Widnes Catalyst Conversion

Hello Folks/Folkettes,

Still recovering from an evening at the pub in not-so-sunny Staffordshire last night - way too smoky (연기가 자욱한 - as they say in Korea)

There were also way too many bad kareoke attempts (not by me...The ONLY excuse for kareoke is more than a dozen pints and I felt physically full after about five...)

Bizarre week.....One of those where I seemed to either very busy or hanging around waiting for people to get back to me....Life is sometimes frustrating...

I did get to go to the Catalyst Museum (see pic!)- for a youth event (I had to take some pics...I am pretty useless at taking pics, as the drugs make my hand shake!)

But the mayor Cllr Swain showed me the view from the roof and gave me a potted history of Widnes....cool.. The view from the top, especially at sunset is amazing....

(As someone said if I can find beauty in a museum and a power station I have been in Cheshire/Merseyside too long!)

I got mayoral ovedose this week as I was also at a presentation to volunteers in the Coterie Hotel with him on Friday...

I am still desperately missing the gym and being able to go cycling and jogging - the high I got until Christmas after exercise - now already seeming a distant memory...

A lady from the Health and Community side of the Council will be meeting me next week so sort out a limited exercise plan - at least I aim to be fit enough to walk up stairs again soon without breathing like a rapist on heat!

There was a feature about me in the Halton Council in-house magazine and the Widnes World newspaper this week......

Thanks for the texts and emails....The rejection of the lungs is still the same...I am still frustrated nobody seems to have a plan of action for me.....Welcome to the UK eh?

My email pall 'Rain' in the US is having photopheresis, the treatment I mentioned on a previous blog for her rejection at the moment...all the best to her....

At last people in the US seem to be given an action plan of coping with this type of thing...

Well...Saturday night (as Whigfield once sang) and I am givng the kittens some TLC - it was their 10-month birthday last week.....

Probably meeting 'The Usual Suspects' at lunchtime tomorrow and then back to Widnes to watch 'Jay and Silent Bob'...

CLICK to see some of my pics

CLICK to hear some of my techno-pop effots

A beintot, pixieness and ciao babies xxxx

Walk The Walk....

Hiya,

I have had a couple of emails asking how I am coping with the OB (organ rejection)....

Well the days I feel up to it I am walking somewhere at lunchtimes (normally to pick up a prescription or to return a CD to the library..) It is only a few hundred yards...but it is a start!

I fine in a small way this makes feel better about myself and physically in less discomfort the following day.....I definitely feel better than I did two weeks ago...

Until they find a way of improving my lung function I must make sure my body copes best with what I have..I'm sure its all about mind over matter.

I met a guy at outpatients who I had played voilleyball with in November.....He told me he had had chronic rejection too a few years ago and had gradually seen improvements. He used swimming to build back up...

This is more positive than a pure medical opinion as I always need stuff to cling to. A man without hope is a man without life....

I am now getting someone to dust for me weekly as the cleaning materials make me feel short of breath and dust is bad news.....It is only for half an hour so is really cheap....

A bientot from Halton (where is all happens!) Busy day today as I am the only press officer in the office and its deadline day for the weekly papers.....

Pixie Love.... xxxxx

Dodgy Docs

Dodgy Doctors

Six reasons why doctors are not good for your health.

First of all I appreciate it is thanks to doctors that I have had a new lease of life and I will always be grateful....

1) Docs in Newcastle seemed miffed I wanted to be on the drug and not a placebo in a trial. If they thought it was going to help why not prescribe it before I deteriorated. I had to ask my consultant in Birmingham.

2) As my deterioration in lung function seems to have stablilised it was a GOOD JOB I did push for zyphromicin..

If I deteriorate they won’t have a plan of action so its better to stop deteriorating…Doctors think I am just a name and number on a study. But it is my health going downhill, just when everything else is going so well…..(Which should have been spotted earlier anyway!)

3) Nobody seems to have a plan of action and when I used my initiative to find treatment on the net they seems uninterested…

4) I have been trying for about a week now to get an email for my consultant in Birmingham as they don’t seem to pass things on to Newcastle and I want to make sure they are both in line…..Lost cause.

5) Birmingham didn’t pass on my scan results to Newcastle.. (arse and elbow??!!!)

6) My new GP in Widnes is a moody man who has taken three weeks and still hasn’t got my prescription right….These men get paid five times what I do. For what????

(I have told the receptionist (with a long queue behind me) that unless it is sorted by Wednesday and the drugs are IN the pharmacy I will be changing doctors...)

Anyway...Emma came down from Kilmarnock for the weekend and we watched too much TV and sawe Hot Fuzz at Halton Lea cinema....

Happy Lunar New Year you pigs!!!

Newcastle v Mold

Weekly update of all things Markish…

I went to Newcastle on Monday night – Sarah cooked me the stir-fry she does and we caught up on the gossip etc…

Newcastle was a bit of a disappointment to be honest. My lung capacity was the same as last time – so at least it has stopped going down…

I did want an action plan – but the response seemed to be ‘wait and see’. I did feel like a naughty boy sent to the headmaster’s office…

Got back Tuesday night. Wednesday I went to Mold in Wales for a meeting…The air is very fresh there despite the name.. It took an a hour-and-a-half to get back to Widnes though, because of the traffic...

I now have built up more flexitime than I am allowed to 'spend' ho hum.....

I may brave Widnes at night this weekend as Emma is coming down from Kilmarnock for the weekend....Any suggestions welcome....

Pixie Love xxx

Three Balti and a Wedding

Hello folks…and a snowy hello from 'up noooooorth'...

Just a quickie (ooer) as off to Willenhall tonight (with Mr and Mrs W for a Balit!) and Brum tomorrow (Alison’s wedding) back to Widnes on Sunday and up to Newcastle-upon-Tyne on Monday night for my check-up…No rest for the wicked…

I hope to still be at the PG with the usual suspects on Sunday – weather permitting…..I am putting some pics up of Halton’s UKYP election….Enjoy!

Photopheresis

Gosh its cold.

It was 8c in my lounge when I got up this morning….It only went up to 12c with the heating full on for 30 minutes! Cold doesn’t help me and I may leave the heater on all night from now on…..It was –5c when I got to work outside the car…

It would freeze the balls off a brass monkey.

I am still looking for the treatment for chronic rejection on the net so I go to my outpatients in Newcastle next week with knowledge and a plan! Check out ATG and photopheresis in Google...


ADJUVANT TREATMENT OF REFRACTORY LUNG TRANSPLANT REJECTION WITH EXTRACORPOREAL
PHOTOPHERESIS


Background: Extracorporeal photopheresis is an immunomodulatory technique
in which a patient's leukocytes are exposed to ultraviolet-A light after
pretreatment with 8-methoxypsoralen (methoxsalen). There have been few reports
describing the use of extracorporeal photopheresis in lung transplant recipients.

Methods: We reviewed our experience using extracorporeal photopheresis in
8 lung transplant recipients since 1992. All 8 patients had progressively
decreasing graft function and 7 were in bronchiolitis obliterans syndrome
grade 3 before the initiation of photopheresis.

One patient had undergone a second transplant operation for obliterative bronchiolitis. Two patientshad a pretransplantation diagnosis of chronic obstructive pulmonary disease,1 1-antitrypsin deficiency, 1 cystic fibrosis, 1 bronchiectasis, 1 idiopathicpulmonary fibrosis, and 2 primary pulmonary hypertension. Before refractory
rejection developed, all patients had been treated with 3-drug immunosuppression
and anti-T-cell therapy. The median time from transplantation to the start
of extracorporeal photopheresis was 16.5 months and the median number of
treatments was 6.

Results: The condition of 5 of 8 patients subjectively improved after extracorporeal
photopheresis therapy. In these 5 patients photopheresis was associated with
stabilization of the forced expiratory volume in 1 second. In 2 patients
there was histologic reversal of rejection after photopheresis.

Dumpy!

Hello folks…Well I am sure I will see some of you tonight at the Dumpy gig at The Park Gate…It has been a long week for many reasons…

It will be strange going back to Staffordshire for the first time in weeks too!

I got the scan results which weren’t too good so we won’t dwell on them…They have bumped up my meds anyway.

Been into a bit of a routine – home from work, hot bath, food – which seems to get me feeling a lot better and breathing easier before I hit the sack.

I am hoping that with the increase meds I may be eventually be able to do a bit of exercise, which will help me make the best of what lung capacity I have left…

At the moment I can hardly get up a set of stairs so I have to try something…or I will go mad…No REALLY I will…

It seems so distant that just two months ago I was going to the gym and doing 15 mins on the treadmill…

I have been busy at work making contacts within and without the council and getting publicity for stuff including our Youth Parliament and a rap and hip-hop workshop.

Sorry this is a mega short update…but its that Friday feeling time and I have an M6 traffic jam to hit!