Toni Linn is a 69 year old woman with a rare medical condition called amyloidosis, a condition where amyloid proteins are abnormally deposited in organs or tissues subsequently causing harm. This condition involves deranged low chain protein metabolism.
She underwent the trauma of misdiagnosis in various health care institutions in Bangkok and India, being treated for various conditions ranging from polymyalgia rheumatic (a relatively common cause of widespread aching and stiffness in older adults), chronic fatigue syndrome to multiple myeloma. At some point, she had a course of cytotoxics (melphalan, cyclophosdhamide and dexamethasone) as part of her management.
She later declined this management citing adverse side effects she experienced that included excessive vomiting, anorexia and alopecia which made her feel much sicker. Her condition deteriorated to an extent that she felt she could succumb anytime. It is at this point that they sought to find help in hospice care.
Through internet search, her daughter found information about Nairobi Hospice and contacted us for help. We made quick arrangements for a home visit.
On arrival, we found the patient frail, cachexic with sacral pressure sores with orthostastic hypotension. She had difficulty in breathing and her voice was hoarse due to viscous phlegm. Her oxygen saturation was 85% with a very low blood pressure.
After a quick assessment by the hospice team, the following procedures were administered as part of the palliative care plan:
- Administration of mucodyne to reduce phlegm viscosity
- Chest physiotherapy plus some additional passive physiotherapy
- Pressure sore dressing with flagyl powder
Within three days, the patient’s quality of life improved evidently from that of being at the verge of death to a jolly lady, working on her laptop, breathing freely with an oxygen saturation of 93%. Linn now uses a commode and has the help of a wheel chair.
There are plans for her to visit a restaurant, which she says she has missed since February 2012.
Nairobi Hospice is one among many hospices that strive to add life to patients’ days, a case that Toni Linn concurs to.
It is not cancer and HIV/AIDS patients only who benefit from Nairobi Hospice’s services but palliative care is also available for those with chronic illnesses, be it amyloidosis as in the case of Toni Linn or other chronic illnesses including, but not limited to liver disease, heart failure, sickle cell anaemia thrombotic crisis. All these can be taken care of at the hospice.
Nairobi Hospice arranges home visits at a nominal charge.
We graciously thank Toni Linn for granting us permission to use his case and more so her name in this article.