bereaved family, it really was third time lucky for me. The actual transplant operation didn't take place till after 11:00pm. The recipient of the other available kidney went to theatre earlier in the day. It was a long day, with lots of x-rays, blood tests and other tests to ensure my fitness and suitability to receive the kidney.

I thought this was funny

My new kidney was a slow starter. It was a long 4 weeks of waiting for blood results to improve before I could finally stop haemodialysis. That was probably the worst period during my whole 'kidney failure experience' and I still couldn't eat all those tasty foods that were considered off limits whilst on dialysis for nearly 4 years.

One of my lovely nurses, Raji, connecting me up for a dialysis session

It was during my convalescence that a note was posted through the door asking if we would be interested in an allotment in Hungerford. We knew it would be good to have a more healthy pastime for my new lease of life, rather than playing games on and fiddling with computers. But it was a bit too early to know how I was going to feel after the transplant so we put our names on the list. It was almost a year after my operation that we received an email saying that a new site was opening in Hungerford and there was going to be a 'stone clearing session' and that afternoon we started digging Plot 7 Marsh Lane.

Since the transplant, and having the allotment, Jamie & I have a healthier diet and lifestyle. The transplant improved my appetite (a little too much perhaps!) and the allotment has gone some way to improve our diet.
I have been mostly healthy over the last 8 years (currently 17 tablets a day keep my blood results on track). I check my regular blood test results online through the brilliant PatientView resource which I understand is available to all UK kidney patients and I meet my consultant to discuss how things are going every 3 or 4 months.

Renal Patient View

Please register as an organ donor and let your family and friends know if you want your organs to be used to improve lives, should the worst happen to you. Your memory will live on through your grateful recipients and your legacy can be saving lives.

 

That's Better...well, it should be soon!

Just another excuse as to why our allotment must be feeling neglected! Yep, I'm playing the kidney card.

Photographed on Tuesday

Some of you will know that we missed our holiday last year because my AV fistula failed.

If I hadn't received my transplant and still needed dialysis the hospital would have worked on the fistula to get it working again - some kidney patients have enormous problems with their fistulas but I was lucky with mine all the while I needed it.

Last November it swelled up and hurt a lot but within a few months the swelling, lumps and bumps just dissolved back into my arm - amazing really, I thought I'd have a lumpy arm for the rest of my days!
Actually, one lump didn't go... This aneurysm clearly wasn't going to disappear of its own accord.

Photographed on Sunday

It's not been that painful; just the occasional twinge but sore if it got knocked so it always felt vulnerable. So the Churchill Hospital said it should be removed and that was done on Monday.

In a couple of weeks I think I'll have no excuse for getting up the plot and dealing with that manure!!

Organ Donation - Please Sign Up!

Five years ago today at 4:50am I got a telephone call from the Organ donation team at the Churchill Hospital. They had a kidney which may be suitable for me. This was the third time I'd received the call during my four years on haemodialysis.

Jamie and I got to the hospital as quickly as possible. I had an x-ray, a myriad of blood tests and various other tests to be sure that I would be healthy enough to receive the transplant.
I had a final dialysis session in the afternoon and then tried to sleep as the operation wasn't going to happen till later in the evening. I went down to the operating theatre at about 11pm. The next thing I remember was waking back in my room; full of tubes and exhausted. Only then did I know for sure that the transplant had gone ahead!

My kidney didn't start working straight away, so unfortunately that wasn't my final dialysis session. I was allowed home a week after the operation but had to return to the Churchill initially daily and then every couple of days.

In all the time I was ill, the 4 weeks after the operation was the worst time. Every visit to the Churchill involved a blood test; a wait for the result and then the massive disappointment when I saw that the results weren't good so I had to have another 4 hour dialysis session. Then I needed a blood transfusion - I was depressed as I felt I was worse off after the transplant.

However, after 4 weeks, the results began to improve a bit. I didn't need dialysis but did need to be careful with my diet and drink plenty - hard after being on restricted fluids for 4 years.

Within 3 months I was feeling reasonably normal and only visiting the hospital every weeks. I returned to work 4 months after my transplant. Within 6 months the appreciation of the transplant really kicked in. From then on I realised exactly how much better my life is without dialysis.

I continue to see my consultant every two/three months and my kidney function remains stable. I met someone at the hospital the other day who has had their kidney for 37 years, so I'm fully expecting mine to keep me going for a long time yet!

Thank you organ donors and the NHS - I know where I'd be without you!

Join the NHS Organ Donation Register