Breath Of Life

The life and times of Mr Mark Allen....

Wednesday, November 30, 2005

Coffee and TV

Three Days Post Op....I was still attached to tubes.

The cards! Covering my hospial room!


Thanks to everyone who texted me after seeing us on Midlands Today on Tusday. Wasn't Nick Owen's introduction sweet and Suzanne's comment after the segment was lovely too!

What was nice too was people could watch a 'webcast' of the show on the BBC's website so my friends in South Korea saw mum and I on the telly too.

Amazingly Radio WM called me and interviewed me on time anyone up at 7.10am actually heard me!

There were pieces in the Express & Star (hopefully another tonight as they sent a photographer round) and there should me something in the Burntwood Post as I wrote a feature for them.

Talking of features. If any one knows if the Express & Star used any more of my features while I was in hospital can you let me know....Then I can invoice them for payment!

I had blood tests at Sankey's on Monday...the results were sent off to Newcastle and I rang up The Freeman today and they had all my 'levels' in front of them....They had even sorted out mum's accommodation for when I go to outpatients in the frozen north on Monday next week - we just have to sort out train tickets now.

I think we will actually take the deocrations from the front of the house tomorrow. We left them there while the TV crews and snappers were there.

I did my first 30 minutes on the exercise bike. Its so much more interesting when the telly is in front of it. Or I have Green Day on....for some reason Green Day and the Kaiser Chiefs are great to cycle too.

I also read some of the cards again (last count 160 of them) I was especially touched by people thinking of me who I wouldn't have expected to (if that makes sense)

So welcome D'arcy to your new home across the road. (I think D'arcy is the new horse) Becki and Jess will take very good care of you. They are the best!

And hello Amy (the papergirl) thanks for the card and I am sending you a great big huggle!

I went to the Park Gate with Gary last night (its ok doctors, it was empty and smoke free) Everyone was so kind there too. I don't know everyone who signed the card but I am sure I know you by sight.

It must have been a good night. There was even a smiley Katewaitress there! lol

Oh I nearly forgot I had a lovely charry phone call from two 'blasts from the past' my cousin Roger (hiya dude!) and Yana (A Welsh personage who I knew in Korean)....heady days.

Well I will love you and leave you now. I'm a celebrity...get me out of here!

Music: Green Day, Kaiser Chiefs, We Are Scientists,

Monday, November 28, 2005

More Media Tarting


Just a quickie (as the actress said to the bishop)...Its been a day of media matters.

We did some filming on Cannock Chase and in the house for Inside Out to be broadcast on January. Midlands Today also came along and did some filming for tomorrow's editions. So keep thoses eyes glued to the box.

I have to say the camera people and reporters were great. They were very friendly and professional.

This is a contast to the radio people who always keep us hanging around, never apologise for not phoning us back and generally get things wrong.(Oh this is such a stereotype but...well...)

Talking of which I am on Radio WM tomorrow (Tuesday) at 7.10am.....

You can catch all the above broadcasts through the BBC website if you live outside the area.

Music: Annie, Nine Inch Nai;s, Dogs, Nine Black Alps.

Sunday, November 27, 2005

The 'Inside' story of my new lungs...


This is the saga of my transplant......I will embelish it with photos in the next couple of days!

I was leaving Cannock Wood and Gentleshaw Village Hall on a Friday night after an entertaining show by a stand up comic/violinist and thinking how I was going to celebrate my birthday a couple of days later.

Being on oxygen 24/7 and having a most days full of nebulisers, drugs and vomit it wasn’t going to be much of a celebration. A few of us were going out for a drink on Saturday.

Still on the car park; I got a call from Neil, my transplant co-ordinator in Newcastle-upon-Tyne He called me to say there were some lungs which were still being tested that could be a match - Perhaps my birthday would be more exciting than I originally thought.

A Staffordshire Ambulance crew picked me up and I was on my way – in the knowledge I had had five previous false alarms that left me disappointed and on my way home.

The driver seemed in no hurry. He stopped at all the red lights and didn’t put his blue lights on to get past traffic. We were getting annoyed. I hope Bob Lee is reading this.

By the time I got up to the Freeman Hospital in Newcastle-upon-Tyne, things were starting to happen. (Not in that way…my pants were still clean!)

Surgeons were being called, tensions were rising and I was being tested for everything under the sun. Any infection or problem would make the operation too risky. All variables have to be right.

The results came through.I was fit enough. There was now an agonising wait to hear if the lungs, being tested inside the donor at a different hospital, were healthy.

By 4am we had the answer and I was shaved, gowned, had taken my first course of anti-rejection medication, and waiting to go down to the operating theatre. This was it!

I was about to have one of the most complicated and risky operations possible. The time flew in a blur. I had no time to get anxious.

The lifts were out of order so I could not use the customary wheelchair so get to theatre. So I walked into the anaesthetic room – very ususual apparently!

I had a couple of minutes to text friends, tell people I loved them, and say ‘see you later’ to my mum and then the sleepy juice started to get into my system and my life was in the hands of the surgeons.

Neil came out regularly with updates for mum, including that I was opened up and ready and the new lungs would arrive in about two hours!

He kept her up-to-date every step of the way, which really helped hero get through what must have been one of the longest nights of her life.

I was in intensive care by noon and gradually woken up slowly during the early hours of the morning.

By 8am on my birthday I was awake and chatting to the nurse about gigs we had been to. By 11pm I was in a recovery ward.

Ironically we were talking about the Grateful Dead. Perhaps not the best band to chat abour in a hospital.
We also discussed Pink Floyd at length. This WAS appropriate as I felt ‘Comfortably Numb’.

I had so many tubes and wires attached to me I looked more like Predator than me.

But I was breathing on my own, with oxygen, with someone else’s lungs. Somebody who is no longer with us, but lived on inside me and was now fighting hard to keep me alive.

The next few hours were scary. The strong painkillers including Morphine induced terrible hallucinations and nightmares. Sometimes I was laughing, sometimes terrified.

The drugs subdued any real emotions, which is probably a good thing. I still can’t get my head around what happened.

I was moved to Ward 27a on the evening of the day after my op. 27a is a ward just for transplant patients. It has a separate water supply to guard against infection. (We did everything with bottled water just to be safe)

What struck me about the ward was everyone got on, not matter what their rank or job. It is such a contrast to Heartlands where HCAs take your SATs and write doen the wrong numbers and I was for ever having to correct my own medical notes.

I don’t know where to begin with the staff. Linda is the most efficient cleaner on the planet, even if she does have a donkey ‘thing’.

The nurses with kids look far too young to have kids and in quieter moments we had games like seeing how many song titles we could come up with containing a particular word.

One was even from Tamworth – but I think she’s over it now.

So hello to Liz (enjoy the new job), Anna (she looks really cute wrapped up like a snowman!), Christine, Karen, Claire, Sharon, Tess, Ali, Alison (W27) the lovely Elaine (who is off 'down-under.'..that's not a euthanism) et al!

The days immediately post-transplant are the most crucial with the body open to rejection and infection, as well as hospital super-bugs and reactions to new medication. The body is weak.

Anti-rejection tablets lower the immune system enough to stop the body rejecting the new lungs, but hopefully not enough to leave me open to infection and disease.

Staff were eager for to be out of bed and walking – even though I was attached to a number of machines and drips. I wouldn’t have looked out of place as an extra in a disaster movie.

I think here are more drugs in my cabinet than Pete Doherty’s.

I am on tablets to reduce pain, antiobiotics, antifungals, magnesium and vitamin supplements and even drugs to reduce the side effects from other drugs!

I take drugs at 6am, 8am, 2pm, 6pm, 8pm, 10pm and midnight.

Of course these are gradually reduced over the weeks and months and I am already down on my original doses. Although I still rattle when shaken.

On October 27th I was off oxygen. This was a massive leap physically as well as psychologically I had been on oxygen for almost 3 years, 24-hours a day. At first I was hesitant.

It was my security blanket; My safety net. But soon I was enjoying the freedom and having a wander.

I had my first of several biopsies the next day. Where they take a sample of the new lungs and generally take a look down there to spot any disease or rejection. Luckily mine was minimal.

It did mean going back onto oxygen for a few hours.

The biopsy is done under local anaesthetic but you are given an amnesiac drug so you forget all about what happened. It just leaves you feeling like a zombie for a while.

Its like an instant temporary Altzeimers without the mood swings! I should try and get this stuff on prescription – then I could hide my own Easter eggs…he he

The pain was still sharp as ever and woke up in agony on 29th (day 7) But when I consider I had all my ribs broken and my heart clamped off – as well as numerous chest drains inserted and all my body has gone was only to be expected – I am still on numerous painkillers.

The trouble is if I have too many – I feel like a zombie (well, how I imagine a zombie feels like) and can’t function. Its like a hangover without the joy of the night before.

I can now officially call 50 Cents a wimp. I would have rather taken nine gunshots and then endlessly bleat about it than endure this.

I was also being stabbed each day for blood tests and injected with all sorts of chemicals to help the healing process and to numb the most painful parts of my chest.

I had almost 150 cards (not including birthday cards) including one signed by everyone at the PG, the horses over the road and even Amy the papergirl! There were some great ones.

I found I automatically got up at 6am. Because I liked to wash and shower and lay out all my tablets for 8am. This takes a long time because my movements were/are still slow.

The pain team (sounds like a torture squad!) visited me every day and have many devices up their sleeves.
Electrical impulses from a machine attached to my waist and endless ice packs also work miracles.

The amazing thing is how small the operation scar is. It is just a horizontal line between my nipples. But this is starting to fade I write this. It is very neat.

Within a week I was on the exercise bike and treadmill, slowly building up my exercise tolerance. I was learning about the drugs and what I can and can’t do when I got home.

Bizarrely two of the worst things I can eat are grapefruit and blue cheese!

Apart from that I have to treat myself as if I was a pregnant woman for the first few weeks, avoiding smoke, crowds and dirt. I could live with that!

I had a bad day on 3rd November and spent most of day in bed with a temperature. I went back on oxygen for a few hours and slept.

By evening I was a lot better. But I had lost 4kg in sweat!. Docs decided to do another biopsy the next day. This one showed zero rejection. It was just a bad day.

I spent the next few days getting back on my feet and getting into routine again. I was meant to go to the gym every day. This part is a joke - I went four times in five weeks..

It was always out of action, physios had not got enough staff or I missed it because of being taken for other tests or scans. I found a favourite staircase and would go there to exercise after breakfast every day.

I would stretch and do my exercises in the peace and quiet. I rewarded myself with a post-work out banana. Oh the simple pleasures….but I there was method in my madness…

I am on horrible magnesium tablets that are too big to swallow whole and when broke have jagged edged which get stuck on the way down so I am eating as many magnesium-rich foods as possible to try and get my levels up….(didn’t work of course!)

The nurses were talking about the scary ‘H’ word (no not that singer from Steps but HOME) I was apprehensive but excited…

Then disaster struck. A scan picked up fluid on one of the lungs. By the evening this was filling up my lungs faster than they could drain them. It looked as if I may not see the morning.

I was rushed into theatre while a surgical team was scrambled. Through their skill and speed I survived. But it showed me just how fast things can go wrong.

The site where they went in to repair me hurt more than the original op and the pain team gave me some injections. The problem was they went through nerves and ordinary painkillers cannot touch nerve pain.

To e-mail me CLICK

I also owe a lot to Gerry, a Malaysian doctor who used to be a CF doctor before coming over to the ‘dark’ side and working with transplant patients.

He said my transplant represented all the patients he had seen die on the list, waiting for transplants.

So we both had a vested interest in seeing I survived! I think I almost broke his thumb I held his hand so hard when they were inserting drains into my chest.

"Left a bit when you hit a rib," aaaaaaaaagh.

The doctors and staff on Ward 27a were fantastic. And I owe my future quality of life to Professor Dark and his colleagues who performed the transplant and the team who did the follow up operation.

Singing-doctor Janine was always happy with her bohemian sparkiness, normally as she was about to stab me for some blood. (Simon Cowell will be in touch.) She was sweet actually and said if we had met outside this situation we would probably be good mates....I think she's right.

A few days later I was allowed to wander further afiield in the hospital, check my phone messages (there were 40 the first time I looked).

It was good to get news from the outside world. I spoke to a few people and texted until my thumb hurt.

I also took this opportunity to get a treny(ish) haircut and check out the library.

Mum and I found a lounge with coffee machines that hardly anyone used and we used to go there some evenings. It had radiators. Radiators rock.

She had had several visitors staying with her in the relatives suite.

Aunty Judy, who is infamous on this blog came alone with BB. Mum’s former college buddy K, The Stimpsons and Jen and Alan Dyne all came up for a visit.

C and C took us to Tynemouth just before I went home. It was so cold we spent most of the time in a coffee shop. But the priory looked beautiful in the sunset. The beach is a surfers haven in the summer. Even the gulls stayed away this time of the year.

I was allowed home just over four weeks after my transplant. It is now the real work starts - to continue my progress will take a lot of pain and persistence.

It is hard and sometimes depressing as progress is slow and the process long.
Some take nine months before their lung function reached that of a ‘normal’ person. But I owe it to the donor’s family and myself to make the best use of these lungs that it possible.

My hope is to start running and playing cricket, badminton and table-tennis again – perhaps even aim for the transplant games - watch this space.

Until then I am going to be enjoying seeing friends again and getting back to some kind of normality and trying to improve my lung function, slowly but surely.

BBC MIDLANDS TODAY and INSIDE OUT are both coming to do some filming tomorrow (10am - after my blood test - and 2pm) – so if you are in the area. Come and visit me tomorrow and get yourself on the telly!

To see pics (not put transplant ones on yet) CLICK

Music: Mylo, All-American Rejects, Le Reno Amps, The Cinematic, Nick Cave, Mull Historical Society

Saturday, November 26, 2005

I'm Home!

Hello Blogettes,

Gosh its been AGES hasn't it....Well as you all know by now I have had my double lung transplant and now have part of someone who has passed away living on, through me. Its an honour and just so amazing.

I am on SO many tablets it's unreal...but the amount will slowly reduce... so excuse me if I'm away with the fairies (although that is nothing new eh?)

Don't worry I will put the eventful saga and some pictures on the blog over the weekend...(including those of the lovely nurses from ward 27a)

..The house has been 'decorated' inside and out by friends and neighbours and the odd relative or two. For this I thank you!

They even tied some yellow ribbons round the old oak tree outside the house! (and up the road)

BBC Midlands Today and Inside Out are coming to do some filming on if anyone is about and wants to help recreate my 'coming home' give us a call!

Until tomorrow.....

Oh yes....Hotmail decided to delete my entire inbox between March and the end of October! Bah! If anyone knows how to get it all back.....please let me know.

See you all VERY SOON!

Music: Brian Eno, The Rakes, Maximo Park, Mylo, The Arctic Monkeys

Wednesday, November 23, 2005

Breath Of Life


Tis me again - Auntie Judy.

I am pleased to say that Mark is doing so well, he is expected home this weekend. The docs obviously view the transplant as successful and any post-op problems he has experienced they have been dealt with successfully - they must be very confident that he will be a good boy and recover even better at home.

It has been a pleasure to pass on information to you all, and I thank you for all your comments. Over to Mark................

Tara fer now - Auntie Judy

Friday, November 18, 2005

Breath Of Life


Mark is now making good progress, chasing nurses around the corridors, doing a treadmill marathon, etc. etc. you know, the easy way to exercise. Did you know he is attempting the Guiness Book of Records for tablet-swallowing!!!(only joking), you should see the size of some of 'em, even a horse would gulp before taking them. When I next see him I shall ask him to write out a special message for the next blog to all his awaiting fans.

Tara fer now chucks

Luv Aunt Judy

Sunday, November 13, 2005

Breath Of Life

Hi there Bloggers

Update on Mark - a poorly weekend with lots going on, but now back on track for a speedy recovery (fingers crossed). He would probably write lots more than I can, you know what he is like, and I am sure he will make up for it when he gets back on line. I cant report on any gigs, or music, or any of those young-un type of things that he writes about (where DOES he get it all from!!!!!!!!).

Mark's Auntie Judy - again!

Thursday, November 10, 2005

Breath Of Life

Hiya Bloggers

Glad to report that Mark is doing tremendously well despite minor blip when fluid on lung, but now cleared. Hopes to be home very shortly, perhaps next blog will be from him.

Thanks for all the messages of support whoever and wherever they were from, he really appreciated the contact.

Luv Aunti Judy