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?
An Epiphany
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
You are all so unbelievably inspiring. Ecstatic to hear that there’s movement forward! Sending massive love to the fam and all involved.
Loads of love being sent from our side, haven’t seen all of you in ages! Miss all of you tons and all this news is wonderful for Jen. You are all incredibly strong, loving, kind and amazing,
thank you.
Sjaan xx
Gabi and Stuart, I finally managed to stop long enough to read this post, and I am sitting here with tears in my eyes and a heart which is about to pop!! I am blown away by what you have been able to achieve for Jenna, and for the knock on benefits for the rest of the sufferers in SA. I wish you all everything of the very best in what has been planned. I will most certainly be lighting a room full of candles on 9 December, and sending out as much love and prayer as I know how. I stand in awe of your achievements and passion. tons of love to you all. xxxxx…..xxx….
it is enheartening following this trial & tribulation. with all our love jenna can only be a winner, again, which is what she does best:
W I N!
so we are, I’m sure I speak for millions of us, right here behind you, with you, especially on Dec 9, ready to celebrate with you your life and we pray for your safety
till then
Such great, great news!
Well done on all of your hard work, Gabi!
Your family is a true inspiration in the way in which you support not only Jenna but the whole PH community.
Big blessings.
Gabs, you all are such fighters and such an inspiration to us all. What “Team Jenna” has organised is truly amazing. Our thoughts and prayers are with your family always and we look ahead with positivity and success. Stay strong! Lots of love to you all, Mxx
My darling Gabs and Stu. You are nothing short of incredible. I am overwhelmed by what you have achieved and profoundly moved by the kindness and support you have received. You are more than deserving and I bow to you. Much love and support. Lani and Rich
Absolutely remarkable.
wow this made me cry a lot ~ a mother fighting like a tiger for her daughter’s life ~ it humbled me ~ i will most certainly light a candle on the 9th xxxx
Gabi for President!!! x
I can only echo what Linda says above – I am in such awe of all your family has achieved, and you will ALL be in my thoughts on Dec 9 – as well as for those Matric finals!
Thank you for this letter and your detailed update of so many facets yet semiously told in one breath – Wow Gabs/Stu just remarkable what you have put together here, moved mountains changed the flow of rivers and building new cities it seems, I know what this has taken and want you to know how proud we are of you.
Hope you are getting some sleep in preparation for 19th birthday celebration (gosh and exams) never one thing at a time is it
So much love xx
Sending love and hugs all round. Gabi, you are inspirational! Thinking of you…xx
To my darling sister and the entire Lowe family, what you guys have gone through first with Nathalie and now Jenna is exceptionally trying. The way you have dealt with these life altering experiences is awe inspiring. It’s a lesson to all of us about what can be done in times of need and not taking ‘no’ or ‘it can’t be done’ for an answer.
We think of you guys every day and are with you in mind and spirit. Love you always. Xxx
Gabs, thanks so much for posting this update as no matter how many times I hear your updates, it is tricky to comprehend it all and to be able to read your journal has made it all crystal clear. It is an epic story of courage, conviction and collaboration.
You are truly amazing Gabs and I agree … GABI FOR PRESIDENT!
With you all through thick and thin and will be there for you on the 9th to support you all.
Love you sooooo much,
Al
xxxxx
Words cannot express my admiration for what you have achieved, not only for Jen but for other PH sufferers in SA. You are all a total inspiration, my thoughts and prayers will be with you on 9th December. Love xxx
This is truly inspiring for a PH suffer myself.
I too went through the struggles of finiding the right connections and alas with the help of my family we did. I have been living with PH for 7 years and still going strong.
Stay strong and dont give up- You have done such a phenominal job not only for Jenna but for all other PH sufferes. Thank you and Good Luck!
You are all in my prayers.
Nicole
nics.10@gmail.com
And so the tears flow – some of sadness – that you all should have to cope with this and most of joy – that you are all so brave and focussed. Lots of love to all of you. Kath and Steve
Dear Gabi and Stuart, what an unbelievable journey you guys have travelled and are still travelling. I have so much respect for what you have achieved and I know will still achieved. It is many years ago that I last saw the two of you yet I still feel close and connected. I wish you and your incredible family all the beat for the future.
Gabs and Stew, you two are nothing less than incredible, let alone what Jenn is. I read your updates with a HUGE lump in my throat and you and the family are continually in our thoughts. Lots of Love Spiro & Renee
There are no words to commend you higher Gabi and Stuart – Gabs this is an unbelievable achievement. I stand in awe of you professionally and emotionally. As a parent, I cannot imagine your agony – as a family friend I can only tell you we have suffered with you all and sendgood and positive, but, primarily, loving thoughts and prayers continually and good luck. We hold you all in our hearts.Annie, Melvyn and all the Wallis-Brown family.
Nothing can match a mother’s love, I am humbled to read this. May you all have nothing but strength in the days ahead. New Jersey, USA.
May the Master of the universe smile upon you
Love B
You have strength and courage that I can only admire. You never give up and never say its all too much. Al of you are a true inspiration. Im sending my love and prayers and want you to know that I think of you daily
Lots of love
Santa
Dear Jenna and Extended Lowe Family,
I got diagnosed with Primary Pulmonary Hypertension on the 19th of September and can relate to so many of the emotions and trials you describe on this site. I am 28 years old, living in Johannesburg and up until 6 months ago, I was fit and active with a long list of future endeavors that I took for granted at the time. I also don’t “look sick”, but no one can really understand the challenges unless they have witnessed or experienced it first hand.
I just want to thank you all for the amazing efforts to bring up-to-date treatments and awareness of PH to SA! In your campaign you are giving renewed hope to so many.
Keep strong and God bless,
Starese
Ditto to Ali’s post. Thank you for the update Gabs. You are the MOST incredible family on my planet! Dec 9 is my Dad’s birthday so i just know it is going to be an enormously good day for all. Lighting candles and holding you all in love and light xxxxx
Hello Gabi and family
Many more life blessings have been experienced and past since we shared our Matric times together hey! Shoooo indeed!
Thank you for your gift of the powerful grace you and your beautiful family share as you engage with such fierce love the adversities of Jenna’s illness.
I shall be adding my candle to what I can imagine will be a huge bright light from many other loving burning candles on the 9th, willing you Jenna all success for your operation.
Yes, may we people, creatures, trees and our mother earth continue to thrive and be our best through community of working and loving together, for the well-being of all!
With love and great admiration
Bronwen
Dear Stu, Gabs , Jenna and Kristi,
You are all truly admirable individuals. Your get up and get -it done attitude is what it’s all about and so many PH sufferer’s will benefit from your incredible tenacity. Dean & I will light a candle on the 9th and harness all the good energy possible for Jenna.
Holding you all in our hearts.
Sarah & Dean.
XXX