illness

6 nights intensive and a month on the ward.
More later.

Good to have you back, Tone, we have been worried.

In your own time. I will deliberately mute my input to prevent you from laughing.

Some may say there would be no difference in my posting. They are cunts.

good to hear you are out of imminent danger Tony ...part of my downturn of internet  usage has been down to having a NSTEMI 29/05/15 ...Since then things have gone out of control  seems it has been caused by a rare connective tissue disease that seriously messes up your Heart and valves  Interstitial Lung disease and inflammatory muscle disease as well an  Then just to add salt to the wounds ive got a tumour on my adrenal gland that has in turn given me Addisons disease.

So Aoric stenosis valve now down to .9 cm  an ascending Thoracic Aortic aneurysm @ 5.6 cm Left Ventricle Hypertrophy and Septum which is being treated at the Yorkshire Heart centre at Leeds RI my blood pressure rarely get 85 over 60 with bouts of tachycardia as well ...its like being pissed from morning till bed time

Antisynthetase syndrome in conjunction with  Inclusion body myositis , Sclerederma, SLE (Lupus) waiting to see Hector Chinoy at Salford due to rarity...Barnsley hospital Cardiology, Rheumatology and Respiratory did fuck all for over 8 months and the progression since as been daft every visit since something extra gets put on the list  there's probably others ive missed off but im literately fucked just typing this  Because my lungs,heart and muscles are being attacked by my own immune system  the prognosis is not very good of reaching 60  54 as of now, but what the heck it could have been terminal cancer and 6 months.  

Hope your on the mend and i'll try and keep you all here better informed.

Take care all.

Jesus, BOAT, that's an unreal charge sheet. I hope and pray it's responsive to treatment - immunosuppression I know has come on an absolute ton in recent times and can give people literally a new lease of life. Can't profess to know the full ins and outs but obviously there are bits familiar to me. Do you think it's related to what happened before? Don't answer and fuck yourself up, btw - you need your spoons http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and don't waste them on me.

Fuck me, I never thought I'd be struggling to stay on the podium in terms of illness on here. Well we fight on. It's what we do.

NotBert wrote:Jesus, BOAT, that's an unreal charge sheet.  I hope and pray it's responsive to treatment - immunosuppression I know has come on an absolute ton in recent times and can give people literally a new lease of life.  Can't profess to know the full ins and outs but obviously there are bits familiar to me.  Do you think it's related to what happened before?  Don't answer and fuck yourself up, btw - you need your spoons http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and don't waste them on me.

Fuck me, I never thought I'd be struggling to stay on the podium in terms of illness on here.  Well we fight on.  It's what we do.

A cracking post bert. Its so frustrating having illnesses that are more or less beating the fuck out of every organ inside you. If i was a single fella with no family id have ended it some time ago. My life is like being on automatic pilot mode every waking hour just gagging for maybe a 3 or four hour stretch of kip but i wake up all the time feeling like im so hungover with a hangover from hell i can barely function till dinner time.

I read some time ago Keith Richards has regular blood transfusions and he feels like a new man immediately. Hopeful that this Chinoy might be able to make my journey a bit more bearable with a regime like you mention state of the art immunosuppressant drugs that can kick some ass or maybe even better growing my own stem cells.

Nobby Cheese wrote:6 nights intensive  and a month on the ward.
More later.

Tony  about 3 years ago i picked up a mint all white Siemens Klangmeister  RS 270 transister KLMU four band radio with matching white dotted speakers and recently read somewhere an article that was showing all the late 60s early 70s futuristic inspirations for Jobbs and Apple...  sound is awesome and very punchy

This is the actual item






http://www.radiomuseum.org/r/siemens_klangmeister_rs270.html

Hoping it will be a good usable investment in time.   paid around  45 quid and 8 quid postage if my memory is still serving me.

one here on youtube

In  September 2014 I had an aortic aneurysm  that  was about to burst and they went up through my groin to put in a stent graft the size of a child's bike pump....that should have been the end of it....Sadly it wasn't....After  a few months I couldn't walk more than 30 yards. They tried to adjust it in May  it but in doing so infected it ....I developed sepsis inside a week and but for being pumped with antibiotics 24/7 I was gone.
They then had to make the decision to take the old one out and cut my chest open from breast plate to my pubic area and cut the whole fucking mess out and replace it with synthetic material......a 9 hour operation that was a massive strain on my   heart as I suffer heart failure.
I was on life support for 24 hours, unconscious for 60  hours, then  spent 6 days in intensive care before being returned to a ward.
All this began on Sep 12th and here I am a  month later (discharged 2 days ago)  and now trying to learn to walk again.....My body is so weak I can barely stand....The physio says he'll have me walking inside a month.....we shall see. Sorry everyone else appears to be falling apart too.
Great radio set.

Nobby Cheese wrote:In  September 2014 I had an aortic aneurysm  that  was about to burst and they went up through my groin to put in a stent graft the size of a child's bike pump....that should have been the end of it....Sadly it wasn't....After  a few months I couldn't walk more than 30 yards. They tried to adjust it in May  it but in doing so infected it ....I developed sepsis inside a week and but for being pumped with antibiotics 24/7 I was gone.
They then had to make the decision to take the old one out and cut my chest open from breast plate to my pubic area and cut the whole fucking mess out and replace it with synthetic material......a 9 hour operation that was a massive strain on my   heart as I suffer heart failure.
I was on life support for 24 hours, unconscious for 60  hours, then  spent 6 days in intensive care before being returned to a ward.
All this began on Sep 12th and here I am a  month later (discharged 2 days ago)  and now trying to learn to walk again.....My body is so weak I can barely stand....The physio says he'll have me walking inside a month.....we shall see. Sorry everyone else appears to be falling apart too.
Great radio set.

Fucking hell Tony thats what you going through the mill. Was your aneurysm  the descending one ? Mine is just above the heart before the Arch, Ive been told they will probably do both at the same time so its waiting till they think one needs doing i see the specialist next Wednesday 17th. I actually picked up that my cardiologist in Barnsley had overlooked the aneurysm  as i spotted it on a letter from the respiratory specialist to my GP as i had to have chest CT scan as they thought i might have had a pulmonary embolism or Bronchiectasis due to coughing up some blood prior to day it happened. The Chest CT also picked up the adrenal incidentaloma tests later revealed it was suppressing the cortisol being made and that was enough to give me addisons ...dont really know i have it as i take my meds and try my best to manage it. So at the moment i'm in the process of finding the right Consultant/s to deal with the autoimmune stuff as this is a major problem with pain for me as its 24/7 and it lets you know that

Fingers crossed for us both mate Oh and also bert

My aneurysm was slap bangin the front and middle of my aorta.

Shall we start  our own death pool?

I had a fall on Sunday (on the up side, I was on a golf course) that made me think I now use the phrase "I had a fall", not "I fell". Fell over an unseen small log on to a far bigger log whose age when cut down can now be worked out by the wound/imprint on my ribs. Shit myself because I thought I'd broken a couple, I couldn't go down that heavy and get away with it but it seems I did. Only told you this really for the log gag above.

Like I said, gents, for all we age, we fight on. Stay as well as you can, one day we will piss petrol on our discharge sheets and set them alight.

Nobby Cheese wrote:My aneurysm was slap bangin  the front and middle of my aorta.

Shall we start  our own death pool?

If deaths continue in 3s i really dont want to put the spoke in for bert's future

NotBert wrote:I had a fall on Sunday (on the up side, I was on a golf course) that made me think I now use the phrase "I had a fall", not "I fell".  Fell over an unseen small log on to a far bigger log whose age when cut down can now be worked out by the wound/imprint on my ribs.  Shit myself because I thought I'd broken a couple, I couldn't go down that heavy and get away with it but it seems I did.  Only told you this really for the log gag above.

Like I said, gents, for all we age, we fight on.  Stay as well as you can, one day we will piss petrol on our discharge sheets and set them alight.

Well i'm not downing any tools just yet bert... medical breakthroughs are happening on an almost daily basis and this Anti Synsynthetaise syndrome was picked up by my new GP after the other partnership lost the contract.   She has been thorough, interested and is not even thinking about budgets for specialist referrals  when she thinks she's on to something.   Ive also given her my permission and supplied various pictures of dermatological manifestations of rashes on my torso, chest, neck, hand and nails that are termed as being like mechanic's hands which is unique to the syndrome.

Who knows the tide might have turned as today she put me on 6 5mg prednisolone daily for a week and already noticing a bit of improvement.

Pred makes you do three things - fuck, fight and feed.

Stay away from me then, eh?

30mg is a middling dose, good to see it's making a difference or at least a dent.

NotBert wrote:Pred makes you do three things - fuck, fight and feed.

Stay away from me then, eh?  

30mg is a middling dose, good to see it's making a difference or at least a dent.

Felt better on the steroids then the aftermath of the die off with the Antibiotics as kicked in