Category Archives: ABOUT ME

ME IN 2014

7th December 2015

Dr Kelly Hamill

North Bellingen Medical Centre

58 Wheatley Street

Bellingen NSW 2454

Dear Dr Hamill,


MRN: 130 02 61

DOB: 19/10/1949


  1. Chronic liver disease secondary to chronic hepatitis C (CHC) and previous excessive alcohol consumption.  Child Pugh score A5, previous episode of decreased level of consciousness and peripheral oedema, chronic hypoalbuminaemia 26 g/L, mild elevation bilirubin 22 umol/L.  INR 1.4, platelets 48 x 109/L (chronic suppression), normal bone marrow biopsy previously.  Dr John Gibson, RPAH.  Ongoing moderate hepatitis ALT 56 U/L.

1.1            Chronic hepatitis C (CHC) genotype 1A, viral load 5.6 log IU/mL likely contracted through intravenous drug use in 1972, treated in 1997, no ongoing injecting drug use or Opioid substitution therapy.

1.2            Previous excessive alcohol use until 9/1997 now resolved.  No ongoing alcohol use.

1.3            Hepatitis B core antibody positive, hepatitis B surface antigen negative.  Hepatitis B surface antibody 54 IU/ml consistent with previous exposure with ongoing immunocompetency.

1.4            Hepatocellular carcinoma screening, November 2015; cirrhotic liver with splenomegaly, no liver lesions., organs otherwise unremarkable.  November 2015 alpha-fetoprotein 13 ug/L.

1.5            No previous bone mineral density.

1.6            No previous dietician reviewed albumin 26 g/L for nocturnal protein supplementation.

  1. Previous cardiomegaly with no specific diagnosis.  Echocardiography November 2015 normal LV size and systolic function, mild to moderate dilatation of left atrium, mild pulmonary hypertension, ejection fraction 64%.
  2. Morbid obesity.  Weight 100 kg.  Height 152 cm.  BMI is 42.8.  No previous dietetic intervention.

MEDICATIONS: Frusemide 20 mg daily, Spironolactone 50 mg daily and Salbutamol prn ALLERGIES: No known.

Thank you for referring Lynne to clinic regarding her chronic liver disease secondary to chronic hepatitis C (CHC) and resolved alcohol excess. She is a 66-year-old woman living independently in Urunga with significant history of bereavement and health crisis during 2014, which nearly resulted in death.  Since that time she has improved significantly and been able to resume home life independently. She has not previously had specialist liver review.  She is known of CHC for many years and nominates intravenous drug use from 1972 onwards as the likely source of infection.  During the period 1972 through 1987 she consumed alcohol and used intravenous drugs and was able to control substance abuse initially with IV substitution therapy and eventually through Narcotics Anonymous to avoid all ongoing issues with drug and alcohol since that time.  She has not previously had therapy for CHC. 

Lynne’s health issues in 2014 were described as decompensation of her cirrhosis in the setting of severe pneumonia which resulted in loss of consciousness and ICU care for several weeks and involved significant fluid overload. Since that time, her fluid overload has mostly resolved and she has no ongoing features of encephalopathy that previously troubled her.  Her other health issues relate to dyspnoea and morbid obesity; I believe these to be linked.  She is morbidly obese with BMI of 42.8 and has significant difficulty moving with this weight.  She has not undertaken exercise or diet programs and has no previous referral for bariatric surgery. She was previously described as having cardiomyopathy with dilatation of the cardiac changes, however her most recent echo does not demonstrate features of cardiomegaly and has normal left ventricular size and systolic function. Her echo shows mild pulmonary hypertension which may contribute to breathlessness, however I feel that her muscle bulk is likely to be quite modest in her body which is requiring significant exertion and I believe her breathlessness relates to both her liver disease and her obesity rather than cardiac or respiratory function.  She is not previously known to have ischaemic heart disease.

On examination, Lynne is obese with a soft abdomen and no evidence of ascites. She has splenomegaly and otherwise unremarkable abdomen with minimal tenderness. She has very mild peripheral oedema and few other stigmata of chronic liver disease. Her respiratory examination is unremarkable without crepitation at the bases. She had dual heart sounds which were faint. She had no signs of encephalopathy. Blood testing from November 2015 shows moderate elevation in ALT 56 U/L with other enzymes elevated, deranged liver synthetic function with albumin 25 g/L, bilirubin 22 umol/L, INR 1.4. She had profound thrombocytopenia 39 x 109/L with normal haemoglobin and normal iron studies. She has recent testing for HCV infection with genotype IA, viral load 5.6 log IU/mL and evidence of previous exposure to chronic hepatitis B with HBc antibody positive in the absence of other markers of ongoing infection. Ultrasound of the abdomen performed in November 2015 shows a cirrhotic liver with no evidence of hepatic lesions, splenomegaly and no note of ascites present. Her alpha-fetoprotein was marginally elevated consistent with her level of elevation in ALT. She has not previously had gastroscopy and has never had upper GI haemorrhage.

Lynne is reluctant to have antiviral therapy for her CHC and is unsure where she would like to be treated should this became available. The standard of care in 2016 for genotype IA infection would be three months of oral antiviral therapy using either Viekira Pak or Harvoni both of which are due to became available through the PBS over the coming months.  Liverpool Hospital treatment team consist mainly of nursing and medical staff with significant experience that are dealing with advanced liver disease and this would be an appropriate environment for Lynne.  This is a long way from home and presents significant logistics complications.  I am happy to work with local services in Coffs Harbour or in the Bega area where her son lives should treating physician be available.  In the meantime, I have asked her to alter her diet to involve high protein supplementation nocturnally (for instance, Sustagen in milk prior to sleep), a low salt diet low in other carbohydrates to try to reduce her weight.  I will seek advice on diet solution for Lynne by involving the dietician from the Royal Prince Alfred Liver Unit who has specific skills in this area. Certainly, salt free diet will benefit her with respect to fluid overload and to this end I have introduced Spironolactone 50 mg daily to assist in loss of fluid.  I would recommend water based exercise such as walking around the shallow swimming pool to assist with weight loss. I think that prophylactic banding of varices should they be present would be ideal.  However organising gastroscopy may be complex and I have not addressed this as yet. Lynne needs bone mineral density study and should have vitamin D supplementation with or without osteoporosis care if indicated. I frequently use Zoledronic acid annually and for osteoporosis care. I think that Lynne has intermediate prognosis from her cirrhosis and may benefit from control of her viral infection, however with the current profile of obesity she may struggle to overcome her significant health issues. She requires ultrasound of the abdomen every six months to assess for new lesions related to hepatocellular carcinoma and six monthly alpha-fetoprotein as a standard of care. I will be happy to see her on ongoing basis and/or provide support to treating physician who may review her regularly.

Yours sincerely,

Dr Scott Davison

Staff Specialist, Gastroenterology and Hepatology

Liverpool Hospital

cc              Clinical Information, Liverpool Hospital

cc              Gastro file



So, you’ve survived SEPSIS! Congratulations!! No, seriously.CONGRATULATIONS! You are one of the few who has left the hospital as a living person. This is a good thing. Now what?

Well if you thought “sepsis” was gloomy and spoken of only in hushed tones; wait until you read about “post sepsis syndrome”. This will knock your socks off.

According to the Sepsis Alliance here are a few basics on post sepsis syndrome;

Post-sepsis syndrome is a condition that affects up to 50% of sepsis survivors. They are left with physical and/or psychological long-term effects, such as:

  • Insomnia, difficulty getting to sleep or staying asleep
  • Nightmares, vivid hallucinations and panic attacks
  • Disabling muscle and joint pains
  • Extreme fatigue
  • Poor concentration
  • Decreased mental (cognitive) functioning
  • Loss of self-esteem and self-belief

Here’s the rest of my story.

As I was wheeled out of the hospital’s front doors I was immediately overwhelmed by the outside world. I know it may not seem understandable, but as I looked around and saw everyone going about their lives and felt the warm spring wind and sunlight on my face, I felt very “small and insignificant”. Everything I’d been through, all the complications, surgeries, fevers, pain and suffering seemed so pointless, and I began to cry. The attendant and my husband were frightened by my crying. They asked questions trying to understand. I couldn’t explain. I mumbled and spoke in words that were more confusing than my tears. It was surreal. I couldn’t understand myself, so how was I to explain it to others? I waved them off in a reassuring manner.

On the 110-mile drive home, I seemed to settle into “this is my new normal” and questioned each movement, thought and more. By the time I walked through the door, my complicated and confused thinking and feeling was overwhelming. I was frightened in my own home. At one point, I came close to turning around and wanting to return to the hospital. In a sense, the hospital felt safer than home. Spring was in full bloom. I could hear our cow in the fields. It was my home. It was normal, I was the problem. It was me.

I could only walk about 6 feet with the help of my walker. I needed help getting out of bed, out of a chair. I settled into a newer routine of physical therapy three times per week. The PT was reassuring that my strength would improve. IV antibiotics were given at the end of my dialysis treatments at home. There were practice walks through the house to try and increase my strength; a chair to sit on for showering as I couldn’t stand that long on my own. My hair began to fall out; by the hands full daily. My pillowcase was covered in it when I awoke and the drain in the shower was clogged with my hair when I’d finished washing up. That was daunting for me.

Then came the night sweats, the nightmares (being eaten by giant cockroaches in ER or ICU) and waking in the darkness of night. It would always take me about a minute to recognize or realize where I was. I would reach across the bed to feel my husband and was always reassured when he would pull my arm close and tuck it under his arm. This was the comfort and assurance I needed. Often, I would awake thinking I was still in hospital. The near constant whining in my mind of how very weary I felt and how deeply my muscles, joints and bones hurt added to my mental fog. I couldn’t read books like I used to. I couldn’t seem to focus so I tried only short bursts of ten minutes here or there and increased when I could and stopped when I could go no further.

To my family I had seemingly endless questions of, “then what happened?” I felt like a failure and more. Although I had returned home, I was in worse condition than before, a broken person with a broken body as if I’d been a doll and shaken so hard I was a limply, sad shell of what used to be. I felt hungry—yet little appealed to me. There was still some nausea and vomiting even weeks later. I seemed to live on English muffins with butter and a side of cheese. It was mild and seemed to stay down. I’d lost weight, but not so much fat as muscle. I worked hard to walk our hall multiple times daily to regain what I could, and went back to work once to say hi to my co-workers and friends. I could see the shock in their faces of how badly I looked, and didn’t return again for months.. I saw it in my own face every time I looked in the mirror.

I grasped for certain words and if I wrote anything I always seemed to displace every few words or so. It was frustrating: it felt I couldn’t even think in the proper context of a thought. The routines continued, dialysis, walking, thinking and speaking with the right thoughts in the right place. I quit cooking nearly altogether. To this day, one leg is always weaker than the other and my balance is way off. Depending upon my pain on any given day, its likely I won’t walk further than 20-30 feet on my own. Since my first stay with sepsis I now have chronic low blood pressure and I mean low—often 60/30. No explanation, it’s just part of my daily life. I’ve tried the meds to no avail. My husband has taken over many of the chores of daily living, which often makes me feel a failure. Now, due to other issues, I hunch over unable to stand or sit straight for longer than a few minutes. I manage the budget, pay the bills, make the calls, appointments and volunteer wherever and whenever I can; it helps me stay sane. It helps me feel accepted, valued, needed. Isn’t that what we all want?

Finally, the worst is the constant, quiet, ever present state of fear. Every time I need dialysis done in a hospital or clinic I think “is this the day I get sepsis”? I wait for the fevers, the chills the vomiting. I count the hours and days until I’m sure it passed. I have panic attacks and often cancel appointments, fearful that if I touch this or that, shake someone’s hand it will quietly make its way inside. The untrusting part of me glares out to monitor those part of my healthcare team, ME wanting to safeguard ME. If I start to feel punky I worry “is this it, do I have sepsis again? Will I die this time”?

Eventually some of my strength returned, so I graduated to a cane. Lost memories, night sweats, insomnia, loss of self-esteem, lack of confidence, pain and poor concentration are now to be my life-long friends. You see, once you’ve had sepsis you’re at a higher risk of acquiring it again. I did. I have. Three years later found me in the hospital with sepsis, pneumonia and c-diff. Two years after that I ended up with sepsis twice, my fifth time two years after and again in two years my sixth episode with my most recent episode just nine months later. In all seven episodes of sepsis each requiring weeks in the hospital, with procedures, high fevers, weakness and worse. So, when someone looks at me and says, “you just don’t look like you’re doing well”, I just smile and think to myself “actually I’m doing pretty darn good, considering.”

I still suffer most if not all post sepsis syndrome (PSS) symptoms, some days more than others but they’re there waiting to let me know “Hey, you’re going to be okay, but in the meantime…” On the inside, I remind myself that this body of mine has served me well. I’ve overcome horrendous odds and survived. So, you see I don’t call myself a survivor; I am an “overcomer”.

The Sepsis Alliance also states that:

The risk of having PSS is higher among people who were admitted to an intensive care unit (ICU) and for those who have been in the hospital for extended periods of time. PSS can affect people of any age, but a study from the University of Michigan Health System, published in 2010 the medical journal JAMA, found that older severe sepsis survivors were at higher risk for long-term cognitive impairment and physical problems than others their age who were treated for other illnesses. Their problems ranged from not being able to walk—even though they could before they became ill—to not being able to do everyday activities, such as bathing, toileting, or preparing meals. Changes in mental status can range from no longer being able to perform complicated tasks to not being able to remember everyday things.

The authors wrote, “60 percent of hospitalizations for severe sepsis were associated with worsened cognitive and physical function among surviving older adults. The odds of acquiring moderate to severe cognitive impairment were 3.3 times higher following an episode of sepsis than for other hospitalizations.”

What causes PSS?

For some patients, the cause of PSS is obvious: blood clots and poor blood circulation while they were ill may have caused gangrene and the need for amputations of fingers, toes, or even limbs. Damage to the lungs can affect breathing. For example, in another University of Michigan Health System study, published in 2012 in the journal Shock, researchers found that sepsis survivors may be more vulnerable to developing viral respiratory (lung) infections.

Other organs may be damaged as well, such as the kidneys or liver.

These lasting physical issues can be explained, but there is more to PSS that cannot yet be explained, such as the disabling fatigue and chronic pain that many survivors experience. Others complain of seemingly unrelated problems, like hair loss that may occur weeks after their discharge from the hospital.

Many sepsis survivors also report symptoms of post-traumatic stress disorder (PTSD). Researchers have already recognized that ICU stays can trigger PTSD, which can last for years.

According to a 2013 Johns Hopkins study that looked at PTSD after ICU stays, people with a history of depression were twice as likely to develop PTSD after being in an ICU. The researchers also found that patients who had sepsis were more likely to develop PTSD. They wrote about the possible sepsis/PTSD connection: “The delirium often associated with ICU stays and post-ICU PTSD may be partially a consequence of inflammation caused by sepsis. This inflammation may lead to a breakdown in the blood-brain barrier, which alters the impact on the brain of narcotics, sedatives and other drugs prescribed in the ICU.

It is important to note that PSS does not happen only in older patients or in those who were already ill. An editorial published in JAMA in October 2010, addressed PSS. In “The Lingering Consequences of Sepsis,” the author wrote, “The new deficits were relatively more severe among patients who were in better health beforehand, possibly because there was less room for further deterioration among patients who already had poor physical or cognitive function prior to the sepsis episode.”

In other words, healthy people may be expected to rebound quickly from such a serious illness, but healthier people may actually have the opposite experience.

What can be done about PSS?

Post-sepsis syndrome must be recognized by the doctors and other healthcare professionals who care for sepsis survivors, so patients can be directed to the proper resources. Resources may include:

  • Referrals for emotional and psychological support (counseling, cognitive behavioral therapy or neuropsychiatric assessment).
  • Physical support, such as physical therapy or neurorehabilitation.

What is post-ICU syndrome and is it the same thing as PSS?

Post-ICU syndrome (PICS) is a recognized problem that can affect patients who have spent time in an intensive care unit or ICU, particularly if they have been sedated or placed on a ventilator. It is not unusual for someone in an ICU to become delirious – sometimes called ICU delirium. The longer a patient is in such a unit, the higher the risk of developing delirium or PICS. A study published in the New England Journal of Medicine found that some of these patients continued to have cognitive (mental) problems a year after discharge.

Here is what the CDC has to say about post-sepsis syndrome:

Click to access life-after-sepsis-fact-sheet.pdf

Do all you can to stay sepsis-free. If you do get sepsis and have post sepsis syndrome, keep yourself, friends and family aware and educated about the risks and how to get help once it’s past. Ask for helpyou deserve it. Be a survivor. Be a champion. Be a warrior. Be an overcomer. Be whatever you want—just keep living.

Tags: Making dialysis betterEducation issues: for patients and professionals


  • Ann Contreras

Oct 13, 3:59 PM

I just wanted to take a minute to thank you for sharing your heartfelt and emotional journey. 
There is SO much to CKD that us ‘Professionals’ and Partners don’t know until it’s shared as clearly and concisely as you have written. 
Again, a heartfelt thank you. 
See you on FB! 


  • Ali Wilson

Sep 27, 8:32 PM

You just described me. I had Septic Shock five years ago. Discharge from the hospital was surreal. Not being able to walk, could only stand for a minute or two, couldn’t get up the stairs to my own bed. 
I would stop in my tracks and think, “I could die right here, right now”. 
Only therapy and medication has given way to some resemblance of a normal life.


Today I took a walk and went visiting. Had a great time. Home made pizza and toys and bubbles.  I vomited at the table this time and couldn’t even get up to move away. 

We went for a drive for school pickup and I was going to tap dance but became  too ill. Miss 8 loves her tap dance.

I cooked steamed vegies tonight. My favourite meal and I have not had it for ages. Its rare that I can last an entire meal preparation but I did tonight and I feel well. 


Pretty much sums it up. 

I feel a little better and the car feels a little worse. 


DOROTHY DAY : “Writing is an act of community. It is a letter, it is comforting, consoling, helping, advising on our part, as well as asking it on yours. It is a part of our human association with each other. It is an expression of our love and concern for each other.”


A rainy cool day. Phone calls with Arkue and then a surprise visit from the Girls and  their aunt and cousin. Just lovely. Got some food into me.Little bit. Little bit. Facetimed with Eden and now bed with the rain still falling. 

I drive out to Amoonguna to tell family he is right  I sit down with his Aunty, round the campfire, in the night         I ask her to explain the pelicans and the meaning of the sign  She laughs and whispers, 

‘Arrangkwe just 2 pelicans in the sky!’


Poet’s Note: arrangkwe – (arrente word) means no, nothing, no-one

I live this strange small life of being almost entirely at home alone. Of eating almost no food at all. Of sleeping almost all of everyday. I am no longer at ease amongst other people – but I am deeply at ease within myself – most of the time. Of very little shopping or eating out. I graze from the vegies in the garden. 

Perhaps I am mixing a little piece of Nana in the Girls. One that they can each carry for the rest of their lives. Pieces of me passing into my Girl and my Boy. Perhaps I am dissolving. Shimmering as JB called it. And leaving them just some of the best of me. Perhaps one day they will use it. 

When I looked at Izzy lying in the dirt of the road, it seemed to me that his goodness and desire to be of good was simply more than his body could hold and it seemed to me that he had splintered into millions of shards of light and gone dancing off to all the people places and things that needed him.

As for me I do the opposite. I gradually fade away. Gradually shimmer to there is little left of Lynne in the world. I am now as fragile as the white hibiscus I loved at the Beachshack. Translucent.


Seeing Things

At dawn, when sunshine spills across the grass, 
my eye is drawn to fuzzy globes of light 
that float and flit on gauzy wings. They pass 
down low to skim the dandelions, their flight 
controlled, describing angles as they go 
criss-crossing rapidly without a pause 
which makes it hard to see them clearly, though 
here’s one that hovers near, defying laws 
of physics… Oh. It’s just a dragonfly. 
A pity, for I thought I’d seen the dance 
of sylvan sprites. Ah, Mother Nature’s sly: 
for where there’s prey there’ll always be a chance,
and here’s a tic-tac-toe of silver webs 
to catch the morning fairies by the legs. 

© Copyright 2002 Kathy Earsman



Well the spectacular exertion of yesterday left me in bed once more.Didn’t matter. Read the Lee Child book. Ate strawberries and tomatoes from the garden and a lettuce leaf.  My Eden people are on Facetime. Jaybee is carving and Poppy is doing something or other for her sister. Kathy is 19 today.

Jaybee recommended a book for me and I bought it on iBooks. Doesn’t appeal to me but he is my main source of new authors and he REALLY likes this one so I shall venture in.

Outside the weather is wet and a little wild. 

Inside is snug.



I am rather better today. I walked to the Girls’ and celebrated Miss 5 and her next orientation for school next year. I went with them on school pickup and I even went into the Prov. 

I have been on Facetime with Eden all evening. 

And now I am preparing for bed.



Another hand full of pills
Another time I’ve lost all will
Another yelp as I move
Another promise times will improve

Another scare as I lose my sight
Another battle to try and fight
Another series of painful tests
Another long well needed rest

Another day
Another deep breath
Another reminder of the love surrounding me
Another loving message from my family
Another blessing in disguise
Another friendship found for life


Each night I sit here, yearning for the words that would make some sense of what is happening to me but finding only scraps.

I dont know what is happening. Sometimes I think I am slowly dying. Slowly fading away. I am just SO ill and so weak and I have run out of any ideas about how to get help. 

So the days come and I cherish the hours – But I cant walk more than a few metres and I can’t play as I would like to do. At the moment I have head fuzz as well and am just so very sick.

Today, Miss 5 came for a picnic and we were so happy. We played in water and made potions and lotions and the enormity of the love still brings a couple of tear even hours later. I have a desire to call my boy. I dont know how long I can go on like this. 

I can play just a little. But I cant take her for a drive or go swimming. I want to go to Eden but I can’t face that trip. 

Most days and for the major part of every day, I am able to accept what I CAN DO and leave go of the rest – but today I am a little beaten and solemn. I vomit when I eat. I have pain in my side. My vision is blurred. And I keep thinking I am in a Farewelling. 

O God. My house is clean. I had a beautiful day. But I am so very sick.