DKA - Diabetic Ketoacidosis

DKA is a nasty complaint that John suffers from once or twice a year, and it always results in a trip to  hospital. My simple understanding of it is that his blood starts to turn into something akin to nail polish remover, which isn't good for your major organs

For John we normally know he is spiralling into DKA because he throws up and just keeps throwing up, getting weaker and weaker. The first time we thought it was a stomach bug and nearly left it too late. We got to hospital in time for him to collapse in reception.

DKA is normally caused by an infection in his body, but they can't always find an obvious cause, at which point they normally accuse John of being an alcoholic (- is he you ask - that I think is a topic for a blog on it's own, because the answer is neither yes or no).

So normally John starts vomiting and we decide it is going on too long so  I drive him to the hospital. Next is the trick of making it through triage in a timely-ish manner, because the medical staff at the local hospital are brilliant and wonderful, but they can't believe that the patient might know what is wrong with them without a barrage of tests.

As John isn't the most articulate individual this normal involves me repeating it's DKA to various nursing and medical staff until someone does this blood test which involves taking blood from an artery in his wrist. They come back and say he is acidotic. Then treatment can begin.

Treatment involves flushing his blood with shed loads of saline, and intravenous insulin. If we catch it early he is in and out of hospital in 24hours, although it takes a fortnight before he feels 100% better. If we catch it late John is looking at a week in intensive care, and a fortnight of feeling battered when he gets out.

DKA is life threatening, but treatable, if caught in time.

Finishing off Tuesday .........

I finished Tuesday's blog as I dashed out the door to take my husband to the GP.

Well as you can image the trip to the doctor involved yet more waiting in a day full of waiting, especially as the doctor we see is popular because she doesn't just give patients just the NHS allotted 8minutes or so.

Only a 40minute wait didn't seem long, although John was in a bad mood, because the doctor tends to tell him off, and he had already seen one doctor, even if that doctor was a waste of space. So although the wait wasn't long it was a little uncomfortable as we sat in silence.

Still the doctor called him in and we sat down. John then went through concerns about some medication he was missing (mini steroids for the postural hypotension and codeine phosphate for pain relief); and she asks about the diabetic necrosis on his legs, which is much better, but he is now getting lesions on his wrists, however as he has an appointment with the dermatologist on 24th it is carry on the good work.
The doctor asks is there is anything else and John hands over to me, so I go through the horrendous appointment we had had earlier and update the doctor on everything else as well. Her reaction is that a referral back to the diabetic consultant, Mr R is a good thing, and take a list of questions with us, because she has a lot of the same questions as I do. She also admitted that John will probably end up back under her care.

Up to this point she was doing really well, then came the fact that she had received a form from the DWP (Department of Work and Pensions) about John's claim for disability living allowance. She had to ask about his back (she diagnosed crushed vertebrae about 9 years ago), as she wasn't actively treating it; then she seemed to think the arthritis in his hands wasn't much of and issue (nope he just can't do things like peel potatoes any more, and using his blood tester is getting more difficult); and walking is an issue if a trip to the supermarket leaves you exhausted. So now John and I will wait to see what response we get from the DWP to find out just how healthy the doctor has made him out to be.

Let me see was there anything else??? The doctor did bother to take his blood pressure (a little on the low side) and she asked if he felt the antidepressants were working (who knows). To be fair it was a better consultation and at least everything was noted.

Autonomic Neuropathy ......... What ever that is ........ (Part 2)

Well continuing from where I finished off yesterday. John left hospital with new drugs, a couple of referrals, feeling as bad as ever and a letter to his GP stating autonomic neuropathy? and postural hypotension.

So now it was my turn to start researching, starting with the postural hypotension as I could remember how to spell that. Well that was straightforward enough and basically means that his blood pressure drops through his boots when he changes position, specifically from lying down to sitting and from sitting to standing. Common treatments included the mini steroids he had been prescribed.

Next up I researched autonomic neuropathy / diabetic neuropathy - and this is where I started getting scared. Two of the studies I printed off for him in that first week can be found at Diabetic Neuropathies: The Nerve Damage of Diabetes and DIABETES - Diabetic Neuropathies: The Nerve Damage of Diabetes there was a third which I think John has 'lost' which basically gave a prognosis of 'most individuals die within 7 years of diagnosis'. A bit later I also found this article Diabetic Neuropathy which was even scarier

Now John's blood sugar control has never been great, but I must say that in the 2.5months since he was diagnosed it has been a lot better, if anything he is at risk of a hypoglycaemic episode at any moment and he hasn't been getting  the warning signs.

Additionally in the passed 10 weeks we have been to the opticians only to be referred to an opthamologist at the hospital because of spots on his retinas - follow up in 1 year, visited the dermatologist about the massive sores on his shins - follow up 8weeks, we have visited the doctor, we have applied for disability and John has had to wear a blood pressure monitor for 24 hours.

Autonomic Neuropathy ......... What ever that is ........

It was the end of April this year when John was complaining that he felt strange, dizzy, zoned and had been for days. As usual he left it until the weekend to say anything so I rang the out of hours doctor, and spoke to a nurse, who took my details. The doctor rang back and although all I was after was advice John was given an appointment at the surgery they run out of the hospital. So we trooped off to the hospital, John and I. I think the children must have been away as I don't remember have to sort out care for them, although my next door neighbour has stepped into the breach many times and may have this time too.

Well as it was quiet we were seen right away by the doctor who did the normal - what is the problem, how long have you had it, what are your blood sugars like etc.Well John's blood sugars had been a bit low that morning (which is an absolute miracle that man always had high sugars) so the doctor said ahhhh that will be it he is suffering a bit of a hypo and he will be fine. Well I wasn't going to accept that - John had been feeling like that for a couple of days and one low blood sugar reading didn't explain it. well the doctor checked John's blood pressure and got an odd reading in that it was a bit low, so referred him to the EAU (Emergency Assessment Unit).

As I said earlier the doctor's surgery is in the hospital on Saturday's and Sunday's so it was just a walk upstairs and then a new waiting room to sit around (or in John's case lying around). Now the thing with hospitals is they tend to check you over while you are reclining and John felt fine as long as he didn't have to stand up or sit up so we spent some time as a fairly low priority, then I am not sure why probably me moaning on, the nurse decided to do a standing blood pressure test.

John's blood pressure dropped really really low and his heart raced, so they quickly got him to lay down again, and the nurse went to find a doctor. This is when we realised that we weren't just wasting time (cos to be fair we thought we were), and that John was probably looking at another hospital stay. So they found him a bed and moved him from the waiting room onto the ward proper and we got to wait around for doctors some more.

I don't know what the service is like in the rest of the world, but I must admit that my experience of hospitals in the UK is a lot of rush rush followed by a lot of waiting, often for a doctor to tell us what happens next.

So there he is all wired for sound, and every time he moves an alarm goes off to say his heart beat is too fast, and I am reading everybody else's machines and comparing them to John's. The doctor looking after John rushes over when the alarm goes off because he sat up to have some soup and says he needs to see the consultant. Then that doctor disappears, probably on a long overdue rest period, but I don't care by this stage, because the consultant is on the ward and he is seeing other people, but not my husband. The other junior doctors are taking him round, our doctor reappears and disappears again. John doesn't realise it but I am really worried that the consultant is going to leave without seeing him.

Finally the consultant comes over with our doctor and says turn off the monitor and of course John has a high heart rate it is the stress of being in hospital (now that might explain a slight rise, but a heart rate of over 170 when you sit up is more than the stress of being in hospital). John is to be kept in overnight (so that means I can go home and get something to eat - I think we have been there about 6 hours at this stage).

I escape the hospital relieved that he is in safe hands and narked off with him because he wants me to go home and get him some bits and pieces, and go back that night with them. I do run his errand (like usual) but I wish he would think about how tired I get, and I still have to sort out our girls.

Now according to him every time they took his blood pressure they had someone standing behind him to catch him just in case he passed out, and they stopped his high blood pressure medication and swapped it for a mini steroid, but even so they discharged him the next day with a diagnosis of Autonomic Neuropathy, and referrals to a dermatologist and a cardiologist, and obviously a change in medication.

Now the next bit will have a bit of a crescendo tomorrow, because tomorrow he has an appointment at the hospital and hopefully we will find out more, so from hospital discharge to that appointment will be the next blog.

Bad Days

John has been having quite a lot of bad days lately. The postural hypotension makes him feel dizzy, and the hot weather makes it worse and it is worse in the mornings as well.

A typical day at the moments:

I get up about 6:30 and get ready for work, 7am I start calling the rest of the family to get up, 7:10am children are up and getting ready for school, 7:45am I check John is okay, 7:50am John staggers down stairs and collapses on the sofa, just as I leave for work.

Some days I get back from work at about 6pm and he is still collapsed on the sofa (a really bad day), other days he tells me he has been upright since about lunch time and he may even have done some jobs round the house (hurrah).

Anyone who lives with someone with depression will tell you that the above scenario also applies to a bad day with depression, so John is doubly doomed, or is that me who is doubly doomed??? Although being dizzy most of the time would make most people feel depressed anyway.

And if his back is playing up obviously that will also see him horizontal for a day.

Still on the positive side he does have some good days still where he will be up and moving by about 10am, but even a short walk (e.g. round the supermarket) will leave him needing to sit down to recover. You have to make the most of the good days and hope there are more of them than bad days.

OMG He's got ........... Diabetes

John had been suffering the classic symptoms of diabetes for ages; he was always thirsty; he needed the toilet a lot, to the extent that he rarely slept through the night without having to get up and go to the bathroom; but being what I call a typical boy he didn't dream of going to the doctor. In fact it had been going on for so long I just assumed he had a weak bladder and that was the way he was.

Then he had a problem 'down stairs', it's along time ago now, but I think he was having problems peeing. Anyway I got him an appointment at the doctor (a female doctor - oops) and off he went.

Well image how he felt when the doctor diagnosed him with Thrush ....... to start with my name was mud ........ but he was lucky because the doctor was a bit of an expert on diabetes and from a diagnosis of Thrush and a chat with him she suspected diabetes, and arranged the blood tests.

It then started moving really quickly - the blood test confirmed diabetes and he took me along to the appointment, which was a good thing, because to start with it didn't sink in and I picked up on information he had missed. (and he decide the Thrush wasn't my fault)

Due to his age it was assumed that it was type 2 Diabetes, so the first treatment was adjusting his diet and seeing if that worked. Here the doctor's experience was fantastic and she realised very quickly that that wasn't working, so he was put onto metaformin tablets.

Diet and Metaformin tablets are the 2 most common treatments for type 2 diabetes in the UK. As I understand it (and I am not a doctor and have zero medical training) - Diet is great if your pancreas is still working fairly well and metaformin will boost the efficiency of it if it isn't working brilliantly.

John was only on tablets about 6 weeks before it was decided his body wasn't producing any insulin so he need to inject. From what the doctor said, in the normal course of things, it would have taken nearer 6 months to get to this stage, but because she was a specialist she accelerated the process.

At this stage it was still felt by the doctor that he was type 2, although I suspected late onset type 1 after research on the internet. (In fact the consultant at the hospital has only agreed it was type 1 in the past couple of years).

Being told he had to have insulin injections freaked John out a bit - with visions of hypodermic needles and vials of stuff ...... image his relief when he was shown the pen injection. Neat, discrete and easy to use, with the quantity governed by a clever dial mechanism - the inventor of these is a marvel (in my opinion :-) )

Now John has not been good at controlling his blood sugars and that explains some of his other conditions, but that is for another blog or six.

Well there is alot of information above (I have probably missed some stuff too, so if you have a question post below and I will do my best to answer - or point you in the direction of an answer) but I thought I would summarise what I think are the key things we learnt:

1. Key symptoms of diabetes: - thirst, needing the toilet a lot, and in my husband's case Thrush
2. Take someone with you if you are likely to get 'big' news from the doctor - someone needs to listen and ask questions and you will probably be in shock.
3. Research on the internet - but don't believe everything you read. If you are in the UK please remember that in places where there isn't free health care there is a higher instance of the nasty side effects of diabetes (renal failure, blindness, amputations etc.) and you can scare yourself half to death
4. There are two types of diabetes - type 1 (normally diagnosed in childhood, although there is late onset which starts in your late 20s / early 30s) and type 2 (a number of factors relate to this - heredity, diet, weight, having a big baby. This tends to start in later life)
5. The pancreas is the organ that produces insulin and is what has failed in some way if you are diabetic.
   
   
6. Keep your blood sugars under control and you will minimise the bad effects and live a long and health life

Well I hope all of the above makes sense, I hope it is useful, and if you have any comments or questions just post below.

(Please remember I am NOT a doctor, I have NO medical training, I am just someone who lives with a diabetic and the consequences of diabetes)

An Introduction ........... a beginning .............

Hallo out there in internet space,

This is my introduction to my blog, a beginning, which will help me let off steam when living with my husband gets too much for me. It will hopefully give other people an insight, and maybe make them feel less alone, because some days I feel very isolated by his conditions and I don't seem to be able to find a support group to 'fit'.

So who am I and just as importantly who is my husband and why do I describe him as chronically ill.

Me first, since I am writing this - I am an employed mum of two, who will be thirty *cough* something tomorrow. I have been married forever ........ well thirteen years ........... and all of them to the same man. That man I am going to call John in all my posts, because despite it all I do love him (sorry a little soppy) and I have no desire for anyone to identify him and tell him my little frustrations, because he has enough on his plate ......

So on to John...... well he is also in his thirties, he is unemployed, although he says being a full time dad is a job in and of itself ........ and he is ill.

Now you get to see if you agree with me, I have decided to list his problems in chronically-ish order (i.e. longest suffered first)

1. Compressed Vertebrae in his lower back - constant back ache
2. Arthritis - mostly in hands but also in knees (we think) - his hands seize up
3. Late onset Type 1 diabetes (it only took the doctors about 6 years to agree it is type 1 not type 2) - unless you suffer or know someone who does this will be a mystery with a silly comment like he just needs not to eat sugar or something
4. Anxiety / depression - mental health is the pits and in the UK you have to be persistent and patient to get treated ....... I am sorry but drugs and counselling are not the answer for everyone.
   and most recently
5. Autonomic Neuropathy - this was diagnosed less than 3 months ago and my current opinion is I know as much as most doctors do from research on the internet - what really scares me is that if the internet is to be believed my husband will probably be dead in 3 to 7 years - don't believe me - google the topic yourself - 50% die within 3 years (patientline uk) most die with 7 years (I can't remember which website that was but it was high up the google search engine)
6. Postural Hypotension - a symptom of autonomic neuropathy resulting in dizziness and blackouts
7. I think it was diabetic necrosis - (basically massive great sores on his shins, which after a year he finally got treated)

I think that is about it - oh and to top it off he is bad tempered, grumpy and has anger issues. This ignores the fact that family history tends to indicate that he carries the cancer gene as well (on his mum's side 4 out of 5 have / are dead due to terminal cancer, including sadly his mum who died just over a year ago). Sometimes we wonder should we have had kids ........ the poor eyesight comes from me, but from him there is alot of bad genetics.

So from all that you may have guessed that he is never going to be well again, and that is all that chronically ill means - not dying, but not getting better. Chronic conditions change your life, but often people don't realise how much. And the other thing they change is the lives of your entire family.

Right this is about as serious as it gets .......... my sense of humour is fairly dry ................. my husband and I share a very fatalistic humour ............. for example we can see the funny side to the fact that between us we are running out of parents, very careless of us ............... if you can't deal with that I am sorry but it help us cope.

Next time I will start delving a little deeper into John's conditions and how they impact on family life ............ *Wave* ................. bye for now