Type 1 Diabetes Complications Leads to a Sad Loss

from Trevor Webster (UK)

Writing to you when your site is all about Diabetes is particularly painful, because my wife, Mollie, suffered with type 1 diabetes for 35 years. Long term complications of diabetes contributed towards her death.

It was actually hospital caught infections - super bugs that caused Mollie's demise. But complications of diabetes led to so many things being out of balance in her body that her resistance was lowered considerably.

Mollie developed diabetes as a spin off from pancreatitis that she had in Singapore in 1970. For about 25 years, apart from lowered energy levels and daily injections of insulin, diabetes didn't have much effect on Mollie's lifestyle. Okay there were the occasional hypos, but we both knew how to handle them.

Then, because Mollie was having a bit of a discharge, she had a gynaecological examination. The gynaecologist thought there 'might' be some abnormal cells, so just in case, recommended a hysterectomy. That's where things started going wrong.

After surgery Mollie was on a morphine pump for pain control. Any time she was in pain she just had to press a button on the pump to self-inject morphine. I sat by her bedside until 11.30 pm, when the nurse said I should go home and sleep. Mollie would be well cared for.

As I arrived home the phone rang. It was the nurse asking me to go back to the hospital.

I drove back in a state of near-panic. When I arrived at the ward the resuscitation equipment was on the floor at the foot of Mollie's bed. I almost flipped then.

The nurse reassured me. The panic was over. A nurse passing Mollie's bed realised she'd stopped breathing. Hence the resuscitation equipment. It emerged that Mollie was sensitive to morphine. But we never knew how long she'd stopped breathing for.

Whether due to the shock of the surgery, or to the breathing cessation I don't know. But that event triggered off a whole load of complications of diabetes.

Mollie developed cataracts and diabetic retinopathy. The latter led to a detached retina and the eventual loss of an eye. Cataract surgery on the other eye helped, but her sight was poor - especially after dark.

She developed apnoea - stopped breathing while asleep, struggled for breath and eventually half-woke up with a great snorting gasp for air, then gradually breathed shallower and shallower until the whole cycle repeated itself. As a result, she never had a good night's sleep. This further depleted her energy levels.

Freiberg's disease developed in Mollie's feet. This is a disease that only affects diabetics, and is rare even then. It seems the bones of the feet grow thicker at the ends, so forcing them out of their sockets. Mollie had to have specially designed shoes with made to measure support pads in them.

Naturally Freiberg's disease is painful. But Mollie also developed diabetic neuropathy in her feet. This too was painful at first. But gradually she lost feeling in her feet. This might seem a blessing in disguise as far as the pain relief is concerned. But it contributed to her death later.

One foot tended to drag a little. Since she couldn't feel it, she had a number of falls as a result. So Mollie started using a walking stick to help prevent the occasional fall.

Later came underactive thyroid. But the big blow was kidney failure last year. This was by far the worst complication. If you think the diabetic diet is restricting, I can tell you it's nowhere near as bad as a renal failure diet. This is so much more complicated than simply watching the carbs. And the information given was so vague.

Dialysis is brilliant. Without it most kidney patients would die. And in my experience the renal nurses are brilliant. They are light years ahead of the other nurses - at least that was the case in the two hospitals where Mollie was treated.

They work much harder and are super diligent in their hygiene and the way they care for patients. Hygiene has to be top class because they are dealing with body fluids. But compared to the other nursing staffs I saw, they all go the extra mile.

But dialysis, despite the great technological advances, is not as efficient as healthy kidneys. So patients have to avoid sodium, potassium and phosphorous in their diet. Bananas are out! They have a high potassium content.

And cooking potatos is a chore and a half! They contain sodium. So you're advised to peel and soak them in water the day before you plan to eat them. Then throw away the water and some of the sodium that will have leached out into the water.

Then you must boil the potatoes once and throw away that water. Add more water - I boiled that first in the kettle - and continue cooking the potatoes normally. If you want fries you have to boil them first before frying them.

We were given a list of fruits and vegetable to avoid, fruits and vegetables to eat sparingly, and others that could be eaten freely. But if you buy any packaged foods you have to read the nutritional contents labels and make an educated guess as to whether or not they are safe.

Unlike with a diabetic diet we were never given real guidance on what levels of the three minerals were safe and what were unsafe. It was all over-simplified. Hence the 'educated guess'.

Trying to get a renal dietician to give some real practical guidance is like trying to hold a slippery eel in wet hands. Maybe they aren't certain enough to give definite guidelines, so give the vague ones instead.

At the same time as Mollie's kidneys failed it was observed that she had anaemia too.

So all of these are long term complications of diabetes. Complications I hope you never have to experience.

My best advice is stay away from hospitals as much as you can. It was the hysterectomy that triggered off Mollie's problems. And that turned out to have been unnecessary; there were no abnormal cells!

Each time Mollie had eye surgery her blood sugar levels soared. They would want her to stay in hospital until they got them under control. But Mollie refused, saying she'd get them under control better by leading her normal lifestyle instead of sitting in hospital. Each time she proved herself right.

It's a great pity she didn't insist on the same when she broke her leg. This was the accident that led to Mollie going back to hospital. She only left just over 3 months later when she died.

When Mollie's kidneys failed last August she also lost most of the strength in her legs. But after coming home six weeks later, she worked at rebuilding her strength and was getting stronger. She managed to climb the stairs unaided after a couple of months, whereas before then, I was having to help her lift her right leg. This weakness may have been something to do with the neuropathy.

Then one week to the day before Christmas Day, Mollie went to the bathroom at 7.30 am. She could manage this okay by holding onto furniture and the stair rail. From the end of the stair rail to the bathroom door was one pace. On the way back to the bedroom her right foot - the one that tended to drag a little - dragged enough to cause her to fall. As she fell she twisted and broke her thigh bone right at the top.

In hospital they operated and secured the broken piece of bone with a screw. The wound from the surgery healed quickly. But nursing staff and physiotherapists were so eager to get Mollie out of bed and moving, that they had her sitting in the bedside chair just 2 days after surgery.

Because of the pain Mollie was unable to adjust her position. She was left sitting right through the day, most days without moving, except when she went for dialysis three days a week. The long hours of sitting caused a pressure sore to develop on Mollie's tail bone.

This became infected with the hospital super-bug MRSA. She never did beat that. Nor did antibiotics. Although it didn't cause her death, the MRSA was pulling her down all the time. It lowered her resistance to other super bugs roaming around British hospitals.

First it was a colon infection and severe diarrhoea. Eventually antibiotics did stop that after 2-3 weeks. Then Mollie caught a lung infection before the colon infection had died down. I kept taking nutritional supplements to her because the drugs were draining nutrients from her system and she wasn't eating much.

Gradually these seemed to be helping. One weekend Mollie seemed much stronger and started eating well too. It looked as though she would be coming home before long.

Then when I went to visit her on the Monday, she was slumped down in the bed again with an oxygen mask on. From being much stronger and vigorous on Sunday, the lung infection had struck again. With a hypodermic syringe a doctor drained around 700 ml of fluid from Mollie's lungs.

From there it was a downwards spiral. She died two weeks later on March 31st.

I'm giving you all this detail - which you are welcome to make use of on your website - to show just how diabetes can go downhill. And all the complications that can, and in Mollie's case, did arise.

Something I should point out: Mollie never allowed diabetes to rule her life. Of course on insulin the diet is less restrictive, provided you keep the balance between insulin and carbs. But Mollie didn't keep a strict check on her blood sugar levels as she should. She always insisted that she could tell by how she felt, whether her sugar levels were up or down.

What she didn't tell me a couple of years ago, was that the indicators that told her how her sugar levels were, had disappeared. She started having much more severe hypos. So severe in fact that I suspected a mini stroke with the first of them. But when we told Mollie's doctor, she simply made a note of it and made no comment.

It was only when Mollie was in hospital at the time her kidneys failed that this all came out. I was asking the diabetic consultant about the change in symptoms, when Mollie blurted out that the indicators she had previously relied on, were no longer there.

That's when he explained that the hypos where I'd suspected a mini stroke, were in fact extra low blood sugar levels. Previously when the indicators worked for Mollie, we'd always been able to stop a hypo before her blood sugar had dropped so low.

Mollie never was very communicative about her illness. If anyone - including me - asked how she was feeling, it was always the same answer, "All right." Even when she obviously wasn't all right!

After that I took charge of her blood sugar monitoring. I got a new and very simple to use monitor, and made sure every reading was recorded. I even got a computer program from the monitor manufacturer and noted it all on the PC.

I know you use a different scale for blood sugar in the USA. On the scale we use in the UK, a blood sugar reading of 7 is about normal. One night Mollie went to bed early. When I joined her I could see she wasn't normal, so I tested her blood sugar. It was 1.9! Ultra low!

Previously honey had always proven the best form of sugar for boosting her blood sugar. But honey is on the 'no no' list for kidney patients. A nurse had told me that rubbing a sugar solution into the gums of a patient in hypo, is a good way to get sugar into the bloodstream when the patient is unconscious.

Mollie wasn't strictly unconscious - it was more like she was having a fit. She was twitching and jerking. As I tried to rub sugar solution into her gums she bit my finger.

So I got a dropper from a dropper bottle of herbal remedy and used that to put sugar solution into her mouth. After a half hour I checked her blood sugar level again and it had risen to 5. I left it an hour then before another check. This time it was down to just over 2. So it was back on the sugar solution and the dropper. Finally around 4.30 am we had her blood sugar back to around normal. What a night!

With events like that, and the perpetual three dialysis a week, I suppose Mollie is now in the best place. She's no longer suffering in silence the way she always did.

But I miss her. It was our wedding anniversary on March 14th. 47 years we were married! I was 21 and Mollie was 19. So here's a lot of water under the bridge.

Avoid hospitals like the plague - they're dangerous places!

All the best, and keep smiling.


Trevor Webster

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