Tag: Renal failure

Daddy don’t leave me…. 12.1.2013


A year ago I posted this.  Yesterday we had visitors.  We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta.  I sat looking at all the happy faces and remembered Vic clinging to Danie.  I remember the fear in her eyes.  Her desperation.  Her final Sunday.

Vic was desperately trying to finish the cards she had bought the boys.  She wanted to write the perfect words.  Words that would reach out to her boys from the grave.  I remember my fear and frustration.  Frustration that the cards had not been written and fear that it would not get done.  So much pressure in death…

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Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

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Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

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It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

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I hate my life.  I wish I were dead.

Daddy don’t leave me….


Tuesday brought an avalanche of visitors.  It was a very, very emotional day.  Vic was confused and seeing visions of angels and dead loved ones.

Vic’s friend Angela has been absolutely amazing.  She has sat through many hours of Vic’s tears and fears.  She has consoled and supported – at great personal expense.  I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her.  She has hugged and messaged.  She has been a pillar of strength.

Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers.  Vic’s room looked and smelled like a garden!  It looked absolutely beautiful and Vic was thrilled.

Image

Vic has refused to let go.  She is holding onto life with every fibre of her being.  She does not want visitors to leave and will try to get out of bed when they are here.

She cries and keeps asking “How do I say my final goodbyes?”

Esther visits every day.  She picks up the boys after school.  She is Vic’s guide.  “Go towards the light.  The light is good!” she keeps telling Vic.  Esther is a ray of sunshine and like the Rock of Gibraltar.  She is Vic’s sister in love.

Image

It is heart wrenching!

Vic clings to her dad and the boys.  She puts out her arms and says “Daddy don’t leave me…”  When she sees her boys she cries “Please give me a hug…”  and then “I love you more than life and then some more…”

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I hate my life.  I wish I were dead.

Tomorrow may be better than yesterday


Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485
Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating.  Last night the nausea was absolutely relentless.  With no food in her stomach Vic vomited blood.  Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night.  I cried and slept in her bed with her.

 

Today Sr Siza tried to put up an IV drip.  Vic has absolutely no veins left that are suitable for a drip.  The sub-cutaneous driver is back up.  At this stage of the game the risk of cellulitis is less than the need for pain and symptom control.  We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron.  “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.”  http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital.  Vic refused.

On the 1st of January 2013 Stepping Stone Hospice and Palliative Care started operating.  It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.

 

 

 

 

 

Mommy can you feel how sore it is?


Published with Vic’s permission and knowledge.

Hospice has just fitted a subcutaneous driver – again.   Vic’s pain has spiralled out of control over the past couple of days.

Vic was in absolute excruciating pain during the night.  She battled to breath.

“Help me Mommy!  I can’t stand the pain anymore…”

I lay next to her and put constant pressure on the area that hurt most.  It was just below her ribcage – liver.  “Oh Mommy, it is so sore.  Can you feel how sore it is?

As a little girl Vic used to believe that I could “feel” her pain…

“Feel how sore my toe is Mommy…”

As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease.  It cannot be so I look for a new spot on her bum to stick in a needle.

Vic seems calm now and the pain under control.  She is sleeping peacefully.  She has not vomited since this morning and managed to have a sandwich for lunch.

Please God let the subcutaneous driver work.  Please let the tissue hold up!   Please God!

“I shall continue the fight”


Vic when she was much healthier – 2011

Aarthi wrote Vic another beautiful poem.  Thank you Aarthi.  We needed your beautiful words to encourage and remind us today.  Vic is going through a particularly harrowing time.  She is suffering from severe nausea and the injections are no longer as efficient as before.  Poor little poppet!  She also broke another vertebra on Saturday when she put on her bra….

For the first time in Vic’s journey I am running scared of the amounts of pain medication her body needs.  This afternoon she was in excruciating pain – the pain was under the right-hand ribcage.  That is the liver.  Her eyes are slightly yellow and her skin a little sallow.

Over the weekend Vic walked into my TV lounge and I got such a fright when I saw her.  Her face was ghostly pale.  She actually looked like a geisha without the red lips and charcoal eyes.  Her eyes were dark from pain.

I had to phone Hospice this afternoon and ask them for more pain medication.  I am trying to work out what the effect of the increased medication will be to the toxicity levels in her body.  Hospice said we are at the 50/50 level.  The levels of medication can now be detrimental to her.  What do we do?

A calm courage waits in them
like a belief that breathes in her soul
those black pearls of mysterious power
glow like a beacon of hope
it is as if she is saying
i shall continue the fight
her will is deeper than she herself knows
that lustre speaks so much more
she is a gem as i can see
she is a warrior in her ways
that strength that originates in the depths of her
flows out and gives her eyes a brilliant grace…

https://tersiaburger.com/tag/httpsickocean-wordpress-comauthormysticparables/

http://sickocean.wordpress.com/category/poetry/

“Mommy, I have the hiccups again”


Photo courtesy of http://www.mindentimes.ca/2012/07/11/non-profit-facility-provides-vacations-for-dialysis-patients

 

Dr Sue has been.  The lung infection has cleared and Vic’s saturation is back up to 98%!  What a little trooper she is!

She is however in Stage 4 renal and liver failure.

Chronic Kidney Disease is diagnosed by the eGFR and other factors, and is divided into five stages:

Stage of Chronic Kidney Disease eGFR ml/min/1.73 m
Stage 1: the eGFR shows normal kidney function but you are already known to have some kidney damage or disease. For example, you may have some protein or blood in your urine, an abnormality of your kidney, kidney inflammation, etc. 90 or more
Stage 2: mildly reduced kidney function AND you are already known to have some kidney damage or disease. People with an eGFR of 60-89 without any known kidney damage or disease are not considered to have chronic kidney disease (CKD). 60 to 89
Stage 3: moderately reduced kidney function. (With or without a known kidney disease. For example, an elderly person with ageing kidneys may have reduced kidney function without a specific known kidney disease.) 45 to 59 (3A)
30 to 44 (3B)
Stage 4: severely reduced kidney function. (With or without known kidney disease.) 15 to 29
Stage 5: very severely reduced kidney function. This is sometimes called end-stage kidney failure or established renal failure. Less than 15

Only last week Vic complained to one of her siblings that she is battling with hiccups.  We laughed about it and reminded her of the old wives tale that if you steal you will get hiccups… We wanted to know what she had stolen… If any person in the world told me then that hiccups is a symptom of kidney failure I would of thought they were taking the Micky out of me!

Renal Failure Symptoms                                                                   http://www.mayoclinic.com/health/kidney-failure/DS00682/DSECTION=symptoms

Signs and symptoms of kidney failure develop slowly over time if kidney damage progresses slowly. Signs and symptoms of kidney failure may include:

Signs and symptoms of kidney failure are often nonspecific, meaning they can also be caused by other illnesses. In addition, because your kidneys are highly adaptable and able to compensate for lost function, signs and symptoms of kidney failure may not appear until irreversible damage has occurred.

 Chronic kidney failure can affect almost every part of your body. Potential complications may include:

 Treating the cause of kidney failure

Depending on the underlying cause, some types of chronic kidney failure can be treated. Often, though, chronic kidney failure has no cure. Treatment consists of measures to help control signs and symptoms of chronic kidney failure, reduce complications, and slow the progress of the disease. If your kidneys become severely damaged, you may need treatments for end-stage kidney disease.

Your doctor will work to slow or control the disease or condition that’s causing your kidney failure. Treatment options vary, depending on the cause. But kidney damage can continue to worsen even when an underlying condition, such as high blood pressure, has been controlled.

Treating complications of kidney failure Kidney failure complications can be controlled to make you more comfortable. Treatments may include:

CONCLUSION:  Vic’s kidney failure is irreversible.  There are no drugs to reverse the process.  The question can only be whether Vic will go onto dialysis….  The decision will be her’s to make.

 

 

 

 

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