February Came and Went

February disappeared in a whirl of wind and rain - it wasn’t allotment weather but we weren’t available anyway….

3rd Feb: I was working from home when I heard Jamie drop something three times in the bedroom. I wondered what he was up to, so went through. That was the start of the nightmare. I couldn’t understand what he was saying and then I saw that his left side was paralysed. It was very clear that he was having a stroke so I knew to act fast. I called 999 - the first time I’ve ever had to - within 20 minutes the ambulance arrived.

After some initial tests the ambulance whisked us off to the Great Western Hospital in Swindon. In A&E there was a crowd of hospital staff asking Jamie questions and I had to answer most of them, as he couldn’t talk/think clearly.

Jamie was wheeled off for scans to see what had occurred. They determined that he had a blood clot on the right-hand side of his brain - an ischaemic stroke. The doctor advised of the treatments available, highlighting the worst case scenarios - I suppose it’s better to be forewarned, but it was extremely scary. We had to agree to the clot-busting medicine being pumped into Jamie’s arm. This thrombolysis can cause further brain damage for some patients but how could we refuse something that might clear the clot? They quickly started pumping the drug into him. Some time later staff crowded round to check whether Jamie could swallow and, thank goodness, he was able to.

After close monitoring it was decided to send him to the Hyper Acute Stroke Unit at Bristol’s Southmead Hospital. Six blurry hours after the 999 call Jamie was in surgery having a thrombectomy to remove as much of the clot as possible. We were informed of even more frightening possible effects of this surgery but we agreed that doing nothing wasn’t an option. While Jamie was in surgery I wandered the hospital corridors and attempted sleep in various communal areas. It’s a 10 year old hospital, beautifully designed, with lots of space, but not a great place to spend a night -  however our car was 60 miles away at home… I was waiting for a call from the surgery team after 10:30pm. They were long anxious hours - the worst night ever.

4th Feb: At 3:30am I finally received the call to say that most of the clot had been removed. Jamie was in recovery and I could go to see him. On the surgical ward the surgeon spoke to me and again warned that they couldn’t determine how much brain damage (ugh, that phrase) had been caused. I didn’t know what condition he’d be in so I couldn’t have been more relieved when he opened his eyes and actually spoke to me. I wasn’t allowed to stay long so left him to sleep. So grateful to my nephew and sister for collecting me at about 9am and taking me home, to sleep. 

Later that day I was being advised by my worried family that I should rest and stay home. We didn’t know how Jamie was or if he was conscious but I knew I had to see him so I drove back to Bristol in the evening. After such a terrible previous day, it was a very positive visit. Jamie was pretty chirpy and eating. Though he was dropping off to sleep mid-sentence, the nurses were already talking about him starting his recovery exercises!  I visited each day and, although confused, Jamie was talking and enjoying the food at Bristol.

6th Feb: Jamie was moved back to Swindon’s Great Western Hospital to the Hyper Acute Stroke ward. Just 20 minutes from home so it was great that I could visit him twice a day and work from home between visits. His speech and movement were improving at every visit. The nurses were moving him to the chair to eat and I chopped his food so he could eat, otherwise he ended up wearing most of his food! The doctors were confident of a full recovery in time.

A week after the stroke he took his first steps using the Zimmer frame and nearly ran off down the ward - I heard the physiotherapist shouting ‘Stop Jamie!’ 😊

14th February Jamie was moved to Reading’s Royal Berkshire Hospital for his final rehabilitation before he could be sent home. The therapists spent time working on his strength and movement along with speech and occupational therapy. They got him to make a cup of coffee and he was regularly doing a couple of miles on an exercise bike. 

19th February and he was walking with a stick. The therapists worked with him daily which was exhausting but improvements continued and he even practiced some walking in the gym without a stick, but his balance isn’t very good.

26th February: Jamie came home with me, a week earlier than expected. A day after our 37th anniversary, but still a celebration ❤️

So Jamie’s now under the care of the Early Supported Discharge (ESD) unit - thank goodness for the protection of our NHS. They’ll offer care and rehabilitation for up to six weeks. We’ve had four different therapists and a nurse to visit, along with deliveries of support equipment for ease of washing, etc. 

The cause of the stroke isn’t yet known but we are expecting some test results to help with that. The best thing is that he’s home and continuing to progress slowly but surely. With medication, exercise, care and a reasonable Spring and Summer we expect a return to full health. 💜

Lucky You

This week I’m celebrating the first 16 years of my kidney transplant and enjoying the life it’s given me. I may still be mostly sheltering, due to Covid, but it’s so much better than if I was still on haemodialysis so I’m not complaining (well, most of the time anyway!).

I always celebrate our NHS and give thanks for a lifetime of treatment and care. All down to being born in the right place at the right time.

The lifespan of a non-live donated kidney is on average 15-20 years, but this average keeps increasing thanks to improvements to drugs and the after-care of transplant patients. Technological improvements continue to work towards an artificial kidney which will reduce the risks inherent in the dialysis or transplant treatments of kidney failure, meanwhile robot-assisted transplants are reducing risk during and post-surgery. AI is everywhere but we need human involvement too.

I have to pay for my immunosuppressant and other life-saving drugs, but my annual bill is significantly lower than the actual cost and I’m lucky that I can currently afford the charges. Poverty due to ill-health is a very poor reflection on society. Private healthcare in some countries limits post-transplant care based on available insurance - ugh, that’s not something I want to be worrying about as my transplant ages.

I hope one day our health and social care services won’t need the back-up of charity, but I fear we’re a long way from that world. Over the years I’ve celebrated my transplant anniversary and raised funds in different ways. Saving the 10ps for my 10th anniversary was most memorable. It was pre-Covid so I was at work and people were still using coins - I’ll have to think differently for my 20th anniversary, times have changed!

Talking of changing times, I’ve been playing with AI recently at work and using the fun Microsoft AI image generator. You should have a go, if you haven’t already. It doesn’t always get it right… I asked for ‘humanoid robot painting number 16 on a wall’ 🤭 As I said, we’re not quite ready to trust AI entirely!

I’m on leave and the weather’s not great for allotmenting, so here are a few more 16th ‘kidneyversary’ AI creations, using various descriptive prompts. Pretty aren’t they?

The song title is provided by the Lightning Seeds - we never know what this life is going to throw at us, but try to make the best of it, appreciate what we have and don’t blow it!

Always Something There to Remind Me

10 years ago this week I had my kidney transplant - I try not to go on about it too much, but I figure 10 years of a much-improved life is worth a highlight. My pills keep my kidney and the rest of my body working and working together.

There are a lot of pills, but they're just part of the daily routine so no problem - and if it keeps me away from dialysis for a few more years I'll be very happy to keep on taking them. To mark my 10th anniversary I'm saving up all my 10 pence pieces to give to the Six Counties Kidney Patients Association in a years time. And, since mentioning it on Facebook, I've had so many generous offers from friends and family that I think I'll need a bigger collection pot!

As a kidney patient under the Oxford Churchill Hospital I am extremely well looked after. I have a blood test every 3 months (more if I feel that I need something checked out) and can look up my own results within a couple of days using PatientView - it's brilliant. Then the following week I see my consultant to discuss my results, how I'm feeling, any issues and whether my pills need altering. It's a very smooth system, for me.

Thank goodness for our NHS! Where would we (I) be without it? Well I can guess, and it's not a happy place and I wouldn't have a lovely allotment to play about on!

Please support the NHS and sign up for organ donation if you can - thanks for reading.

Song title courtesy of various people but I couldn't find a good video, so here's a Sandie Shaw version...

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

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