Movin' on

I spent the Thursday night in ARI with an infusion that put 2.5 litres into me and I had several calcium drinks that was literally liquid chalk. This brought the potassium down to 5 and the next afternoon I was allowed home.

Hospital isn't a place for rest and so after the Thursdays clinic trip and the night in ARI I was completed exhausted and the weekend showed it. It wasn't until Sunday late afternoon that I perked up and in the warm sun I took Kali for a walk.

Monday morning wasn't that great but after an afternoon nap I was able to accompany Caz up to the gym. This was more of an emotional test than a physical one but I came away stronger having talked with a select few. If I didn't speak to anyone reading this pleas don't take any disrespect, I had to manage what I was going through. I'll catch you soon.

Today I woke up feeling sick and spent the day doing paperwork. I then walked a decent walk that I would do pre-op, so that has lifted me. That's two major steps in the gym visit and a long walk.

Clinic

Caz drove me down and back for the clinic in Edinburgh. Its a 30 minute appointment where they take bloods, change doses in medication, check the wound etc. The Dr laughed when she saw me as i was walking briskly and compared to others 3 1/2 weeks after Transplant, she couldn't believe the progress in me!

My creatinine levels have dropped from a high of around 500 down to 166 which means the kidneys are working on getting rid of waste. However my potassium does seem to be sensitive.

I just got in and received a follow up call and, as my potassium has jumped up to 6.6, I am sitting here waiting for a call to go to into ARI overnight where they will treat it with fluid and medication. I'm shattered from the day, so its the last thing I want to do but needs must.

We took the Glenshee road over the mountains down to Perth. A lovely run, can't wait to do it again on the Triumph during the summer!

Milestone

Another Milestone achieved, the first being to get home.

Today I walked the dog down to the River Dee and back.



Some of you might want to sign here to stop legalization of whale hunting

Home

Having spent most of the day in a waiting room reading my book, the blood results today showed a decrease in potassium and in general an improvement and so they said i could go home.

Guess i'll just have to get used to this as the medicines get adjusted.

Potassium, along with calcium and sodium, is an electrolyte (mineral salt) important to the human nervous system, muscle function, fluid balance and heart, kidney and adrenal functions.

HIGH potassium (more than 225 milligrams per 1/2 c. serving)

High potassium levels can be very dangerous –if you do need to watch your potassium intake, it is important. Blood tests will show how you are doing.

Main sources of potassium and alternatives A basic guide on common high potassium foods to avoid hyperkalaemia:

HIGH POTASSIUM (To limit or avoid)
Drinks Fruit and Vegetable Juices, Coffee; Milk or milky drinks– up to ½ pint/day. Beer, cider, lager, sherry, wine
All dried fruit, Bananas, mango, grapes, apricots, rhubarb, fresh grapefruit, pineapple
Tomatoes, beetroot, plantain, mushrooms, sweet corn, avocadoes, aubergine, parsnip, spinach
Chocolate, toffee, liquorice, black treacle. Marzipan
Snacks All nuts, All potato crisps, Bombay mix
Baked or Roast potatoes, Chips
IMPORTANT – AVOID ALL SALT SUBSTITUTES (e.g. Lo Salt)

LOWER POTASSIUM ALTERNATIVES
All fizzy drinks, Cordials and squashes, Tea, Fruit tea, Spirits
Apples, Pears, Tinned Fruit (drained of juice)
All boiled vegetables, onion, carrot, turnip, cabbage, cauliflower, lettuce, cucumber, celery
Boiled sweets, mints, fruit pastels, chewing gum, jam, honey, syrup
Snacks made from wheat, corn or rice (e.g.Doritos, Wotsits, Skips),Popcorn
Boiled potatoes. Rice, Pasta, Noodles, Bread

Readmitted

I have been called in to Aberdeen Royal Infirmary as potassium levels have gone up. I will be kept overnight at least, although i'm still to keep my appointment at clinic in Edinburgh on Thursday.

Visitors

I'm feeling a lot stronger. My kidneys are working and I've been measuring my fluid intake/output since Saturday. it equals out and what a difference! My potassium levels have dropped to 5.0 from 6.2 and i expect today's blood results to see a further drop.

I had some welcome visitors over the weekend. Saturday saw my son Perry grab a lift off Bill Mutch and so a great afternoon of chat which exhausted me out. Sunday saw Peter and Paula Richardson, Gillian and Graham Williams come past at different times. All these broke the monotony and were a welcome sight, but it tires me out, in a good way.

Peter and Paula gave me some exercise bands which are really welcome especially as my arms are so skinny. Bicep 28cm, chest 105cm. I've never been so small, well - since I was small! Ill measure them weekly from now on. Im 78kg (12.3 stone/172lb).

They also brought along Deezal, a young Rhodesian Ridgeback pup that played with our aging lady.

Kali and a young enthusiastic Deezal

Gillian and Graham had been hill walking. Grahams about to walk around the alps in one go, having done all the Munro's continuously, so I'll be following his progress with interest in the next six months.

Over the last 3 months I have heard the sensationalist screaming of climate deniers jumping on any bandwagon that calls into question the science. That's OK as science has to be challenged and what survives the scrutiny has value in the scientific community. What is happening with the 'email hacking' incident - which was claimed to show it was all a lie - has not seen anything but profound silence after the independent inquiry totally exonerated the supposed corrupt scientist. You can read about it here.

Its typical of the world where the media sensationalist to pander to the prejudices of their audience. How many people though have been influenced by the loudmouths who are not savvy to the long term facts, who are simply influenced by corporate sponsored denier groups? We live in a throw away society and I for one spend my life doing the opposite.

I'll be spending my time of recuperation in the garden when I can, creating along with Caz a garden that will also produce food. I encourage you to read into permaculture and even if you have just a small garden in a city you can still turn it into something and this has been proved by Spiralseed. I know that it is close to election time, but I have advocated all my adult life self responsibility.

I dont want to sit back and expect a politician to organise my life with 2 minute moments of hate as portrayed in Orwell's 1984. I dont want to be a product or a pawn for some globalised profit making scheme that leaves victims everywhere. I want my life to be an example of what can be and with this 'second' chance I wont be changing too much but I wont be idling either.

We are not saying "Don't Vote". Whether we vote or not, or who we vote for, is largely unimportant. What is important is realising that it is not a cross on a piece of paper which counts, but how we spend the rest of our lives. Real change comes about not because we vote for it, but because we fight for it, shout for it, work for it. Placing hopes and fears on who holds power, or who will gain power through voting, is wasting time which might be spent in creating alternatives, both for ourselves and for our communities. Whether you choose to vote or not does not interest us. But we ask you: Organise! Educate! Participate! - Chumbawamba Statement - 1987

Pictures from Hospital

In the HDU - Dialisys

End of week 2

Kidney issues

Relaxing in the garden

My potassium levels are at 6.2. What that means, apparently is that the kidneys are not working properly. Since i have been drinking 2.5 litres a day of fluids, I'm not urinating it out. I was avoiding fruit and chocolate because they have high potassium levels.

The shock of coming out of hospital may have triggered it but it may be my Tacrolimus that is causing it. Tacrolimus is an immunosuppressant that i will take for the rest of my life, stopping my body rejecting the liver.

I got to see a new side to other peoples kidney issues whilst at hopsital. Some of the Dialysis centres deal with 100 people a day. About 40,000 patients in the UK are receiving dialysis or have functioning kidney transplants, which are grouped together as Renal Replacement Therapy, RRT. With the rise in child obesity and our societies reliance on fast processed food this is a number that could explode.

Kali comes home today, having spent the last few weeks in Inverness. That will bring it all together, that I have no doubt!

Congratulations to an old pal who moved to New Zealand and with his wife have just given birth to their daughter Lucia. A Chelsea babygrow will be dispatched asap!

“See you on the other side!”

Faced with driving myself down I took the route over the Cairn o’Mount which slowed me down and made an anxious journey a pleasant one. It was a swift but relaxed drive that saw me arrive at the Edinburgh RI Transplant Unit at 12.30. At the same time Caz had been up in Nairn with some of her pals on a spa weekend and had just made it back too the house where Kali was returning from a walk with a near friend.

I went upto Ward 206 and was met by the surgeon and the main Transplant team. Signing consent forms, I was informed the liver was in good condition. I changed into the gown and gave Caz the final call, saying “See you on the other side!”.

I was wheeled into the anaesthetic section and I don't recall anything else after that. According to report, I had an 8 hour operation that went without anything special happening. I was recovered but left in a sedated state until Wednesday morning. In the meantime Caz had made here way down and collected my stuff and simply had to hang around and stress.
I awoke on the Wednesday morning to the sound of a near patient shouting. If you read the Nov 08 operation you’d see the significance of this as it was a similar situation. I remained in ICU till that evening before moving into the HDU.

The HDU was quieter and you had a dedicated nurse. I was walked, washed, given dialysis, fed and given the concoction of drugs to make sure the Liver was not rejected. Dialysis was required to kick start the kidneys which had closed down in shock.

This was particularly harrowing as i was hallucinating heavily both visually and aurally. There was a picture by Van Gogh that was very much in my focus and caused some distress. I had an oxygen feed to my nose and this ran past my ear lobe causing a ‘rushing’ sound that led me to believe i was listening to he radio or music when i attached myself to a note!

On the Saturday evening i was moved up to the ward, a room shared by 4 of us. Whilst this gave me an outlet to communicate more, it was a very strange and hostile change. The first night I heavily hallucinated neon lizards climbing around the walls whilst I made a reality from the noises i heard, creating a madness that lasted all night. This happened for three nights and I was comforted only by talking to others who also said that they hallucinated because of the drugs.

I had no energy, trying too get up was nearly impossible and my thighs burnt as if after a long cycle sprint, simply from standing up. I needed to get more O2 into my body and they gave me The Bird which was featured on the previous video. This soon got my lungs working and I started to build energy in a very limited supply.

I knew if I wanted to get home that I had to start ticking the boxes, and since home means self medication I took control of my medication quickly. Not a hard task for me as I had self medicated for over a year on Cancer treatment.

Sleep was scarce as the nature of the hospital is that of a busy place. I rested when i could, exercised by walking around the wards, ate well and drank loads of fluid essential for the kidneys to operate.

I had a few visitors which helped break the monotony and Im eternally grateful to Caz for being there as well as the support to her from Rob, Steph and Julie. Visits from Perry, Wendy, Angie, Henry and even Justin who was over from NZ. As i was emotionally exhausted i kept away from the phone and the internet.

Two weeks after this major operation I was allowed home, well in advance of some who’d had their transplant a week before me. Coming home was a test in its own right and I went into a sort of shock but with the restful sleeps I could now have I have over come. After two years of fighting cancer and several more on top of that of poor health, I’m exhausted and relishing recovery time.

Today, Caz drove us down to Edinburgh for the weekly clinic I will attend for quite a while. They have taken blood in order to see if i need to adjust the medication but are in general very positive about my progress. There will be no doubt trials I’ll yet have to face and I haven’t even touched the emotional side of what has happened yet, so this episode is far from over. I do remind myself every now and then that I have beaten Cancer where many expected me to give up or be another statistic.

Instead the Cancer specialists are arguing over the liver as it could hold the key to getting Sorafenib more readily available on the NHS. I may be the first in the UK, definitely in Scotland to have responded in Liver Cancer with this medication, but as readers of this blog I am sure you’ll agree its more than just the drug, Its the whole attitude!

Pat exercising his lungs

somewhat weakened, pat raised his spirits to show one of the exercises he is using post transplant