Tuesday, January 7, 2025

 

140 – Circling the Drain, Part 7: 7 January 2025


Margaret and me being silly at Wilpena Pound on 25 March 2015.

****

Shortly after my June 2021 hospital admission, Dr Kannusamy prescribed a daily dose of 25 milligrams of Amitriptyline Alphapharm.  He told me this was effective for stomach bloat and breathlessness.  I now know the primary usage of Amitriptyline is for depression.  The Amitriptyline Alphapharm did not help me.  I did not have depression.

****

Mayo Clinic says this about Amitriptyline Alphapharm.

Amitriptyline is used to treat symptoms of depression. It works on the central nervous system (CNS) to increase levels of certain chemicals in the brain. This medicine is a tricyclic antidepressant (TCA).

This medicine is available only with your doctor's prescription.

  

**** 

This is what the Australian Government website Health Direct, says about Amitriptyline Alphapharm.

What it is used for

For the treatment of major depressionNocturnal enuresis where organic pathology has been excluded.

 

Health Direct refers to the possible use of Amitriptyline Alphapharm for “nocturnal enuresis”.  Nocturnal enuresis is bedwetting.  I was definitely not peeing in my sleep.  Back then, I would have been very grateful to be able to sleep at all.

****

Amitriptyline Alphapharm sometimes has bad side effects.  This is from Mayo Clinic.

Amitriptyline may cause some people to be agitated, irritable, or display other abnormal behaviors. It may also cause some people to have suicidal thoughts and tendencies or to become more depressed. If you or your caregiver notice any of these adverse effects, tell your doctor right away.

Do not take amitriptyline if you have taken a monoamine oxidase (MAO) inhibitor (isocarboxazid [Marplan®], phenelzine [Nardil®], selegiline [Eldepryl, or tranylcypromine [Parnate]) in the past 2 weeks. Do not start taking a MAO inhibitor within 5 days of stopping amitriptyline. If you do, you may develop confusion, agitation, restlessness, stomach or intestinal symptoms, sudden high body temperature, extremely high blood pressure, or severe convulsions.

Do not take other medicines unless they have been discussed with your doctor. Using this medicine together with cisapride (Propulsid, may increase the chance of having serious side effects.

 I cannot say whether I suffered side effects from the Amitriptyline Alphapharm.  I suffered massive pain but I don’t know whether Amitriptyline Alphapharm caused the pain.  I know was not warned about the possible side effects of Amitriptyline Alphapharm

****Apart from possible side effects, there were known medical reasons why Amitriptyline Alphapharm was very bad for me.

After my open heart surgery in November 2018, I began a daily 100 milligrams of Aspirin.  This is normal for heart surgery patients.  My treating heart doctor recommended that I take the Aspirin.  Aspirin was named in the typed medications list I took with me to hospital in June 2021.

 Mayo Clinic says this about mixing Amitriptyline Alphapharm with Aspirin.

Using this medicine with any of the following medicines is usually not recommended, but may be required in some cases. If both medicines are prescribed together, your doctor may change the dose or how often you use one or both of the medicines.

·         Aspirin

****

The website ehealthme lists the following “Common Amitriptyline hydrochloride and Aspirin interactions:

·         Abdominal cramps: 13 reports

·         Abdominal discomfort: 10 reports

·         Abdominal pain: 13 reports

·         Abnormal behavior: 6 reports

·         Abnormal behaviour: 6 reports

·         Abnormal heart rhythms: 13 reports

·         Abscess (pus): 4 reports

·         Acute myocardial infarction (acute heart attack): 4 reports

·         Adverse event: 4 reports

·         A[trial] fib[rillation] (most common type of arrhythmia): 15 reports

·         Agitation (state of anxiety or nervous excitement): 21 reports

·         Agrypnia: 17 reports”

When admitted to the hospital, I brought with me a typed copy of my medications which I also took to A & E.  I had ensured that my medications list was accurate and on admission I provided a copy of the medications list to staff in my hospital ward.  I saw the list in my file when nursing staff checked my condition.

For me, Amitriptyline Alphapharm taken with Aspirin raised the possibility of “Abdominal cramps” and “Abdominal discomfort” – a worsening of the very symptoms I was already suffering.

As well as stomach bloating and vile stomach pain, one of my major symptoms was an inability to get proper sleep.  One side effects of Amitriptyline Alphapharm in conjunction with Aspirin is sleep deprivation.

****

 Amitriptyline Alphapharm in conjunction with Aspirin is associated with “Abnormal heart rhythm”, “acute heart attack” and “Atrial fibrillation (irregular heart beat)” in patients without heart disease.

I had undergone open heart surgery.

Amitriptyline Alphapharm in combination with Aspirin can cause a side effect called “Agrypnia”.  This is from the “Abstract” of an article in the website Public Medicine about Agrypnia .

Abstract

Agrypnia (from the Greek: to chase sleep) excitata (AE) is a syndrome characterized by loss of sleep and permanent motor and autonomic hyperactivation (excitata). Disruption of the sleep-wake rhythm consists in the disappearance of spindle-delta activities, and the persistence of stage 1 non-rapid eye movement (NREM) sleep. Rapid eye movement (REM) sleep persists but fails to stabilize, appearing in short recurrent episodes, isolated, or mixed with stage 1 NREM sleep. Diurnal and nocturnal motor, autonomic and hormonal overactivity is the second hallmark of AE.

****

Apart from all these known dangers, there was a more important reason why Dr Kannusamy should never have prescribed Amitriptyline Alphapharm for me.  

Mayo Clinic gives this warning about the danger of Amitriptyline Alphapharm for patients with heart disease.

The presence of other medical problems may affect the use of this medicine. Make sure you tell your doctor if you have any other medical problems, especially:

·         Heart disease;

 Heart disease patients should not be prescribed Amitriptyline Alphapharm without very sound medical reasons.  I had told hospital staff about my November 2018 open heart surgery.  This was explicitly stated in my medical history and symptoms summary.  My open heart surgery file was physically available because my surgery was performed in a “sister hospital” run by the same hospital group.

Amitriptyline Alphapharm given to patients with heart disease can cause sudden, unexpected death.

This is extracted from The Lancet, the Journal of the British Medical Association.

A hospital-based drug information system has been used to investigate a suspicion linking unexpected death with the administration of the tricyclic antidepressant, amitriptyline, in patients with a diagnosis of cardiac disease. 6 out of 53 patients with cardiac disease who were identified by the system died suddenly and unexpectedly after administration of the drug, compared with none of 53 control patients matched for sex, age, diagnosis, and length of stay in hospital. This high frequency of unexpected death was not found in patients receiving imipramine, nor in patients without cardiac disease receiving amitriptyline. Amitriptyline should be used with caution in patients with cardiac disease.

****

There was yet another compelling reason why I should not have been given Amitriptyline Alphapharm.

It is an addictive medication.  

I was not told I might become addicted if I took Amitriptyline Alphapharm.  I should have been warned about possible addiction.

in my case, Dr Kannusamy was very incompetent and caused harm.

Monday, January 6, 2025

 


139 – Circling the Drain, Part 6: 6 January 2025


Like the two birds in this photo, by May 2021 Margaret and I had entered very choppy waters indeed and the chances of us achieving smooth landing looked vanishingly small.  I took this photo in Queen Charlotte Sound, New Zealand South Island on 31 December 2019.  Our short stay in New Zealand heralded the beginning of years of suffering for both of us.  It was the last enjoyable holiday we ever had.

****

The resumption of my circling of the Death Drain happened without warning.

On Thursday 3 June 2021 I started and finished the day with zero symptoms.  I ate all of the usual regular meals and I did one hour of walking exercise and 30 minutes of yoga.  Seemingly, I had fully recovered from the illness that had put me in hospital for the first week of May.

In the morning of Friday 4 June, I had breakfast without incident.

After breakfast on that Friday, my symptoms abruptly reappeared – stomach bloat, severe abdominal pain, inability to breathe properly, plus an optical migraine.  My symptoms came so suddenly and so severely that Margaret took me to A & E that same day.  In A & E, I was treated as a possible Covid patient until the Covid test returned a negative result.  There were no beds available in the hospital where I went to A & E and at about 7:00 pm I was sent to the same hospital where I had spent a week in May.  The was no ambulance available to take me there, so Margaret asked Cheryl Scopazzi to drive us there.  It was dark, cold and miserable when I was finally admitted.

Because I had been admitted through A & E, during this hospitalisation I was not under the supervision of Dr Aiyappan.  This had some unfortunate consequences for me.  Dr Kannusamy was a very pleasant man but he lacked the skills of Dr Aiyappan.  I will relate some of those unfortunate consequences in the next Blog.

My symptoms eventually eased slightly during my second spell in hospital, but they were always present.  For most of my hospital stay, I suffered severely from bloating, stomach pain and an inability to breathe.  On Saturday 5 June, the day after my admission, the pain was severe and I was unable to get any sleep.  Once again, Margaret did not recognise me as I shuffled through the passageway until I greeted her.  Margaret said I had aged so much she did not realise who I was.

Dr Kannusamy did not tell me this, but he clearly assumed my symptoms were the result of depression caused by Margaret’s terminal cancer diagnosis.  He conducted no tests to establish if I was suffering from depression and he carried out no substantial work to investigate the presence of any underlying physical illness.  Dr Kannusamy's misdiagnosis of depression meant this.

·         My underlying physical disease was not investigated and diagnosed while I was in hospital.

·         I continued to suffer severely from my symptoms while I was in hospital.

·         After discharge from hospital, I suffered an increase in my symptoms for a period of three weeks until I was again readmitted to hospital.

·         After my third hospital admission, I spent another two weeks in hospital before my underlying disease was diagnosed and my symptoms were brought under control.

Initially, Dr Kannusamy was once again in charge of my treatment during my third hospital admission.  Luckily for me, he stepped down from this role and Dr Aiyappan diagnosed what was wrong with me and prescribed medication which has kept me alive and symptom free since I left hospital in July 2021.

****

Dr Kannusamy did organise a cat scan of my abdomen and pelvis on 7 June.  The written report from the cat scan set out this conclusion.

CONCLUSION: The most significant finding is the diffuse thickening of the bladder wall and reactive changes in the adjacent fat.  Appearances could relate to cystitis, due to UTI, or cystitis from other causes, such as radiation.

Abnormal thickening of the distal oesophagus, recommend correlation with the endoscopy findings, uncomplicated colonic diverticulosis.  Mitral valve repair with small bilateral pleural effusions,

I had not been troubled by cystitis before the cat scan and I have not been troubled by it since the cat scan.

My underlying condition had no connection with cystitis and I have never had any treatment for cystitis.

****

My small weight gain from May was reversed in June 2021.  This Table summarises my weight in June.

 

June 2021

 

Date

Weight

Friday 4 June

77.9 kilograms

Saturday 12 June

76.5 kilograms

Tuesday 15 June

75.2 kilograms

Friday 18 June

75.5 kilograms

Friday 25 June

74.9 kilograms

 .

****

Almost immediately after I was discharged in the morning of Friday 11 June 2021, my full range of symptoms returned.  They were continuously present for the next three weeks, resulting in yet another period of hospitalisation. 

The three days immediately after my discharge were extremely difficult.  I suffered continuously through the nights of Friday 11, Saturday 12, Sunday 13 and Monday 14 June. 

Monday 14 June was a public holiday and by 7:00 pm that day, I was in such agony Margaret phoned an after hours GP service.  The after hours GP eventually arrived at about 3:30 am on Tuesday 15 June.  By then my pain level had decreased from extremely high to high.  The GP prescribed Mebeverine Hydrochloride to relieve spasming in my bowel.  I obtained the Mebeverine later that day and took it exactly as prescribed.  It had no noticeable impact on my symptoms.  The after hours GP was extremely competent and pleasant, but he too was unable to diagnose what was wrong with me. 

 


Sunday, January 5, 2025

 

138 – Circling the Drain, Part 5: 5 January 2025


I took this photo of a group of kangaroos at Morialta on Wednesday 18 August 2021.  My final period of hospitalisation had started on Saturday 3 July and it ended when I went home in the morning of Thursday 15 July 2021.  I had been home for exactly five weeks when I took this photo while walking at Morialta.

****


As well as the kangaroo photo, I also took this photo of First Falls on that Wednesday in August.  In winter, the Falls carry a great deal of water.  In our South Australian summer, First Falls is usually water free.  A trickle of water was flowing down First Falls this morning (5 January 2021).  It is unusual to see any water flowing down First Falls in January.

****



My friend Mario used to love seeing the image of The Madonna at First Falls.  I took this image of The Madonna on Wednesday 18 August 2021.  Can you see her in the middle of the flowing water?

****

My symptoms were extremely severe for the first five days of my first hospital stay.  I doubt I would have lived if I had been anywhere except the hospital. 

As indicated in Blog 137, my grimmest day in hospital was Tuesday 4 May.  My memories of that evening are still very painful. 

By 11:00 pm on that Tuesday, my breathing difficulties were particularly acute.  I was also in extreme pain from stomach bloat.  To try and calm my body, I began slow, methodical “Perimeter Prowling” of my small hospital room.  While I was “Perimeter Prowling”, the night duty nurse knocked on my door and entered.  Seeing my distress, she immediately inserted tubes in my nostrils and placed me on oxygen.  Approximately every four hours during the night, she made me sit up and use an “aerator” mask over my nose and mouth.  The aerator was loaded with medications to open my airways.  The nurse told me she had come into the room because she thought something might be wrong with me. 

I was in extreme pain from the stomach bloat and I asked for stronger pain relief than Panadol, but the night duty doctor refused to authorise any additional pain relief.  The duty doctor did not bother to come and see me.  The nurse then gave me intravenous Panadol – liquid Panadol given directly into an arm vein.  Perhaps the intravenous Panadol worked.  Perhaps I simply got used to the pain.

I had an extremely hard night.

When Margaret visited me in the morning of Wednesday 5 May, I was walking in the passageway leading to the lifts.  She said she saw a very old looking man but did not recognise the old man was her husband until she was much closer.

I think the universe originally intended me to die that night, but changed its mind when I refused to co-operate.

Sometimes the only answer to impending death is a grim, mindless refusal to die.

I refused to leave Margaret and force her to battle the cancer on her own.  I have no other explanation for my own survival.

****

After that dreadful Tuesday, my symptoms began to abate because of a medication called Prednisolone.  The Prednisolone completely eliminated all of my symptoms.

Johns Hopkins Vasculitis Center says this about Prednisolone.

Prednisone is a corticosteroid. In contrast to anabolic steroids (used by “bodybuilders”), corticosteroids are used in inflammatory conditions for their anti–inflammatory effects. They have a rapid onset of action, and profoundly affect many parts of the immune system as well as most other body systems. Corticosteroids are a cornerstone of treating most types of vasculitis, and are often used in combination with other immunosuppressive medications. Prednisone is often used at high doses at the time of initial diagnosis to bring vasculitis under control, and then reduced over time (“tapered”) while another immunosuppressive drug is started for long term treatment.

The Mayo Clinic provides this information about “Vasculitis”.

Vasculitis involves inflammation of the blood vessels. The inflammation can cause the walls of the blood vessels to thicken, which reduces the width of the passageway through the vessel. If blood flow is restricted, it can result in organ and tissue damage.

There are many types of vasculitis, and most of them are rare. Vasculitis might affect just one organ, or several. The condition can be short term or long lasting.

Vasculitis can affect anyone, though some types are more common among certain age groups. Depending on the type you have, you may improve without treatment. Most types require medications to control the inflammation and prevent flare-ups.

****

My treating doctors believed my health issues were the result of the malfunctioning of my immune system.  Prednisolone was prescribed to alleviate my symptoms – and the symptoms disappeared.  After 4 May 2021, I became free for the first time in nine months.  I was discharged from hospital on Friday 7 May, after I had been symptom free for two complete days.  As the Johns Hopkins extract makes clear, Prednisolone is a powerful medication and doctors are very careful in its administration.  Prednisolone can cause side effects and once Prednisolone has served its medical purpose, doctors terminate its use as quickly as possible.  After my hospital discharge, I followed the detailed instructions on “tapering down” my use of Prednisolone.  Three weeks after my discharge, my use of Prednisolone had finished.

****

Once I had been symptom free for two weeks after my hospital discharge, there were no symptoms to put in the diary, so I stopped making diary entries about my “allergy” symptoms.  I made my final diary entry about my symptoms on Tuesday 18 May.

During this period, I was able to complete all of my scheduled exercise and I was able to eat all main meals.

As my life returned to normal, I resumed work on the Postcard Book and I regained some weight.  This Table shows my weight during May 2021.

Date

Weight

Saturday 8 May

75.4 kilograms

Friday 14 May

76.5 kilograms

Friday 21 May

75.6 kilograms

Friday 28 May

76.5 kilograms

****

I should have maintained my diary entries for my symptoms.

My circling of the Death Drain still had many weeks to run.  The Angel of Death had not been banished at all.  It had merely retired to regroup so it could be far more effective in taking me down.

Saturday, January 4, 2025

 

137 – Circling the Drain, Part 4: 4 January 2025

Margaret often talked about her beautiful patient Sara.  Sara’s life was cut far too short by cancer.  I found this newspaper cutting amongst a handful of Margaret’s things just before I wrote this Blog.  Margaret has written “80s” on the right hand side at the top of the cutting.

Sara and Margaret both look so beautiful.

****



This is another photo of me (far right) taken at First Falls Morialta on Sunday 17 July 2022.  The rain in the Park that day was very heavy and I got soaked.  By then, although I felt it was unlikely I would die in the near future, Margaret’s life was once again about to be threatened by her cancer.

****

In May 2021, my life hung by a slender thread.  I was admitted to hospital on Friday 30 April 2-21.  I felt ghastly in the morning that day and I rang Dr Aiyapan’s rooms seeking urgent help.  I knew I was going down and it was unlikely I would ever be able to get back up.

Dr Aiyappan arranged for me to be urgently admitted to hospital.

That first period of hospitalisation lasted from Friday 30 April to the morning of Friday 7 May 2021.

****

I updated my diary of symptoms very shortly after I got home on 7 May.  This is my diary of symptoms for Saturday 1 May to Tuesday 4 May 2021

Symptom

Saturday 1 May 2021

Sunday 2 May 2021

Monday 3 May 2021

Tuesday 4 May 2021

Asthma

Asthma controlled by medication while in hospital

Asthma controlled by medication while in hospital

Increasingly severe asthma attack from 7:30 pm onwards; required additional medication to control the asthma; attack continued until about 9:00 am Tuesday 4 May 2021

Continuation of asthma attack from previous night until about 9:00 am; eventually controlled by medication;

Further asthma attack at 8:25 pm – not quite as severe as previous evening and controlled by medication before midnight; put on oxygen all night to help with breathing

Persistent Cough

Coughing controlled by medication while in hospital

Coughing controlled by medication while in hospital

Severe coughing attack from 7:30 pm onwards; required additional medication to control the coughing; attack continued until about 9:00 am Tuesday 4 May 2021

Continuation of coughing attack from previous night until about 9:00 am; eventually controlled by medication;

 

Reflux

No change

No change

No change

No change

Sinus/ Hay Fever

Sneeze attacks and nasal discharge controlled by medication while in hospital

Sneeze attacks and nasal discharge controlled by medication while in hospital

Severe sneezing attack with severe nasal discharge from 7:30 pm onwards; required additional medication to control the sneezing and discharge attack continued until about 9:00 am Tuesday 4 May 2021

Sneezing and nasal discharge from about 8:25 pm – not as severe as previous evening

Sleep Disorders

Slept in hospital after given sleeping pill

Slept in hospital after given sleeping pill

Terrible night’s sleep even though administered sleeping medication

Sleep possible only because of sleeping medication, extra cough medication and supply of oxygen to help breathing

Gluten Intolerance

Avoided food with gluten

Avoided food with gluten

Ate 2 biscuits with wheat – bad results as detailed

Avoided food with gluten

Lots of Bloating and Flatulence

Bloating controlled by medication while in hospital

Bloating controlled by medication while in hospital

Severe bloating from 7:30 pm onwards; not controlled by medication; bloating continued until about 9:00 am Tuesday 4 May 2021

Continuation of bloating from previous night until about 9:00 am; eventually went away.

Bloating returned at about 8:25 pm but not as severe as previous evening; gone by 7:30 am on Wednesday 5 May 2021

Hiccups

Hiccups controlled by medication while in hospital

Hiccups controlled by medication while in hospital

Severe hiccupping all night

 

Hiccups controlled by medication while in hospital

Optical Migraines

Nil

Nil

Nil

Optical migraine at 8:30 am

Loss of Sense of Smell

Unable to smell since mid December 2020

Unable to smell since mid December 2020

Unable to smell since mid December 2020

Unable to smell since mid December 2020

Miscellaneous

(1) Able to eat while in hospital

(2) Airways closing down whenever I speak to anyone

(1) Able to eat while in hospital

(2) Airways closing down whenever I speak to anyone

(3) Very hard night

(1) Able to eat while in hospital

(2) Airways closing down whenever I speak to anyone

(3) Very hard night

 

(1) Unable to eat breakfast while in hospital

(2) Airways closing down whenever I speak to anyone

(3) Hard night but not as bad as Monday night

 

****

My circling of the Death Drain nearly became terminal nearly unstoppable on Tuesday 4 May.  I remember I was in my room when my airways began to completely close down at about 11.30 pm.  I began Perimeter Prowling around the inside of my tiny hospital room.  I did not press the nurse call bell.  My actions were automatic.  My breathing was about to stop so I immediately started the strategies I used when this happened at home.  

I was in a hospital and I did not have the sense to press the nurse call bell.

I was walking circuit number three when the night duty nurse knocked and entered the room.  She felt something was wrong, so she entered to check on me.

I cannot even remember the name of this wonderful nurse who saved my life that night.

She immediately placed me on oxygen to help me with the breathing and tried to get approval from the doctor on duty to give me stronger pain relief than Panadol.  Without examining me or coming to see me at all, the doctor refused to allow anything other than Panadol.  My hero nurse then gave me up intravenous Panadol.  I was in extreme agony, but eventually the intravenous Panadol dulled the pain.

I survived that night because of the compassion and skill of someone I had never met before, someone I have never met since.

Thank you to every one of the multitude of carers who remain unknown but without whom our community would collapse.






Blog No. 185 - Dealing With HCF in July 2022, Part 2: 24 February 2025

Part 2 of my 8 July 2022 letter to Mark Johnson, Chairman of HCF. ****  Margaret on the 17th of  March 2015 in Tasmania. ***** Another photo...