In the early hours of the morning I wrote a letter to a very popular radio station in Gauteng (South Africa). 94.7 http://www.highveld.co.za/events/events/christmaswish2011/index.asp 94.7 have a Christmas Wish List.
Each year, the 94.7 Highveld team tries to make a few lives a little easier during the festive season by finding sponsors to assist those who are in desperate need.
Listeners are asked to nominate the people in their lives who could use a break, and two of these are granted each morning for four weeks. I decided to write a letter and ask for help for our Hospice project that will kick off on 1 January 2013 with limited resources.
I hope and pray Stepping Stone Hospice will be selected and that pharmaceutical companies will sponsor the pain medication for the indigent people. Please hold thumbs with us that this will work!
My name is Tersia. My 38-year-old daughter is terminally ill.
Vicky suffers from Osteogenesis Imperfecta, a brittle bone disease. In people with Osteogenesis Imperfecta, one of the genes that tell the body how to make a specific protein does not function. This protein (type I collagen) is a major component of the connective tissues in bones. Type I collagen is also important in forming ligaments, teeth, and the white outer tissue of the eyeballs (sclera).
As a result of the defective gene, not enough type I collagen is produced, or the collagen that is produced is of poor quality. In either case, the result is fragile bones that break easily. Collagen in the body is what cement is in a building. It keeps the tissue/bricks together! Vicky has poor quality collagen.
Vic has a very bad spine. Her neurosurgeon decided to do experimental surgery in 2002. “The Prodisc (Total Disc Replacement) is an implant designed to mimic the form and function of a healthy intervertebral lumbar disc. It is implanted during spinal arthroplasty after the diseased or damaged intervertebral disc has been removed. The goal of artificial disc replacement is to alleviate the pain caused by the damaged disc while preserving some or all of the natural motion of the lumbar spine. By preserving the natural motion, it is hoped that the adjacent levels of the spine will not be subject to additional stress as they are in traditional fusion surgery.” http://www.spine-health.com/treatment/artificial-disc-replacement/fda-approves-prodisc-lumbar-artificial-disc;
Vic had the Prodisc procedure on Wednesday morning, the 13th of February 2002. The operation was scheduled to last “two hours and thirty-seven minutes”. Six hours after Vic was pushed into theatre we were told that she is in recovery. Vic would go to ICU for “pain control”.
She was pretty out of it the entire Wednesday and Thursday. Friday Vic was conscious and in dreadful pain. No amount of morphine brought her pain relief. Her face and nose itched in a reaction to the morphine. Vic was losing her mind with pain.
Early Friday morning I cornered the surgeon. He said she is fine. I kept badgering the ICU staff to increase her pain medication. I pointed out that her heart rate was elevated and she was running a temperature. Her breathing was shallow and fast. If it was today I would have recognized the danger signs.
That evening I was too scared to leave. My child was in trouble. Just after 8pm the doctor came and spoke to me. He explained that Vicky’s tissue is extremely poor (surprise surprise!!) and that there was a small chance that her bowel may have been perforated. The X-rays did not show up anything but my concern had “alarmed” him.
At 9.30 pm Vic was pushed into theatre again. Eleven hours later she was rushed back to ICU. Sunday the 17th of February Vic went back to theatre for a further 9 hour surgery. She came out ventilated.
She spent 22 days on the ventilator hovering between life and death.
Doctor arrogance and negligence has led to 10 years of sheer undiluted hell and misery. The Prodisc was never removed. The Prodisc is systematically spreading sepsis to Vic’s intestines. As a direct result of the blotched back surgery Vic has had 81 abdominal procedures over the past 10 years. She now has a frozen abdomen, battles obstructions and fistula, sepsis and Addison’s disease. The doctors have said they can do no more for her.
Vic is now under Hospice care. She suffers terrible debilitating pain and often fractures vertebrae when vomiting… Vic’s organs have started shutting down. She is in renal and hepatic failure.
Vic and I share a dream of starting a Hospice in Alberton. Alberton does not have a Hospice and falls under Hospice Witwatersrand. It is far, and the townships i.e. Palmridge, Thokoza and Edenpark are not serviced at present.
It is a sad fact that only 5% of South African’s are able to die a “good death”. 95% of the population will die in excruciating pain.
The World Health Organization describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (WHO 2002)
We have registered a Non-Profit-Organisation and are in the planning stages of starting a Hospice in Alberton that will provide palliative home care to all residents in Alberton that need our help. We have approached one of the caregiving associations in Alberton to see if they could provide us with space to operate from. I have no doubt that we will have community buy-in if we are able to create palliative care awareness. We aim to start operating as Stepping Stone Hospice & Care Services by February 2013
Stepping Stone Hospice & Care Services Mission Statement
Adding life into days when days can no longer be added to life.
Stepping Stone Hospice & Care Services is a not-for-profit organization dedicated to providing comprehensive, compassionate services to patients and their loved ones during times of life-limiting illnesses.
Since dying is a part of the normal process of life, the focus of Stepping Stone Hospice & Care Services is to enable our patients to live as fully and comfortably as possible, to provide dignified palliative care, to assist patients’ loved ones in coping with end-of-life issues and the eventual death of the patient, and to improve care for all patients at the end of their lives by example and education.
Stepping Stone Hospice & Care Services’ goal is to provide physical, emotional, and spiritual comfort. Stepping Stone Hospice & Care Services’ exists in the hope and belief that through appropriate care, education and the promotion of a supportive community sensitive to the needs of the persons facing the end of life, patients and their loved ones may be able to obtain physical, mental, and spiritual preparation for the end of life, bereavement and renewal.
Stepping Stone Hospice & Care Services believe that Hospice care should be available to any and all persons with a life threatening illness for which there is no cure or for persons who elect not to attempt a cure, resulting in a limited life expectancy.
We are hoping that Vic will live to spend another Christmas with her two boys and the family. I pray that she lives long enough to see her dream come true. Please help make her dream come true…
We ask nothing for ourselves as a family. We do however seek your kind consideration for assistance in any form that will enable us to provide palliative care to the 95% of dying community in Alberton.
We need equipment such as wheelchairs, subcutaneous drivers, oxygen measuring equipment, walkers etc.
If there is any way you are able to help us we would truly appreciate it!
No-one should be denied the right to die a “good death”
I am blogging Vic’s Final Journey. I blogged on palliative care in this post https://tersiaburger.com/2012/09/17/pain-keeps-you-alive-2/ and about Vic’s compassionate nature https://tersiaburger.com/2012/11/14/a-night-out-of-hell/. If you are in doubt about whether this is a worthy cause please read some of the blog. I am not seeking publicity for my blog – just help!
Thank you for the wonderful work you do in helping the community.
A blessed Christmas to you all.
Tersia M Burger