Tag Archives: Foot Care

Complications suck. But life goes on if you want it to.

17 Dec

Guest blog by Diana Maynard.

I was 7 when I was diagnosed with type 1 diabetes, back in the 70s when treatment consisted of big metal and glass syringes stored in surgical spirit, a couple of urine tests a day where you peed in a container, added 5 drops of urine and 10 drops of water to a test tube using a pipette, threw in a fizzy tablet, and tried to figure out whether the resulting solution was orange (high), blue (low), or green (good). Of course, that only told you what your average blood sugar had been like since the last time you peed. Basically useless. What good was knowing you’d had a hypo 4 hours ago? Not much was known about complications back then (actually not much about diabetes at all) and clinic visits consisted of the consultant asking if I was all right and whether I did sports, which of course I did, and him giving me a beaming smile and sending me on my way.

Getting diabetes didn’t seem too bad at first (other than not being allowed marmalade on my toast “because it’ll stop your insulin working properly” as my mum put it). My dad had had type 1 diabetes most of his life and he was fine after all. His attitude to any kind of health problem was simply to grin and bear it and not to mention it. God forbid anyone should know that you were not healthy – a complete sign of weakness (like staying in bed after 8am – a mortal sin!). I don’t think he’d ever really got over not being allowed to join the military on account of being diabetic, and to be honest, that was probably the worst thing about it for me too (me not being able to join the military, I mean, not him). On the day I was diagnosed and was lying in hospital feeling like a fraud (I felt perfectly OK), my dad brusquely told me “tough luck”, handed me a syringe and told me that as I’d be injecting for the rest of my life I had 2 choices: inject myself right then, or die. I took the first choice. He then said: “Don’t ever feel sorry for yourself, it could be a lot worse. You could have lost your leg or be blind.” He added that when he’d been diagnosed in the 1940s, the person in the bed next to him had died from diabetes complications on his first night in hospital.

Fast forward 20 years, and irony struck. I became registered blind as a result of retinopathy, and my dad had a quadruple heart bypass and later lost both his legs (and eventually died) all as a result of diabetes complications. Oddly enough, when I lost my sight (very fast, within the space of 6 months, despite a wonderful team at the eye hospital who tried to save it – I was just very unlucky in this respect), one of my closest friends lost his leg to cancer. Watching him struggle with that (my dad wasn’t to lose his legs till some years later) made me realise how lucky I was to still have my legs and only be losing my sight. I was told by the doctors that I’d lose all my sight within another 6 months, but thankfully I didn’t. I didn’t find out until later that my friend, Steve, got through his leg loss partly by thinking how lucky he was that he hadn’t lost his sight like me, and by watching me deal with progressive sight loss. More irony. The other thing that got me through it was being recommended to go to Braille classes, since they were predicting I’d lose all my sight. I duly went for a few months, and it was the best thing I ever did. Not because I can now read Braille (I’m still rubbish at it – it’s actually incredibly hard!) but because I met several deaf-blind people there (Braille is essentially their only communication since they can’t lipread, use sign language (except by touch) or listen to audio or read subtitles). These guys loved life so much despite this, and it made me realise how lucky I was that I could still hear and had only lost one sense.

The weird thing about all this is that as a child, I grew up never talking about diabetes, because it was not the done thing (I once got severely reprimanded, aged 6, by my dad for telling our next-door-neighbour, a farmer, that my dad had diabetes, while I was watching the farmer inject a cow). So I barely ever mentioned it to anyone, even my closest friends. There was no internet and there were no support groups back then, so I had no one to discuss my feelings with even if I’d wanted to. But when I got complications, I couldn’t hide the fact that I couldn’t see properly (I use a white stick sporadically these days, depending on the situation and my mood) and I have absolutely no problem talking about sight loss and diabetes to anyone who’s interested. I write a blog about travel as a blind diabetic, work for 2 diabetes-related charities in my spare time, and do a lot of advocacy in the community. I think the main reason for this change of heart is that I really struggled with not being able to talk about it when I was in my teens and twenties, and I’d love to be able to help even just one person not get complications. Because if you think diabetes sucks, then losing your sight or your leg suck a whole lot more. And it’s also not always easy to deal with things like sight loss. I mainly rely on sheer stubbornness, refusing to let it stop me doing the things I want to do. There are some exceptions: I’m not allowed to drive a car any more (though a friend did let me drive his car around an empty carpark) or fly a plane (which might have been fun, but I couldn’t fly a plane before I lost my sight). I can still play a lot of sports (badly, but my teammates are very supportive), mountain bike (badly, but I’ve only had a few accidents, none of them too serious, and slowly), climb mountains (slowly, but that’s mainly just because I’m not as fit as I’d like to be), work as a full-time academic (luckily I work with computers not hazardous chemicals) and do most normal things. Since my sight loss, I’ve been cross-country skiing and horse-riding and done plenty of stupid things, mostly without harm. I also get lost frequently, can’t recognise my friends (or enemies), fall over in airports and break bones, walk into things, talk to shop dummies, and get frustrated. But apparently “normal” people do all those things too.

So in summary, my message is this. Try not to get complications, because they suck. Big time. Do everything you can to look after yourself (now we have such cool technology these days) to minimise the risk. But you might do everything right and still get complications, just as people who have never smoked sometimes get lung cancer. And if you do get some kind of complication, make the most of what you can still do. Beating yourself up will do you absolutely no good at all, so frankly, I wouldn’t bother. I got diabetes and my brother didn’t. Lucky him. He got a brain tumour and I didn’t. Lucky me. We’re both still alive and plan to stay that way for many more years.

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Complicating Complications

19 Jul

I’ve run on and on about the sight issue with my foot, Right?

In the past, I’ve run on and on about my nasty little rash due to tape allergies….

(I’m not sensitive, I’m intolerant!)

Well, in the interests of completeness, I have managed to combine the two!

Part of my #DIYIV kit is a “Mid-Line Cannula” inserted into vein at the bicep (yes, if you look carefully there is one somewhere) that runs up to my shoulder area. There is a clip stuck to my skin to hold the line in place and it is (was) tapped down with Tegaderm (I think) to prevent infection of the arm.

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Knowing that the tape was likely to give me a rash, I decided to go with it and see how bad it got. After all, I could put up with a bit of a tickle for 6 weeks.

I did already have a rash on my lower arm from the 3 days of tape that held in the standard cannula before the Mid-Line was seductively inserted by the Doctor…….

Within a day, as I had the expected rash appeared and by 7 days it was itching like a bad case of Crabs….

I still elected to carry on with the tape and see how it went.

It went Shit!

The rash and itching was worse and I was reacting to the adhesive of the clip too.

Again, at the weekly dressing change by the Nurse, after a discussion, I stuck (no pun intended) with the same tape.

Stuck….

Kind of ironic.

By that evening the tape just slid off my arm.

The reaction had decided to go nuclear and arm had erupted in to an oozing (genuinely love that word) flow of bodily fluid (not the kind that’s enjoyable to produce…).

Carefully, like an actual grown up, I cleaned the area, let it dry then patched it up as best I could with the only tape I don’t react to. Hypafix.

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All of that was on Sunday. Come Monday I toddle of to work 175 miles away, do a day’s work and get to my hotel. 8pm sees IV drip time and that goes to plan as always.

However, when disconnecting the IV line, I notice that the mass of tape is moving a bit (like too much of a bit!).

Closer inspection sees that the clip is no longer stuck to me as, yes, you guessed it! OOZZZZZZZZING…

Only one thing for it!

Carefully.

And I mean fucking Carefully!

Lift the clip, clean under it, let it dry, strip of Hypafix underneath then tape (what remains of) the clip to that.

Side note: It did cross my mind that the only thing that came close to bothering me was that I was totally un-phased by pissing around with this kind of thing.

My conclusion? People thing I’m resilient. Maybe I’m just stupid.

Anyway, all went to plan, if you can call it a plan and it no looks like this…..

It’s working ok and I will be back home at the weekend, visiting the clinic to come up with a suitable but more professional solution.

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Getting the foot issues has not been ideal.

The treatment could be seen as a challenge.

The rash making the complications (or at least the treatment of them) more complicated is quite frankly taking the piss!

However, it’s just one of those things.

I will never, where humanly possible let, any of this stop me working or living my life the way I want to.

 

When life throws you hand grenades.

Catch them.

Pull out the pins and throw the bloody things back!

Live Long and Bolus

Grumps.

 

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.

 

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.

IV AB Day 3 – Under Scrutiny

30 Jun

I’m going to try and keep these short and quite soon I expect them to stop.

Once I’m up and running on my own this will just become part of my daily routine and there will be no story to tell.

So, the plan for today was….

  • Go to Ambulatory Care
  • Prepare my own IV drip, under supervision
  • Get a longer term (up to 3 months) cannula inserted

As soon as I walked in I could see that there were only two staff in and a lot of people waiting for treatment, so I know I’d have a bit of a wait. This is fine with me. People are getting the care and attention that they need so I will never mind waiting my turn.

The nurse calls me in when it’s my turn. “were you hoping to be trained how to do this today as we are short on staff and it takes a long time to do”.

This is not really what I wanted to hear as I’m impatient to get signed off and let loose with IV in the wild.

I explain that the plan was for me to do the setup but I totally understood if it’s not possible. However, I was on the clock a bit with this as ideally, I would be going away for work on Tuesday (3 days’ time). I explained that I have already had the process explained and was ready to try myself.

“Ok, let’s see if you can recall any of the steps with all of this then” …

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Yesterday I found it easy to remember what to do. Having been around syringes, sharps and solutions it had all felt very familiar to me. So, I rattled off the process step by step without hesitation.

“Oh, you did remember well! How do you feel about trying to do it yourself or would you like to be shown a few more times?”

My reply “Well, you won’t let me go it alone with this stuff if I don’t will you? I’ll do it now”

Sudden flash back to the week I was diagnosed almost 24 years ago.

A nurse comes to do my pre-meal injection (syringe back in those days).

“We will show you how to do this as many times as you need and then when you feel ready you can try yourself”.

Grumps – “I’ll do it now please”

Nurse – “Are you sure you are ready?”

Grumps – “Will I you let me out of here until I can do this myself?”

Nurse – “Well. No…..”

Grumps – “Then please pass me that syringe”

Clearly, I haven’t changed in the last 24 years.

I am still a stubborn bastard!

Everything went to plan an I started myself in my very first #DIYIV

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Unfortunately, there was no Doctor available to do the cannula insertion but that has been moved to tomorrow.

At least it will give me something to write for Day ……..

Live Long and Bolus

Grumps.

Starting on IV – Days 1 &2

29 Jun

I’ve never written a diary.

Nope.

Never.

It’s not really me, is it?

I don’t need to write down my feelings. In fact I try to never have any…..

I don’t really have private thoughts. I tend to spew them about on social media.

However, I have decided to document the next chapter of the treatment of my foot issues on this blog.

Why?

Simple really.

At some point, someone about to start on daily IV antibiotics may stumble across this and it may have some information that helps them along their own journey.

I think of it as possible future peer support……

A short background to all of this.

A foot ulcer that has taken 10 months of treatment so far.

A fantastic team that tailor my care to my needs and life.

A list of old broken bones and trauma that I have no recollection of doing. Clearly alcohol must have been involved at some (or many) point……

So, this week I started the next chapter of this long and at times cheesy (its hard to wash a foot you have to keep dry) story. Before I was lucky enough to go to ADA in Orlando, myself and my team had agreed that the day after I got back I would start a 6-week course of daily IV antibiotics. That due to having to work away, I would be taught to self-administer these so as not to impact my life and importantly my income (no work, no money, no bills paid).

Day 1

Foot clinic first.

The ulcer was looking a bit worse for wear after a week on my feet and all that travel, but the general consensus was that it had fared well and the plan of self-care that we had agreed had worked in the main.

I was also fitted with a new offloading boot. Much more robust than the previous one and it will help aid the healing once the infections (yes, 3 to be exact) in my foot and bone have been banished. Of course, I look like a total knob! However, I managed that with ease even without foot issues so it’s not a problem.

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Then, off I hobble to the Ambulatory Care Unit…..

First bit of good news was that they were expecting me and knew all about the need to self-administer.

Day 1 here was easy.

Cannula inserted.

IV drip set up.

30 min later I was on my way home to return on Day 2 for my first bit of instruction.

All that was left to do was to put on the new boot when home (you can’t drive in these things. To be honest you can barely walk in the bloody thing!), make a cup of coffee and over share the whole experience on Social Media…..

Day 2

Off I head to the hospital armed with a pad and pen!

Forcing myself to try and be a grown up always hurts but IV stuff is serious and whist I’m a dick head most of the time, this is the time to not be.

Today I was shown how to mix the antibiotics and set up the drip.

I wrote it all down step by step.

My writing is shit!

I mean, really shit.

So, had to take a bit of time to make sure I could read it later.

It’s a fairly simple process to be honest. The things I have had to do in the last 24 years that Diabetes has been living with me make it all easy to understand and there is no likelihood of me being overwhelmed with is because this just feels like and extension of what I already do….

My biggest challenge was actually to not tell myself “well that’s easy” and switch off my concentration.

With this going straight into my blood stream, I need to focus on infection control (because an infection whilst administering antibiotics for existing infections would really be taking the piss right now).

Anyway, there I am with 20 min on my hands as the drip is started.

Only one thing to do…..

Tweet it all out there…

I am very grateful for everyone’s best wishes that have been received.

For all that have voiced their concerns for me. I appreciate that too.

However, this is me, I am genuinely ok with this and this will have a successful outcome, and…..

You will have to endure endless tweets and posts about it too…

I am fully aware that my “resilience” can be my downfall. I am my own worst enemy at times as I push myself too far to prove to myself that I’m immortal. Not this time though. You don’t get rid of Grumps that easily…….

I’m back at the hospital again tomorrow, but will tell you about that, well, tomorrow.

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