Tag Archives: Diabetes

IV AB Day 5 – Flying Solo

4 Jul

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Day 5 saw me flying solo with my IV and self-administering for the first time on my own at home.

Nothing to report.

Everything went to plan and was uneventful.

Which is good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

But I do understand that this is serious shit and that getting it wrong could cause me additional issues that could at least be a pain in the arse……

 

Again, this reminded me of my Diabetes diagnosis and the first injection that I did on my own when I got home……

Everything went to plan and was uneventful.

Which was good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

 

I think that these are both like driving a car.

You are shown how to drive.

You get behind the wheel under supervision.

You learn and become more confident.

You pass your test and get released into the world to drive on your own.

Your first trips out unsupervised are hesitant and you double-check every move and maneuver.

With experience your confidence builds.

It becomes second nature.

Before you know it, you are driving with the music blaring, your arm out of the window and your feet on the dashboard……….

 

As I carry on with my DIY IV I will get quicker.

It will become second nature.

It will become more familiar.

However, I must ensure that familiarity does not breed contempt.

That it does not lead to mistakes or errors.

 

Live Long and Bolus.

Grumps.

 

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IV AB Day 4 – Released into the Wild

1 Jul

The plan for today:

  • Get new cannula (Mid-Line) fitted by DR
  • Set-up own drip again
  • Get dripped (is that a thing?…)
  • Bugger off home for Sunday roast!

Had a longer wait today as I needed to see the Doctor to put in the “Mid-Line” cannula.

Why does it need a Doctor I wondered?…

Well, as I found out, because its fucking long!…..

This is the original Standard cannula. It needs to be changed every 3-5 days. It is also in a bloody annoying and inconvenient place!

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Because I will be on IV daily for at least 6 weeks I was offered a “Mid-Line” cannula that can stay in place for at least 3 months. Sounded good to me so I agreed.

When I was called in I was asked to lie on the bed type thing.

The Doctor comes in and tells me about this thing…..

“I will insert it here (pointing at the place my bicep should be) and it will go in your vein up to here (pointing just below my shoulder)”.

“Okay” my mouth said.

“OH FUCK!” my brain whispered….

The Doctor proceeds.

Uses an ultrasound scanner to find the best route.

Unpacks his sterile gown.

Puts a sterile sheet thing with a hole in it over the insertion area (stop sniggering please).

Injects my arm with local anaesthetic (Oh. Numb left hand. Useful…..)

Sticks in a big needle thing.

Feeds in what seems like 123 metes of cannula.

Withdraws inserter (he told me it was a safe method…)

All done!

 

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I have to be honest, this is 100 times more comfortable than the other one.

I can bend my arm ok without catching the cannula.

So even though it was a prolonged procedure it was worth the wait.

After that I set-up my IV as I did yesterday and got my daily dose.

 

Bonus for the day?

I got given everything I need for the next 7 days to do this solo.

I need to go back every Sunday, get my bloods taken and pick up the next week’s supplies.

The guys at my hospital have been fantastic!

The extra time that they have taken in teaching me to do this on my own allows me to continue to live my life how I need to and ultimately earn a living.

So, tomorrow I fly solo.

But that’s another blog post….

Live Long and Bolus

Grumps.

Complications? What complications – Gwyneth’s Story

20 Jun

About me

Ok, where did this all begin? It all started on 10 December 1975, a date etched in my memory, the date of my diagnosis of Type 1 diabetes. My mother took me to GP ( with a urine sample) cos I’d been drinking loads. GP didn’t believe her til they tested the sample! She was told to go home and pack me a bag then take me to the children’s ward of the local hospital. So there I was at 10 years old, 15 days before Christmas being admitted to hospital.

So began the education we all know so well from the early days, injection practice with empty syringes into an orange, learning what a hypo feels like. Thankfully I didn’t spend Christmas in hospital that year (that was to come much later) but of course eating habits changed.

Complications

Where do I start? Suppose I should really start with the first complication that occurred, retinopathy. This happened when I was pregnant, I was so anal about BG control that I had slight bleeds in both eyes and as a result laser treatment in both eyes, it was fun trying to get into the relevant position on the machine when you’re 8 months pregnant, not!

That was a minor hiccup, the major stuff (I suppose you could call them major) started happening in 2008. At my annual check in the November, the podiatrist noted I wasn’t picking up some of the pin point tests she was doing so I was referred to a vascular surgeon. April 2009 saw me have an angiogram in my right leg – result was that artery in my ankle was calcified and I was losing circulation. Ok, so now I had to really watch what I was doing. I lasted 5 months when an accident in work (a chair landing on one of my toes) sent me rushing back to hospital ( by this time I had the podiatrist on speed dial). I had to have the toe amputated that September and after a lengthy process of waiting for it to heal, eventually had to have right leg amputated below knee.

So far, so good but there I was thinking it’s happened to one ankle, I wonder how long I’ve got til the other goes. I returned to work in April 2010 and I was coping well, however things took a bit of a turn in August 2011. Nasty swollen, red foot. This resulted in me losing a toe on my left foot and this seemed to be healing well until December 2011 when a 2ndtoe turned black. The date? 19 December, guess who was in hospital that Christmas and New Year? This time having my left leg amputated below knee.

The latest complication happened in January this year (2018), I suffered a heart attack (not realising for a couple of hours that the chest pain wasn’t just indigestion). Rushed with blues and twos to local hospital, straight into the Cardiac Lab where they were successful in inserting 3 stents. Heart issue solved but kidneys threw a hissy fit about the highlighting dye they used in the procedure (kidneys had been working steadily at 30%). This caused admission to HDU, a central line going into neck & dialysis for 5 days.

Coping mechanisms

I’ll be honest sometimes it’s tough but it doesn’t stop me. I’m currently studying with Open University for  BSc (Hons) in Psychology, I’m half way through but I want to use my experiences to help others, whether it be amputees or diabetics. The story of course still isn’t finished, my kidneys currently working at about 19% and my wonderful daughter has volunteered to have tests done to see if she can be a living donor for a kidney. You could say I’m still a work in progress.

Gwyn

Let’s not talk about it – Rachel’s Story

4 Jun

So let’s go back to January when I did what I normally do on a Friday. I come home from work, do my housework and then meet a friend for a coffee and cake at hers which was a short drive away from my house.

Last thing I remember is 2pm as I’d treated my low and had sat down and eaten my lunch taking a bit less insulin as I was low. Normal procedure for me on a Friday as normally my blood sugars zoom up and I end up swearing as too high for cake.

Some 2 hours later my son found me at the other end of my house, collapsed, face down in sick. I was barely breathing and non-responsive. My jaw was seized shut and I was inhaling vomit. He put me in the recovery position first and rang 999. He had even said ‘Bye Mum@ as he thought there was no way I was coming round. He did manage to open my jaw which was apparently very hard and remove some of the vomit.

Next thing I heard was from a Dr saying ‘lay still, we are the paramedics you’ve had a nasty collapse but you are fine’

In my house were the air ambulance ground crew and they were looking to land a helicopter nearby as they were concerned as all my vital signs and signals were not looking good. I had an emergency response crew. These arrived within 5 mins carrying defibs not just 1 but 2! I then had an ambulance crew.

For over half an hour they put a line into my vein and pushed through 500mls of glucose. Finally I came up to 38mmls but dropped again to 4mmls. They asked me questions as to my name – I got that bit correct, the day – after thinking I achieved that one and then they asked for the year – this took a little bit longer, I mean it was January.

So once they had stabilised me, changed me, I walked feeling very sick to the ambulance and went off to the hospital.

However on the way to hospital my bloods started to drop again, by this point I was feeling so sick and shivering like mad as my body couldn’t warm up. The paramedic said I needed to eat 4 Jelly Babies, she counted them out as they had nothing to give me and told the driver if I couldn’t physically eat them then could we go sirens on full pelt to the hospital. To this day, it was the slowest eating of Jelly Babies and keeping them down she had probably ever witnessed, but I did it.

At hospital they gave me an injection to stop me from being physically sick and hooked me up to a saline drip. My bloods at this point were still not rising too well. I was popped into a cubicle and the lovely doctor had a super bedside manner and asked me what had been happening. Thankfully he realised I was human and was capable of talking. I had a chest x-ray as I’d inhaled vomit and after several hours as no beds were available and my family were around me I was allowed to go home. Once home and several hours later I went to bed with a cracking blood sugar of 38mmols feeling downright awful.

The following Monday I had a long chat with my DSN at 8.00am (thought I’d get in before they did and leave a message on the answer phone) but they were awaiting my call. As I had, had a seizure I could not drive. My hypo awareness was non-existent they listened, never blamed and reassured me that everything would be fine and I just needed time. They also said the length I have had diabetes can play a huge part in having no awareness and that it is nothing I have done.

3 months later my hypo awareness has started to come back albeit very strange, either get splitting headaches, tiredness or a cold right foot! The hospital cut my insulin back by over 20% and found out that I was in fact highly sensitive to insulin. This means if I exert myself in any way it can have profound effect on my blood sugars.

Hypos are now treated at 6 and they have said it’s ok to go over 14 after eating its very normal. But by listening and doing what they advise its working and I am hoping in the next 2 months to be able to drive again.

Lessons learnt – we see all this crap online about post prandial being not more than 7 after a meal and to maintain levels at 4-6 but for me this led me to no hypo awareness, as I was told at a psychologist app this isn’t even normal for a non-diabetic let alone a diabetic person so why do we feel we need to adhere to this as it just not normal.

Ask anyone if they have hypo awareness and I guarantee they will all say yes, but recently I have learnt that 1 in 4 don’t. If you don’t please speak to your team there is help out there and 9 times out of 10 it does come back.

Just don’t be scared of telling them, these are complications that can occur whether you’ve kept to the correct levels or not.

My advice go talk as I am extremely lucky to be here today talking about this.

Brian’s Story

28 Feb

Let me introduce myself, I’m Brian Black I live in Arizona, United States. So my journey with my Type 1 Diabetes started real late in my life. So it all began about this time eight years ago. My health seemed to Plummet into this terrible abyss. My body began to ache, had no energy to make it through the day. Then one morning when I woke up my foot was swollen and when I step out of bed to walk, I felt something just burst and blood and fluid covered my left foot. I was scared for what had just occurred. So off to the Emergency Room I went. Upon arriving at the hospital. The Triage Nurse ask me why I was there. I showed her my foot. The first words out her mouth was I a Diabetic. My answer to her was no, that I had never been diagnosed. At that point everything seemed be happening very quick. I was taken to a bed and many blood draws began. I was put on a I.V. and Oxygen. Things seemed to getting worse. I started Vomiting fiercely. Then the E.R. Doctor arrived. He began to explain to me, my body was in DKA. My response what was that. So he explained and told I was very sick man with life threatening illness. So I was off to ICU to be monitored continuously throughout the night. The next morning I was moved to a regular room. They had stabilized from Blood Sugars and Oxygen Levels. So this when I meet this Female Doctor of Podiatry. She came to my room to examine my feet. As the examination continued, she began tell me that it wasn’t going to be a good outcome. That most likely I was going to loose several of my toes or even my whole left foot. So the first surgery would be later that day, to debrief the Infection in my foot. The outcome from this surgery was some what encouraging. That there would an Amputation of The Small Toe and the Removal of The Metatarus. I would spend the next 21 days in the Hospital going through two more surgery’s. And countless Blood Test to formulate a Antibiotic Cocktail to kill the Infection that was still causing me problems. So I went home with one less toe and a broken ego and Type One Diabetes’s It took over me several years to come terms and not to blame myself for the Complications that this Disease of Diabetes brings upon us. Everyday I work hard to take care of myself with my Diabetes. So I leave you with this No Blame and No Shame.

Type 2 – It’s Complicate Too

25 Feb
8.5 years. That’s how long I’ve had type 2 diabetes. I still remember the look of surprise and shock on my gynaecologist’s face, as he went through my blood test results, then:
‘Did we get you checked for BSL  at the start of your pregnancy?’
‘Yes, they were 4.9.’
‘Hmm, I’m afraid your levels are still as high as those after your Glucose Tolerance Test.’
‘What does that mean?’
‘It’s a carbohydrate intolerance and  formally a diabetes diagnosis. We’ll send you to see an endocrinologist.’
‘But how? Isn’t Gestational Diabetes supposed to be cleared, once the pregnancy is over? What is going on?’
‘In a very small number of women, it may stick by, never leaves.’

And there it was. The start of a journey that took me to so many highs and lows.

I was just discharged from a 3.5 week hospital stay, after dealing with pregnancy complications and a horrible loss. I wasn’t sure if my body could handle more blows.

I went home and had a good cry. It wasn’t fair. I was still young, sometimes slightly overweight but always active. Life had already thrown so many curveballs during that pregnancy. This was the last thing I needed.

As I slowly learned to cope, another challenge was waiting for me: the prying eyes, the food police, the never ending comments that left me feeling guilty and accused. Accused of what? Did I cause my diabetes? I was and still am trying my best and doing a good job to maintain the balance. I didn’t need that. It was already hard to keep a lid on my mental health issues, plus a host of other chronic diseases that have been tiring and draining me in their own right. Did I need or deserve these looks of disdain?

It is something when it comes from casual bystanders or ‘friends’. How about health care professionals who have barely met you, but as a type 2, you are instantly branded ‘non-compliant’, ‘closed- minded’ and ‘resistant to change’.

Over the years, my diabetes has changed. I had to see HCPs to seek advice. But that was it. I needed advice and guidance. I needed support and, may be, a pat on the back for a job well done. 8.5 years of diet and exercise controlled diabetes. Surely I deserved something positive. Alas, it wasn’t to be found in this Diabetes Educator’s office. Her claws were out to get me, to get every tiny effort I desperately made to make her see me, make her see my efforts, see my achievements and may be, if I was lucky, to congratulate me.

NOTHING!

Absolutely nothing!

I had just seen her treating her type1 patients with so much patience and tolerance. How can a change from type 1 to type 2 shift her behaviour and approach?

I was not impressed. I was hurt; deeply hurt and offended.

I left her office never to go back again.
__________________________

Irina, living with T2D, Sydney, Australia

Stars in my eyes.

28 Jan

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When someone asks me if I live with diabetes complications, my automatic response is ‘no’. It’s usually followed by some qualifier such as ‘thank goodness’ or ‘touch wood’ or some other ridiculously superstitious muttering that I don’t actually believe.

But my response is not really one hundred percent correct.

Setting aside short-term complications such as hypoglycaemia, I have lived with diabetes complications. You see, when I was 28 years old, after having diabetes for only four years, I was told I had cataracts in both of my eyes. I checked to make sure I wasn’t in fact an 80-year-old grandmother, and when certain that wasn’t the case, I indignantly demanded that my lovely ophthalmologist (who I have a little bit of a crush on) explain how a young woman could possibly be the owner of matching cataracts.

As it turns out, I was probably always going to get them. Both my parents currently have cataracts and all four of my grandparents had them removed. ‘The likelihood of you having cataracts was always pretty high,’ Dr Ophthalmologist explained. ‘But undoubtedly, diabetes accelerated their development.’ Diabetes: the gift that never stops bloody giving.

For twelve years I lived in fear during the lead up to my annual eye screening, believing my time was up and they would need to come out. I’d made a pact with my ophthalmologist: the cataracts could stay as long as they were not affecting my vision or preventing him from getting a truly good look at what was going on behind my retinas.

As I often do when it comes to diabetes, I made deals with myself: as long as I could still read clearly, the cataracts could stay. As long as I could still see the gorgeous face of my little darling kidlet, the cataracts were welcome. As long as I didn’t need to squint or blink to focus, the cataracts could remain.

And the psychological deal was that as long as my age in years started with a three, those fucking cataracts could cloud my eyes and I’d live with it.

Except then, with my fortieth birthday on the horizon, and middle age crises looming all around me, my vision started to be affected. I stopped driving at night time because the bright light starburst of oncoming cars meant I was often temporarily blinded and couldn’t see what else was happening on the roads. I started to need to shine a bright light directly onto whatever I was reading to illuminate the words so I could make sense of the story.

I knew it was time.

At my next visit, I told my doctor that I needed the cataracts removed. He nodded as he was looking at my retinas. ‘Renza, I can’t get a good look at everything going on back there. I’m sure it’s all still fine, but I can’t be certain. I say they need to go, too.’

So, we scheduled two surgeries (I’d used those twelve years of deal making to convince my ophthalmologist that the cataracts would be removed under general anaesthetic because there was no way I was going to be awake while he came at me with sharp objects and stuck them in my eyes), and three weeks after I turned forty, the first cataract came out. Another three weeks later, I had the second cataract removed. The surgeries were painless, easy, and recovery was ridiculously stress-free. I realised afterwards that I’d been seeing the world through sepia-coloured lenses and for the first few weeks post-surgery, I was actually startled by the colour of the sky.

I could see clearly – a blessing and a curse because suddenly those forty-year-old lines on my face, previously blurred thanks to my cloudy vision, became crystal clear. I dealt with this blow by simply dimming the lights when I was putting on my makeup to avoid spending too much time scrutinising the wrinkles, and renamed them laugh lines, congratulating myself on all I’d seen to cause them!

But while the outcome was all positive, emotionally I was a bit of a wreck. Even though I could understand that shitty genes would probably have meant I was going to grow cataracts, was I to blame somehow for their rapid and early onset? There was some time when I was newly diagnosed that my A1c was way outside target and surely my punishment was diabetes-related eye complications. I felt guilty and guilt-ridden, (damn six years of Catholic school).

And I was embarrassed. What sort of twenty- or even thirty-year old gets cataracts? And who needs cataract surgery the minute they turn forty? I tried to joke about it to cover up just how shamed I felt.

Because that’s what happens with diabetes complications. We are told that if we get them, somehow they happen because of our shortcomings. Obviously, this happened to me because I didn’t do as I was told; because I wasn’t good enough; because I didn’t take my diabetes seriously enough. That’s what I was threatened with the day I was diagnosed; that’s what all the literature about diabetes complications says. My failure to look after myself properly resulted in cataracts. Sure, I got off lightly with a pretty easily managed complication, but still, a diabetes complication nonetheless.

But of course, that’s not the case. Complications just happen sometimes. Of course we know that there are things we can do to minimise the risk, but we can’t eliminate that risk completely. Pointing blame does nothing but stigmatise living with complications and, for many, that results in not seeking care.

Talking about complications – openly and easily – is a way to reducing the shame. In the same way that no one asks to get diabetes, no one asks to get diabetes-related complications. Stop the stigma, stop the shame and let’s talk about it and support each other.