A 50% chance of dying! I'm not having that - it's nearly Christmas (Part 24)

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So it turns out the cold was a little bit more serious than first thought.

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Here I am again, having a cup of tea - and some more treatment - back in the Royal Hallamshire hospital.

My cold-like symptoms are actually being caused by a virus called Respiratory Syncytial Virus (RSV). In most people it just gives them a nasty cough and cold.

Their immune systems will usually take care of it unassisted within a few weeks.

But for people like me, who are pumped up on steroids along with other immunosuppressants, the situation can be much more serious. If the infection takes hold and spreads it can cause pneumonia or bronchiolitis.

One of the doctors told me that in these cases mortality can be as high as 50% - crumbs!

I'm sure I'm going to be OK though - only 50%? I ridicule those odds.

When I reported my cold last week to the staff on P3 day ward they go through the following tests:

1. Listen to the lungs and chest.
2. X-ray my chest to see if there is any sign of infection.
3. Get me to produce a sputum (phlegm) sample.

INTERESTING POINT: When I was in hospital for my main stay I asked the nurses whether it was patient urine or faeces that they hated dealing with most and they nearly all said it was sputum they disliked above all else.

4. An NPA (Nasal Pharyngeal Aspirate) - this is horrible. They shove a tube right up, and I mean right up, the back of your nose and suck. This hunts for any viruses.

The sputum and contents from the NPA are sent off to the labs. Samples are taken and an attempt is made to grow, or culture, any bacteria or viruses that might be living there, and identify them.

On Saturday evening I got a call from the P3 team that virologists had detected RSV.

I have to say at this point a big thank you to everyone working behind the scenes in these labs. I know a few of you have been following the blog and just wanted to say that you have all helped save my life - along with hundreds of other patients - several times over this year.

Your work has meant doctors have been able to administer the correct antibiotics or in this case antiviral treatments as quickly as possible, which as you know is so crucial in keeping people like me alive.

Antibiotics are only effective against bacterial infections.

Viruses are generally a little trickier hence why there is no cure for the common cold.

But, luckily for me, RSV can be treated by inhaling an antiviral agent called Ribavirin.

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Starting first treatment. Attached to SPAG - small particle aerosol generator

Every other day I'm also having infusions of a substance called Immune Globulin which is supposed to boost my compromised immunity.

The reason I am so confident of getting over this little problem is because I still feel well, it's been caught early and I feel like I'm improving already.

My symptoms, as I described last time, involved feeling a bit run down coupled with an irritating cough. The only weird thing was that sometimes when I inhaled I could hear my chest crackling. It sounded a bit like a frog's croak.

Other than that I've had no fevers so the infection, thankfully, looks limited.

If people are ill around you at the moment, with similar symptoms to these, it is quite likely their cold is being caused by RSV. It's doing the rounds and for most of you it will clear up in a couple of weeks.

The only downside to this latest - but almost inevitable - setback is it's just really inconvenient.

Work was going great from home and I was doing gentle exercise again. I was just trying to build up some sort of routine in an otherwise unpredictable life.

My colleagues have been great and will pick up my work again but I feel bad because it just means they have more work to do in already busy days.

The problem for me is that I need to have treatments at 8am, 2pm and 8pm each day for about another five days.

Each one lasts for two hours with a break in between. People shouldn't really come in the room while the Ribavirin is pumping out - it's not good for pregnant women or healthy lungs - and because I've got an infectious disease I shouldn't really be leaving my room and putting other patients at risk.

That said, there's a couple of patients on here with TB who apparently keep popping out their rooms which if you ever needed an incentive not to leave your room that's as good as any.

So effectively I'm stuck here with no visitors and, as you can see, the mask makes phone calls a little tricky too.

Yesterday I pleaded with the doctors to let me go home at 10pm to which they agreed as long as I was feeling OK and my oxygen levels remained high.

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Don't show the News of The World. Ribavirin up nostrils after two hours.

It's not ideal but I found the break really helped.

I had started to feel a bit sick, the first time for months, and all the difficult emotions of being in isolation started to creep back into my mind.

It's just the little things like having to eat hospital food when they bring it to you, the sweaty condensation that drips from the blue covers that keep it warm, nurses walking in when you're taking a leak, the needle in your arm coming loose and catching on your clothes, trying to negotiate your way around the room when connected to a drip stand- just being lonely and having nothing to do.

I started thinking about sadder times and lost friends. It was as though the balloon of the last three steroid-fuelled months had well and truly burst into deflated strips of dishevelled and broken colours.

Going home was the best thing for me. It allowed me to snap out of this mood and buck my ideas up.

Today I've come back in armed with laptop, books, a few arm weights and a list of jobs to do.

Thank God I've got this blog to write too!

18 Comments

Dear Jill,

I'm so gutted for you. This cancer business is terrible and it just seems so unfair. I'm thinking about you.

Adrian

PS Was it super Sam Wood? He's got a girlfriend but we used to tease him about being a stud/lethario. Did he behave himself?!

hi, i'm sorry to hear you have not been well!
You really inspire me!! When I feel down I think of only myself, but then I come on here to read your Blog!! - You really put my feet back on the ground thank you!!

I really hope you will be better soon, you are a wonderful person, and a very strong one at that!! god bless you. (if you believe in God that is!)

You are in good hands!!

Love to you and your family x

"Today I've come back in armed with laptop, books, a few arm weights and a list of jobs to do."

Seriously Haystacks you need to chill, no need to be bringing arm weights to hospital. This dream of yours to become to strongest Leukemia patient ever is going to far.

I should know - I'm an expert!!

Crap! But Ribavarin is amazing stuff- 2 of my preemies had RSV while they were still immune-compromised, and after a few days on Ribavarin they turned right around. I hope that things work out as well for you.

That third snap puts me in mind of Westbrook

Hi Adrian

Sorry not been in touch for a while.Am having a job to deal with Christmas and all it entails as this is the first one since we lost Will.Anyway, you don`t want to here me moaning on! What a pain you`ve got this virus-like you said at least they`ve got onto it quickly.Speed is the essence with this disease and I`m sure you will be out soon.Very fetching photos of you - what amazing nostrils!
What do you think of this Capello chap as England manager?I think Martin O`Neill would be better but they should have picked him last time.
Crewe Alex still manage to inspire me-got a point last week with goalless draw against Walsall.Wow!Have you managed to get to any more Forest games?
The Young Farmers have sold out of those Calendars I told you about. I think they`re having a reprint.
Well,that`s about all of me rambling on. Hang on in there and I always think of you & check your latest blogs - so keep blogging!

Best Wishes as always to you & your family.

Liz

I don't really know what to say. I just began reading your blog last week and find you to be the most inspiring person I know. You make my self pity and complains go away. You made me open my eyes and see things from a whole new perspective. One with much more gratitude than ever before. Thank you for that. Your positive attitude is contagious. Thank you for keeping a blog of your journey. I wish you all the best for a quick and speedy recovery.

Hello there our favourite 26 year old....it is a bit difficult at our age but we do have fingers and toes crossed ....YOU WILL BEAT THIS ONE JUST AS YOU HAVE DONE THE OTHERS!Uncle Brian is back for another op next Tues and we know you will be thinking of him...lots of love to you and Poppy from Uncle Brian and Aunty Lucyxxxxx

hi adrian ,
just wanted to let you know that we're all thinking about you and missing you on p3 ( cant believe those lucky E2 nurses have the privelidge of your company ) .if you really have to be in hospital then we'd have liked you up here with us :-(
take care mate and try to stay strong .
love hels & all your entourage on p3 xxx

Well I don't know Adrian, there I am thinking about putting my feet up for an extended two minute tea break now you're back with the empire and thinking I'll have a look at your blog while I'm contemplating yet another Santa visit's school headline when I find you're back in solitary. How tough is that mate, I know it used to drive me mad at times locked away in my cell, particulary weekends when there was only a few nursing staff on and nothing much happening, you can only take so much day time tv, I mean what's your favourite, Homes Under the Hammer, Flog It or Sixty Minute Make Over! Answers on a postcard....
Mind you when you get through all this you'll probably still have your arm used as a pin cushion, I had more of my post transplant innoculations a few days ago, Hep B and some pneumonia thingy in one arm and then in the other I became one of the 87% of kids braving the triple MMR and then only after its done does the GP nurse tell me I might come out in blotches and spots and things later on!
I've gotta say I sympathised with your previous blob about how you now say it how it is and your intolerance to things that don't really matter. I think also that now that I have gone through all this I am ultra cautious about not putting myself into precarious situations that I wouldn't have given a thought too previously, I'm even a careful driver now!
By the way how did someone living in Yorkshire became a Forest fan, are you related to Robin Hood or was it the desire to see that Man U leg Roy Keane in his Forest days, one of my all-time heroes and I go as far back as having watched the Busby Babes pre-Munich.
Well I shalln't rant on any more I presume you've nodded of by now either trawling through this or watching Noel Edmunds play with his boxes! And I've just thought of my two decker head - Santa's present and it's all in a good Claus. Eat your heart out! Take care, Julian

Hi Adrian,

You're allowed to feel down from time to time you know. It's not a sin, but glad to hear you're once again, amazingly, bouncing back. What an inspiration.

All that talk of phlegm and nose stuff has fair put me off me festive mince pie. You're doing wonders for my waistline.

Sam behaved impeccably - then again, I'm old enough to be his mum.

I have to start chemo again early Jan - ho hum. Bit early to repeat it but 'tis the only chance and the consultant said my relative youth (!) and general fitness is in my favour. Side effects likely to be more severe this time round, they say. Still, at least I can enjoy Christmas first.

Your treatment sounds much more horrible and complicated - at least I won't have things stuck up my nose. Or have to eat hospital food - apart from a lunchtime sandwich on chemo day.

I will have to dig out my woolly hat - bought when I lost my hair last January. It had just grown back into a nice crop, too. It's losing brows and lashes that makes me look really odd.

Now, you take it easy, young man. Laptop, books and jobs are fine, but arm weights???!!!

Dear Adrian, Sorry I have not been updating on your story more, Becky has been having terrible headaches etc. Sorry to hear about the latest setback, don`t worry, like all those before you will get through it!!!

PS Love the NOSTRILS with the Ribavirin!!

Is it me or does it light up!!!

Love and best wishes Dawn xxx

I am from Taiwan, and a friend of mine told me about your blog. I have been reading it for the past month, and am sorry for taking this long to write something to you.
I was diagnosed with AML about two years ago. What you wrote in your blog touched me and I feel so much for you indeed. Some of the things you talk about were very similar to what I felt and I can relate to and understand what you went through. English is not my first language, so it makes it hard for me to express exactly how I feel to my friends who are English speakers. When I read your words, I felt, oh my god, that's exactly how I felt and what I thought, but I'm just not able to describe my feeling so clearly in English. To be honest, there are times that I had to stop reading and get away from the Leukaemia talk. It seems like the memories of suffering are still vivid.
However, Because of your blog, it settled something in my heart. Thank you for sharing and writing for the world to see.

So far, a normal life and being happy with the little things is already a great happines for me. I really hope for you to get better soon and to get back to living in a normal living situation without any treatments.
You are a strong person. There are a lot of people supporting you, and you certainly can beat this nasty shit! I think you know that anyway.

Hope to hear some good news in the next blog! Take care
Elin

Dear Adrian,
Haven't heard from your dad for a short while. Hope that you are feeling better.
Don't know if your Dad told you but we had a very nice chat with John Strivens' daughter recently
at her Mum and Dad's 120th (joint !) birthday bash. She speaks extremely highly of you of course !
It's a small world eh ?
Hoping that you have a loving family time next week.
All our love,
Andy,Anne, Tom and Harry

Hi Adrian
Great to hear you are home ! You were pushing us over the 250 gifts - but we dont mind the extra wrapping for our fave reporter !

Catching up on your blogs - with regard to being a guest speaker at charity events- you were fantastic when you stood in at our Ball, for our Patron Catherine Tate - you captivated the audience of 450 guests, and not a dry eye in the house, you were inspirational and spoke from the heart - thank you.

We have had an emotional week with the responses we have received from the hospitals throughout the UK and Ireland - we are shocked at the numbers of young people waking in hospital on Christmas morning.

Yorkshire Building Society have been absolute stars they have given us a grant to enable us to buy some of the 250 mp3 players that are now being delivered all over the UK - which is brilliant of them to react so quickly to our plea for help.

Hope you manage to get the Christmas shopping sorted soon, but not wanting to sound too sloppy - you are home - best gift of all !

Love and best wishes to you and Poppy and ENJOY the festive break.

Pam x
(santa's little helper)

PS: I suggest you avoid mistletoe - reactions could prove hazardous at the moment!

It has taken me along time and i dont think it will ever leave me, My son was 13 when he had his bone marrow transplant. My little boy who i wanted so much, to see him go through all the treatment, he tells me he cant remember, but without his transplant he would not be here now. We are 3 years on but still under a different consultant, his sickness and coughing still play a big part in our lives.he is going to have a operation this summer which should stop the acid and sickness, i would love to join in getting everyone involved with giving bone barrow, my son who is 17 this year would not be here, my girls were not a match. Please let me know what i can do as i dont know where to start Many Thanks
I want to help as many as possible now Please can i join you to make this more public
Nicola Cutler

Dear Adrian,

How about a new verb ?... 'to sudder' or 'to do a sudder' = to do a simple, pure, unselfish, NOBLE act that spreads to epic proportions and changes the society ? You are a legend in your own lifetime. Your blog has become, and is, an epic journey. Aeneid ? Hamlet ? You are a brilliant communicator, diarist and human voyager.

Don't know what else to say.

Geoff / Hong Kong

Hey Adrian,

I've just read all the entries in your blog. I am a biomedical scientist who work in a transplant lab (we deal with BMT as well as solid organs) and I think it's brilliant that you have been able to explain all everything to people so well. You probably know all the tests involved better than I do!!

Best of luck and belated happy birthday. I don't know how I missed all the happening but it was via a friend's (who works at ANT) email that I came across your blog, am glad that I stumbled upon it!!

Take care

Pam xx

About this Entry

This page contains a single entry by Adrian Sudbury published on December 10, 2007 10:42 PM.

A new existence and my first cold (Part 23) was the previous entry in this blog.

Out again and replies to readers (Part 25) is the next entry in this blog.

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