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/

The Liver….


 The liver works with the endocrine system to regulate nutrients in the body and remove toxins. An enlarged liver means that it is endangered due to disease or other factors, which can lead to toxic shock. The proper medical term for an enlarged liver is hepatomegaly.

A healthy liver helps fight infections and filters toxins from the blood. It also helps to digest food, store nutrients for future needs, manufactures protein, bile and blood-clotting factors and metabolizes medications. A healthy liver has the ability to grow back, or regenerate, when it is damaged. Anything that prevents the liver from performing these functions – or from growing back after injury – can severely impact health and very possibly length of life.

What Are the Symptoms of Liver Failure?

The initial symptoms of liver failure are often ones that can be due to any number or conditions. Because of this, liver failure may be initially difficult to diagnose. Early symptoms include:

  • Nausea
  • Loss of appetite
  • Fatigue
  • Diarrhea

However, as liver failure progresses, the symptoms become more serious, requiring urgent care. These symptoms include:

  • Jaundice
  • Bleeding easily
  • Swollen abdomen
  • Mental disorientation or confusion (known as hepatic encephalopathy)
  • Sleepiness
  • Coma

http://www.webmd.com/digestive-disorders/digestive-diseases-liver-failure

Causes

Fatty or enlarged livers are caused by infections, certain medications, general toxicity, hepatitis, autoimmune disorders, metabolic syndrome and genetic disorders that affect the liver. Abnormal growths, such as cysts or tumors, impact liver size. Blood-flow symptoms, such as heart failure, can cause liver enlargement. Conditions also exist that restrict blood to the liver veins, such as hepatic vein thrombosis.

An enlarged liver indicates a problem with the liver itself or your overall endocrine system. If you suspect that you have any of these symptoms, you should seek medical attention. The causes of an enlarged liver vary in their severity and complexity. Only a medical professional can make the proper diagnosis for the cause of an enlarged liver.

Read more: http://www.webdiagnosis.com/causes-of-an-enlarged-liver#ixzz2CzDrLFH2

If not addressed and stopped in the earlier stages, the damage resulting from these multiple causes leads to scarring of the liver, known as cirrhosis, where large portions of the organ begin to lose their capacity to function or regenerate.

Treatment of patients with liver failure is specific to the unique symptoms and conditions experienced by each individual. Any patient with liver damage will be asked to abstain from alcohol. For patients with cirrhosis and end-stage liver disease, medications may be required to control the amount of protein absorbed in the diet. If there has been a build-up of toxins, particularly high ammonia levels, medication will be offered which lowers these levels. Low sodium diet and water pills (diuretics) may be required to minimize water retention. In those with large amounts of ascites fluid, the excess fluid may have to be occasionally removed with a needle and syringe (paracentesis). Using local anesthetic, a needle is inserted through the abdominal wall and the fluid withdrawn. Sometimes surgery is performed to minimize portal hypertension and lower the risk of gastroesophageal bleeding.

At this point, a person may become a candidate for liver transplant of part or all of the liver. Transplant success has improved in recent years with 1-year patient survival rates of up to 87%.  Due to the severe organ shortages, patients who are listed for liver transplantation have an estimated wait time of 1 to 3 years, depending on blood type and illness severity. Many patients are never able to be considered for transplants due to severity of their disease, other medical problems, or social considerations such as ongoing alcohol use or non-compliance with treatment recommendations. Others die while waiting for a transplant as their disease continues to progress.

The impact of these various symptoms and conditions on suffering and quality of life are profound, and ESLD patients can benefit greatly from hospice and palliative care. Even, when an ESLD patient is on a transplant list, this does not automatically prevent them from being on hospice services.

According to Medicare/Hospice  guidelines, patients will be considered to be in the terminal stage of liver disease (life expectancy of six months or less) and eligible for hospice care, if they meet the following criteria (1 and 2 must be present; factors from 3 will lend supporting documentation):

1. The patient should show both a and b:
a. Prothrombin time prolonged more than 5 seconds over control, or International Normalized Ratio (INR)> 1.5
b. Serum albumin <2.5 gm/d1

2. End stage liver disease is present and the patient shows at least one of the following:
a. ascites, refractory to treatment or patient non-compliant
b. spontaneous bacterial peritonitis
c. hepatorenal syndrome (elevated creatinine and BUN with oliguria (<400ml/day) and urine sodium concentration <10 mEq/l)
d. hepatic encephalopathy, refractory to treatment, or patient non-complaint
e. recurrent variceal bleeding, despite intensive therapy

3. Documentation of the following factors will support eligibility for hospice care:
a. progressive malnutrition
b. muscle wasting with reduced strength and endurance
c. continued active alcoholism (> 80 gm ethanol/day)
d. hepatocellular carcinoma
e. HBsAg (Hepatitis B) positivity
f. hepatitis C refractory to interferon treatment

http://www.hospiceofthecomforter.org/en/post/medical-perspective/understanding-endstage-liver-disease

 

What gives life will hasten death


Courtesy of: http://www.flickr.com/photos/violetteultracore/7442358584/lightbox/

 

I am so tired.  I think it is emotional more than physical.

Vic went to the movies with her friend Tracey today.  As she wanted to leave, Hospice arrived.  Sr Siza was VERY dubious whether she should go…  Anyway the boys went with to make sure she was okay.  They are so protective of her.

When Tracey dropped her at home she was so tired she could not lift her feet.  She immediately got into bed and I know it will take days for her to recover.  I am grateful that she enjoyed the movie.  I cannot believe my child went and saw The Twilight Saga Breaking Dawn Part 2!!  She is the most anti-vampire person I know!

She said “Oh Mommy, the one part was scary but it was so much fun!”

I have read up on the effects of continued morphine administration when someone is in Renal and Liver Failure.  We have no option but to continue the pain medication regime… It will help her live and yet it will certainly contribute even hasten her death.

I don’t care.  I want Vic to be as pain-free as possible.  It is becoming increasingly difficult to do so.  She is literally on a “morphine on demand” regime.  She cannot overdose – she is too used to Morphine.  The dosages have been titrated over many years…

It will be a difficult night.