PULMONARY HYPERTENSION

“It’s because of patients like Jenna that we’ve been able to improve our treatment for things like pulmonary hypertension”

Resources for PH patients that we found particularly useful:

The Jenna Lowe PH Clinic in Cape Town

The Jenna Lowe Pulmonary Hypertension (PH) clinic is a specialist clinic at Groote Schuur Hospital in Cape Town, South Africa, that was started shortly after her death because of the awareness she had created around PH. It is named after Jenna to honour the large contribution she made to the landscape of Pulmonary Hypertension in SA.

The clinic is held at the Respiratory Clinic in the Outpatients Department at Groote Schuur Hospital every second Thursday. Following his involvement with Jenna Lowe's case, Dr Greg Symons, is the head of the PH Clinic, recognised that there was a desperate need for a specialised clinic for PH patients, so he started the PH Clinic to address this. Each patient with Pulmonary Hypertension has particular requirements for the management of their specific and unique variation of the condition, and the doctors who see patients at the clinic are able to provide this.

Although Dr Symons is the lead consultant doctor at the clinic, there is another consultant doctor and a registrar who see patients in the clinic. The nurses who work in the Respiratory Clinic are members of the permanent staff at the Hospital, and the clinic is also supported by Respiratory Technologists who conduct specific tests on the patients at each visit, to assess their respiratory health.

The total number of PH patients seen at Groote Schuur Hospital is variable as patients' conditions change. Some patients are referred to other clinics in the hospital and some do not develop chronic PH, so are just seen in the clinic while that expertise is needed. The clinic usually has between 6 - 10 PH patients booked on any one day and the goal of the clinic is to assist the PH patients to have the the best possible quality of life.

Although it is not a centre of excellence, due to the lack of access to a full variety of PH treatments in SA, the doctors are certainly working to get there. Sometimes patients are referred to the PH clinic for help, as they are not receiving adequate medication or expertise. The doctors do their best to advocate for the patients negotiate access to appropriate medications, which stabilise the patients and improve their lifestyle and quality of life. One such PH patient was often off sick from work, battling to stay well enough to continue work, and, after referral to the PH clinic, the patients' medications were carefully adjusted which made a substantial difference, resulting in less time off sick and her managing to retain her job.

Jenna Lowe Trust supports the clinic by funding a monthly support nurse, Sister Hilary Barlow, and by funding mobility and oxygen aids which are loaned to patients in order to assist them wherever possible. This may enable a patient to go on outings with their family, visit friends, or go shopping, which makes a huge difference to the quality of their lives.


Patient Empowerment and Medical Resources:

Discovering that you have a rare disease can be daunting and scary, and one of the best ways to counteract fear with knowledge and facts. Although reading up on your illness may be feel overwhelming at first it really is important to know as much as you can in order to empower yourself to ask the right questions, demand the right care and find the right treatments.

There is so much misinformation on the internet, be sure to use credible resources such as:


Nurse Hilary Barlow -
Patient Liaison and Support for The Jenna Lowe Trust

hilbar@mweb.co.za

Hilary trained as a nurse at Groote Schuur and Mowbray Maternity Hospitals. Her nursing experience includes working in Neonatal ICU for more than 20 years, where she helped mothers to understand about their premature or sick new-born babies' diagnoses and ensure the best care for their babies. Her subsequent experience includes Quality Management and teaching postgraduate nursing students for eight years. During Hilary's career she developed a passion for 'CARE' in nursing. Her new role at the Jenna Lowe Trust (Hilary joined us in 2021) as Patient Liaison and Support in the Pulmonary Hypertension Clinic is about helping, caring and supporting patients with Pulmonary Hypertension. We have equipment that we loan to our patients to help them to be more comfortable and offer them better quality of life. We organise and hold support groups and interactive educational meetings, including patients families, who will benefit from better understanding the condition. And we offer help with other necessities that make the patients' lives easier, knowing that the philosophy of the Trust is to honour the exceptional person who Jenna was and to ensure that her legacy lives on in our work.

"It's a pleasure working for The Jenna Lowe Trust and knowing that the work we do really is a making a difference to people's lives. Recently a patient was referred to the PH clinic for help as they were not receiving adequate medication. Our doctors advocated for her and were able to successfully negotiate access to appropriate medications, which has stabilised the patient and drastically improved her lifestyle. Access to treatments is not easy in South Africa, and not always possible, so it is a real win when we are able to get it right, such as with another PH patient who was often off sick from work, battling to stay well enough to continue working despite having PH. After referral to the PH clinic, the patients' medications were carefully adjusted and this made a big difference, resulting in less time off sick and the very grateful patient not losing their job!

The Jenna Lowe Trust also purchases, services and looks after aids such as mobility devices and portable oxygen machines that we loan to our PH Clinic patients to assist them. These can be really life-changing for patients enabling them to go on outings with their family, visit friends, or go shopping, all things that they otherwise would not be able to do. It makes a marked difference to their lives."

Nurse Hilary Barlow Patient Liaison and Support for the Clinic

hilbar@mweb.co.za

The goals of the clinic:

  • To provide good quality care for the patients so that they can live a full life
  • To support and educate patients and to ensure that their questions and conerns are dealt with
  • To provide education to patients so that they have a good understanding about the conditions and are able to care for themselves appropriately
  • To give support and to educate patients' families, particularly in the case of younger patients e.g. teenagers.
  • To start and continue to build up a comprehensive Jenna Lowe PH Database Registry for Africa
  • To support and further educate registrars on the topic of PH

How and when to get in contact if you think that you need help

As Groote Schuur is a Government Hospital, the correct process should be followed for referral to the PH clinic at Groote Schuur Hospital. A patient who identifies that their symptoms may be considered to be PH should visit their GP or local clinic, where a doctor will assess them. If the doctor’s assessment indicates that the patient needs further investigations, they will be referred to a Hospital for more detailed assessment. After this has been done, if appropriate, the patient will be referred to Groote Schuur’s PH clinic for assessment and management.

Ensure that the correct process is followed as far as referral of patients is concerned. Don’t try to ‘jump the queue’ as patients must be referred for care through the correct channels.

Patients should attend the clinic on the date of their appointment. If there is a problem then they should phone the clinic to change the appointment a few days before the appointment.

How to help / support the clinic

Help us support and improve the lives of PH patients at the clinic by .  Help us raise awareness of this little-known illness by sharing information on PH and the clinic to help people get diagnosed earlier! Go to the HOW CAN I HELP page to see the other ways in which you can support the Jenna Lowe trust.

Clinic support for registrars - education around PH

Registrars are qualified doctors who are specialising in a certain field of Medicine. The registrars in the PH clinic may be doctors specialising to become physicians. There may also be qualified physicians who are further specialising to become Pulmonologists – a specialist doctor who cares for patients with problems with their respiratory system. These doctors are studying through The University of Cape Town and are taught by the consultants in the wards and in the clinic. While specialising, the doctors must undertake research and publish their findings in medical journals and conferences.

Did you know?

Did you know that Groote Schuur Hospital is the only Government Hospital in South Africa where lung transplants are done? This too began a few years after’s Jenna’s death and extensive awareness campaign for organ donation and transplant.

Patients who have had Covid can develop PH. It may also develop in patients who are HIV positive.

Quick facts - Things you need to know

Organ Donation Image

Organ Donation

Even though SA is the home of the first ever heart transplant less that 0.3% of our population are organ donors. On any one given day there are at least 4,300 people awaiting an organ transplant. It is quick, easy and costs nothing to become a donor. Your organs could save up to seven lives when you die.

Rare Diseases

Rare Diseases

Did you know that over 7,000 different rare diseases have been identified to date, directly affecting the daily life of more than 350 million people worldwide? The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Society of SA has become a crucial source of information, experience and resources for families affected by rare diseases in South Africa.

Pulmonary Hypertension

Pulmonary Hypertension

Pulmonary Hypertension is a progressive, degenerative disease caused by the narrowing or tightening of the veins and arteries in the lungs. Common early symptoms of PH include: Breathlessness (particularly during physical activity); excessive fatigue; dizziness; fainting; peripheral oedema and chest pain (particularly during physical activity).

Quick facts
Things you need to know

Organ Donation Image

Organ Donation

Even though SA is the home of the first ever heart transplant less that 0.3% of our population are organ donors. On any one given day there are at least 4,300 people awaiting an organ transplant. It is quick, easy and costs nothing to become a donor. Your organs could save up to seven lives when you die.

Rare Diseases

Rare Diseases

Did you know that over 7,000 different rare diseases have been identified to date, directly affecting the daily life of more than 350 million people worldwide? The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Society of SA has become a crucial source of information, experience and resources for families affected by rare diseases in South Africa.

Pulmonary Hypertension

Pulmonary Hypertension

Pulmonary Hypertension is a progressive, degenerative disease caused by the narrowing or tightening of the veins and arteries in the lungs. Common early symptoms of PH include: Breathlessness (particularly during physical activity); excessive fatigue; dizziness; fainting; peripheral oedema and chest pain (particularly during physical activity).

How to Help - Make a difference right now

Buy The Jenna Lowe Book

Buy the Book

Kristi Lowe's Music Album

Download Kristi's Music

Register to Become a donor

Register to Become an Organ Donor

Add yourself as a MySchool  Beneficiary

Add the trust as our MyShool Beneficiary

Donate to the Jenna Lowe Trust

Donate to the Jenna Lowe Trust

How to HelpMake a difference right now

Buy The Jenna Lowe Book

Buy the Book

Kristi Lowe's Music Album

Download Kristi's Music

Register to Become a donor

Register to Become an Organ Donor

Add yourself as a MySchool  Beneficiary

Add the trust as our MyShool Beneficiary

Donate to the Jenna Lowe Trust

Donate to the Jenna Lowe Trust

PROUD TO
PARTNER WITH

UCT Private and Academic Hospital
Organ Donation Foundation
Millpark Hospital
Rare Diseases South Africa
PVRI

Proud to partner with:

Rare Diseases South Africa
Organ Donation Foundation
PVRI
Millpark Hospital
UCT Private and Academic Hospital

PROUD TO
PARTNER WITH

Rare Diseases South Africa
PVRI
UCT Private and Academic Hospital
Organ Donation Foundation
Millpark Hospital

The story behind Jenna and Krisi Lowe’s song ‘I Need More Time’

Less than 1 percent of SA population are organ donors

Watch how Jenna Lowe’s Get Me To 21 campaign continues after her death