How can you NOT Laugh at a time like this?

I bought this book on the recommendation of a fellow renal patient on the Kidney Patients Forum, and I have to say it is an inspirational work. The author Carla Ulbrich, known as “The Singing Patient” was diagnosed with an auto-immune disease and amoungst other complications suffered from Kidney Failure. Her anecdotes and short stories together with some of her lyrics and poems make very positive reading and is full of sound advice for people living with chronic illness.
Highly recommended!

# ISBN-10: 0981645348
# ISBN-13: 978-0981645346

It’s been a while….!

Firstly apologies for no updates for so long. Life has been….interesting!
So we’ve brought a New Year in, bringing with it a realization that I’ve been on my own now for nearly a decade! Sad to think that for one reason or another but mainly to do with health and self image I have taken myself off the market for so long. Seems like the blink of an eye! One thing I have promised this year is that I’m not going to be so hard on myself, it is after all not my fault that I have renal failure and have had since the early nineties, people can either accept that or not – I no longer care.

Hi Ho It’s off to work I go…or not

It was about November last year after our beloved new government set out plans to reform the benefits system and get people back to work that I decided that I would like to at least try and get back into work. I have no idea if I will cope or not but I will be letting myself down if I didn’t give it a try. After a few failed applications I wrote to my MP asking for advice for someone like me. Someone with a life threatening illness who has been out of work for a long while. She kindly wrote back suggesting the Shaw Trust and wishing me luck. The Trust specializes in getting people on Incapacity benefit and people out of work long term back into employment and can supply training to that effect. Apparently.
I signed up to the Trust on the Pathways to Work Scheme only to find on my second visit that they were having their funding pulled and my adviser had been given her redundancy! No training will be available and as of the end of March I will be signed off from them. Bloody Marvelous.
So I’m on my own again trying to apply for work in a time where every job is hotly competed for!

To Date or Not to Date….
Now back to dating briefly! I have been experimenting with dating sites and actually managed to arrange a date with someone recently. There were a few obstacles, such as I live in Norfolk and she lives in London…. but I thought to hell with it lets give it a go! I caught the train down to Kings Cross where I met up with my date. We seemed to hit it off quite quickly and went to the Natural History Museum and saw the Wildlife Photographer of the year exhibition, then on to the Victoria and Albert Museum. I have to say it was a very enjoyable day but it turned out my date had some very serious issues of her own which when I was brutally honest with myself made me come to the realization that added to my messed up life it would be too much for either of us to take on. If you ever read this Beena, then I apologize and hope you understand…!
Unfortunately the offer I had on that site has expired and I cant afford to continue with it, which is a shame because it was a format that I quite got on with. Ah well! Will have to stick to the free ones!

Swimming and Gymming..!
I made a sort of New Years Resolution with a difference this year. Normally I don’t do resolutions but rather do something when I feel like it, but this year I have decided to try and get my weight down and be as active as my body will let me. I go to the gym 2 to 3 times a week now and swim 2 to 3 times a week. Now, when I talk about the gym, I’m actually on strict orders to do only light to moderate exercise so to a normal person it probably seems totally unworthwhile, but I have lost a lot of weight and have to say feel better in myself. All the machines I use are set to their easiest level but it still puts my pulse rate up high! I may have mentioned it earlier but although dialysis is a very effective treatment for kidney failure, it does take it out of you and can lead to muscle loss, the heart being the most important muscle! So it make sense to eat a good diet and exercise as best you can.
This Tuesday I have a Transplant Assessment at Addenbrookes to see if I am still a suitable candidate for a transplant. I am hoping they will be happy with me and that my ECG and chest x-ray don’t throw up any nasty suprises….

Moving on Swiftly, or Going with the Floe

Gosh, wasn’t that last post totally depressing?!
You’ll be glad to know I did pick myself up again. I sometimes feel that men get some sort of hormonal imbalance once a month or so too, not nearly as strong as women do obviously, but enough to knock one off ones perch emotionally.
Well I’ve survived another birthday since I last blogged and I celebrated my 14th kidneyversary on the 14th Nov. My transplant is still hanging on by a thread. Although I still need dialysis I can still just about eat a normal diet (something to be positive about).

The FloeI read recently from the Addenbrookes Kidney Patients Association magazine about a young lady called Sarah Springett who had donated a kidney to her boyfriend. That in itself I thought was impressive, but she also is the lead singer in a band called The Floe. They recently released a single called “I hope you know” where all profits were donated to “Live Life the Give Life” a charity aimed at getting people on the organ donation register (Go to The Floe’s site now and buy it….you will, you will, you will….ah go on!).
Anyway to cut a long story short I went to see their last gig of the year on Friday. It was brilliant. Sarah’s vocal range and emotion has to be heard to be appreciated and Liz Townsend, the instrumental genius of the group, was no less impressive. The venue was Jurnet’s Bar in Norwich, a converted wine cellar and the perfect intimate setting for The Floe. I felt truly privileged to see them in such a small venue because I think they will go on to be huge.
Oh did I mention their Album is available to download on their site? It’s rather good…

Life is a lemon and I want my money back

It’s getting crowded in here with all these cheesy song titles isn’t it?
Feel I need to get a few things off my chest tonight, maybe I’ll feel better after I’ve blurted into the bloggosphere for a little bit…..You’ve guessed it, I’m feeling sorry for myself again!
Today was an enjoyable day for the most part. I took my brother with me to deliver some of mum and dads produce to a customer in Norwich – a big day out to The Fine City. It was good, we sat and had lunch, we chatted and had a laugh. We went window shopping for things we cant afford. I bought some small gifts for my nephew and nieces. Yes it was enjoyable. My brother and I don’t get a chance to relax and just enjoy each others company much anymore, which is sad. I got to feeling sad and thinking about life.

It’s sad that my parents have striven all their adult lives to be good people, be good parents and be good grandparents, providing all, protecting, nurturing, not just us as a family but many other people too (in my fathers case too many people to count) – only to be slowly destroyed by what they thought would be a dream life and retirement. They’ve got royally screwed by too many people and institutions to mention.

It’s sad that I have tried to follow suit and at least be as good a person I could – and got royally screwed by life.
There is no pot of gold at the end of the rainbow or happy ever after for me or it seems for my parents.
We are all worn out and broken people.

I got the bill from my mechanic for getting my car through its MOT tonight. It was over £300. I simply do not have that kind of money. I live on Incapacity Benefit and recently Income Support, a grand total of £93.45 a week and the hand outs of my parents. I have no savings.
My parents used to pay for my car and the cost of its running. But they have no money now either and I have no right to ask them to pay £300 with money they don’t have.

How did we get into such a mess?!

I am slowly turning into something I dread. A bitter twisted shadow of what I could have been if things had worked out differently.
Everywhere I look, everything I watch, all that I read shows me darkness triumphing over light. The bad and outright evil wallowing in their misgotten gains. The poor and weak being squashed into dust, people fighting to do good being killed, discredited or destroyed. The light seems to be getting fainter all the time……

I am truly sorry folks, this doesn’t make happy reading, Hopefully I can, as I have a million times before, pick myself up again onto all fours and crawl on!

Foiled again….

Well I should have known really…
I have been involved with my local village Social Club and the Chairman’s father in law is also a renal patient. We had come together and arranged with the help of the Club Steward, a fundraising evening for the Addenbrookes Kidney Patient Association (AKPA) on the 20th November where a “Queen” tribute band had been booked. Tickets were to be £10 and all proceeds go to the AKPA.
I spent an age creating the advert, Chris (The Cub Steward), Dave (Mr Chairman to you!) and myself have been putting up posters. Dave paid to have tickets printed using my artwork.
So the band call today to pull the plug due to illness. Not their fault, but FOILED AGAIN! Another attempt at raising some cash for charity is scuppered.
I’m gutted!

Dialysis, Delhi Belly and Damn it all

Apologies for no recent updates, unfortunately for me I have been rather ill this last fortnight with what is now assumed as food poisoning from a tasty but rather dodgy chicken jalfrazi, which seems to in turn have set of a Gall bladder episode. I don’t mean to be too graphic but haemodialysis with epic bum-wee is not a good combination and potentially very embarrassing as well as dangerous. In all it was a week that I would like to well and truly put behind me (!). Seems I have Gall stones as well so they are looking at whipping my gall bladder out soon too. Fantastic. I’m suprised its still there actually along with my other internal organs – I was quite sure I had passed them all out my bum at one stage.

The bad news is that this episode seems to have hammered the final nail in my kidney graft which while I needed dialysis was still functioning enough for me to keep to a pretty normal diet and my fluid restriction will probably now go from 1000ml to 500ml a day – a little under a pint in old money. This in turn is going to make it harder for me to continue to have much of a social life unless I want to sit there with my arms folded while everyone else necks pint after pint.

All this has meant that I have obviously had to stay away from the Papworth Trust for 2 weeks which was annoying – and unfortunately it has become apparent that my parents business needs me to help out as much as I physically can (not much I grant) as it is struggling thanks to those ever so nice, generous, bailed-out Banks screwing them over, so it looks like I will have to stop volunteering at the trust for at least the time being as my family and I pull together to keep the roof over our heads.

All that together with the fact that I’m lonely as hell right now means I’m a wee bit pissed off with life in general at the mo.

UCSF unveils model for implantable artificial kidney to replace dialysis

Some encouraging news for dialysis patients in the not to distant future hopefully. The following was taken from the University of California, San Francisco website newspage:

Source:
Kristen Bole
kbole@pubaff.ucsf.edu
(415) 502-NEWS (6397)

September 2, 2010
UCSF unveils model for implantable artificial kidney to replace dialysis

UCSF researchers today unveiled a prototype model of the first implantable artificial kidney, in a development that one day could eliminate the need for dialysis.

The device, which would include thousands of microscopic filters as well as a bioreactor to mimic the metabolic and water-balancing roles of a real kidney, is being developed in a collaborative effort by engineers, biologists and physicians nationwide, led by Shuvo Roy, PhD, in the UCSF Department of Bioengineering and Therapeutic Sciences.

To read the full article click here

model of the implantable bioartificial kidney

Model of the implantable bioartificial kidney