My Top Five

At this time of the year we are subjected to numerous countdowns on the TV and in the media, so I thought I would offer one of my own. Of course, as this blog is medically themed, here is my countdown of the top 5 most painful procedures that I have experienced. Please remember if you are awaiting one of these procedures, that pain is a relative thing - what is painful to one person may be a walk in the park for another. And when trying to evaluate pain levels, a lot of pain over a short time may be hard to measure against lesser pain levels over a longer time, each having a different overall effect on your body. So here is my personal list:

5. Vitrectomy. This procedure is used to seal the bleeding from small blood vessels on the retina (retinopathy), at the back of the eye. Basically, three tiny holes are made in the eye and the vitreous gel is removed, laser treatment is applied to the retina and then the eye is refilled with saline and oil. I've had three of these (one in each eye!!). Actually I've had two in my left eye and one in my right. The right side was a great success, stabilizing the retinopathy, but the two in my left eye have resulted in the retina becoming detached and a cataract growing in the lens and has left me totally blind in that eye (so not so good). The overall pain was minimal, probably more of a pain in the arse really, due to the patch that they leave over your eye for 24 hours after the job. Folowing the op it felt as if I'd poked myself in the eye.

4. Arthroscopy. I had the cartilage trimmed on my left knee after it went "bang" a couple of years ago. The operation was done under general anaesthetic. It was mildly painful for about 2-3 weeks, but I could ride my bike in the third week without too much trouble.

3. Cholecystectomy. I had my gall bladder removed following a few months of increasing pain. It had become completely infected, full of gravel and was 3 or 4 times larger than it ought to be. It was expected to burst! I had to take antibiotics for 2 weeks before they would remove the gall bladder. The pain of the infection was as bad as the operation, but the op soon got rid of that. The three holes from the keyhole surgery each had a stitch in which dissolved after about 2 weeks.

2. Amputation. About 3 years ago I had to have my little toe removed from my left foot due to a diabetic ulcer. This first operation was not a complete success by any stretch of the imagination. I was discharged from hospital with a raging infection and the district nurse that visited me 2 days later sent me straight back into hospital again. Within 24 hours of being re-admitted, I had the next toe and a quarter of my foot amputated (ray amputation). This took quite a time to heal due to the lack of blood supply, the same reason that the ulcer had started in the first place. Overall it took about a year to become good enough to leave without a dressing, during which there were some very painful periods and some lesser times. The dressing of the wound was often quite sore too.

1. Cystoscopy. OK, now I've had a camera put down my throat and into my stomach, which caused me to heave violently and constantly for about 15 minutes. The poor nurse that was stood next to me with a kidney bowl didn't stand a hope of catching what was coming out of me. By the end of the procedure I was completely exhausted through lack of breath and she was on her knees trying to clear a path for me to walk out of the room. We were all glad that the job was over, I can assure you. But that isn't the worst place I've had a camera stuck...I'm no better endowed than most, so imagine having a camera pushed into your bladder via your "Jap's Eye"!!
When the doctors first noted protein in my urine, they presumed it was from my kidneys, which is not uncommon when diabetic complications occur. However they need to eliminate the possibility that you are bleeding from your bladder. Needless to say, the procedure is not at all pleasant. But then, afterwards it is even worse. When they take the camera out, they tell you to pee before you can leave. I did that without any problem, not realising that the anaesthetic was still working on my todger. However, I had ridden my bike to the hospital and once I'd ridden back I needed to pee again. The  anaesthetic was wearing off by then and the pain that came with the dribble of pee was pretty bad. I'd just got over that when I had to go again...and again...and again! Every time I was only able to pass a small amount, but it felt like I was peeing razor blades! The pain was so bad that it stopped the flow each time but I had to keep trying. Eventually, a few hours later, it subsided. But, out of all the procedures I have had, that has to be the most memorable and so probably the most painful of all.

It's CHRISTMAS!!!

Now that the big day is almost upon us I guess that many diabetics are preparing to see a rise in blood sugar levels. I usually seem to have an appointment at the clinic within a week or two of the new year and the consultant is expecting to see some abnormal readings...and I have never failed to disappoint him!
Having done the FREEDOM course this year, I'm hoping that I will be able to judge the portions and carb contents a little more accurately and get through the festive period without too many "highs". However, there is a part of me that is hoping for the occasional "low", as that is an excuse to indulge slightly! I was pleased to find out that alcohol, particularly spirits, can reduce blood sugar so with a bit of luck I will be able to have the odd chocolate along with a whiskey!
I'm certainly not going to go mad, neither am I going to miss out on the things I enjoy. I think that "everything in moderation" is the way this year and the diabetes will not spoil the festivities for me.

Happy Christmas to all. Enjoy it and stay healthy.

Two Sides to the Story

Today I was due to see the Oxford Renal Transplant team about the possibility of me having a kidney & pancreas transplant (SKP). They come to my local hospital to see me and a few others who are either waiting for a transplant or hoping to get onto the list. I received a call this morning to cancel the appointment due to the team being involved in an emergency transplant at the John Radcliffe Hospital in Oxford. I was a bit annoyed, since I had cancelled a routine Renal appointment to be able to fit the Oxford appointment in. But these things can't be predicted and the cancellation was not a problem for me, as the local Renal consultant reviewed my blood tests over the phone, telling me that my kidney output is now the best it's been for 7 years and nothing needs changing, meaning that I don't need to see them next week.

My first thought was that someone was about to get one of the best Christmas gifts that they could ever hope for. Realistically though, the patient is likely to be quite sedated and will miss Christmas and their family will have to cope with a lot of additional worry and stress. And then of course, there is a family somewhere that has just received the worst possible news. Unlike a kidney transplant where the donor can survive perfectly well having given the organ, the pancreas must come from a cadaver (dead body) and, in most cases, this is likely to be the result of a fatal accident. And this time of the year is generally quite a busy time for SKP transplants.

So, while we as transplant survivors or hopeful receivers, prepare to celebrate this Christmas, it is worth remembering those people who have suffered a loss for those operations to go ahead day in and day out. Without the generous donors and their families, the whole transplant system would not be possable.

FREEDOM

Yesterday I had my first appointment at the chiropodists since leaving hospital. I was quite surprised to see how well the toe is progressing. It is the first obvious sign of things moving in the right direction and now I'm fairly certain that I'll see Christmas at home. There has been a part of me expecting to be back in hospital for a small amputation. Then, straight after that appointment, I was off to the hospital again, but this time it was for pleasure, rather than pain - a Christmas party!
Earlier in the year I did a course at the Diabetes Centre. Flexible Regimes for Eating and Exercise in Diabetes for Optimal Management (FREEDOM) is designed to allow the sufferer to adjust the carbohydrate intake and amount of insulin taken depending on lifestyle and day to day activities (some areas run a similar course called DAPHNE). The party was a chance to get together with the other diabetics who had taken the course during the year. There were a couple of "guest" speakers, one from Diabetes UK, talking about the new DVLA rules for diabetic drivers and another was a patient who had recently had a kidney and pancreas transplant. Both were very interesting, though, since I had my driving licence revoked over 13 years ago, the SKP transplant patient was far more useful to me. I'm hoping to have the same operation as him and I have an appointment to see the transplant team on Monday of next week.
The FREEDOM course seems to have helped me quite a lot. My pre-meal blood tests have become far less random and are almost all within the target range of 4.5 - 9.5. I've been able to reduce my long-acting insulin (Levemir) by about 25% and I have not been "hypo" for a good while now, rather than having one on most days. The six weeks of 4 hour sessions were, as far as I'm concerned, a good investment in my future.
Hopefully the coming weekend will be quiet, because I have appointments on Monday, Tuesday and Thursday next week, and then they all stop until after Christmas. Peace for a week!

A Worrying Discharge

When you get let out of hospital you are given a set of discharge notes. These notes are supposed to be used if you have to visit a GP, clinic or, god forbid, another hospital. The notes contain a history of your time as an inpatient and obviously need to be accurate in case further treatment is required. I sat at home and read my notes and I was quite stunned at some of the contents.
I've been a Type 1 diabetic for 34 years. This means that I am completely dependant on the 5 insulin injections I have every day. I recently worked out that I've had over 50,000 insulin jabs over the years and, to be honest, I'm quite proud of that in a strange sort of way. So it came as some surprise to find that the discharge notes stated that I'm a Type 2 diabetic and allergic to insulin! There were other small mistakes in the notes too, but this is something that could have serious consequences should I find myself in the hands of medical staff while I'm unable to communicate. My diabetes consultant was rather taken back by such dangerous statements too.

The Homecoming

On Monday I was waiting for the doctor to do her ward rounds. I had hoped that I might be allowed to go home but, as the time rolled on, I knew I was less likely to do so. Lunch time came and went, afternoon drugs did as well. Then at about half past three a registrar came to take my dressings off. At 4pm the doctor arrived and had a look at my toes and she decided to use a scalpel to debride them there and then. Had I known that she might do that I would have had some pain killers from the drugs trolley, but I hadn't. She managed to remove an amount of the blackened tip of my big toe and although I was glad she had done that, I needed the pain relief. She arranged for someone to remove my PICC line that I'd had the antibiotics through for the last 3-4 weeks too. When I asked for some pain killers I was quite surprised to be told that I couldn't, as I had already had some a couple of hours earlier. When I looked at my drugs chart it showed that I had been having them regularly throughout my stay, which is not true. Where have they been going? Most days I hadn't needed any, yet the chart shows I have! I suppose Christmas hang-overs are imminent and if the patients don't need them...who can prove anything? Anyway, they soon found something to take the pain of my toes out of my mind. The PICC line was covered and stuck to my inner arm (just above my elbow) with a large clear sticky patch. And it was well and truly stuck! The pain of having my skin ripped off with the patch overtook any pain in my toes and by the time that was over, the toes had settled down completely.
But I was allowed to go home, I just had to wait for my tablets to arrive from the hospital pharmacy. Tea came and went. 7 o'clock, 8 o'clock - still waiting. I left hospital at about 9pm on Monday, free at last...

...Then on Tuesday I had an appointment for the usual diabetes check up, so I was back at the same hospital again. I have so many appointments I'm thinking of renting a room there,

What's in a Name?

Sundays seem to be the most quiet day of the week on the hospital ward, so I wasn't expecting to have much to report. But there are a couple of things worth a mention.

Last night we had a nurse on duty who bore a striking resemblance to Frank Bruno. He had a dry sense of humour expressed by his constant singing of "I'm Dreaming of a White Christmas". Each time he sang it he watched for a reaction as he changed the "white" for a different colour - green, red, blue, pink, yellow etc. but never the obvious "black".
Come the morning he was doing the observation round. One question on the list was "Have you opened your bowels since last night?"  He laid down an offer of a full English breakfast for the bay if anyone could genuinely answer "Yes". Nobody had stirred during the night, so he was on to a winner. Just then and to everyone's joy (except "nurse Bruno") the chap in bed 13 woke and declared that he had a "lodger" in his bed. Full English all round!

This afternoon a young nurse came in to collect an MRSA swab from the man next to me. He told her that one had been collected when he first arrived on the ward, but she presumed the results had not been logged. He duly swabbed his nostrils and nuts and she documented his name and date of birth...which were different to those on her sheet. "Oh, well your the wrong name" she said.
"No, I think you'll find I'm the wrong patient" he replied. Then she came to me.
"I need a MRSA swab from you but I got it from him. Can you give me one as well?" I obliged her as I fitted my best sarcastic head on. "You would think that they could put our names up for the staff to see."
"Oh they do, but they put them up above the beds." she told me.
"So that must be what makes it so confusing then."

A Quick Observation

There is a chap on the ward who can get out of bed and into a chair with just a bit of help to steady himself. He's got all his marbles and is happy to sit in the chair for hours. I just wonder why, when he asks to open his bowels, do the nurses bring a commode on wheels to his chair, leave him to "perform his duty" and then wheel it away, leaving a vapour trail heavier than that of a 747 behind it. Then they have the unenviable task of poop-scooping the commode afterwards.
Wouldn't it be logical to wheel him to a toilet and and back, preserving his dignity, general ward health and everyone's sense of smell?

It's just a thought

The Rabid Fish

Hospital food gets quite a bad press generally. Usually it is reviled in the same way that school dinners were 20 years ago. I find that most of the food here is fairly good and, to be honest, the soups are lovely. I have noticed that the chef seems to believe that every dish can be improved with a liberal scattering of cress. It is on everything and most of us wake up having slept with at least one bit in the bed.
Yesterday, being Friday, I had battered fish, chips and peas, garnished with a lemon wedge...and some cress! It looked pretty good and I was certainly ready for it. I applied the obligatory splodge of tomato ketchup and squeezed the lemon onto the fish...and then it happened. Before my very eyes that lovely piece of fish started to bubble. Within seconds the batter had faded and produced a foam. I remember seeing TV adverts years ago about Rabies and as I stared at the fish it was foaming just like that rabid dog! I had created a new lunchtime dish of Battered Rabid Fish, something Heston would've be proud of.

The Great Escapes

During the evening 3 of the six beds were emptied and the three of us that remained were hoping for a quiet night without the poor souls that had been moved due to certain "mental attributes". One old chap had taken a liking to sitting in his own mess and only standing up to pee in his drinking water jug. Sadly, the nurses failed to notice his predicament, thinking he had bad wind and was drinking Lucozade!

All hopes of peace were shattered when three new guys were brought onto the bay, two on beds and one in a chair. I prey that nurses drive cars better than they drive beds. still, the door frames and walls can be filled and repainted easily enough.

In the early hours there was an incident. Mr "X" who had arrived sat in a wheelchair and who could not walk, had vanished. The two staff nurses (neither of whom had English as their first language) set off to search the ward. Both went in opposite directions, pulling open curtains around beds, opening and closing toilet doors and calling to each other along the corridor. Even those patients who'd opted for sedation were by now stirring and grumbling. Panic was now setting into both nurses and their natural accents of East European and Asian were causing even more confusion. "How can he be gone? He cannot walk. Look under the beds." Random ideas abounded, but he was gone.
Time to call the porters. "We've lost a patient, can you help?" Of course the porters could help. They came to the ward, double quick, equipped with a body bag and a trolley.
"We've come to collect your patient for the mortuary."
"We don't have any dead patients, we have lost one."
"You mean you have a missing patient?"
"Yes, but he isn't far away, because he can't walk..." And so it went on. The porters searched the hospital and grounds with no luck. The staff nurses eventually called the patients relatives and were rather taken aback at the furious response. The relatives suggested that the police were called. This was a rather unpopular  suggestion, as it would then become more "official" and questions would certainly be asked the next day. Then, after a few tearful moments, one nurse thought to call the patient's mobile phone. He answered.
"Mr "X", where are you?"
"I'm at home."
"How did you get there?"
"I walked."
"But you can't walk."
"Why not?"
"Because your hospital notes say you can't."
"Well they're wrong. I said I can't wait."
"Wait for what?"
"The doctors. They took too long. That's what I told the nurse when I left."
Everyone waited for their medication while a suitable story was written in the report. Then dawn broke.

34 years ago when I was being stabilised a young lad made a similar escape from the ward. He was due a tonsillectomy and was sent to have a bath. He managed to climb through a tiny window in the bathroom and walked 4 miles home in his hospital gown and slippers.  He missed his operation but at lunch-time got extra ice-cream for coming back. I wonder if it was the same guy?

The Surgeon cometh...

Today the vascular surgeon did a ward round. He's a really nice bloke. Many people see him as a big-head. He is and he has cause to be. He is at the top of his league, an expert. I saw him first about 3 years ago when he amputated two of my toes on my left foot. He is very honest and tells it like it is. Some people don't want to hear bad news, but if you have to live with the consequences, I think you really need to know the truth. What sets this man aside from other surgeons is his humour.

He whisked into the ward, followed by six young, pretty female juniors (I think he's on the interview panel for the surgical staff!). By the time the juniors had arranged themselves around the bed opposite me he had looked at the old chap's amputation wound, barked a few instructions and turned round to my bed. He looked at my right foot and said "I think I'll have some of that shortly", then asked me to show them my scar from the amputated left toes. He looked at my half-a-foot then he turned to the juniors and said "With all these bits missing, you can tell we're on a diabetic ward...or in a Leper colony". Not one of the juniors even cracked a grin, but I was nearly crying. It's humour that gets you through a day sometimes.

In The Beginning...

The summer of 1977, when Fleetwood Mac's album "Rumours" was at No. 1, the space shuttle "Enterprise" made it's first flight, England regained the Ashes from the Aussies, punk rock was "in" and so was I...In hospital that is. My mum was a nurse and she had spotted the classic signs of diabetes in me - drinking loads, peeing loads and sleeping...loads. Before I knew it I was in the kid's ward being treated like a dart board.
NASA might have been able to develop the shuttle, but the NHS were still in the dark ages where treating young diabetics were concerned. One doctor had drawn a target on my arm in pen, so that he could easily take my blood every day. Another doctor sent me out, with my parents, to run around the local park until I collapsed due to low blood sugar and I was put on a diet that excluded EVERYTHING  a child would want to eat, leaving vegetables, spuds and bread on the menu.
After a month in the hospital I was released into the world again, about 2 stone lighter and clutching a huge bag of medical items. I only wish I'd saved some of them now, as they would be worth a fortune to collectors. I had glass syringes that required boiling in a saucepan each day to sterilise them, and 1" long needles that were reusable until they were blunt, at which time they were sent away for regrinding!

Since those early days I've been in hospital for various reasons, mostly related to the diabetes, but some not. I will try to post some moments from the intervening years over time and in some sort of order, but for now I'm  skipping to present day as I'm sat in hospital being pumped full of intravenous and oral antibiotics to try to prevent me from losing the big toe on my right foot. What goes on while I'm here will be added each day.