Tracheo-Oesophageal Fistula Stricture

My Story

Born unable to swallow in 1962 in England, this is my Own Account.

www.born-unable-to-swallow.com

Read the letters, from my Nurse from 1962, My Sister, a Girlfriend, and My Father.

It was a hard way to enter this world. My Father used to say, you are a very stubborn boy, I reached 48 and no one knew much about my condition, I knew more than the Doctors treating me, so instead of moaning about it I got off my backside to do something about it, and this website is what I put together, which has gained the respect and the Support of World Surgeons.

Plus with my friend, Sue in the USA we put together a Survey backed by a leading USA Research Hospital the UNC and received TWO USA Medical Papers as Authors for our idea. Something I am very Proud of, also getting this website is seen on USA TV in early 2018 means I am doing something right.

More about my life can be also found on the Adult Story page.

Also, you might find I add to this page as things happen to me as life goes on.

 

In July 2024 Stephen Wyles was asked by the Authors of Pediatric Surgery in Tropics (PST) aims to improve scientific communications among pediatric surgeons, to write something about his life.

Stephen Wyles with the help of his Sister, who was an ICU Staff Nurse and went though Covid on a ward in England, put their heads together and came up with more of Stephens memories, which has now been Published in the Pediatric Surgery in Tropics (PST) Journal.

This write up consist’s of things not written on the page found on the menu – Stories, on this website.

It is written on 2.5 pages of A4 size paper, pages 196 – 197.  Born unable to Swallow

 

 

 

 

 

Click on this link, then click on the page link saying (Read the Current Issue)

This takes you to the Pediatric Surgery in Tropics (PST) Journal. Scroll down to page 195 to read more about Stephens life.

https://www.pediatricsurgeryintropics.com/

 

www.born-unable-to-swallow.com

 

Tracheo-Oesophageal Fistula Stricture

stevewyles62

https://www.instagram.com/stevewyles62/

 

https://www.facebook.com/Steve-Wyles-Tof-oa-Ea-tef-2107757159457335/

 

 

Welcome to my story page

Life as a whole has been hard, but I have always been able to see the funny side of life, having spent a lot of time on a hospital ward its given me life skills that I may never have had. The ability to just talk to complete strangers, the ability of noticing what is around me, as a youngster I always knew where the pillows or blankets were kept, and how to get off the ward without being seen, a quick nip down to the local shop came in handy at times, because hospital food in the metal bowls was kinda yuck.

Watching my Father walk into the local village chemist and pick up tablets when I couldn’t swallow tablets, waiting till he had returned to the car and then telling him, Daddy they are wrong…

The none understanding of the fact I was born unable to swallow, that I really hated to eat much full stop. I remember being about 6 and Mum farmed us out to a childminder, I swallowed something that stuck, so thinking she knew better gave me dried bread to help it go down, of course, it made it worse. When I look back at what my Parents must have gone through bringing me up, but we laughed our way through it. I remember my early school days, yuck, I struggled with most things regarding school, the only good thing I was good at was making others laugh, yes, I do have a funny sense of humor.

Now school and apples, and what the teachers didn’t know. I loved apples but I couldn’t eat them with skin on, but as a child you learn how to cope with things others can’t do, I learnt from a young age how to bring food back up that was stuck, or force air or water down to clear whatever was stuck, teachers didn’t know this, worked in my favor most of the time when school lunch was with apples. Sometimes it did go wrong as these things tend to do.

Once in my twenty’s (20’s) I got something stuck, so as you do work comes first as I had a mortgage to pay, after working all day and also trying every trick I knew to clear it, I finally had to give in and go to hospital and ask for help, now this young female doctor called my name, I said hi I was born in 1962 with the condition called tofs, and I have something stuck, she replied, no you can’t have that condition your to old… she got a cup of water and said drink. After I’d drunk it she said off you go nothing wrong with you, you know when you’re lost for words, well I was and I left the hospital. Now I am a stubborn sod, as my dad would say, three days later same Dr they put me on the award. On a Friday having been there 3 days I was asked if I would like to spend the weekend at home because they might need my bed??? Monday I returned put back on the same ward, the young Dr came around as said they had set up a barium meal X-ray, I said that I wanted her there to view what was going to be seen, she laughed saying yeh yeh.

Barium meal, that was like swallowing chalk, later on, they would add flavoring, that was so your brain told your stomach something nice was coming. Anyhow so from behind the screen you heard OMG what is that stuck there, from the young Dr, my reply being is chestnut from my last meal 9 days ago being a Chinese takeaway. I spent 10 days in total in the hospital because a Dr said I couldn’t have the condition known then as tofs.

As you see lower down I worked in England’s biggest man-made marina for 16 years in the boatyard, I got to know the Dr. I was under at the hospital, so one day I asked him something, when I found him on a pontoon checking his yacht in bad weather, Sir, I have an idea, how about you look after me by seeing me fast if something stick’s and for that I will make sure your yacht is always tied up well in storms, that was a fab idea and worked really well, until I left and he retired.

The White Bucket

I hope this give’s you an insight into being born unable to swallow in 1962, enjoy the rest of my story page…..

Just something I would like to add about a beef burger and a white bucket, you see in my late teens I moved in with my Nan as my Parents had moved away from my Fathers job, I had a job building high-class sailing yachts, and at 19 was buying my first home, Nan said I could live with her until my home was mine.

It was a normal night out on a Saturday with a few mates, I remember being on a bus in Brighton, one of my friends said let’s have a burger……… well yep you guessed it, it got stuck, when I got back to my Nan’s house I was able to push it down, 20 minutes later i coughed up small amount of blood, which then turned into a rush in Nan’s bathroom, there was so much it even blocked the sink, Nan didn’t panic, unlike myself, she called for an ambulance, and two turned up??

I was rushed into Brighton to a smaller hospital, not the main one, out the corner of my eye I could see my Nan carrying a white bucket, it looked heavy too, god only knows what she had put in it. In the hospital the nurses took me into a side room to yes you guessed it, to take blood, the nurse said your Nan can wait outside, then I said I don’t do needles to which the Nurse said you can cuddle me if it helps, I thought, result lol

Nan later said she just heard a loud bang, I’d fainted taking the Nurse and table and me to the floor. I was transferred from that hospital to main one and back 4 times, to cut a very long story short I spent the worse part of my life throwing up blood for the next few weeks, I spent 9 weeks in the hospital. I don’t eat burgers now either, on the flip side of this nightmare, the Drs found I had something that I then had to take tablets for that, they tasted like chalk, for 3 years, 4 times a day. They had found a hiatus hernia. It wasn’t till I was fully on the mend yet still in hospital I asked Nan what on earth she was carrying in that white bucket.

 

Yes the white bucket, she answered,  the blood from my sink from you. I thought you might have needed it. (shock works in funny ways) whenever I see a white bucket I always smile. xx R.I.P Nan

Born Unable to swallow

My Story Born in 1962 unable to swallow

Before you start to read this, can I make the point that as a baby, having the two ends of your Oesophagus joined, does not mean your fixed and that’s the end of it…. for most children and adults born with this condition, no way have you been cured…..

Take it from someone who knows, l was born in 1962 and still struggle to swallow with every meal. As a child l hated eating, because it hurt, and if food got stuck it meant l was taken back into the hospital. As is the case at my ripe old age, if i can’t clear the blockage, its back to Hospital I need to go.

So my advice to anyone who knows a child who was born unable to eat….. GIVE EM A BREAK, it’s hard going as a kid with this condition, and for family, made harder by those around them who think once you’re …… fixed you’re CURED……….IF ONLY.

I was born in Lyndhurst in New forest in England on 10/8/1962, back in the day when surviving an operation to re-arrange your feeding tube and your windpipe was kinda rare. I was there for a few days when it became clear that something was far from OK.

I was rushed to the Children’s Hospital in Southampton, were the Surgeons, were general Surgeons back in those days. They found out I had something they called T.O.F. a/o. My feeding tube that should have gone down to my tum, was attached to my windpipe, and windpipe attached to my belly. This caused me to cough like mad when feeding.

From what I have been told, the op to swap everything back to how it should have been taken hours. Well, someone has to be different I guess…   I now have what is like an hourglass in the middle of the tube running down to my tum. Every meal sticks at the point of repair as there are no muscles to push it downwards.

I have spent most of my life up to the age of 29 in and out of Hospital, having things stick. Plus while growing you find the structure area gets narrower, and this had to be made wider, to allow food to pass through, this area, I found after the op, I’d eat tubs of ice cream, and suck on ice cubes, I found the cold helped with the soreness.

It was fun at school when the other kids would say, “I Bet I got the biggest scar!”

Yeah right. Mine looks like a shark has had a go. I even have a few holes (drain holes). I used to tell people a shark had me, and they shot at it but hit me… Fun to tell on the dive boat when I’d scuba dive. Some of the looks were priceless.

Anyhow enough about me. So you ask, why have I set up this website? Throughout my life in and out of the hospital, I never meet or was told about any other person who had this thing called TOF/AO. I just plodded on in my own way thinking l was on my own, until, one day when l was 48 years old and while talking to someone I’d known for over a year…….. yes a year….. we realized we had the same health condition. We were both born TOFS. She had ‘long gap’ which meant in her case, less time spent in the hospital, unlike me with the ‘short gap’. Lucky lady…

Meet My Mother

Meet My Mother

This is my Mother We lost her to Breast Cancer when she was just 63, I was around 40 at the time. I remember a time before this that I had traveled to the Isle of Wight one working day. I’d gone to work in Boatyard in Brighton but felt I needed to see my Mother, I took the day off and drove down to see her, having to catch the ferry to get to the island where they lived. They didn’t know I was coming, so it was a surprise for Mum and Dad.

Mum was really ill at the time, I sat on her bed and we talked and laughed, the time away. It was hard to see her so ill, but I am glad I took the time to visit that day. As I said my goodbyes I walked to the kitchen to chat with my father when Mum shuffled into the Kitchen, it was like, Mum what are you doing? Mum said. You cant of eaten all day, so I have got up to make you something before your long drive home, can you eat mince?

This act has always stayed with me, even when she was so ill herself she pulled herself out of bed to make sure her Son (Me) was looked after. They call this Mother’s Love.

To have a child like me in 1962 must have been life-changing for her and my father, yet through all those hard times, the lack of understanding from many many others they struggled forwards, the LOVE Mum showed for me that day in the kitchen lives with me to this day, that was four weeks before she left this world, her last words to me were, don’t stop the adoption. R.I.P Mum xx

In this photo above, I am around 23 years old.

Working on a Surgical Ward.

In 1962 I was a Staff Nurse at Southampton Children’s Hospital working on a Surgical Ward. I remember admitting a 24-hour old baby boy who had been born in the local maternity hospital.

On being offered fluids he had coughed and spluttered and became Cyanosed and Distressed. On admission, he was placed an incubator in a cubicle. He was specialised and needed suction and oxygen. He was fed intravenously whilst investigations were carried out. The conclusion was that he had a Tracheoesophageal fistula and an Oesophageal Atresia. At that time surgery was carried out by two general surgeons from the General Hospital who both did regular routine lists and also dealt with all emergencies. This condition was rare and surgery was complicated. It entailed removing the two dead ends of the and stretching the ends and Anastomosing them together under tension and closing the Fistula between the Trachea and Oesophagus.

Despite Stephen’s small size, he made a good recovery, feeding was introduced very slowly. He was discharged home with his parents who coped amazingly well until weaning was introduced.

From then on life was very difficult for Stephen and his parents. Food had to be thickened very gradually and everything solid could cause much distress, Coughing, Choking and even Vomiting. Stephen had to learn to eat very slowly and chew everything thoroughly; he had to cut everything into small pieces.

He became a quiet and withdrawn little boy who was slow to talk and socialise. He and his family learned by experience to cope despite No Support. Socially things improved and by the time he was four and at playgroup he was a happier little lad who socialised well with his peers and doted on his new baby sister.

Medically the problems began at this time, he had grown taller and the Oesophagus as it stretched, narrowed around the Anastomosis and eating became difficult.

From then on Stephen had regularly to be admitted to the hospital to have an Anaesthetic and have the narrow area stretched. This is something that is etched in his memory as in the early day’s parents were not allowed to stay with their children. These admissions carried on for many years.

Since he was 40 Stephen has coped without surgical intervention. The life he has lived has made Stephen into the mature, confident and caring person he is and I admire him for his desire to help others who have the same condition.

Ten years after nursing Stephen I worked on the new Neonatal Surgery Unit where babies from the whole region with this condition were treated. The expertise and treatments have changed radically. The Staff and Surgeons are Paediatric trained and the babies have a much better chance. Medically things have improved greatly but have the Follow Up Support?

Hopefully, this new venture will help change this.

My two Surgeons Were – Surgeon Mr. Tom Round-tree and Surgeon Mr. Richardson Southampton Children’s Hospital. (Stephen Wyles) UK  1962

Hi I am Steve's Sister

I am two and a half years younger than him. These are my memories of living with a TOF’S Brother.

 

 

 

 

We grew up with it being called tofs because of this Printed in 1958

 

 

 

 

My earliest memory of Steve is a time when he had been ill. Because he had been in the hospital, Mum and Dad had let him sit in my rocking chair when he got home. As you can imagine I was not best pleased and protested loudly! He just sat there smiling at me as I was told not to be mean and sent to bed.

At dinner times we used to have to all eat slowly so that Steve had someone to eat with, otherwise, he would not finish his dinner. I still eat slowly now and have been accused of picking at my food, when I am actually enjoying it.

At quite a young age I soon realized the one thing I was better at than Steve, was swallowing food. So, I used to dare him to try and swallow different food types. One day I said,

“Look I swallow a cherry stone, bet you can’t!”

Not wanting to be beaten he attempted to swallow one! Oh, my!

He started choking and trying to vomit. It was horrible. Next thing mum is rushing him off to the hospital and I am left with a neighbor. He was ok and came home a few days later with the culprit stone in a specimen jar! I felt very guilty and refused to visit him in the hospital. Steve got his own back on me many years later when he ran away from me in France, leaving me to get so badly lost that a search party had to be called!

I sometimes felt left out and was a bit jealous of the attention Steve got from Mum and Dad when he choked or couldn’t swallow his food.

My other memories of Steve as a TOF sufferer are:

  •  Him having his big scar and telling everyone it was a shark bite.
  • Our Dad saying it was a Badge for tofs (the Scar) be proud Son.
  • Putting all his food in on a bowl and mixing it up with lots of gravy.
  • Steve eating Rusk biscuits….. in his teens!
  • Steve making the weirdest faces when food got stuck and even stranger expressions whilst trying to get the food to go down.
  •  Only eating the brown meat from a chicken or turkey and hating chicken breast because it was too dry,
  • Fainting when faced with needles, injections or the site of blood.
  • Being really aggressive after general anesthetics so the porters had to sit on him!
  • Being the most annoying brother ever … But also knowing that if I was ever in trouble or needed help he was right there by my side sorting everything out.

Father and Girlfriends accounts

My Father’s Perspective

Added to 15-8-2019

Stephen’s father is in his 80s and Stephen asked his father for more info about his early years,

Marea and I were delighted to learn that she was carrying a much-wanted child, not that we knew the sex in those days, as months passed by Marea, who claimed to be five foot tall but never quite made it, began to grow around the waist and I joked that she would achieve her ”five-foot-tall” but around the waist. The other joke Marea suffered was, “ We saw you before you came around the corner”. I believe now that water retention is a sign of polyhydramnios which is present with Oesophageal Atresia.

Before Stephen was even thought of we put every penny we could into saving for a deposit for a house, we had a small wedding, no honeymoon so we could buy second-hand furniture and finally we managed to buy a house a few weeks before our marriage. This left a little bit of time and money to wallpaper the lounge with the cheapest paper we could find. With grand ideas, I set too, the paper sild off the wall and wrapped itself around my feet, oh, what a mess. My dad had to step in to help, he had a tin artificial leg but he finished the room teaching me along the way.

Why do I tell this story, well, just before Stephen was due, Marea had a bright idea of wallpapering the bedroom. Now my DIY skills had come a long way but it was not just the four walls to be papered but the ceiling too!!  I conquered the walls ok, which left the ceiling. Was it Isaac Newton who discovered the Law of Gravity with an apple falling on his head or me with ceiling paper wrapped around my head? Ha, an idea! I stood on the step ladder feeding the paper into place and Marea, all five foot of her and the use of a broom followed closely behind. After a little while Marea and her waistline started to tire, so being a kind husband I let her sit on the edge of the bed, with her broom, whilst I pushed the bed around the room and held the ceiling paper in place at the same time.  Marea suddenly screamed, she stood up and her waters had broken and she floods the floor. Being a man of action I rushed to my scooter and shot off to the taxi rank.

Now in the early ’60s, few had home phones let alone a mobile phone and no car either if you needed to get your wife to the hospital you had to hire a taxi, which meant you had to go and find one because you couldn’t ring one. I pulled alongside the only taxi, I clearly explained my panic to the driver who shot off at great speed, without letting me finish, he then broke hard and shot backward, he had forgotten to get the most important piece of information, he did not know where we lived. Well, the driver got Marea to the hospital in time. In fact, ten days too early!

Many think my Steve is a nice lad, well, he can take a long time to make up his mind about things and in this case a whole ten days. One moment he thought it was time to stop playing hide and seek pop out and stop me wallpapering and then he changed his mind and decides to wait a whole 10 days longer. The doctor a patient man, with bags of tiredness under his eyes, after much waiting grabs Steve by his toe and pulls him out.

More to follow From Dad…

What was already on page…

Steve’s mum was in and out of labor for 10 days before giving birth to him. Two days later the doctors realized that Steve needed an immediate operation and I received a phone call at work asking me to come at once to the hospital to sign the consent form. Fortunately, I had an understanding boss.

Steve was in the hospital for three months and during this time there were around 12 babies born with similar problems. One by one, they died. When we were at last able to take Steve home, there was no support group and we had to “suck it and see”, working things out by ourselves.

It could take up to 2 hours to feed him, a long time in the middle of the night after a stressful day and with work in a few hours.

Later, when a young child, he was given a cherry, stone and all. The stone stuck, how to get Steve to the hospital quickly, with no phone, it was evening rush hour, an ambulance would have to cross the city. Marea had the lone of a “bubble” car (it was the early sixties), so she set off. Stirling Moss had nothing on a desperate mother; hand on the horn, weaving in and out of the traffic! What did other drivers think? But, she did it. Yes, it was hard at the time, very hard, but we worked together and can look back and see the funny side of things.

I am around 18 – 20 here

 

 

 

 

 

 

Girlfriends account Pauline Early 1980

Our story

I was on the bus going to the train station a few weeks ago. I was looking at a website on my phone, I suddenly came across a story you are all very familiar with!

I was obviously engrossed as I nearly missed my stop. Some man said wakey! Wakey! I replied I wasn’t asleep just reading. He replied it must be a good story! It wasn’t good it was better than that! It was eye-opening; some of it made me feel guilty. Some of it taught me stuff I didn’t know.

Surprised! I spoke to Steve and he suggested I wrote the story down so here we go!

Initially, in reading Steve’s story I thought how could I have missed what the problem was. I was relieved that he also wasn’t aware he had a condition that others shared. I suppose also that’s what the website is about raising awareness.

Guilt over!!!!

About 30 years ago, I was asked by a friend and his sister to go and see his sister’s boyfriend as he was in the hospital. I don’t remember much about that visit other than a story about an apple getting stuck, which had caused a tear in his esophagus and reports of a sink full of blood. I remember going back the next night not sure why maybe the girlfriend couldn’t make it; I offered to get something for this guy as his Nan lived near my home address. Funny, really I never saw the girlfriend or her brother again.

I visited every night for several weeks. Obviously, this was to practice my bedside manner for my chosen career or maybe it was because I liked this guy. This man was kind; he had a sense of humor and whatever he was going through he tried to help others with kind words, the sense of humor came in handy for the months to come. Well, this guy came out of hospital he returned home. His cottage was near my college so I was able to visit regularly either before, after or during college. He got to experience my cooking that sense of humor came in handy again, 50 things to do with a chicken breast mainly involving condensed soup I think mushroom was a favorite. Shades of Grey sludge.

Reading the web page, Chicken was probably the worst thing to cook. He became well and the rest of the story is history boy meets girl etc. I went off to study Nursing, distance eventually finished the relationship. We stayed in touch he came to my wedding, my sister said on the way to Croydon, hey, if the groom doesn’t turn up you could stand in, she was concerned he was choking on something as he went very white.

This guys condition didn’t affect us other than sometimes he was tired, probably the medication he as taking and obviously being aware of him eating things that would get stuck.

You may have guessed the man in this story is Steve; I wanted to say I am proud to call him a friend, I am proud of what he had achieved in such a short space of time with the website how he has been inventive with the free to download posters, letters and cough posters for countries around the world, but I do wonder what he will come up with next?

My Scar as it looks now, at 53.

I found this Old Passport photo, I am in my mid 20’s in this photo.

My sense of humour has helped me get through my life in and out of Hospitals, allowing me to pick up life skills as I go, I now notice more around me than most do, I find it very easy to talk to complete strangers, I am a very stubborn person, I am just a happy go lucky chap, I try each day to make two people laugh, because laughter puts a sparkle back into your eyes. Dr’s have said to me in the past, you know you won’t be able to do that because of your condition? My view was ok, I need to try that little bit harder to overcome what they thought I couldn’t do.

As a child I used to dread meal times, but because of the way my Parents were there was no getting away with leaving food, times were hard, I respect my Mother and My Father for the way they struggled to get me to an age where I could understand better and talk to them so they also understood from my point of view.

To date I don’t eat burgers in my early 20s I forced down a burger after it stuck, it had a small splinter of bone in it, which opened me up like a can opener as it went down. (Dr’s comment) One of the scariest times of my whole life, to date.

I spent 8 weeks in Hospital, that’s when they found I also had a hiatus hernia, so something good came from something bad, I remember saying to my Nan after they put me on these white chalk tasting tablets, ‘these are just yuck, I won’t be on these for long’  Little did I know 3 years one 3 times a day. Then I was put onto Omeprazole at 25 back then my Dr said these are a £1 a tablet. This small tablet changed my life I still take it now and if I forget by dinner time I feel ill.

As your Child gets older things should get easier for you, and like me they will find their way to cope with things sticking, trust me I know, in 7 days time I will be 52. (10-8-62) I hope this website has helped in some way for you. Getting the awareness of your child’s condition noticed and understood more is now down to you.  I have a saying which goes like this.(there’s no point in worrying about something you can’t change. But If you can change it, why worry) x

My Scar as it looks now, at 53, or the Shark Bite as it looks now lol Used to scuba dive, had some really funny looks

 

 

 

 

 

When you think it can not get any worse

I suffer badly with constipation, always have done, this is a true story when I was about 46, I had just had my dinner and I started to feel really unwell, so I went upstairs to the toilet, which was next to Josie’s room, she was young at the time. I remember I started to sweat real bad which is strange as I never really do, I started coughing, to be honest, I didn’t know what to do with myself, I felt sick, the pain in my stomach was getting worse too, Sam my wife came up and asked if I was ok? as my coughing had woken Josie up.

I remember thinking I need to contain this so I stripped to pants and T-shirt and got into the bath, where the thought was, it would be easier to clean. The pain, the coughing the sweating just got worse that my wife called for the Paramedics on an emergency No. They came fast but I was also in for a shock, they were not happy that I had climbed into the bath because they had to somehow get me out. I remember being put on a seat so they could carry me down the stairs, I remember very well Josie crying and saying, my daddy not well. Even to this day if I cough badly she gets all funny with me.

I was taken to the ambulance parked up outside our house, my mother-in-law turning up to look after Josie. The crew had no idea what was wrong with me, but my heart rate dropped, and they had to stop I remember, on the way to hospital my heart rate dropped again, on reaching the Hospital the team were waiting for us, they were on it in a second, then panic set in, unbeknown to me my heart rate dropped to 19 beats, they pulled my wife into a side room and told her I might not make it. (I think it had something to do with Hospital feeling like home, and knowing I was home I relaxed) so from an already low heartbeat, it just went lower.

while there in the middle of all this, a nurse inserted a catheter into my private bits, which hurt like hell, but I wasn’t happy to hear someone then say its the wrong size it needs to be changed….. like it hurt enough the first time around lol. maybe it was this that brought my heart beat back up?

I was placed in a ward nearby, and my Wife was allowed to sit with me, if I am honest I don’t remember much after this. The English NHS Hospitals did have a lot of foreign nurses on the wards at this time, I remember coming to and thinking where the hell am I as the nurses were not talking English, which I found unnerving, to be honest. One such time one came to my bed pulled the curtains around my bed, while my Sister sat there, (who herself was a Staff Nurse on an intensive-care ward) this foreign nurse had not asked who she was and started to undress me for a good old famous NHS bed bath. I mean I am close to my Sister but not that close lol. I heard a few words from my Sister to the nurse before Helen left.

Ok so after two days on the small ward they decided to transfer me to a different ward. So I am loaded onto a transport bad for the ride upstairs, on route, I had two foreign nurses, and two English porters, now I like a bit of banter like most, and the porters were teasing these nurses, in the lift we went, and there was a quiet bang, no one took much notice…….

Until I screamed with such pain in my lower bits, the slight bang was the catheter bottle falling off the trolly bed the wrong side of the lift doors. I have never screamed at a porter like I did at that moment, my bed sheets turned red, this extended my stay in the hospital, for a longer time, the reason I was there in the first place was due to constipation, although I had been going it seems, not enough. At the time it was not funny, over time we have come to laugh about it all. Plus I have learned a few things from all this.

Never get in the Bath…. if feeling unwell

Plus I never made a complaint against the nurses or porters, as I was most likely in the middle of the banter between them, and they knew they had messed up.

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Two funny stories that came to my mind today, these happened to me.

1st/ As you may already know, some of us old folk, though the use of some types of early drugs has a yellow tint to our teeth, not white. Plus our teeth are weak in makeup. In my 20’s l was having plenty of problems with my teeth, some just broke when eating bread, so l had to be mindful of this. I had to go to the Dentist to have a wisdom teeth taken out because the side broke off. The Dentist drugged me up and out came the tooth and home I walked. A few hours later l woke up in a hospital bed on the (DRUGS OVERDOSE WARD) on my way home I had fallen over in the street and someone had phoned for an ambulance, l was out cold away with the fairies, the Dentist had, in fact, overdosed me. I spent 3 days in that ward before they let me home, and 7 days off work to allow for the drug to leave my body.

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2nd/ While in Hospital waiting to have something removed in my late teens, I was in the theatre when the Dr said open your mouth while l spray the back of your throat, I said, so your not doing this under general anesthetic? Nope he said, so I swung my legs over the side of the trolley, hopped down and with my hospital gown flapping like it always did, I headed for the door, He said, where are you off to, I am going back to my bed …… until you do this under what I had signed for, It won’t hurt Dr said, I replied so you have had it done yourself ?? No, but it won’t hurt…… I had walked halfway across the Hospital to my ward when the Staff Nurse got to me telling me they were going to do it under general.

After returning back to the ward on a trolley after the op, I felt rough, to say the least, I hurt, it felt like I had run miles and been involved in a punch up, my chest, arms, legs were bruised ????? When I asked Staff Nurse why l looked like I’d been in a fight, she said that I’d had a very bad reaction to the general anaesthetic on the way back from the theatre, and the only way to have stopped me from bouncing off the trolley was for two people to have sat on me ……………. I always thought about that day, why it was that happened, I guess the Dr didn’t like getting flashed by my backside as I walked out of his theatre lol (Joke)

Getting OLD !

Having had a major motorbike accident in my late teens (19) being x-rayed and finding my lower back was curved from it seemed birth, this answered a few questions as to why I used to get back problems. So it answered one question but having smashed my knee into the fuel tank of my bike things in later life was going to possibly get interesting…

Over my working years, I have had to work hard to overcome things my Doctor said you might not be able to do. It is a great feeling in doing things others say you can’t do, I am a stubborn guy, we all have seen in films where a horse will not move no matter how you pull him, push him, he will not move his mind is made up. that’s me.

Starting work at 15 not being able to read or write, having been in and out of the hospital most my childhood, and fighting bad dyslexia, and ongoing health problems too, life had to be hit head-on. I remember my Dad saying to me once, it does not matter you can’t do the things others your age can, as long as you have a good sense of humor and common sense your be fine. Goods words of advice. Having spent years in and out of Hospitals I learned social skills, like being able to ask questions, talk to complete strangers, etc things that would help me in my life.

Over the years I have had to cope with severe constipation, this in its self is total a pain in the bu**. Drugs can affect this, life can affect it too. The longest time of not being able to go was around one month, and the hospital tried everything they could back then, my girlfriend Mandy, at the time cooked all types of meals that are meant to help. I underwent tests for bowel cancer. Then it just started it was like winning the lotto, no more tests. I have undergone two cancer scares, the one above and Testicular Cancer when a blood test, came back with a marker in it, this got as far as the Hospital sitting me and my NEW WIFE down and talking about removing one, scary stuff believe me, but that to turned out to be a false alarm. Being born like I was many things didn’t, work so we ended up adopting a child, who turned out to herself have a very rare condition.

Severe constipation has put me into the hospital around 4 times, and yes I talk the best meds I can for it, it makes me feel very sweaty, hot, I feel like I need to be sick, I cough and the pain is really bad, I got into our bath once because I thought whatever was going to happen it all would be contained, well I thought it was a good idea lol, but the emergency ambulance paramedics did not, I got a rite old telling off, I mean I was really ill at the time to. They had to get me out of the bath and down the stairs and trust me I was getting an ear full all that way, so much so I have never done that since. On the ride into Hospital under lights, they had to stop as my heart rate dropped to 35 bpm in Hospital the team took my wife to a room and said, we might lose him as his heart rate has dropped to 19 bpm. I pulled through within that following week.

I have collapsed at work through this, and the fact I also suffer from low blood sugar levels. I also struggle with colds I get the flu jab each year because if the cold gets a hold I get bronchitis bad. My cough my doctor says is like nothing he has ever heard before, guess its good to be unique lol

This month April 2019 has by far been the worst time I have ever had with fighting a cough.

It started on a Saturday afternoon, did not think much about it to be honest, Sat night Sunday morning OMG I was so ill I phoned out of hours Doctors, told the Dr. what I had been born with what happens if I don’t jump on it fast with the meds, he said you know your condition better than anyone I sort out these pill for you to pick up at the shop when they open in 2 hours time. I had asked for Amoxicillin 500 mg Capsules. Turns out the order was never sent or the shop lost it, took a further 8 hrs to get them by this time it had taken hold. Monday I was at the Doctors he took one look at me and said you don’t look or sound very good. He put me on 100 mg of Doxycycline and told me that I should return Tuesday to see how this new drug had helped.

I returned as asked and was sent straight up the A&E with a letter saying possible pneumonia, by this time I had been coughing so bad and deep I had burst small blood veins in my lungs and was coughing up spots of blood. You can guess the looks I got sat in the waiting room thinking I had a 4 hr wait ahead of me. I was called through within 10 minutes? asked questions given an ECG as I had chest pains from coughing, then chest x-ray and blood test’s within 30 mins of arriving. When asked how come I was told you are an at-risk person. While chatting to the lead Dr in A&E he asked me what I could eat, and all types of questions about my condition, I said you must have come across others like me? he said yes but not of your age. I replied with, that is thanks to the British NHS I made it this far. He said I was fine and told its a virus and it would take a while to clear.

I started to get really bad the coughing at night was really bad so I would stay up all night and sleep through the day. then on the second week off work, I became really cold and told my wife I was going to lay down, I woke after three hours feeling really hot sweety and pain like no other, how on earth could this be the dreaded constipation?? I had been going through the pills I was on for the cough, omg the pain I collapsed in the downstairs toilet, I was out of it my wife was telling me to stand up, get up, so she phoned the emergency ambulance phone no. They were with us in less than 10 minutes it seemed. They got me into the wagon and said all we can give you is morphine for the pain, I remember asking if I get an M put on my forehead? for which the reply back was, you must watch to many war films.

They could not find a vain to put a line in, they put it in the most painful bit close to the bone on my wrist, then in it went, well that was also painful now my arm hurt to!! they gave me 2 x 2.5 mils and told me it can have an effect on a vain, asked later if I wanted more I turned that offer down. When we got to the hospital I was on a trolly in a corridor with some guy telling his mate that he knew someone who O.D on morphine, I was thinking, really does he have to be talking here like that??

I lay there for hours with two drips up, chatted to the Dr. Told him what it was and why I was there, you need an enema then first and we will see how the pain goes before we look at any other causes for the pain he said. I had a Nurse who spoke not good English, and after giving me that thing sent me the wrong way to the toilets, I was running around like a headless chicken, it must have looked like to others with a bomb about to go off lol

The pain eased off after I finally found what I was looking for, and placed back on a trolly in some holding area, I slept for hours woke up looked around to hear the guy next to me say, you missed all the fun mate. We lost two people here tonight, I asked if they had been on morphine, clearly, the comment went over his head lol

I was sent home midday the following day, been signed off work now for 3 weeks still coughing up blood, after Easter when I hope to return to work having had a month of the worst amount of time ever of coughing, I been wondering if this is due to my age? that this cough has this hold over me as it has, Plus I am finding it hard to cope with all the excitement lol

With the deepness of the coughing, I am getting Acid trouble on top of everything else with back ack chest hurting as if I have been run over, all this because of having a weak chest to this kind of thing.

This video I took on Easter Sunday 2019, I had been fighting this cough 4 weeks up to filming this short clip, I am coughing up specks of bloody but not shown it on this clip, my Wife say’s its sounding better!! wish it felt better.

In August 2021 I caught a viral infection, sounding worse then you see in the video from 2019. This one was bad dying off a bit after 7 weeks coughing, and having trauma cough bleeding that scared the hell out of me, this is where your coughing so bad you bust a blood vessel in your lungs, and blood comes up in the mucus.

I was able to get a fresh pineapple, I cut it up and ate the hole thing in just two days, and noticed the cough backed off, after 7 weeks of coughing bad something had to work, I believe in this, as I eat these when mucus builds up with out having a cough. I know a lot of top world Surgeons, and 4 have told me this to date.

 

Chest infections

Children who have had an OA/TOF repair do not usually have more frequent infections than other children but are more likely to need treatment due to the problems coughing as described above.
As it is difficult for children to move mucus out of the airway, it may remain in the lungs and grow bacteria (germs), which will require treatment with antibiotics. They may also be more sensitive to viral infections that affect the respiratory system – these may cause tightening of the airway making breathing more difficult which can be scary but is similar to asthma so responds to similar treatment with inhalers.

Children who have had OA/TOF repair can develop a distinctive cough, often referred to as a ‘TOF cough’. The distinctive sound is caused by coughing through the floppy section of the
trachea. They also need to cough more often, as lining of the trachea is missing specialised cells that trap dust particles and clear them from the airway.

Tracheomalacia is a condition where the trachea is floppy and collapses in on itself when breathing. This is common in children who have had OA/TOF repair as there are accompanying problems with how the trachea formed in the womb. For instance, the cartilage framework that holds the trachea together may not have formed properly leading to weak areas.

Children who have had a TOF repair may also have areas of weakened cartilage where the oesophagus was disconnected from the trachea. Usually the first signs are increased noise, effort and rate of breathing. A baby may also suffer from blue episodes when drinking. Children are at increased risk of developing chest infections and they may also find they cannot keep up with their friends as they have reduced exercise stamina.

In severe cases, it can cause continuous serious breathing difficulties. In extreme cases, a child may have ‘near death episodes’ where they seem to be choking and unable to breathe. This is why we teach you basic life support (BLS) skills and advise anyone else looking after your child to have training as well. If an episode occurs, the child passes out which may open up the airway but mouth to mouth resuscitation should always be attempted.

Children with mild tracheomalacia may grow out of it without treatment. However, in more severe cases, an operation (aortopexy) may be needed to hold the trachea open.

Ref: 2019F1977 © GOSH NHS Foundation Trust, February 2020. England

Some of the things I have done in my crazy life.

I now work as a Jeweller to extremely high standards

Lifting and loading to transport was a skill in its own right.

 

Lifting a 22-meter yacht to transport was a real skill and understanding how, good team worked would pay off, one wrong move and someone could get killed. I drove the standard fixed jib crane for over 9 years,

Driven this Travel Lift this icebreaker was just under 57 tonnes. Drove this Jones 37 ton mobile crane for over 9 years.

This icebreaker went 57 tons. You knew you had this when moving the travel lift, and trust me it was like moving through mud, everything had to be thought about before you did it carrying this weight.

This is not the same boatyard as I worked in but this video shows you near to what we would do with our 60 Ton Travel Lift, enjoy watching. Also, it shows the use of a crane to step yacht masts or crane in an engine etc.

https://www.youtube.com/watch?v=zzaWkePiYS0

 

 

 

I enjoyed the banter between people I worked with

Always known to look at life as a glass half full, I enjoyed working with some of the biggest machines and yachts I could get my hands on, the bending was hard, but after 16 years I got through the hard health times was moved on to have an easier job working as a Jeweller, going from 60 tons of crafts to things I could just about see was in its self a massive challenge, but just making it at birth was my biggest challenge in life the rest can be overcome with the right mindset.

Here I am smiling away about to move a yacht.

About the Marina, I worked here in the early 1980s when Brent Walker the boxer brought the marina and watched as they started to build the homes you see in this video below, I worked there for 16 years, and it has to be one of the best jobs I have ever had, watched Brighton Marina grow. When I started there were no buildings only car parks from one side to other, holding around 1800 yachts some days we would lift up to 13 yachts of all sizes, with only a 4 man team. The video is a History talk about this place, my fixed jib crane has been taken away in this shot below, we had a smaller one in orange.

My Peter Pan look

My Peter Pan look, working at around 100 feet above the ground level on yacht masts was kinda scary at times when windy, or when some idiot decided to get on the yacht you were working on, yes the yacht moved away from you, but you then knew it was going to return faster than it left..

Hover over photos to enlarge

 

 

 

Always be polite to others

A true story.

While I was in the crane, one time, like the photo above shows, a guy drove into the boatyard, passing the sign that said no parking in yard, he then parked it where you see a trailer above, I leant out of the cab and said ” Sir, you can’t park your car there we are lifting yachts” to which he replied ” I will park it where I like. About 1 hr 30 minutes had passed when he returned, you could see he was looking for something as he looked kinda shocked his car wasn’t where he had left it. So my banks-man (team member for crane) walked over and said, ” Sir can I help you” The fella said yes I left my car here, and it’s now gone? On that my teammate asked what did the car look like, Fella said ” it is a RED Convertible Porsche.

My team mate said ” yes and the top was down” I have seen that car. He took him to the red handrail you see in the photo, they looked over the rail and about 17 feet down they saw a RED Convertible Porsche sitting on one of our bigger 10-ton pontoons, we had craned it out of our way. the guy went nut’s but was shown the sign that said, no cars allowed in the boatyard.

We did crane his car back up, but never saw him again after that. Some people in life believe they are better than other’s but we are born and die, what you do in between is the important bit, we all contribute something to the world we live in, some like to throw their weight around, but there is always a different way around daft people, I have never understood those that put others down to make them self’s feel bigger. Be nice I say then doors will open.

My First Ever Job I loved this job.

Can you spot me? Look 3rd from the left, that’s a Vancouver 32′ in the background.

These are hand made.

Teak Deck being laid by me.

Finished Deck

Vancouver 38 foot yacht with full solid teak deck laid by myself and my team

I worked doing the yachts for 9 years, for Pheon Yachts, until the company closed. Below is an old photo I have found of the only Vancouver 38 foot yacht with full solid teak deck, laid on marine ply bolted to the steel framework, I know this because I laid the full teak deck with my team of 3, when you have a one-off build everything takes longer as its all-new as to how it will look when finished. I for one was very proud to have been involved, in building this lovely 38-foot yacht.

 

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