About Me

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In 1977 I was diagnosed with Type 1 diabetes. Over the last 34 years this has resulted in me spending many hours talking to doctors and many weeks in hospitals. I have seen many things during these visits, some good, some bad, some funny and some sad. These things have given me my sense of humour and sense of fairness. They have also made me realise that no matter how bad you think your lot is, someone has always got it worse. Someone suggested I write a blog about these experiences, so here it is...

Saturday, 31 December 2011

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.


Friday, 23 December 2011

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.

Monday, 19 December 2011

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.

Friday, 16 December 2011

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!

Wednesday, 14 December 2011

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,

Sunday, 11 December 2011

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."