An update from Jen’s mom (Gabi)
Shoo! It’s been a very hectic time and we are way overdue for a detailed update which Jen has requested I write … so here goes!
Action needed …
The last three months have been worrying, busy and yet exciting times for our family. I have worked solidly to source and acquire what is necessary for Jen. Three months ago, when we realised that Jen was deteriorating regardless of the strict oral medication regime she is on, I reached out across the globe to foremost Pulmonary Hypertension experts in the field. Acknowledged as global “giants” in the PH community, these incredible doctors are hectically busy and sought-after which is why the dedicated commitment and support we have had from them came as such a surprise! Months and months of daily emails back and forth from USA, U K and Australia resulted in a dedicated “Team Jenna” that has grown in depth and knowledge to ensure the very best possible advice, care and treatment for Jenna and others PH sufferers in South Africa.
An expert team…
This finely-tuned expert team consists of two committed and formidable doctors in SA – Prof Paul Wilcox from UCT Academic Hospital (Jenna’s daily care-giver) in Cape Town and Doctor Paul Williams at the MillPark hospital in Johannesburg. PLUS we now have on board the well-known Dr Anne Keogh from St Vincent’s hospital in Sydney Australia; and expert PH Specialist Dr David Badesch from UC Denver Colorado in the States … with guidance and advice from my inimitable (and sadly experienced in this arena) sister- in-law, Shirley, I found these incredible experts, reached out to them with Jenna’s story and began “herding” everyone towards a single goal… getting the right treatment for Jen.
A regular 5-way email ‘info exchange’ group to advise and collaborate on Jenna’s treatment began. All Jenna’s tests, blood reports, X-rays, MRI’s, digital images, medical reports, scans etc were sent around the globe to numerous countries including Paris, the UK, Denver in the US and Sydney Australia. The result was a confirmed diagnosis that Jen has CTEPH – i.e. Chronic Thrombo-Embolic Pulmonary Hypertension. With me coordinating we had UK radiologists guiding a local team at the Constantiaberg on protocols for the very best Pulmonary CT Scan never before done in SA. Unfortunately results showed Jen is not a candidate for PEA surgery… however the fact remains that she needs aggressive treatment not available in SA.
What is required
The express opinion of Profs Badesch and Keogh is that Jenna urgently needs to be on a constant intravenous infusion called IV Epoprostenol / Flolan. Further research presented a few obstacles – Problem 1: It costs over one million rand a year; Problem 2: It’s not available OR registered in SA; Problem 3: It requires Section 21 Medical Control Council approval; Problem 4: Once on it you cannot, ever (not even for a few minutes) come off it so the pipe line of supply needs to be secure and trustworthy; Problem 5: It is complicated, tricky and requires an expert who has worked with the drug numerous times before to titrate the medication.
I had my work cut out for me ….
Hours of research, networking, highlights, disappointments and obstacles have had to be overcome BUT I have excellent news to share … Due to the work Jenna has done to raise awareness of PH in South African, due to her high media profile, due to the song I NEED MORE TIME that has been launched internationally to PH sufferers and due to the dedicated help of Dr Badesch; Dr Keogh and many influential PH Associations around the world we have managed to secure Flolan for Jenna, for AS LONG AS SHE NEEDS IT on a COMPASSIONATE basis from Dr Frank Gray, Physician Lead PAH Global, at Glaxo SmithKline in the UK. We have also managed to acquire Medical Control Council Approval and the local GSK team and Smiths-Medical team are helping me to ensure the efficacy of the pipe line – not only of the medication BUT of the medical disposables (pumps, cassettes, lines, syringes etc) required to go with it. Will every one of the people along the way ever truly know what they done for us … I don’t know BUT when the final piece of the puzzle fell into place with Dr David Badesch and his Nurse Practitioner Debra Zupancic agreeing to travel to SA free of charge to share their expertise and knowledge and oversee the surgery and initiation of treatment for Jenna I knew anything was possible!
The procedure – when and how?
IV Epoprostenol/FLolan requires a surgical procedure to establish a port into Jenna’s lungs for constant access to the new drug which is administered via a pump and cassettes. For most PH sufferers all over the world this medication is readily available and recent research has shown that it can prolong life in some cases for 5 – 10 years! Awesome … this is what we need for our Jen. The procedure is planned for Monday 09 December – Jen will likely be in ICU for a week and then a normal ward for another week — and we hope she will come out in time for a family Xmas with her beloved cousin, Tayla, who is coming from Australia to visit.
Discovery comes on board
Due to Matric Finals the procedure had to be planned for December, which is of course mid-season. Business class flights alone for Dr Badesch and Debra Zupancic cost close on R200 000 … and so a month ago we approached Discovery to ask them to climb on board. I am elated to tell you that as of last week they are officially now part of Team Jenna and are naming right sponsors of the first ever PH symposium in SA funding the flights and have ALSO taken over the costs, organisation and planning of seminars I had planned in both Cape Town and Jhb for Dr Badesch to share his expertise with local doctors, pulmonologists, cardiologist’s and patients. We are delighted that PH sufferers in SA will benefit from the expertise we are bringing here, we are ever hopeful that this will be the start of the PH landscape changing in SA!
Matric and the Herschel community
Despite Jenna’s debilitating illness she won 10 Academic prizes at final Herschel Prize Giving including the prestigious Schonborn Cup for Outstanding Achievement in the face of extreme adversity. On Monday Jen and all her friends begin their Matric exams … this exceptional bunch of girls and boys have literally and emotionally “carried” Jenna through her final year at school. Without their dedicated love, support and incredible friendship Jen could not have achieved what she has – and so we hold these friends in our hearts for the next month as they write their finals and wish them everything they deserve. The Herschel community has been nothing short of exceptional … there is nothing that Stuart West, Lindi Clarke, Paula Sellmeyer, Lethu and her prefect body, all the girls and the incredible teachers at Herschel have not been prepared to do for Jenna … from simple logistics such as building ramps, moving classes, extending deadlines, arranging disability parking bays and carrying Jen or her belongings; to total and unequivocal emotional support for our entire family. Without this incredible community I don’t know how any of us, let alone Jenna, would have managed this year …. how do we thank you?
And so every minute of every day we experience, in a profound way, the value and power of community. If you are reading this then you are a vital part of our journey. No man is an island – not because we are incapable, but because fundamentally we are not supposed to be alone. Whilst we have it deep within us to find what we need to cope – it is only through working and loving together that we will truly thrive and be the best that we can be. It is true that without each and every one of you we would not be able to be doing what we are doing for our Jenna.
With every fibre of our being we thank each and every one of you for your unending support, love and holding. Please light your candles on Monday the 9th for Jen – help us keep her safe with the power of our combined conscious thought and love.
Thank you – From Stuart and Gabi