An Imperfect Future

An Imperfect Future

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Genre: Non-Fiction

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Details

Status: In Progress

Genre: Non-Fiction

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Summary

An "Imperfect Future" is the sequel to "Ringing God's Doorbell" which was a diary telling of the treatment and recovery from septic shock and subsequent kidney failure
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Summary

An "Imperfect Future" is the sequel to "Ringing God's Doorbell" which was a diary telling of the treatment and recovery from septic shock and subsequent kidney failure

Content

Submitted: January 12, 2016

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Content

Submitted: January 12, 2016

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Michael Sellings

 

 

 

 

AN IMPERFECT FUTURE

 

(The sequel to "Ringing God's Doorbell")

 

 

 

"Ringing God's Doorbell" was a diary of getting septic shock with kidney failure. This is a follow-up diary covering the weeks after discharge from hospital.

 

It proved to be only the beginning of a difficult struggle back to reasonable health.  The word "reasonable" has been used, as the damage done has been permanent. Until God answers my ring, I have to accept a less than perfect future....hence the title.

 

First, just a short recap...

 

An inconvenient but controllable condition of Myelodysplasia with Hairy Cell Leukaemia, first diagnosed in 2006, had proved an unwelcome intrusion on my retirement.

 

Chemotherapy had put the leukaemia into remission until mid-2014, when my haematologist intimated that a rising white cell count meant that another bone marrow biopsy would be necessary and more chemotherapy a certainty before the year was up.

 

All that went out the window when, on a visit to the Isle of Wight, to celebrate our wedding anniversary in September 2014, septic shock, leading to kidney failure, put me in ITU at St. Mary's Hospital, Newport, Isle of Wight, with transfer by ambulance to Eastbourne ITU, then onto the Brighton Renal Unit at the Royal Sussex County Hospital.

 

This life-changing 4 weeks is recounted in my diary, "Ringing God's Doorbell".

 

Fast forward to October 2014, now discharged from hospital, I had come to terms with the fact, that although having escaped dialysis by the skin of my nephrons, the whole episode had left me 8kg. down in weight, with a GFR (kidney filtration rate) a third of normal, a creatinine clearance (a measure of toxin-clearing efficiency)at 250 (normal about 100).  I had also lost half of my haemoglobin, with a level of 70 (normal about 130-180), causing anaemia, weakness and lack of energy. (Walking more than half a mile was a struggle)

 

Now I was at home, a new unpleasant problem made its appearance.  Although damaged, my kidneys were shoving fluids through my body at a prodigious rate.  It was necessary to drink 2-3-litres of water a day to prevent further damage and aid recovery.  This I was doing, but my kidneys were uncontrollably dehydrating me, whilst not actually completely shifting the toxins (mainly urea).  Apparently, this is experienced with around 80% of patients with kidney impairment, particularly those on dialysis.

 

The combination of dry skin and high blood urea was causing a burning itch, similar to stinging nettles.  There was no rash, spots or redness, but sleep became impossible.  Close fitting clothing, especially belts and socks, meant that the itch was driving me crazy, and I eventually ended up naked, having swabbed myself with a flannel and rubbing myself raw with a rough towel.  A Japanese silk kimono which touched my skin only lightly, proved very nice to wear.  Getting up and walking about seemed to disperse the toxins and gave short-term relief.  My wife frequently found me in the bath in the early hours. Emollient creams and bowls of hot soup boosted morale.  Momentarily.

 

The weather outside became colder and the sofa became my new best friend.  Mindless panel games and antique auction sales on TV filled the time between tearing at my body.  I began to give up all hope of getting out, exercising, recovering  and living a normal life.  I was in despair.

 

My GP went through a range of antihistamines for the itching, and eventually, 30mg. of steroids daily for a week.  Although I got a buzz from the steroids there was little improvement and high dose steroids could not be continued indefinitely.

 

Then, one Sunday night, it became too much.  My body was on fire, both forearms had become swollen solid and were covered with very unpleasant raised red spots.  We called 111 and the attending doctor, fearing a recurrence of the septic shock, admitted me to Eastbourne DGH Medical Assessment Unit,  as my blood pressure was very low and my heart racing. In hospital I was blood-tested and septic shock ruled out.  Once again, dosed up on steroids and antihistamines, the crisis passed, and I was discharged in 2 days.  The miserable burning itch, however, had not gone away.

 

Whilst in MAU, I was visited by my Consultant Haematologist, who took the opportunity of my captivity, to take a bone marrow sample from my pelvis, to get an idea of activity, (or not).  The bone marrow is the "factory" where blood cells are made.  He prescribed EPO hormone injections to stimulate haemoglobin production, giving me a maximum dosage of 30,000 units, each of which was kept in a pre-filled syringe in the fridgeand administered every Tuesday, by yours truly, into the stomach skin.

 

Once home I visited my GP yet again, he declared himself out of ideas, regarding the burning itch and we were both desperate for a solution.  Then, one day, Mavis (my wife), trolling through the internet came across a seemingly miracle treatment.  Gabapentin, an established drug used in the treatment of nerve-ending pain, such as shingles and a prophylactic treatment for epilepsy, appeared also to be very effective in easing the burning itch, I was experiencing.  According to the patient blogs on a forum, relief was instant.  Mavis and I quickly visited our GP, not quite knowing how he would take our suggestion, but he seemed happy to try.

 

The normal dose was 1200-1600 mg. daily, but because my kidneys were impaired, he started at 100mg. capsule twice daily.  Within 30 minutes the burning itch went away and I slept for the first time in weeks.  The problem was, however, the effect ran out of steam after 4 hours.  Gradually the dose was increased to 100mg, 6 times a day, and for the first time relief was day long and permanent.  Rid of the daily misery, I was now able to get around, exercise, eat and gain weight and fitness.  Gaining around 5kg. my concentration-camp skinny arms and legs took on some bulk and shape, a result of which I found that Gabapentin was no longer needed.

 

We could now book up Christmas at Warner's Hotel, Hayling Island and were able to enjoy the accommodation, entertainment and food.  Then on the penultimate day of our stay, I got a full-blown chest infection,  coughing up thick, green nasties. Visiting my GP as soon as I got home, I was given Ampicillin 500mg. for a week.  This very soon got the better of the infection, but uncontrollable coughing caused a continuous nagging pain in the spleen area.

 

The leukaemia had caused the spleen to work overtime and it was considerably enlarged and vunerable.  After 2 days, the pain became greater and once again, late on a Sunday night, we called 111.  This time a paramedic called and immediately admitted that renal impairment and leukaemia was a little outside his normal experience,

 

He agreed that I may have damaged my spleen with all the reaching and coughing.  As the need could be surgical and our local surgical centre at Eastbourne DGH had been closed, (a disgraceful decision that ignored a 100,000 signature petition, multiple mass marches, many meetings and our local MP asking parliamentary questions), he arranged for an admission the next day, to the Surgical Assessment Unit at The Conquest Hospital, Hastings, 20 miles away.  It was also arranged that should things get worse, I could go anytime in between.  By 3 am.things had indeed got worse and Mavis drove me there !

 

On arrival I was blood-tested.  My CRP and ESR inflammatory markers were well up and I was given oral morphine, but the pain persisted.  More morphine in capsule and injection form folowed and the pain became bearable.

 

Scans and X-rays showed no damage to the spleen, so I was discharged back home.  Unfortunately, although I was relatively pain-free, the antibiotics and morphine had done their worst and my poor gut had not moved for over a week, so was solid and immobile !

 

On arrival home, I was given the news that the bone marrow sample showed that my myelodysplasia had developed into Chronic Myelomonocytic Leukaemia (CMML for short) and I was admiited straight away to Pevensey Ward in the haematology department of Eastbourne DGH.  The intention was to start chemotherapy, but events of the last few weeks had affected my ailing kidneys and the creatinine clearance had doubled to 500 plus, making Chemotherapy treatment out of the question.

 

With constipation finishing in one explosive episode, thanks to multiple doses of a disgusting-tasting laxitive, Laxido, my kidneys were coaxed back into line, by hooking me up to 1 litre bags of intravenous saline 24/7.

 

After 8 days everyone was happy with the kidney function (I was threatened with a return to the Brighton Renal Unit).  As my white cell count was 10 times normal at 63, I was put on a white-cell suppresant Hydroxycarbamide, which had to be taken in capsule form.

 

Then they sent me home.  In 10 days time I was blood-tested which showed that Hydroxycarbamide had achieved the aim of putting the white  cell count in the normal range, but at the expense of lowering my platelets to only 17 (normal being 150-450), so it was discontinued.

 

Next on the menu was Azacitidine, which suppresses the CMML, and  is given daily as two subcutaneous injections in the abdomen, for 7 days.  unfortunately, it has to be made up on the day and has a shelf-life of only 4 hours, which necessitates a daily visit to hospital around 3pm, which really messes up your daily life !  To make things worse, it is usual that Azacitidine has to be given continuously for life, as it is not a cure. This means that you have to fit everything around injection days and then make the most of your "days off" after each course. But it keeps you alive.

 

At the time of writing this, I have just finished the second course.  on the plus side, white cell count has returned to the normal range and my haemoglobin is up to 130 which is the lower limit.

 

My haematologist is very excited by the numbers !

 

On the minus side, mid-cycle platelets are only 25 (150-450 normal).  Each Monday has become blood test day in order to monitor them.  By the time the next cycle is due, they have recovered to 45.  Also at the end of each course, it feels as though 14 hornets have attacked my stomach and the skin is brown and peeling like sunburn!

 

The Evergreen Singers are back rehearsing and performing and Mavis and I are about to depart on a 5 day motorhome holiday in Kent in an attempt to regain some normality in our lives.  (Our car knows its own way to the hospital and we have a free pass to the car park !)

 

I hope this diary has given an insight into the rough ride that septic shock and kidney failure combined with leukaemia, can give you.  Progress is slow but encouragingly sure and I look forward to what no doubt will be an imperfect future.

 

Michael Sellings

May 2015

 

 


© Copyright 2017 Michael Sellings. All rights reserved.

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