Showing posts with label dialysis. Show all posts
Showing posts with label dialysis. Show all posts

Saturday 10 September 2016

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.
https://www.organdonation.nhs.uk/

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

Tuesday 5 April 2016

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.

 

Wednesday 13 November 2013

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!!

Thursday 8 November 2012

Holiday? What holiday?!

Well, as you can see...I'm not blogging about growing tomatoes in sunny Tenerife!
We didn't make it out of the country! We're so disappointed.

The Arteriovenous (AV) fistula in my arm, which was used for needling during haemodialysis, stopped working the day before I wrote the last post. Because I have my transplant I don't actually need the fistula any more but it's kept if there's a need for it in the future.
I checked with my renal unit at the Churchill Hospital and they told me it could be painful and to take painkillers. Well, there's painful and there's PAINFUL!
Clotting fistula
After another trip to the hospital and some antibiotics the decision was made - I couldn't possibly travel and wouldn't want to have been abroad with an arm that hurt when a sleeve touched it.
So we've got a couple of weeks in Hungerford instead!

Today was the first day we've ventured to the plot. The sky was blue and sunny but no life in any of our recent plantings yet (garlic or broad beans) and nothing interesting to photograph. The minimum temp has been 2° and maximum of 13° (not 28° like Tenerife - no! Stop that!!)

Anyway, back home pretty quickly to nurse my not-so-swollen-now arm.
Tut, such bad timing  :-(