Ketones and covid

Ketones.  The word has a  lyrical sound.....It makes me think of a music flowing pleasantly from appealing chords to melody, or of soft palettes of colour for creative expression. Ketones are not benevolent or pleasant though.  At least not for people with type 1 diabetes. (There are some  pancreatic-enabled people who choose a ketogenic diet of low or no carbs and high fat.as a weight control method) 

Essentially ketones are toxic acids.   Glucose is our usual source of energy, but if that glucose can't be used in the blood (that's the role of insulin), the body looks for an alternative source of fuel - fat. The liver processes fat into ketones and sends them into the bloodstream. People without diabetes can handle this acid in the blood, but for people with Type 1, the acidic build up  together with high glucose that can't be processed, is a life threatening situation.  It leads to DKA - diabetic ketoacidosis.  DKA can  cause damage to the lungs, brain and kidneys. It is to be avoided at all costs - it can be deadly and requires hospitalization.  

TD's glucose levels have been on the high side for the last while.  At the end of the year we met with the endocrinologist who thought TD was doing a good job of handling the stress of a pandemic, exams and diabetes.  2021 has not been the new start so many were hoping for, it seems to be a continuation of the 2020 mess with the promise of some light at the end of the tunnel.   TD's glucose numbers started to rise ....and rise... until last Saturday she was feeling lethargic, tired and couldn't bring down the glucose from 20s.  We needed to test for ketones. 

TD's glucose meter has the facility to test for ketones using a different test strip.  These strips are fairly expensive, and not covered by medical aid, so we don't keep too many in the house.  As luck would have it, the few we did have had expired, so TD (exhausted and dejected) and I  (anxious and flustered) went in search of more.  (I could not leave her at home in case she deteriorated and needed help).  The first pharmacy offered to order some in, and I could fetch them in a few days time.  The next had a ticket queue of at least 90 minutes wait.  It was quicker to drive the 15 minutes to a pharmacy that I know stocks  them on the open shelf.

A safe ketone reading!

Long story short, there were only trace ketones in TD's blood and we could relax a bit.  Getting the glucose down took a lot of patience, jugs of water and more insulin than she would usually inject in 2 days. 

But it worked, eventually, and the lethargy, dizziness, anxiety and fatigue subsided, and TD could carry on with her weekend.  This will always be a part of TD's life.  She will always have to keep control of her glucose, and avoid the highs as much as the lows. 

 I wish type 1 diabetes were preventable, but it is not. 

I wish avoiding it were as easy as obeying a few rules, like wearing a mask, washing your hands and social distancing, but it is not.

. Life throws us so many things we are completely unable to control.  So when we are given a challenge (like covid) that allows some measure of being able to keep ourselves safe, grab the opportunity to stay healthy with both hands. Please.

TD was in DKA at diagnosis.The build up of ketones and glucose was so high that she was in critical danger.  She survived because a dedicated pathologist ran her tests at night and phoned me at 2am to urge me to rush her to Emergency. She is alive because the insulin that was dripped into her saved her life. The kindness of the doctors and nurses surrounded us when we were  overwhelmed and bewildered. 

It is our turn to show that same dedication and responsibility towards the medical community.  Most of them are feeling overwhelmed and bewildered at the sheer number of people who need their care, and of the loss of life they see daily.  Keep being aware of the dangers of covid.  Keep the preventative measures as daily habits.  Keep safe.  Please.

 

 

 

 

 

 

 

Betrayal

⏹ Not for sensitive readers.  I am banging this blog out on a Sunday morning because the words are tumbling inside me and curdling my sense of peace.  Betrayal is a strong word, but it sums up what I have been feeling the past few days.

Speedy attacked Tolstoy with an intent to kill.  (For any new readers to this blog, I am referring to two of the free range tortoises that allow us to live in the house in their garden.).  It was Friday morning, and TD was taking a study break (chemistry this time) and wandering around the garden.  I heard anguished cries which got more and more desperate sounding.  TD was standing with tiny Tolstoy in her hand, tears streaming down her cheek.  He looked limp, with his head lolling to one side.  She choked out what she had found - the older, larger tortoise, Speedy, had turned Tolstoy on his back, and was biting at his neck.  The strong beak had bitten the eye and mouth and both looked beyond healing.  The immediate action was clear.  I gently held Tolstoy, and TD put a very angry Speedy in a confined space.  She put him in her fenced off veggie patch.  

Poor little Tolstoy.  Poor TD.  Both needed a lot of calming, and soothing before we could even assess the damage.  The swollen face and offset jaw and damaged neck didn't give us much hope for his survival. But he pulled through.  The eye is still too swollen to see if he will have sight again, and the jaw seems to be healing.  We made a "nest"  home for him in a cardboard box, and brought him inside to watch over him. Over the weekend, TD upgraded his home to a larger wooden crate that she made, and put some homely plants and gravel in it.  This tortoise is going to need intensive  care for a while still.

Tolstoy in the ICU TD made

Initially all TD could feel towards Speedy was Anger with a capital A.  I think the feeling was mutual.  Speedy ripped up the herbs in her garden, and trampled the leeks.  Too angry to look at him, we left him there overnight and concentrated on helping Tolstoy.  On Saturday morning, I prepared a portion of the garden for Speedy to live in by himself.

TD and I agreed that this incident was raw nature.  We tend to personify things some times - Speedy was obeying some natural instinct to defend territory, or assert dominance. But it felt like a betrayal.  What if TD hadn't been there at the right moment?  What if Tolstoy never completely recovers?  The garden, which has recently brought us so much pleasure, went gray in a mist of the betrayal of nature.

I reacted strongly too.  I felt broken.  This beautiful creature was damaged by a phenomenon of nature under my watch.  I hadn't picked up any signs or been quick enough to avoid the damage.  I felt drained.  But as with all crises, one copes and deals with circumstances to stabilize the situation.  The recrimination comes later.  The what ifs.  The anger.  The acceptance that there is no fault to assign.  The "we can live with this" attitude, and Gratitude for life.  Diabetes feels like a betrayal.  One expects a body to function properly, and out of nowhere, suddenly it attacks.  Nature can be so cruel. But we learn to trust again, to accept, to be grateful.   Tolstoy survived.  TD survived.  We will be OK.

 

Speedy's new garden of isolation.

Gifts and gratitude

It's the day before Christmas, and all through the house are the sounds of preparations - butternut being chopped, presents being wrapped, letters being written.  We are an industrious family!  Tomorrow 26 of us will be gathered here in a chaotic celebration of togetherness. We are lucky this year to have the London relatives visiting (J of the sugar story in the introduction blog if you have been reading them all, her husband and sweetest seven year old girl who believes in the magic of Christmas, and our son, home for a bit from Cambridge.)  It will be loud.  It will be messy.  It will be indulgent.  And it will be a relief.  Three years ago, TD was in hospital on this day - still in ICU hooked up to drips, being monitored constantly by kindly nurses.  We were at the hospital all the time - there is a parents' rest room attached to the paediatric unit, where we made endless cups of tea, and went when we needed a moment to collect ourselves and muster courage.  Occasionally we popped home one at a time and somehow in that "pop" time I managed to do some Christmas food prep for the family gathering.

On Christmas Day, the doctors decided TD could attend the celebration for an hour.  So (for insurance purposes) she was discharged and then re-admitted to hospital on December 25.  I was terrified.  The dietician had given us a list of dos and don'ts, and TD was already injecting insulin herself, but the What Ifs loomed large in my head.  For me, it was a terrifying Christmas. Luckily I was too tired to do anything but put on a smile and cope.

So this Christmas will be a relief that we have all survived, and are stronger and more resilient.  Anniversaries can be tricky times for me - I get sad, my mind wanders off into places that can be gloomy.  My attempts at mindfulness (living in the moment) slip and slide down memory lane.  This is how I was feeling a few days ago on the anniversary of TD's diagnosis.  But, you will be pleased to know, TD handles this time with grace and serenity.

 The Christmas tree is twinkling in the corner of the lounge.  The presents beneath look enticingly intriguing. The smell of gingerbread stars and trees ( Gingerbread people presented too many gender issues for TD!) is wafting from the kitchen.  Gratitude is coursing through my veins.

Wishing you all a very happy Christmas.

Dear parents of T1s

We are not alone.  We are surrounded by people who care and can help.  Sometimes it seems that all our energy is concentrated on keeping our T1s safe and on the glucose straight and narrow, worrying about numbers and diets and uncontrollable stresses.  We get so focused on that, that we forget to pay enough attention to our own worlds.  Speaking only for myself here, I know that is not healthy - for TD, my family or me.

Everyone is part of a community, whether we acknowledge this or not.  Sometimes it is easy and people surround us, enfold us and support us. Sometimes it requires some effort on our part and we have to seek out communities where we can be supported.  None of this comes easily to me. I am used to coping.  I like to be in control to a large degree.  I like to be calm.  Nothing about children coping with T1 allows for these things.

When TD was in intensive care in hospital at diagnosis, we (husband, son, myself) were on autopilot.  You know how it goes - you cope because you have to, you deal with things as they get thrown at you.  It is a hyperalert state.

Into this world walked  P and her 9 year old daughter. We had met once before when they had just moved to Cape Town and a group of moms and school kids were enjoying a sunny day at a park.  She is Godmother to one of TD's friends.  We had met  before her daughter had been diagnosed with T1 six months before TD's diagnosis.  And she had come to tell me that I would get through this, and her daughter was there to show TD that she would be ok and they were both there to tell us  we were not alone.  This was a huge gift.  In the weeks and months that followed P helped me through with kindness, her vast knowledge about diabetes, and with friendship.  I am so grateful.

Other support comes from complete strangers: people far away in online communities who offer support to anyone needing it. (A big shout out to the TuDiabetes community!)  Friends, family, counselors all form part of the safety net.  My friends - who check up on me, drink tea with me and listen to me probably aren't aware of the huge role they have played.  Don't be shy to ask for help - it doesn't mean you are not strong, it means you are human.

There is a wonderful saying in my country: "Umuntu Ngumuntu Ngabantu"  Roughly translated it means "A person is a person because of people."  We are all in this together. Community is our strength. To all the people who make up the jigsaw puzzle of my life - thank you.

Start at the beginning

Most days I say a silent thank you to Dr M - a man I have never met, and only spoken to once on the phone.  He phoned me at about 1am on Saturday the 20th December 2014.  As the doctor in charge of the pathology tests at the lab a GP had sent Teenage Daughter (TD hence forward!) blood tests at 4pm, he saw them and knew she was in critical danger. TD had been unwell for a while - tired all the time, losing weight and lacking her spark, we had limped to the end of the academic year, and thought a holiday would do the trick.  We had been to the GP a few weeks before with the same symptoms, and he had prescribed an antibiotic.  But she wasn't getting any better, and on a Friday morning at the local grocery shop, she ran out of energy.  She used what little she had left to protest against me taking her back to the doctor (Christmas time was very important to my eleven year old.)  But I picked her up and dragged her there.  He sat her down and did the usual checks.  He then sent her off to provide a urine sample, leaned forward and confidently diagnosed anorexia nervosa.  No.  I knew that was way off and told him so.  I also thought it was a somewhat rash diagnosis.  When TD got back the glucose test strip went violently green, indicating high levels of sugar.  So the GP took some blood and sent us home.  TD and I crawled into my bed (Dad and brother were away for two weeks) and knowing there was something terribly wrong, we drifted in and out of restless dozing.

Until Dr M phoned to say TD's results were critical and could not wait until morning.  He had phoned the local hospital, spoken to the emergency staff, told me a name of a doctor who was waiting for us right then.  He had thought of everything - I bundled TD into the car and went to the waiting emergency room.  He saved TD's life.  I will be eternally grateful.

(Not so much to the GP who sent us home.)

How did you discover your child had diabetes?  Are there people you think of daily in gratitude?  Were you as terrified as me?