'My heart led me to palliative care'
“I had so much planned for the future, I had a vision for my children and then suddenly I am staring death in the face and wondering…how are my children to grow up without me?”
These are the words shared by fifty-year-old Grassy Park resident, Murshied Yaghya, a palliative care patient who received a heart transplant last year. In September 2017, Mr Yaghya was diagnosed with a heart condition and was told by doctors he had four months to live.
“I didn’t even know that I had had a heart attack in the first place, I thought it was the flu and after three visits to the doctor I was referred to Victoria Hospital where I was informed of the heart attack and told that I had water on the lungs. It was so severe I couldn’t lay flat at all, as the amount of liquid in my body made me struggle to breathe and at times it felt like I was drowning."
Mr Yaghya spent eight weeks in hospital and after the ordeal was left with 22% of his heart functioning optimally. It was there he was introduced to the Abundant Life Palliative Care Centre – a palliative care service run by Victoria Hospital and spearheaded by Dr Clint Cupido.
The Western Cape Government health offers palliative care alongside curative care. This service is for patients with life-threatening or life-limiting conditions, for example renal failure, cancer or resistant TB. Palliative care empowers the patient and the family. Support for the management of the patient’s condition is given so that patients and their families feel equipped to manage their situation themselves without having to rush to the Emergency Care. It also means they have a good relationship with the treating physician and feel supported and empowered with the knowledge and skills to support their loved one.
Palliative care also offers bereavement support to a dying patient’s family and prepares them for when their loved one dies. It is not a separate service or approach, but part of the way Western Cape Government Health aims to deliver a patient-centered service. Partner funded organisations assist with palliative care as in the case with hospices or step down facilities. Palliative care includes paediatric palliative care to children (and their families) who have terminal or serious conditions.
Mr Yaghya recalls how he would notice doctors visiting the patients and entering into discussions with each other.
“During their rounds they would discuss the type of care given to patients, make notes and it would seem so intimidating, having people discuss me! However, once I met Dr Cupido and he explained to me the role of palliative care, I understood it was his job to train his staff, and he did it to the best of his ability. Ultimately sharing his treatment plan with the other doctors enabled them provide me with the best possible care.”
Mr Yaghya soon signed up for the Tuesday Palliative care clinic where students would consult patients around the prognosis under the guidance of Dr Cupido. This is when the recommendation came for a referral to Groote Schuur in order to begin the process of application for a heart transplant.
“In 2018 I went to Groote Schuur and I was informed of the process, of all the pros and cons. In fact there were more cons than pros….but ultimately to be alive was my main focus.”
Mr Yaghya was found to be a suitable candidate for a heart transplant and so the wait began, not knowing whether a heart would become available. It was exactly one year from his admission to hospital for heart failure that the call came.
“I stood on the doorstep of a family member’s home I was about to visit when the doctors called me to say they have a heart for me. I needed to be at the hospital in the next hour. I went home, I broke the fast with my family and as we sat around the table having supper, I shared the news that I would be going in to hospital that night. It felt unreal, having to be honest and say that I may not make it….we had to say our goodbyes and pray for the best.”
The seven hour long operation was successful. But the journey for Mr Yaghya didn’t end there. The next two years saw frequent hospital check-ups to monitor blood pressure, blood levels and undergo biopsies. His journey with palliative care continued. “I was in bed for two months after my operation, taking my time to recuperate. When I started walking again, Sister Jenny, one of the Abundant Life counsellors, phoned and invited me to support their group sessions. At first I went alone, now my wife is more involved than I am!”
Sharing about what palliative care means to Mr Yaghya and his family he says: “If it wasn’t for palliative care, I wouldn’t have gone through this process. While I was at Victoria Hospital, the guidance and care shown, the referral to Groote Schuur for the heart transplant, all of this has made the difference. At first, while in hospital, I wasn’t interested to begin with. I kept on thinking the worst, I already had a mind-set that palliative care meant death.”
Mr Yaghya shares that when he finally decided to open up, he understood that the staff were there to encourage him, and motivate him. It is this mind-set Mr Yaghya is seeking to change.
“When I started attending the support sessions, I chose to use the platform to encourage other patients and their family members."
The support sessions run by Abundant Life have been a source of education and guidance for its members.
“Many of our members have better, fuller lives just by listening to each other’s advice. Doctors will come and share medical guidance. We share information for the most part. So this form of educating helps us to apply what we have learnt. In the end you learn so much more about your illness and what others experience.”
World Palliative Care Day was commemorated on Saturday, 12 October, with the theme, “It’s my right, It’s my care.”
“Essentially this means as a patient everyone has the right to palliative care. Ten years ago we started journey and we are excited that within the Western Cape and South Africa palliative care has become the buzz word,” says Dr Cupido.
He believes that Western Cape Health and its partners, such as The Hospice Palliative Care Association (HPCA) and universities, have achieved a lot in the past ten years and he urges patients with life-threatening or life-limiting conditions to consider palliative care.
“This form of care helps patients to build confidence, be positive and to be empowered to manage their condition with dignity,” says Dr Cupido.
Communications Officer: Southern Western Sub-structures
Department of Health
Western Cape Government
Tel: 021 202 0947
Mobile: 081 277 0516