Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
On the 17th of May 2012 I posted this. It was my first blog post ever. I was however something I had written ion the 27th of November 2003
How could I ever think that I want my child back? It is over. Vic is at peace and pain free. The pain has transferred to me…
My dearest child
My heart breaks when I look at you. Your eyes reflect your fear, acceptance of the inevitable, rebellion and pain. The morphine dulls your dark eyes…
It is so difficult seeing you in so much pain…the times when you are bent double from pain. My heart breaks when I see how you are still trying to care for your family. If only the boys knew how many tears it takes to make a sandwich…Many a time when you are sobbing from pain I see the boys pretending to sleep – as if shutting their eyes can block out your sobs… I see the helplessness in Colin’s eyes when he looks at you. It is soul destroying!!!
It is at times like this that I cry out “How much longer God? When will her suffering end?” But then I look at the Christmas tree and the Christmas lights and beg “Just one more Christmas please God!”
With the obstruction I fear that you will not make it. The morphine aggravates the situation! When will you develop another fistula? It is only a matter of time. How time do we have left?
I wish I could just hold you and protect you against the pain and death. If it was a bullet I would take it for you but how do I protect you against your own body? How can your body betray you like this?
In my mind’s eye I see you lying on a bed, strapped in,poison flowing through your veins… You are dying
Today was an amazing day. I desperately miss my beautiful child.
I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan. I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself
“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”
I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done! I cannot undo the lie or my decision not to go… I will however confess if I see him again.
My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed. There was a comment on one of my first posts…I reread the post and the next and the next and the next… I reread every one of the 335 posts I had written.
Other times, when I reread any of my journal entries or blog posts, I teared up. Today I did not. I was filled with relief.
I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity. The more I read the more I realised how selfish I was being. I took cognisance of the fact that in the early days of my blog I was careful with my words… Today I realised how much was never written. I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.
Today I was grateful that her suffering was over!
Does that mean I am “over” the death of my child? No! No! No! But I am at peace today that Vic is free of pain…
I missed her today as I will tomorrow, the day after tomorrow, next year and forever!
At about 01:00 this morning Vic came into my room and got into bed with me. Her tummy was cramping badly and she was scared. She just lay with me for a long time, sobbing and talking about her fears.
E.H.Chapin said: “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”…
Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…
She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed with pain when I changed her. Seeing my child sick and in pain, every day of her life , kills me. I am dying, painfully slowly from my child’s pain. https://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/
Vic is still a very sick little girl. The fact that her pain is better controlled does not mean that she is well. If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death. This week Vic’s amazing resilience again amazed me. She is strong beyond comprehension!
My heart bleeds for her that her fragile body has once again failed her incredible will to live. It is clear that she is merely holding onto life, as she knows it, with her fingertips……
I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved. Vic will never function on any level again. She is confined to bed relying on medication to keep her sane. Maybe she will have a good couple of days here or there but her sentence has not been commuted. https://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/
Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.
I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!
This evening she asked if she could have her injection a little earlier. Jared is going back to theatre tomorrow morning to have his stent removed. “Mommy, I need to try and sleep so I can be with my son tomorrow”
It is as if her wish triggered an avalanche of events.
Vic has been projectile vomiting since, and the perspiration is pouring off her. Her heart is racing, and her blood pressure is all over. Her abdomen is so distended and extremely tender on the abscess side!
Vic will not be at her son’s side tomorrow when he is readmitted to hospital.
Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next. When she has a good and busy day, like yesterday, she pays the price for weeks. Vic has not been out of bed today. She is deadly pale and drawn.
It is hard for her not having privacy. Vic is embarrassed that I hold her hair or wipe her face when she is vomiting. Yet she needs me with her….
We are however in this together as a family. It is a rough journey for everyone.
“I am so sorry Mommy…” …it echoes through my heart.
We have already had so many “extra” years. But the fact remains that Vic is ill. Today she is more ill than yesterday or even last week or last month. It is not an UTI causing the pain and fever. Her pain control is good enough to mask symptoms. Waves of severe nausea and cramping remain…
I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another…. I have read that it feels “uncomfortable”. It is called terminal agitation.
There have been times in the past couple of months that all Vic can do is lie in bed and breathe. Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement. There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milk shake. She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!
Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused. She is on the down ride hurdling to who knows what stage of her journey.
Vic had a night out of hell! The nausea was vicious and unrelenting. Pain reduced Vic to a whimpering bundle of human flesh.
Vic’s palliative Care physician, Dr Sue, visited Vic this morning. I think she was a little taken aback by Vic’s condition.
Sue is an amazing person. She was so gentle with Vic. Vic’s heart rate is fast and her blood pressure is 101/58. Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly. Her oxygen saturation levels are low – 90%.
Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.
Vic is having a lousy day. She is exhausted and very swollen. Despite the injections she has been nauseous all day. This evening she had another vomiting bout. Tomorrow we will see Dr Sue again. Just maybe there is a 3rd anti-nausea type injection available
Vic also complained of a terrible “acidic” feeling.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
12:42am and Vic is sleeping peacefully. She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!
Vic’s legs are growing very weak. The cellulitis on her arm has worsened despite the antibiotics. It is now oozing pus. Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics. She had a violent vomiting spell just after she took her antibiotic tablets tonight. It is very difficult for her to keep tablets and food down. Despite the six-hourly anti-nausea injections she has…. And of course there is the problem of the poor absorption.
Vic’s arm is very painful. The antibiotics have not started working yet. Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization. Obviously Vic need intravenous antibiotics and her tissue is too poor….
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Vic has been vomiting non-stop. The acid has burnt the inside of her mouth. Her derriere is so lumpy, black and blue from the constant injections. Sr Siza popped in. She examined Vic and started drawing up a Clopamon and Morphine injection.
“Please Sister, not my bum. Please do it on my thigh.”
Vic no longer has an appetite. She is sleeping at least 20 out of 24 hours. Vic is very warm to the touch and appears flushed. The thermometer reflects a temperature of 37 degrees C.
“Do you understand what your body is telling you Vic?” Siza asked
Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.
“Something is wrong mommy.”
This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service. She cried when she (again) named her pallbearers. “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible” https://tersiaburger.com/2013/01/02/sisters-by-heart/
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
And then on the 10 th of September 2012 I blogged the words that I want to repeat today…
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.
So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”
In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”
When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…
My standard answer to Vic was “I will be okay baby!”
Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”
“I will be fine. I will be grateful that your suffering is over…But I promise I will!”
I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…
So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.
We spoke briefly about the boys, but Alan firmly said that today we would focus on me…
I bravely started talking without waiting to be prompted. After all, that is why I was there.
“I knew that I would miss Vic after her death but nothing could prepare me for this” I said
“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.
I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.
I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…
I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…
I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.
I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.
I saw Alan look at the clock on the wall. I knew our time was almost up.
He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.
“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”
That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind, but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
Vic and I discussed this post… We cried then, and I cry now.
I hardly received any 2013 New Year’s wishes. Normally I would receive so many beautiful wishes but this year I received messages for a” peaceful New Year’s Eve filled with laughter and good memories…”
Jared went a friend’s home; Danie went to bed early – he is coming down with flu; Vic was asleep so that left Jon-Daniel and I. We watched Comedy Central and had some good laughs waiting for 2012 to end.
Jon-Daniel loves making his Mommy laugh. In a way I suppose he uses humour as a coping mechanism.
“I think we should wake Mom up at 12” I said
“Okay…Let’s sing Happy Birthday to Mom….” He said with a twinkle in his eyes.
As the hooters and sirens started going Jon-Daniel and I sneaked into Vic’s room and sang “Happy Birthday to you…” Vic opened her eyes and said “What is happening?” and immediately fell asleep again.
The joke was on us.
Today was a quiet day. The boys spend some wonderful quality time with their Mom. Danie remained in bed until almost 4pm as he is feeling lousy from the flu. We all drifted in and out Vic’s room. In the afternoon Jared went for a swim. Vic went outside and spoke to him.
Jared had some questions and she patiently explained to him what an “Executor’s” duties are. She explained why Leon and I were the Executors of her will and the Trustees of their Trust. (I got some lovely photos of Vic chatting to the boys!) Vic tried to show Jared that she could whistle through an acorn… Jon-Daniel taught her! As much as she tried she could not get a sound out of the acorn. To everybody’s laughter she said “But I can do it!”
We convinced her that she should get onto the inflated lilo. The cold water would reduce her body temperature and the sun would be good for the jaundice. Very reluctantly she got onto the “non- life-saving inflatable device”. I got into the pool with Vic.
Esther and Yuri arrived and she made a dash for her camera… later Leon and Henk arrived. The boys swam and laughed and played…
It was a wonderful day filled with glorious memories. We laughed and joked and eventually ate. Esther lay with Vic and they spoke about where Vic was in her journey.
It was a special day.
I think friends and family don’t know what to wish us…How do you say “Happy New Year” to a household where death is knocking on the door? I would not know what to say to us if I wasn’t me…
But from our home to yours: We wish you a great 2013. We hope that 2013 is filled with laughter, good health, abundance and time to do some good every day. We thank you for your love and support. Thank you for your prayers and words of encouragement. You have been such an amazing source of comfort to us.
Thank you Hospice for giving us the means to have these special memories! Thank you to the manufacturers of Morphine, Pethidine, Stemitil and Buscopan…
Over the past 10 years I have seen my child suffer so much indignity and indescribable pain. I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks. I have wept before God and prayed for Vic to die. I begged God to take away her suffering.
I advocated the right to die with dignity.
Vic has been in the care of Hospice for the past 3 months. In this time Vic has been given a new lease on life. Hospice cannot change the prognosis but they have given Vic quality of Life. For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening. She completed her photo albums.
Vic is in renal and hepatic failure. Her tissue is horrendous. Her pain is under control! As and when symptoms surface, Vic’s medication is adjusted. She is treated with compassion and respect. Her wish is the teams command….
As the situation is now I am so grateful that my child is alive. I treasure every breath that she takes. We chat, laugh and cry. We dream of going to Italy in 2013.
So given the situation now what would I advocate – The right to die with dignity or the right to live?
I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end. If it remains as great as it is now of course I want her to live. But it is key that Vic is allowed to live with Dignity!
As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person. It is not for family or physicians to play God. The patient has to be the only decision maker.
I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.
We all have the right to Live with Dignity. There is a huge difference between breathing and living…
Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”
“No problem angel. I’ll switch the kettle on.” I said
“I will be back in a minute” she said
I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….
I went through to her room and the poor baby had fallen asleep on her bed…
Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.
He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.
Just before 01:00 am Vic shuffled into my TV lounge.
“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”
We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)
The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.
It was a perfect day.
Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.
All the grandchildren wanted to stay.
Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.
Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)
Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.
Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.
“I miss you too Vic. How are you feeling?” Jnr asked
“I am battling Boetie (Little Brother) Vic said
“We are coming to visit in April then I will see you Vic”
“I don’t know if I am going to make it to April” Vic said
“Just hang in there Vic. It is not that long to April…” Jnr consoled her
“I know but I am tired. I am just missing you” Vic cried
“I will fly over for a weekend. I want to see you again” Danie promised
Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16th birthday. It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.
I know this will more than likely be another last for Vic.
Sue saw Vic this morning. Her liver is very distended and exerting pressure on the right lung. I now have to use her little arms and legs as injection sites. I HATE injecting her in the legs. The doctor fears that she will develop abscesses on her bum. The entire derriere area is full of lumps and bruises. When I inject her the injection site becomes “lemon-peely”. The immediate area swells and becomes hard. Sometimes there is a fair amount of bleeding or serum loss. Her tissue is POOR!!!
I discussed various central line options with Sue. Vic refused point-blank to even consider it. Vic has been mainlined so many times. She always asked the anaesthetists to not tape her hair to the central line…. Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein…. Due to her poor tissue and bleeding tendencies it took two hours!
So we discussed the way forward.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
“Then I can die…”
“We will find a way my love” Sue said…
“It is closer that she realises” Sue said to me at her car
Sr Siza examined Vic today. She phoned Dr Sue who will be in tomorrow morning. She also brought a script with for Dalacin antibiotics. The cellulitis has spread to all three the subcutaneous sites.
Siza expressed her concern at Vic’s decline…
Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”
That statement really shook me. Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions… I have never really considered living without my child.
Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters. We are hoping that they will “host” our Hospice at their premises.
The CEO knows Vicky and the boys. Jared was confirmed in his church earlier this year.
I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain. Vernon (CEO) quietly listened to us and explained how difficult fundraising is. Christians are tight with their money…
Vernon then shared the following with us.
“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky. I knew she was in hospital as she was on the prayer list. I drove to the Donald Gordon (Hospital) and was directed to the ICU. The nurses welcomed me although it was way past visiting time.”
“Pray for her. We are switching the machines off tomorrow morning…” they said.
“I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys. I stood next to a dead person that night. Two days later I heard that Vicky did not die when the machines were turned off…”
I just stared at him. I was speechless… I had no idea! It was the first time I had ever heard the story!
In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula. Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer. On the Tuesday Vic went into respiratory failure and was ventilated. I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator. By the Thursday her kidneys and liver had started shutting down.
My BFF, Gillian drove 350 kilometres to be with me. On the Thursday there was absolutely no sign that Vic could or would recover. Vic had a DNR and a living will that she had provided the hospital.
That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired. You must let her go…”
Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys. They were already in bed when we arrived home. We sat with them
“Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own. Mommy’s kidneys and liver is also not working that well anymore. The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much. They think it will be better for Mommy to be taken off the machines…”
Jared quietly started to cry. Jon-Daniel was stoic. Jared was 10 years old and Jon-Daniel 8 years old.
“What will happen with us Oumie” Jon-Daniel asked.
“Sweetie, Oumie and Oupie will ALWAYS be here for you. This is your home.”
Jared cried himself to sleep. Jon-Daniel just clung to me. The three of us shared a bed that night.
The next morning early Gill, Lee and I set off to hospital. When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”
The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.
Family and friends drifted in and out of the waiting room the whole day. My minister came and prayed for my child. Everyone said goodbye.
That afternoon Danie and I were allowed to see Vic. The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face. It was a grotesque sight.
Danie held her little hand and his tears dripped onto her arm.
“Oh sweetie” he said, the sorrow and pain raw in his voice.
Vic opened her eyes and said “Daddy”….
Three days later Vic was discharged from ICU….. It was not her time.
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
The subcutaneous driver is down. By this morning it was obvious that Vic’s tissue was just not holding up.
On Friday morning I removed and repositioned the driver. Serum leaked out of the syringe hole for almost two days. The area is inflamed, hot to the touch, swollen and painful. Cellulitis has struck! Yesterday evening I repositioned the driver again and this afternoon I removed it. So I will now administer the 150mg of morphine and the 60 ml Stemitil IM. Vic’s derriere is black and blue and lumpy from the injections.
Where to from here? How are we going to control this poor child’s pain? I can only think that they will have to fit a central line… Will they do it? She will have to go into theatre for that! There is absolutely no way I would allow the procedure without sedation! Central lines are very susceptible to infection and sepsis.
Poor baby. She is so ill.
Today I said to my BFF, Gillian, that it is almost as if, now the decision has been made regarding “her” Hospice, she is at peace. I sat next to her and thought to myself “I wonder if she will make Christmas?” But then I thought to myself “Wait a minute…This is Vic…She bounces back!”
Tomorrow her doctor will come and see her, she will go onto a course of antibiotics and bounce back again. Then we will decide how to deal with her pain…
There are several types of central venous catheters:
Non-tunneled vs. tunneled catheters
Non-tunneled catheters are fixed in place at the site of insertion, with the catheter and attachments protruding directly. Commonly used non-tunneled catheters include Quinton catheters.
Tunneled catheters are passed under the skin from the insertion site to a separate exit site, where the catheter and its attachments emerge from underneath the skin. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability. Commonly used tunneled catheters include Hickman catheters and Groshong catheters.
A port is similar to a tunneled catheter but is left entirely under the skin. Medicines are injected through the skin into the catheter. Some implanted ports contain a small reservoir that can be refilled in the same way. After being filled, the reservoir slowly releases the medicine into the bloodstream. An implanted port is less obvious than a tunneled catheter and requires very little daily care. It has less impact on a person’s activities than a PICC line or a tunneled catheter. Surgically implanted infusion ports are placed below the clavicle (infraclavicular fossa), with the catheter threaded into the right atrium through large vein. Once implanted, the port is accessed via non-coring “Huber” needles inserted through the skin. The health care provider may need to use topical anesthetic prior to accessing port. Ports can be used for medications, chemotherapy, TPN, and blood. As compared to CVC or PICC catheters, ports are easy to maintain for home-based therapy.
Ports are typically used on patients requiring only occasional venous access over a long duration course of therapy. Since the port must be accessed using a needle, if venous access is required on a frequent basis a catheter having external access is more commonly used.
A peripherally inserted central catheter, or PICC line (pronounced “pick”), is a central venous catheter inserted into a vein in the arm rather than a vein in the neck or chest.
Depending on its use, the catheter is monoluminal, biluminal or triluminal, dependent on the actual number of lumens (1, 2 and 3 respectively). Some catheters have 4 or 5 lumens, depending on the reason for their use.
The catheter is usually held in place by an adhesive dressing, suture, or staple which is covered by an occlusive dressing. Regular flushing with saline or a heparin-containing solution keeps the line patent and prevents thrombosis. Certain lines are impregnated with antibiotics, silver-containing substances (specifically silver sulfadiazine) and/or chlorhexidine to reduce infection risk.
Specific types of long-term central lines are the Hickman catheters, which require clamps to make sure the valve is closed, and Groshong catheters, which have a valve that opens as fluid is withdrawn or infused and remains closed when not in use. Hickman lines also have a “cuff” under the skin, to prevent bacterial migration and to cause tissue ingrowth into the device for long term securement.
Indications and uses
Indications for the use of central lines include:
Central venous catheters usually remain in place for a longer period of time than other venous access devices, especially when the reason for their use is longstanding (such as total parenteral nutrition in a chronically ill patient). For such indications, a Hickman line, a PICC line or a portacath may be considered because of their smaller infection risk. Sterile technique is highly important here, as a line may serve as a porte d’entrée (place of entry) for pathogenic organisms, and the line itself may become infected with organisms such as Staphylococcus aureus and coagulase-negative Staphylococci.
Triple lumen in jugular vein
Chest x-ray with catheter in the right subclavian vein
The skin is cleaned, and local anesthetic applied if required. The location of the vein is then identified by landmarks or with the use of a small ultrasound device. A hollow needle is advanced through the skin until blood is aspirated; the color of the blood and the rate of its flow help distinguish it from arterial blood (suggesting that an artery has been accidentally punctured), although this method is inaccurate. Ultrasound probably now represents the gold standard for central venous access and skills, within North American and Europe, with landmark techniques are diminishing.
The line is then inserted using the Seldinger technique: a blunt guidewire is passed through the needle, then the needle is removed. A dilating device may be passed over the guidewire to slightly enlarge the tract. Finally, the central line itself is then passed over the guidewire, which is then removed. All the lumens of the line are aspirated (to ensure that they are all positioned inside the vein) and flushed. A chest X-ray is typically performed afterwards to confirm that the line is positioned inside the superior vena cava and, in the case of insertion through the subclavian vein, that no pneumothorax was caused as a side effect. Vascular positioning systems can also be used to verify tip placement during insertion without the need to a chest X-ray, but this technique is not yet a standard of practice.
Videos are available demonstrating placement of a central venous catheter without and with ultrasound guidance.
Central line insertion may cause a number of complications. The benefit expected from their use therefore needs to outweigh the risk of those complications.
Pneumothorax (for central lines placed in the chest); the incidence is thought to be higher with subclavian vein catheterization. In catheterization of the internal jugular vein, the risk of pneumothorax can be minimized by the use of ultrasound guidance. For experienced clinicians, theincidence of pneumothorax is about 1.5-3.1%. Some official bodies, e.g. the National Institute for Health and Clinical Excellence (UK), recommend the routine use of ultrasonography to minimize complications.
All catheters can introduce bacteria into the bloodstream, but CVCs are known for occasionally causing Staphylococcus aureus andStaphylococcus epidermidissepsis. The problem of central line-associated bloodstream infections (CLABSI) has gained increasing attention in recent years. They cause a great deal of morbidity and deaths, and increase health care costs. Historically, a small number of CVC infections were considered an acceptable risk of placing central lines. However, the seminal work by Dr. Peter Pronovost at Johns Hopkins Hospital turned that perspective on its head. Additionally, the Institute for Healthcare Improvement (IHI) has done a tremendous amount of work in improving hospitals’ focus on central line-associated bloodstream infections (CLABSI), and is working to decrease the incidence of this particular complication among US hospitals.
The National Patient Safety Goals NPSGs and specifically NSPG 7.04 address how to decrease infections. The NSPG 7.04 has 13 elements of performance to decrease CLABSIs.
The 13 Elements of Performance (EPs):
EP 1 & 2 deal with educating staff and patients about Central Vascular Catheters and their potential complications
EP 3 specifically directs facilities to implement policies and practices to reduce CLABSI
EP 4 & 5 are about how to perform surveillance for Central-Line Associated Bloodstream Infections (CLABSIs)
– Institute for Healthcare Improvement (IHI) bundle
4. Selection of Optimal site for Central venus Catheter (CVC)
5. Daily review of ongoing need for CVC
– Disinfection of intravenous access ports before use
National Patient Safety Goals require documentation of a checklist for CVC insertion and Disinfection of intravenous (IV) access ports before use (scrub the hub). Some literature has suggested the use of a safer vascular access route – such as intraosseous (IO) vascular access – when central lines are not absolutely necessary (such as when central lines are being placed solely for vascular access). Infection risks were initially thought to be less in jugular lines, but this only seems to be the case if the patient is obese.
If a patient with a central line develops signs of infection, blood cultures are taken from both the catheter and from a vein elsewhere in the body. If the culture from the central line grows bacteria much earlier (>2 hours) than the other site, the line is the likely source of the infection. Quantitative blood culture is even more accurate, but this is not widely available.
To prevent infection, stringent cleaning of the catheter insertion site is advised. Povidone-iodine solution is often used for such cleaning, but chlorhexidine appears to be twice as effective as iodine. Routine replacement of lines makes no difference in preventing infection.
The downward pain spiral has already begun. Vic is quite swollen and had a bad day. This afternoon late she perked up and has only had one vomiting spell tonight.
As Sr Siza was examining her this afternoon and taking her vitals I remarked on the swelling. “It’s the organs shutting down” she whispered….
“I am scared Siza. I administer such massive dosages of medication to Vic… What if I kill her?” I asked over a cup of tea.
“Don’t worry my love. You won’t. There is no upper limit to the amount of morphine that Vicky can go on… As long as we titrate the dosages she will be fine.”
So I Googled Morphine+dosage+death and one of the first articles that came up (and I could understand) is “When Morphine Fails to Kill” By GINA KOLATA
Proponents of assisted suicide often argue that when a doctor helps a patient who wants to die, it is no more ethically troubling than when a doctor kills a patient slowly with morphine, often without the patient’s knowledge or consent, a medical practice these proponents say is increasingly common.
So why forbid doctors to prescribe lethal pills that could allow patients to control how and when they die? There is no question that doctors use morphine this way. “It happens all the time,” said Dr. John M. Luce, a professor of medicine and anesthesiology at the University of California in San Francisco. And there is no question that most doctors think that morphine can hasten a patient’s death by depressing respiration. But Luce and others are asking whether morphine and similar drugs really speed death.
Experts in palliative care say the only available evidence indicates that morphine is not having this effect. Dr. Balfour Mount, a cancer specialist who directs the division of palliative care at McGill University in Montreal, firmly states that it is “a common misunderstanding that patients die because of high doses of morphine needed to control pain.”
No one denies that an overdose of morphine can be lethal. It kills by stopping breathing. But, said Dr. Joanne Lynn, director of the Center to Improve Care of the Dying at George Washington University School of Medicine, something peculiar happens when doctors gradually increase a patient’s dose of morphine. The patients, she said, become more tolerant of the drug’s effect on respiration than they do of its effect on pain. The result, Dr. Lynn said, is that as patients’ pain gets worse, they require more and more morphine to control it. But even though they end up taking doses of the drug that would quickly kill a person who has not been taking morphine, the drug has little effect on these patients’ breathing.
Dr. Kathleen Foley, who is co-chief of the pain and palliative care service at Memorial SloanKettering Cancer Center in New York, said that she routinely saw patients taking breathtakingly high doses of morphine yet breathing well. “They’re taking 1,000 milligrams of morphine a day, or 2,000 milligrams a day, and walking around,” she said.
The standard daily dose used to quell the pain of cancer patients, she added, is 200 to 400 milligrams. Dr. Lynn said she sometimes gave such high doses of morphine or similar drugs that she frightened herself. She remembers one man who had a tumor on his neck as big as his head. To relieve his pain, she ended up giving him 200 milligrams of a morphinelike drug, hydromorphone, each hour, 200 times the dose that would put a person with no tolerance to the drug into a deep sleep. “Even I was scared,” Dr. Lynn said, but she found that if she lowered the dose to even 170 milligrams of the drug per hour, the man was in excruciating pain. So to protect herself in case she was ever questioned by a district attorney, she said, she videotaped the man playing with his grandson while he was on the drug.
On rare occasions, Dr. Lynn said, she became worried when she escalated a morphine dose and noticed that the patient had started to struggle to breathe. Since she did not intend to kill the patient, she said, she administered an antidote. But invariably, she said, she found that the drug was not causing the patient’s sudden respiratory problem.
One man, for example, was having trouble breathing because he had bled from a tumor in his brain, and an elderly woman had just had a stroke. “In every single case, there was another etiology,” Dr. Lynn said. “Joanne’s experience is emblematic,” said Dr. Russell K. Portenoy, the other cochief of the pain and palliative care service at Memorial SloanKettering Cancer Center.
He said he was virtually certain that if doctors ever gave antidotes to morphine on a routine basis when dying patients started laboring to breathe, they would find that Dr. Lynn’s experience was the rule. Patients generally die from their diseases, not from morphine, Dr. Portenoy said.
The actual data on how often morphine and other opiates that are used for pain relief cause death are elusive. But Dr. Foley and others cite three studies that indirectly support the notion that if morphine causes death, it does so very infrequently. One study, by Dr. Frank K. Brescia of Calvary Hospital in the Bronx and his colleagues, examined pain, opiate use and survival among 1,103 cancer patients at that hospital, which is for the terminally ill. The patients had cancer that was “very far advanced,” said Dr. Portenoy, an author of the paper. But to his surprise, he said, the investigators found no relationship between the dose of opiates a patient received and the time it took to die. Those receiving stunningly high doses died no sooner than those taking much lower doses.
Another study, by Dr. Luce and his colleagues in San Francisco, looked at 44 patients in intensive care units at two hospitals who were so ill that their doctors and families decided to withdraw life support. Three quarters of the patients were taking narcotics, and after the decision was made to let them die, the doctors increased their narcotics dose. Those who were not receiving opiates were in comas or so severely brain damaged that they did not feel pain. The researchers asked the patients’ doctors to tell them, anonymously, why they had given narcotics to the patients and why they had increased the doses. Thirty nine (39%) percent of the doctors confided that, in addition to relieving pain, they were hoping to hasten the patients’ deaths. But that did not seem to happen.
The patients who received narcotics survived an average of 3 1/2 hours after the decision had been made to let them die. Those who did not receive narcotics lived an average of 1 1/2 hours. Of course, Dr. Luce said, the study was not definitive because the patients who did not receive drugs may have been sicker and more likely to die very quickly. Nonetheless, he said, the investigators certainly failed to show that narcotics speeded death.
Dr. Declan Walsh, the director of the Center for Palliative Medicine at the Cleveland Clinic, said it had been 15 years since he first questioned the assumption that morphine used for pain control killed patients by depressing their respiration. He was working in England at the time, and many doctors there were afraid to prescribe morphine or similar drugs for cancer patients, Walsh said, because “they were afraid they would kill the patients.”
So Walsh looked at carbon dioxide levels in the blood of cancer patients on high doses of morphine to control their pain. If their breathing was suppressed, their carbon dioxide levels should have been high. But they were not. Nonetheless, Walsh said, the idea that morphine used for pain relief depresses respiration is widely believed by doctors and nurses because it is “drummed into them in medical school.” So, said Dr. Susan Block, a psychiatrist in the hematology and oncology division at Brigham and Women’s Hospital in Boston, it is not surprising that many doctors try to use morphine to speed dying. “There is more and more evidence most of it unpublished, but it’s coming, I’ve seen it that physicians, in addition to wanting to ease patients’ discomfort, also want to hasten death,” Dr. Block said. “Everyone is feeling guilty.”
Yesterday Hospice increased Vic’s pain medication by 25%. The subcutaneous driver is holding up in her arm. She has not vomited in the past 24 hours. Vic spent wonderful, constructive time with the boys today.
Yesterday Renée, Jared’s extra maths teacher and a friend, phoned to hear if I wanted to go for a walk. I declined as Vic was really not well. Then she phoned to ask if everything was okay. I said we were having a bad day. She had read the boys BBM status updates and asked if I wanted her to pop around and help… I declined. She phoned again and offered to cook us dinner… I said we had already prepared a meal. Renée said “I will bring you dinner tomorrow night”….
My BFF, Gillian, is visiting. It is so comforting having her around. I felt enfolded by the normal-ness of her life today …She is a warm and comforting person who knows my soul as well as I know my own soul. In the words of the great Aristotle: “Friendship is composed of a single soul inhibiting two bodies.” Gill is a safe haven. I love the no-nonsense way she speaks, her efficiency, her single-minded loyalty and ability to love. Gillian’s greatest character trait is that she loves unconditionally and NEVER judges.
Gillian is a second mom to Vic.
When our children were growing up we were inseparable. Gill is a delicate, tough person but cannot handle blood. I am a tough career girl but cannot handle needles being shoved into my child’s little body. As young mommy’s I did the blood thing and Gillian did the dentist and invasive tests thing. She would give the kids a quarter of a Panado and a sermon about bravery and march them off to the dentist, x-rays etc…. I cleaned wounds and stuck plaster over wounds…We are the perfect team. United against our children….
When the boys got mumps Vic got mumps, when the boys got chicken pox Vic got chickenpox… Vic had her own bedroom in Gillian’s home.
I cried when her eldest, Darren, went to school the first time. His little knees were so skinny and looked like matchsticks in his school pants.
Gillian used to relieve me when Vic was in hospital and Len (her husband) would take me for tea and anchovy toast. Gillian is the first person I phone when I have a Vicky crisis.
After my divorce from Vic’s dad Len and Gill once drove to my new apartment at 2am and took turns in consoling me. The other sat in the car with the two boys sleeping on the back seat! In my single days I would go to Gillian for a cooked meal with vegetables…I never cooked! The night before I remarried I spent the night with Len and Gill. We laughed and joked and ate toast… Gillian dressed Vic and got her to church…
Gill is one of the most amazing people I know. She is a friend in a million.
My friend is now semi-retired. She lives in a beautiful game reserve in the most beautiful part of our country. Her home is warm and welcoming – a safe haven to a myriad of friends and family. Gill chats to the boys on BBM and is always 100% up to date on what is happening in their lives. When I travel Gill will check on Vic every single day!
Yesterday the panic was sitting in my throat. I felt as if I was choking. Today Vic is great and Gillian is visiting. I am calm and at peace.
Tonight Renée dropped off the greatest lasagna and a chocolate pudding. I am in total awe of the love that we have been surrounded by and absolutely amazed at the kindness that Renée had shown….. We live in Johannesburg – a concrete jungle! I am so deeply touched!
So, tonight as my little girl finally settled into a deep and pain-free sleep I allowed myself the luxury of a couple of tears. Tears of gratitude for the love we are surrounded by! Tears of gratitude that the pain medication is working! Tears of gratitude for a good day!
I know that the pain medication will only work for a week or two and then it will have to be increased again. At what stage will Vic’s body not be able to handle the pain medication any longer?
But tonight I am not going to dwell on my questions.
Just tonight I will indulge in an early night.
The friend in my adversity I shall always cherish most. I can better trust those who helped to relieve the gloom of my dark hours than those who are so readyto enjoy with me the sunshine of my prosperity. – Ulysses S. Grant
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!
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.
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.
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
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 SagaBreaking 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…
Yesterday I posted on “time”. Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying
Some of the stages of dying start to be discernible a few months before death occurs.
Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm.
Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods. This year she relived every minute of her father’s final journey… Vic has started living in the past.
I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.
Vic no longer eats big meals and I seldom hear her say “I am ravenous”. Due to the 81 abdominal surgeries and multiple bouts of septicemia Vic’s absorption is very poor. (Poor absorption = BIG appetite!) Vic used to have the appetite of a horse – always nibbling and scrounging for food. Now it is sheer discipline that keeps her eating. She knows she cannot have medication without eating first. Strange thing is that she is not really losing weight. Hospice says it is due to the high levels of cortisone she takes… I have been told by Hospice not to worry about her loss of appetite. Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….
The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria. Our bodies actually start relaxing into this stage of dying.
Vic still drinks a fair amount of coffee. She used to drink it warm but now she dozes off before she has finished her cup of coffee. She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.
Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep. It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side….
Reduced appetite and increased sleep is called “Signposts for dying”.
A couple of weeks ago Vic was very emotional. She would tear up without any reason. This stage has passed. It is as if her tears cleansed her soul.
Vic is battling with loneliness. She hates being alone. If she could she would have one of us around her all the time. She often complains that we do not spend time with her. We do spend a lot of time with her. She just dozes off and then we leave to carry on with our lives… The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey
Vic is not in good shape at all. She is suffering severe cramping and nausea that is not responding to any of the medication. The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning. She also suggested that Vic be admitted to Hospice In-Patient’s. Vic and I firmly declined…
It is obvious that Vic has one or other infection. I think it is the abdominal sepsis. She seems flushed and feels hot and cold. The thermometer does not reflect her running a fever. This is obviously something as Ceza mentioned it to the doctor. She explained that this happens when the auto-immune system is compromised. I have tried to Google it but without too much success. I will ask the doctor tomorrow morning.
Vic is in terrible pain tonight. I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even. She whimpered in her drug-induced sleep….
I know the shutting down process has started. Not because Hospice told me but because Vic told me.
Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!