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

Blogfans,

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 through.it 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 already.as 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