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.
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!
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…
This beautiful poem was posted byAarthi – http://sickocean.wordpress.com on 24SaturdayNov 2012. Aarthi is an exceptional poet who often moves me to tears. Thank you Aarthi for sharing your amazing talent with us. I encourage everyone to visit Aarthi’s blog. It is filled with so much raw emotion.
The Weight In My Bones
like bridges made
of concrete ropes
ripping through my existence
keeping me earthly bound
so sturdy yet unchangeable a part
i am all heavy with matter contained
i try and bend yet
the break never happens
like a deeper strength holding me
pain prevents a shattering noise
the water in me weighs more
than what gives me a shape
this will is fragile
and a regret pulls me down
purposes unsolved
promises broken
a thousand images shattered
everything that i never said
all remains in unwalked places
the pores in my soul
each window was blocked
in persistent steps, in days and years and decades
leaving all weight like
ashes of a past trapped
so diseased i feel at times
lifeless like a fallen twig
and the feeling weighs me deep
deeper than skin and all the soft human matter
i feel it in my bones
like i am bond to a mountainous stone
so welded inside with a belief
perhaps i may never be able to sleep
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.
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:
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…
Lucinda commented today “Again, I can’t add anything on to what others have said; I don’t know how you have the courage to make these posts.”
I sometimes wonder why do I blog? My whole being screams “so I won’t forget”. I want to remember every day, every spoken word, every unspoken word, every feverish touch. My friends have lifetimes ahead with their children…I don’t. They have many more Christmases and birthdays to look forward to. The chances are that their children will bury them… As a family we live one day at a time. We are grateful for every morning when we wake up!
We have friends who lost their 17-year-old son almost 17 years ago. I have not seen her in a couple of years. When I last saw her she said that it does not become easier with time. One just learns to cope with the pain and the loss. My friend had to walk away from her son. He was declared brain-dead after a drunk driver drove into the car transporting him to a rugby match….
She said “I touched his big feet. I lay my head on his chest and I could hear his heart beat …. I walked away and his body was warm…” Steven’s heart beats on in another person’s chest. They generously, in all their pain, donated his organs.
Joan never had the opportunity to say “goodbye forever” to Steven. She said “Goodbye, have a good game. Love you!” Joan treasures the last hug, kiss, laugh… She holds onto it.
I want to hold on to every memory I possibly can. As hard as it is I write so I will remember everything.
A lot of what I write I don’t post. It is too raw.
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!
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.
“Worrying is carrying tomorrow’s load with today’s strength carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” ~ Corrie Ten Boom – I read this on Dr Bill Wooten’s blog http://drbillwooten.com/2012/11/17/todays-strength/
This is so true. I have been so worried about Vic’s latest symptoms The body is such a complex intertwined mechanism…. I am absolutely fascinated at how everything links in… I just have to discover the function of the appendix and it’s interwoven functions…
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.
I Googled her symptoms and found something that matches her new symptoms and blood test results.
In medicine, metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3–) in the kidney. Its causes are diverse, and its consequences can be serious, including coma and death. Together with respiratory acidosis, it is one of the two general causes of acidemia.
Over the past 5.5 months I have received many messages of encouragement, prayer, support, empathy and an outpouring of love. Until now Vic’s final journey seemed so pointless and unfair ….
A million times I have asked myself WHY Vic? Why has she had to travel this horrifically painful journey? Why do her boys have to live and witness this pointless pain and suffering?
I realize now that Vic’s suffering has made us aware of the suffering of others. In my country we have a terrible poverty problem and only 5% of people dying have access to palliative care. Maybe Vic had to travel this terrible road so the world can become aware of the 95%’s plight.
Tonight I was reading through the comments I received on my latest blogs. I would like to share some of it with you. I randomly copied some of the comments for you to read:
Tersia, I am still with you, and so touched that you are so conscious of all that is going on around you. I hope that as Vic surrenders, as she is already doing,, so do you, so that this stage of both of your lives becomes an experience you couldn’t have imagined.
I hope as Vic begins to feel that gentle euphoria, you too get a share of it… the body and the mind are so complex and beautiful that not everything happens as we think it should, and I hope your grief is somehow eased and soothed. Thinking of you all, Valerie
PS I hope you don’t think this message is insensitive….
In the final stages dying is something we do alone. i have often thought i would like to enter that final sleep while my husband is out. maybe that is just me and my desire to spare him more pain. you and vic are so close and i don’t think there is anything that can be said to make this more bearable for you. my heart aches for you, your husband, vic’s boys, her siblings and extended family. just remember it is easier to be the one leaving. we know that our suffering is going to end. it is your suffering we despair. whatever is meant to be will happen and yet i can’t help but hope for you to have enough time to be ready to let go
November 14, 2012 at 07:29(Edit)My thoughts and prayers are with you and the family. I pray that you will all have peace in your hearts and minds as you await Vic’s release from this terrible suffering.
Amazing that you are sharing this difficult journey with all of us. This takes a lot of courage, and Vic is so lucky to have you (and the others) around her at this time. And we are so lucky to benefit from your sharing, should (or when) we find ourselves in comparable situations. But right now, my thoughts are with you and your family.
Ray’s Mom says: November 15, 2012 at 00:53(Edit) Tersia I wish you didn’t have this to bear, that your daughter could magically recover. God is with you and your daughter is so fortunate to have you near. Thank you for sharing this life experience.
optiesays: November 13, 2012 at 07:46(Edit) I am so glad that Vic has been blessed with these “extra” years but I am sure she is aware that they come at a cost to her and the family. We are never ready to say goodbye to those we love dearly. Vic’s suffering is terrible and my prayer for her is that the pain control will be well managed till the end. My heart goes out to you as a mother and grandmother, I cannot imagine what it must be like for you to have witnessed all that Vic has been through.
Gilliansays: November 17, 2012 at 07:02(Edit)That is brilliant idea, is there anything I can do to help you get the (Hospice) centre up and running.
I have to thank you for bringing a subject most feel they cannot talk about out in the open in such a loving way ~
I would wish too be able to move forward with your goal with a hospice there in your area know If you need a latter writing campaign, or anything i can do from here please never ever hesitate to ask me please. You are making a beautiful thing out of the tragedy of Vic;s life being cut far too short.
sbcallahan says: November 16, 2012 at 03:06(Edit) it is only normal to want to hold on to your beloved vic. i do hope with all my heart that you can let her go if that is what she wants now. at this stage you know that her suffering is going to go on and no one is served by her continued pain. this is the hardest thing you will ever do but you can find the strength to do it. wishing you peace of heart
Barefoot Baronesssays: November 17, 2012 at 17:38(Edit) My God Tersia. I was instantly taken back to my mom who had stage 4 lung cancer that we were aware of just 2.5 months after diagnosis. I know the fear of the low oy2 count. I do know the fear of the oy2 therapy. What I did not know is the long lasting journey that you & Vic know.
Every post you share and I read I am left with this love for you both that seems to wash away all those things in life that matter not one bit. I have stopped sweating ALL the small stuff. There is something so loving & giving in your sharing with us, but more importantly Vic’s children are always going to have this. your journal of their mom’s life. I cannot think of a more loving, tender and generous thing for a mother and grandmother to do. my prayers and wishes are that this cathartic in a good way for you.
Although I am still behind in reading posts I have devoted m, myself to missing one of yours. Just may put me behind in commenting and I am wondering and hoping this does not cause you more pain having to come back to a memory of a few days ago. You tell me if so because I will understand and honor your wishes.
My gentle hugs to you both, Please give my love too. ~ BB p.s. you will forgive me please..I cannot hit the like button on your posts.
Barefoot Baronesssays: November 17, 2012 at 19:41(Edit) My Dear friend, You have choked me up with tears. You, who is going through so much have the sight to see beyond. I am humbled by your kind and generous words. I’d like you to know that any time you need a cyber-shoulder to lean on I would be honoured if you chose me at times, or all the time. You can even email me, you have my permission.
I am grateful Tersia for your words. I mean what I said that the small stuff is not on my plate anymore. If it arises I am able to just kick it to the curb with no further attention. You & Vic are enforcing this belief in myself every day Vic should know that all she allows to be shared is the most loving gift any human can give to another at this time when real wisdom’s surface. It’s amazing to me that at a time when it would be allowed to let her withdraw she instead reaches out to her children, her mom, and via your blog even her words.
Thank you so much for this message~ My love & gentle hugs to you both.
My Blogsays: October 20, 2012 at 00:43(Edit) I too wish your child could be pain free. After I read your post I logged on to Facebook. My daughter posted about her migraine, and how her meds aren’t working. I too suffer from migraines and blame myself for passing them down to her. I wish I could help. All I can do is love her and be there when needed. Keep up your strength. We’re with you and your daughter in spirit
thedarkest13 says: October 19, 2012 at 20:51 It’s amazing that you have that openness with your daughter and the living fear and pain is going to be there. We are made to feel loss and sorrow. Especially when it’s our children. I am truly sorry for what is happening and watching is not easy. Just enjoy what time you do have and make the most loving memories you can. You both seem amazingly strong and I don’t even know you. The love you have transcends these moments.
those moments between you and your daughter those drops of peace and happiness and joy save them like drops of pearls save them like diamonds rare that is a form of unending love that gives and gives and never expects be there like a rock for your child and i am sure she would win and survive our world is one of miracles too our world is an oasis rarities and your child too shall her courage prove just be there with a smile always give her the courage to stand taller than before she shall overcome her struggles soon prove all wrong and herself right she must win and win this time make sure you are there to know witness her strength, her wars, her fight love can kill the worst of fears and happiness shall soon return changing the way she views her life…
with love and regards…
Dedicated to Vic and her wonderful Mom. :)
Peter Wiebesays: October 22, 2012 at 01:14 I so appreciate your openness. I pray that nothing will happen while you are away. I pray that Jesus will bring you comfort.
Andrewsays: October 22, 2012 at 03:51 I always found the roller coaster metaphor powerful during my cancer treatment, recovery, relapse, treatment, and recovery again and I think you have captured it well with Vic. Good for you to get away for a week – caregivers sometime forget that they need care too. Best wishes.
Gillian says July 4, 2012 at 04:56(Edit) Dear Tertia, Do not be so hard on yourself. You have so much on your shoulders, you are allowed to have emotions, you are allowed to get irritated, What you need is a good, well deserved mental rest where you stop trying to work things out yourself …… A long much-needed look at the beautiful creations, topped off with some quality time with a friend. And trusting someone to assist with Vic for 2 days a month. She does not want to feel that she is the cause of you being house bound. Read Matthew 11:28-30. XXXXX
dlmchalesays: October 12, 2012 at 20:48(Edit)I only bookmark a handful of sites that I “need” to follow; sites that do more than convey information – sites that cause an necessary evolution of my own humanity. Your site is at the top of that short list. I have so much empathy for what your family endures on a day to day basis, so much so that there are times I can’t even read another paragraph because it physically hurts to watch you and your loved ones afflicted so.
I know there are times when you feel like giving up. That is more than understandable and you should not run from those feelings….these types of reactions actually keep you sane. But know this: in your darkest moments, when all else seems insurmountable, ….you are not alone, in spirit, in prayer, in thought. You need never edit your writing to mask this incredible pain. In sharing such a violent and honest summary of your families pain, you bring a sense of belonging to something bigger to all those people who are enduring similar challenges. I can’t tell you why the unfairness of it continues. But I can witness that you have been a champion of love and a gladiator of emotional support. You make a difference in this fight…a big difference. We….the people who experience this on vicariously through your written word…also have an obligation, one that I commit to and cherish…and that is to be here for you when you need us. You are an inspiration to me.
Dennis
micey says: October 23, 2012 at 21:12 Hi Tersia. I finally made it to your blog. I’m so sorry for the suffering your family is living through. I pray the Lord gives you strength to carry on each minute of the day. I pray He fills you with peace. I pray for miraculous healing for your sweet girl. I pray for the end of suffering. I pray you have a safe and wonderful trip to visit your family. I pray you receive many hugs from those you love. I pray you find rest for your weary soul.
in the final stages dying is something we do alone. i have often thought i would like to enter that final sleep while my husband is out. maybe that is just me and my desire to spare him more pain. you and vic are so close and i don’t think there is anything that can be said to make this more bearable for you. my heart aches for you, your husband, vic’s boys, her siblings and extended family. just remember it is easier to be the one leaving. we know that our suffering is going to end. it is your suffering we despair. whatever is meant to be will happen and yet i can’t help but hope for you to have enough time to be ready to let go
I am so proud of my beautiful Vicky who has made a difference in so many people’s lives. I am proud that is her most pain filled moments she can think of others who are less fortunate than she is.
I thank Vic for the vision of a Hospice in our city. I want to thank everyone who has sent us messages of comfort, support, encouragement and prayers… Thank you for walking with us on this difficult journey. Thank you for the love you have shown. Thank you for your prayers.
If this post does not make enough sense please forgive me. Today has been a very difficult one for Vic. She is so tired. I am just trying to make sense out of everything…..
The comments I extracted were absolutely random and does not minimize the value and comfort I experienced from the hundreds of wonderful messages I have received. Most of my readers/followers have life-threatening diseases, lost a child, suffer debilitating pain of their own and yet they care! Thank you.
Last night was a better night. The additional anti-nausea injections are working. I hope the antibiotics are working.
Hospice measured Vic’s SP02 levels today and it is between 84 and 88%. I don’t think that is a good sign. Lani, second eldest stepdaughter, phoned me last night and told me that she had chronic ill patients whose SP02 levels were as low as 70%. Lani is a physiotherapist. I felt better after our chat.
Vic is extremely tired. She went out for coffee with her best friend, who, very recently, was diagnosed with breast cancer. Vic is a compassionate and caring person and wanted to support her friend emotionally! When she got home she had a lie down – for the rest of the day.
Tonight I helped her bath and wash her hair. Poor poppet, she is so exhausted after her bath that she had to lie down and is taking a nap again. Her hair is still damp but we will dry it later. I hope she has a better night but I am not very optimistic.
Whilst I was rinsing Vic’s hair she said “Mommy what do people do that don’t have a family like mine”
“Oh sweetie, it must be very hard for them…”
“Sometimes I feel guilty because I take up so much time, money and attention from you. I have taken up your entire life…” Vic said
“But sweetie, we love you! What do you want us to do less for you to feel better? Tell me and we will do it!”
We both laughed and the moment was over…
A while back I made a decision. We do not have our own Hospice in our suburb. We fall under the auspices of the Houghton (Johannesburg) and are literally the orphans of the system. I am going to start a Hospice in Alberton.
This Hospice will focus on palliative care and will bring purpose to Vic’s suffering. It will be a monument of her suffering and her compassionate nature.
This is a subject very dear to my heart. Vic has been saved from the claws of death so many times in her little life. I often lie in bed thinking how much physical pain and discomfort I have imposed on Vic by not allowing the doctors to not give up. By cajoling her into living. Twice this week I begged her to allow me to take her to hospital. I promised earlier this year that I would respect her wishes. https://tersiaburger.com/2012/05/18/6-5-2012-3/
My BFF, Gillian, sent me this email message:
Morning, you summed up “Where did the time go” perfectly. I cannot believe that 8 years have passed so quickly. Jon Daniel was 7 and Dr said he would not understand about death, but Jared 9 would be able to comprehend and mourn. You wonder what is better……. When they are little or older. Vic our miracle child has hung in there for her Angels. She can only be commended on her will power to add another day to their lives. She has no life. Except to smile with sad eyes every time she sees the boys for another day. As hard as it is to nurse your child, you are also spared Another day good bad or ugly. God has sent Vic to us give each one a lesson – not to complain or give up – the Power of the mind. Be grateful for what we have body mind and soul. Love you all with all my heart
What Gillian wrote in her mail is so true. If I had allowed Vic to die earlier she would of been saved incredible amounts of raw, undiluted suffering and indignity! A couple of posts ago I wanted to include a photo of Vic’s abdomen so people could understand what a person looks like after 81 abdominal surgeries. I decided against it as it is too horrific to post. But we have been blessed with some wonderful times. The boys are now old enough to understand the extent of her suffering. At this stage I am focused on her pain. I remember when I was stressed that she was taking a couple of hundred milligrams of morphine a week. Now it is a couple of hundred per day…
During an internal medicine residency, newly hatched doctors are responsible for some of the sickest patients in their teaching hospitals. This is because those patients often don’t have private doctors to attend them and are poor and sometimes self abusive, with the complex problems that go with smoking, drug and alcohol abuse and lack of regular medical care. These patients often present with their diseases late in game, when much must be done quickly.
There is little or no time to discuss end of life issues and so the assumption is made that these folks want “everything done” which includes machines and potions to support organs and bodily functions as they cease to work right. A scenario might look like this: 48 year old heroin abuser comes in with fever of 104 and symptoms of a stroke. He is admitted to the intensive care unit with low blood pressure, becomes gradually delirious and his heart rate increases, he is sedated for trying to crawl out of bed and run off, he becomes lethargic and is unable to breathe for himself, a central line is inserted and he is intubated and put on a ventilator, his blood pressure is supported with pressors and fluids, his oxygen level cannot be supported despite high ventilator settings. His kidneys cease to work and his heart goes into a rhythm that produces no blood pressure at all, he receives CPR with chest compressions, he is resuscitated, but barely alive, unable to communicate, obviously brain damaged beyond repair, placed on dialysis, eventually succumbs to overwhelming infection. We call this a “flail.” It is horrifying and time consuming and ultimately a colossal waste of human and monetary resources. Repeated experiences of this type sour most of us on the idea of being resuscitated, so many doctors consider themselves “DNR (do not resuscitate).” We don’t want to be resuscitated ever, no matter what. There are some things that are worse than death.
Some resuscitations go well, though. A patient arrives in the emergency department with chest pain, develops an arrhythmia, has chest compressions briefly and electrical cardioversion and is conscious within minutes or hours. Some people briefly can’t support their own needs for respiration and require a few days of ventilation before being able to breathe adequately. Although they are weak and puny for awhile, they go home and live to tell the story, go back to work, raise families, climb mountains. These successes usually happen to people who were vital before they became really sick, the younger folks, without multiple or terminal illnesses to begin with.
When someone is admitted to the hospital, the physician responsible for their care (which is more and more often the hospitalist) determines, if possible what their wishes would be regarding life support should their breathing or heart stop. These discussions are very difficult if the patient has not thought about resuscitation and has not talked with a physician who knows them about options.
Often patients have reasonable hesitance to make potentially life determining decisions with a doctor who they don’t know and who doesn’t have time to talk with them about the implications of these decisions. In our heads we have a pretty good idea of which patients would do well should they require cardiopulmonary resuscitation, and we really want people whose chances of recovery are lousy to tell us that they are DNR. A DNR decision means that will not flail them. We will not get into a situation in which failure is likely. Should this patient become so sick that medicines, hydration and appropriate surgical procedures cannot save them, we will transition to a strategy that makes death peaceful and painless.
We rarely succeed in communicating this to patients and many who will not benefit from cardiopulmonary resuscitation say “Oh yes, doctor, I want everything done.” Some say this because their experiences are different from ours, they have seen doctor shows in which resuscitation was successful, they think that withholding resuscitation means getting substandard care, and sometimes they think that we just want to spare ourselves the trouble of saving them. And some of these concerns are valid. A patient who is “DNR” may not be watched as closely or treated as quickly if they decompensate. Some people with horrible prognoses do get better after being resuscitated, though this is pretty uncommon and usually involves a pretty significant decrement in quality of life.
Even though it is hard to establish trust with patients or their families in the context of being a hospitalist, I think it is one of the most important discussions to do right. It is everso tricky, though. Even asking the question can make a patient frightened or hostile. They wonder if we are asking this question because we secretly think they are going to die soon. They feel that the subject is too private to broach with a near stranger. They have never thought about it and don’t want to start now. They think that if they make a decision not to be resuscitated that their family members will think that they don’t love them.
But sometimes patients have been waiting, oh so patiently, for someone to bring up the subject and be willing to take enough time to answer the questions that they have been afraid to ask. I find that a discussion of resuscitation is best started after I learn about who a patient is and what they have done for a living and what they spend their time doing at home. What were they good at when they worked? Do they have kids or grandkids? Where do they live, do they travel, do art, take care of other people, have pets? It is hard or impossible to help a person navigate the end of life if I don’t know them.
Even though I am a bit biased against intensive and technological medical care, I love actually doing it. The tools of this trade are really clever and the immediacy of the practice is inspiring and brings people together. I have seen beautiful and compassionate intensive care, which makes patients and families feel valued. Nevertheless, there are always the unintentional and casual cruelties of disturbed sleep, needles, boredom, prickly heat, bowel indignities, physical pain and nausea. Death following chest compressions and electrical cardioversion is not peaceful.
When I sit with a person and hear that, no, they don’t want intensive care or cardiopulmonary resuscitation should their heart or lungs cease to work, and it is clear that resuscitation is not in their best interest, my heart feels lighter. I can focus more on what the patient values rather than what procedures are most likely to keep them alive for the longest time.
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.
I asked her what I was doing wrong because sometimes, when I inject Vic and withdraw the needle, blood and/or the injection fluid spews out! Sue explained that it because Vic’s collagen is so poor…. In layman’s terms; the flesh does not “seal” when I extract the needle…. That is why the subcutaneous syringe driver did not work and blood and whatever else spews out.
Vic is such as gentle, beautiful, caring human being. Last night when I gave her an additional morphine injection, in desperation, she said “Mommy, what do poor people do who have no access to pain medication?
As a layman with access to Google I Googled “low oxygen saturation” and nearly had a heart attack of my own.
Basically, a saturation of 97% of the total amount of hemoglobin in the body is filled with oxygen molecules. A range of 96% to 100% is generally considered normal. Anything below 90% could quickly lead to life-threatening complications. The margin between “healthy” saturation levels (95-98%) and respiratory failure (usually 85-90%) is narrow. If oxyhemoglobin is low (below 90%) inadequate amounts of oxygen will reach body cells!
As a rule of thumb, respiratory failure usually occurs when saturation (SpO2) falls to 90%, although some patients with chronic respiratory disease may tolerate lower saturations. http://www.favoriteplus.com/oxygen-saturation.php
By tomorrow afternoon we should start getting the results in from the blood tests and blood gases. In the interim Sue has increased the amount of intravenous anti-nausea medication as well as the pain medication. Dr Sue will make a call tomorrow whether Vic should go onto oxygen or not.
We have cancelled all our vacation plans. We desperately wanted to take the boys away for a couple of days to give them a break, but it is not possible. We will have the best Christmas ever. A Christmas filled with love and togetherness…. Maybe our last.
I have traveled to 50 odd countries. I have filled up quite a few passports. I am a seasoned traveler I suffer from airport rage. I hate the “hurry up and wait” part of travelling. I hate queues and I HATE sitting so close to other people!
I have spent more hours that I care to remember sitting at airports. I love watching families reunite, lovers melting into one another’s arms, fragile old people being wheeled out in wheelchairs to meet their loved ones. I recognize the detached “I am on a business trip” air that the professional travelers have surrounding them.
I have spent a lot of time waiting to be collected, or for coaches, buses and trains. I have seen thousands of loved ones being met with “Welcome” balloons and bouquets of flowers. I do not have a romantic bone in my body. I am quite a serious person who loves deeply without conditions or expectations. I have never been met with flowers or balloons only my name on a hotel ID Board.
This morning when I disembarked the aircraft it was a glorious sunshine day in South Africa. I was one of the first off the aircraft and went through passport control within minutes. I could not believe my luck when I got to the carousal and my luggage was already there! Customs was a breeze. I walked out of Terminal A and no Danie…. I knew he was minutes away from the airport when we landed because I phoned him to tell him I had landed…. He was minutes away from the airport….
I phoned him and there was no reply…. I phoned him three more times and still no reply. I shut my mind down. I did not want to think what could have happened in the 30 minutes since I had last spoken to him. I phoned him again and left a message…. I kept glancing around. A couple of taxi drivers started offering their services.
Then I saw him. My beautiful, handsome husband carrying this huge, beautiful bouquet of flowers! My unromantic heart was touched by this beautiful gesture. It was great feeling his arms around him and hearing him say “I really missed you”.
Vic is looking great. Her pain control is optimal! She is enjoying the pain free time she has been given by Hospice. I missed her so much! I am at peace being home.
Despite the fearful trauma and pain of Vic’s journey we are happy as a family! I cannot imagine going through this painful journey without Danie and his beautiful, wonderful children and our grandchildren. We are a family of love.
when a mother cries
her tears stab at her daughter’s heart
as they plummet to the floor
when a mother cries
he daughter cries too
because her heroine is wounded and she doesn’t know how or why
she cries because she cannot rid her mother of the pain
she cries most of all because she loves her mother
when a daughter cries because her mother cries,
her mother cries more
because her weakness has hurt her child
she cries because it hurts to know she’s the cause of her daughter’s tears.
she cries most of all because she loves her daughter
once the tears have ceased however
love remains
the love forever shared between a mother and her daughter
On the 17th of September Vicky was accepted onto the Hospice program. Dr Sue Walters, the Hospice doctor and Sr Ceza, Hospice Nursing Sister, thought she would die within days. Vic was barely conscious and too weak to walk. Vic was breathing but had already ceased to live!
In two days’ time we celebrate Vic’s “One Month with Hospice” and I think she is getting stronger every day. We still have bad days but her pain control is great! Vic is reasonably mobile; she laughs and spends constructive time with the boys and the family! She is sorting out photos and all sorts of things that she has neglected for months. She is spending less time in bed. She is sleeping less and eating more.
It is as if she has a new lease on life!
Could it be possible that the pain was killing her? Is it possible that the adhesions have stopped their devastating path of destruction? That just maybe the sepsis has cleared?
Vic still needs assistance with basics. Vic could live like this. We could live like this. Please let this continue! Today I pray that this is the case. I pray for a miracle. I pray that Vic is in remission.
Vic's Final Journey 