Meet the patients: Sam Brown
The side of me very few people get to meet outside of Southampton General Hospital.
I was born with congenital heart disease (CHD).
Summary of procedures:
1987 - September – valvotomy.
1989 - Re-do mitral valvotomy and resection of sub-aortic stenosis.
1992 - Further re-do mitral valvotomy and resection of sub-aortic stenosis.
1993 - Insertion of St Jude mitral valve 23mm and St Jude aortic heart valve 19mm
1993 - Re-do stitching on St Jude mitral valve 23mm
1994 - Insertion of permanent pacemaker
1995 - Radiofrequency ablation of atrial tachycardia and recurrent atrial flutter
1999 - Pacemaker replaced
2002 - DC cardio version
2003 - Scoliosis surgery titanium rods fitted
2004 - Flutter ablation
2006 - Pacemaker replaced, intermittent atrial arrhythmia, two cardio versions and two ablations
2010 - Replace St. Jude's mitral and aortic heart valves (6th open-heart op)
Despite all I've gone through the worse thing of it all is seeing my dad cry, it’s always been when I'm being put to sleep so can’t do anything about it. I felt so helpless its gut wrenching.
My motto in life is: “Fear nothing”. There is NOTHING to fear other than fear itself.
My attitude in life is my glass is ALWAYS half full. In my opinion it never does anyone any good to worry about things and these tough situations either break you or make you stronger. I feel it’s the latter. That’s why I live my life the only way I know how to, the way my dad taught me - put up and shut up. I learnt as a child no matter how many eyelashes, birthday candles, pennies in a well/fountain I wished on I knew I wouldn’t get my wish – “just one healthy day, just so I can say I know what it’s like” so I stopped the dwelling on this and blocked it out as much as I could. I look for the positives in every situation.
My parents have brought me up with the attitude of ‘there is always someone worse off than you’. With that being said, it doesn’t mean I don’t get ticked off with having these medical problems sometimes, or the fact I've got to go into hospital AGAIN.
Growing up with CHD is difficult for me to explain, as I’ve never known any different. However I know what it’s like to be picked last in PE, to always have the embarrassment of being excused for PE in senior school. When I say always, I mean contact sports like football and rugby, however I did play as much of the sports I could; the odd bit of hockey, basket ball, badminton, tennis, swimming etc. Swimming wasn’t that big of a problem for me when I was at school. I wasn’t as aware or as embarrassed by my scars at that point.
When I was excused in PE the normal drill is to write out as much sports information from a booklet as you could, this stopped when I got a bit older as I said to them “look I do this day in day out there's no point on me turning up to class to write this out all the time”, so I became referee at hockey until we stopped that and moved on to the next sport. It was good to be included and not punished for being excused.
Playing out and about with my mates of course I was the one that was always caught because I was easy pickings! But if it was reversed I’d go for the slower one so I held no grudge whatsoever, I was generally put in goal because I couldn’t run the length of the pitch over and over which I soon began to love as I became pretty good as goal-keeper.
I used to cycle to and from school every day unless it was extremely windy or absolutely hammering it down which was a total of three miles a day. I did this right up until I passed my driving test whilst in 6th form.
This was also about the same time I supposedly had a heart attack, I say supposedly purely because I didn’t feel a thing! Whether it is a mild heart attack or not you should still feel the pain surely?
At the start of sixth form I remember thinking, right this is it, I get a new start in life this didn’t last long as I had to have my scoliosis op in October 2003 which I’m pretty proud of the fact that when I had my scoliosis operation I was out of hospital on the 12th day even though I was expected to be in hospital for 2-3 weeks. Ok so it’s just two days early but I would have been out two more days earlier if I hadn’t had fluid on my lungs. I was also told 4-6 weeks rest at home before going back to 6th form, one week at home was long enough, even though I filled every day with a walk round the outside of the house up and down the stairs for no reason other than to build up my strength, so after that I was back at 6th form with the back brace. During this time I hated having to frantically catch up with my work to finally get a merit in NVQ level 2 Health and Social Care. (Equivalent to four GCSE grade B’s) I like to think would have got a distinction if I hadn’t been off with having surgery.
Don’t get me wrong it was tough! I would have a long sleep when I got in. On one occasion I made the mistake of falling asleep on the sofa with my arm underneath me. This caused a completely numb and painful back combined with a very dead arm which meant I couldn’t move. I couldn’t get off the sofa to which my sister Alice thought was very funny and refused not to help me.
Because of this operation I then had to tell a load of people, who I didn’t want to tell, about my heart condition. As there is a strong possibility the scoliosis developed due to the previous open heart operations I had. I tell as few people as possible that I have CHD, I think maybe because there’s a small part of me that is ashamed/embarrassed and there’s the bigger side that thinks they don’t need to know so they’re not going to know. This being said I am however a very truthful person, I just choose not to have this as conversation, if I’m asked about it then I will begrudgingly tell you all you need to know.
I got a job at a nursery school where I thought new start take 2, but no, I was soon in hospital with further complications so of course more people had to find out. Pneumonia followed by an abnormal heart rhythm in the first four months of my contract and this didn’t go down too well.
Now three years later I'm at my new job, and BINGO! I'm about to have my two of my heart valves replaced again so I'm going to have to tell more people. I hate having to do this. I don’t like the attention it brings to me and I desperately don’t want to be known as Sam... With the heart condition, who needs looking after poor lad. Seriously, don’t treat me any different than you already have been.
Having a heart condition hasn’t stopped me having the best job in the world. I get to work/play/look after the bravest kids in Sussex at Chestnut Tree House, which is well known and the only children’s hospice in Sussex. Furthermore, I get to work with a brilliant workforce, who are the best care workers/nurses in Sussex. I am extremely proud to be part of that team, a team that don’t know this side of me.
We have a swimming pool and hydrotherapy pool at work for the kids, and I will not tell the real reason why I will not become a life guard, or a ‘swimmer’ is because of my scars, so I take it on the chin when I get called a wimp for not wanting to swim, so I just say I wouldn’t feel comfortable swimming, let alone supporting a child in the swimming pool.
Some people may think I'm foolish for not telling people, but I wear medical dog tags which I got at a bargain price of £4.99 which has my details, my ‘incase of emergency’ contact number which will then let the paramedics know all about my condition and alert my next of kin if I was taken ill and unable to provide their contact details.
Is it foolish to want to live your life your own way, without being wrapped up in cotton wool being told you can’t do this and that? I see that as a challenge and will always conquer it head on.
Transition - Ocean Ward to E2: (paediatric to adult)
As a child it was literally worry free as far as my medical care was concerned. I knew and so did my parents, that if there was any problem, however small they could just call Ocean Ward (E1). Whichever nurse answered the phone would either get a doctor to call back or say bring him in – sorted! Now being an adult, I have to wait in A&E which could be anything up to seven hours before they make a decision on admitting me or not depending on the other patients in A&E at the same time.
Being on E2 you go from being one of the oldest to one of the youngest which isn’t so great, and can be quite intimidating some of the time. Reel out a bit of history and you’re soon respected and not thought as a dumb kid.
I have however found the biggest difference from Ocean Ward to E2 is something I didn’t contemplate. It wasn’t the lack of free TV, games consoles or even something as basic as just sitting in the nice big kitchen to get yourself a snack for a change of scenery. The biggest change or difference was the patient’s attitude. I’ve noticed that they do like to moan an awful lot and they like to compete with each other on how many stents their having put in, or have already. But come operation day and there's no difference in them compared to the kids on Ocean Ward whatsoever, they too have that worried look on their face and the glassy eyes for crying.
I think I was lucky in a way that on my first stay on E2 I was actually on the short stay unit so I knew that although very boring, I wouldn’t be there for long. Lynda helped out yet again of course, by showing me around. Lynda showed me the important bits like the showers and toilets, introduced me to some of the staff which was a nice icebreaker. I do implore you all not to judge E2 by their fixtures and fittings which they are in fact currently improving all the time, the nurses there are well on par with the nurses on Ocean Ward.
There is however one downside from my point of view and that is that they won’t let you have a lie-in. Even if you have already told the tea lady that you don’t drink tea or coffee she’ll still wake you up at half six in the morning asking you if you would like a hot drink? “NO”, why would I want a drink when I’m asleep! Then just as you’ve fallen back asleep, “Mr. Brown, your breakfast” ...are you kidding me? Just leave it there please with the milk in a glass. This reminds me of another thing you don’t get on E2 and that is... TOAST!!
E2 has a ‘day room’ shared with E3 where you can sit, watch free TV and get that much needed change of scenery but it doesn’t mean you’re guaranteed to be able to watch what you want to if someone else is in there. It was great the last time I was in due to the football world cup qualifiers, all the gents went up there, with their oval tine teas and drip stands to watch all the England games!
They also have a brand spanking new day room, fitted out with nice new comfy leather sofas and chairs, a big screen television with a three different games consoles there is also a computer which unfortunately wasn’t up and running on my stay. This day room is just for Young Adults. Which I used quite a bit, I even had a sleep in when one particular patient was being ridiculously loud.
There will also be a kitchen for Young Adults when the revamp is completed. Hopefully with a toaster!
6 April 2010
Well today was the first time I met my surgeon Mr. Markku Kaarne (Consultant Cardiothoracic Surgeon).
Having been left waiting for a very long time, I then getting the usual formalities out of the way; height, weight (it never changes!) and ECG. I see Sue and Bonnie less and less now which is kind of sad as I know their due for retirement any time soon.
So the juicy bit, the chat with the main man! He is awesome, very confident which helps really when you’re about to undergo open-heart surgery! Another thing that made a big impression was the way he explained things, even with his pictures. As horrible as it may sound, I would hate to have a consultation with a surgeon that doesn’t communicate clearly and isn’t confident or passionate about their own work. So I was told exactly what the surgery would involve, how long it would take; “6, 7, 8 or maybe even 9 hours” so a vague Idea but nothing can be certain. I was also told that I need to watch my diet, eat a lot of iron, not too much saturated fats etc. So I guess that means the fast food meals are going to have to be cut down. Not that I eat them that often but being that I shouldn’t really eat them probably means I’ll be craving them something rotten!
Then on the way out I saw the utterly amazing Lynda Tellett! Followed by the utterly amazing Fiona Cooke! Where's Mel? These girls are quite simply a god send and I’ll take on anyone who disagrees. Lynda then spent a good part of half an hour introduced me to some of the staff in ICU (Intensive Care Unit) after which she gave me a tour of ICU. It’s absolutely brilliant, it’s funny earlier that day I was asked if I remembered any part of my previous operations or anything about being in ICU and I couldn’t apart from going for a walk, but being back in ICU (although a completely different location and practically brand new, ultra modern unit) all these memories came flooding back. I could remember the syringe fights with the staff, a singing father Christmas from Alan Blair, (the daddy of Wessex Heartbeat). Going for a walk and having my picture taken by a relative of another patient with an instant camera.
Then on to Wessex Heartbeat and my god how much it’s grown. I was about five years of age when Wessex Heartbeat was first developed. At that time they had a small office on E-level soon to have the Heartbeat House. Nowadays Wessex Heartbeat is practically the size of a ward and the house is about three houses big! I owe them so much. The facilities they provide are extraordinary. I thought I was lucky as a child to get a TV by my bed with a video player and the computer that used to come round now and again which was shared with by other wards, but that was soon to be replaced by the latest computer games consoles.
15 May 2010
Today I had my pre op assessment appointment where I met with Jo and Matt (absolutely brilliant) part of Mr Kaarne’s team. They had a chat with me about what was going to happen; the dos and don’ts before and after the operation (e.g. do not lift half a kettle full of water), I don’t drink tea or coffee so that doesn’t affect me. I know this was an example. I don’t want the doctors to have kittens on the thought of me lifting ‘heavy’ items.
I also had a physical examination, and then off for a blood a test. Where I had the weirdest chat with the blood lady (Phlebotomist):
“I bet you hate the colour red”
“No I actually like the colour of blood”
“Yeah but it’s someone else’s though”
Didn’t really know how to respond to that!
I’m starting to get stressed out for no reason other than the fact it’s playing on my mind too much, where as normally I just lock it away at the back of my mind. There's still lots of people that ‘need’ to know at work about my condition, and people who will wonder where I am, and I really do not want to have to tell them. Only four people at work know one colleague who has similar firsthand knowledge on the subject, my manager, my team leader and someone who kept on and on about where I was when I had my last clinical appointment. My manager asked how it went yesterday, that’s all she said but then of course it was open to the curious minds. So as she kept on and wouldn’t drop it I told her truthfully. If you ask me, with genuine concern and are trustworthy then nine times out of ten, I will tell you and be truthful at the same time.
I also got given a load of leaflets and some antimicrobial skin cleanser basically strong soap! This smells of nothing more than floor cleaner. I am not looking forward to washing with this!
My stay in hospital goes as follows:
Went into Southampton General Hospital on June 1st 2010, but the op got cancelled and went home June 2nd 2010.
I was readmitted on June 7th 2010 and had my operation on June 8th 2010. I was in theatre for nine and half hours, from 12 midday until 21:30. They kept me asleep in ICU until 0700 June 9th. At 11:00 they removed my catheter and leg line. I was then transferred to the High Dependency Unit (HDU) where I spent two nights. Following this I was moved back to E2 mid afternoon. Within the first week I had all my lines and stitches removed.
I gave myself a target of 10 days, I was home on the 11th and I felt gutted for missing my target!
- 1 mitral and aortic valve replacement operation lasting nine and a half hours.
- 1 removed catheter and leg line in ICU
- Marching on the spot in ICU with help from the physiotherapists
- 17 hours in ICU
- 2 nights spent in HDU
- 1 very long pacemaker line removed
- 1 chest line removed
- 8 days on E2
- 7 sleepless nights
- 1 neck line removed
- 1 suction drain removed
- 1 stitch removed
- 2/3 walks up and down the corridor with physiotherapist Lorna
- 2 walks to the cafe
- 3 walks to the shops
- 1 walk to Heartbeat House
- 1 x ray at 0100
- 3 blood tests between 0200 and 0300
- Daily blood tests from Giles in a respected daytime hour
- 1 visit to Mel for an Echo (NIC Non Invasive Cardiology)
- 3 ECG’s from various people mainly Carole
- 6 Balloons delivered from Aunty Jude.
- 1 package containing a balloon, box of chocolates and sweets from a friend at work Mel
- 2 pacemaker check ups
Massive thanks to the following staff:
- Pre Op team – Jo and Matt
- Surgical team – Mr Markku Kaarne and Mr Dimitrios Pousios
- Consultants – Dr Aisling Carroll and Dr Sujata Khambekar
- Adult Congenital Heart Nurse Specialists – Lynda Tellett, Mel Finch and Fiona Cooke
- Nurses on ICU – Lee and Sharmaine
- Nurses on HDU – Sarah, Rambo and Teddy
- Nurses on E2 – Alex, Bong, Caroline, Debbie, Emma, Eva, Jennifer, Jo, Julie, Kass, Kate, Ken, Lisa, Liz, Manjula, Mariam, Michelle, Natasha, Penny, Sara, Sue and Trudi.
If by some chance I have ‘missed you out’ it’s probably because you wear your badge back to front! Or I didn’t meet you.
- Nurses on E1 – Anna, Jo (play therapist), Margaret and Mandy
- Mel in non invasive.
- Giles – blood tests.
- Lorna - physio
- Aunty Jude
- Mel, Lynda and Fiona
- My old mate, the legendary Dr. Tony Salmon who just “dropped” by to see how I was.
- Keith and Sheila
- Big sis Alice
- Kim, Val and little Jack
And of course...
When I’m in hospital, I don’t really like having visitors, as I don’t like people seeing me at a weaker state. Though it doesn’t mean I don’t appreciate the visitors I did have, because I really do, very much so.
Plus countless texts and Facebook messages, from a huge support of friends in and out of work. Without these mentioned people I wouldn’t have been able to have made the quick progress I made, and to continue to do so. With that being said, and adding it to my sheer stubbornness, impatience with myself, my self competitive attitude of not giving in to things like pain relief and help when I probably could do with it is my winning success.
Like I said, bad situations can only make you stronger and I’m keeping it half full as always.