Before the storm From Gabi Lowe (Jenna’s mum) Its June 2014 already and way too long since I blogged.
This been a year of extraordinary challenges and adapting to the Flolan has been a big part of this. Flolan is only one of the 8 medications Jenna takes every day but it is far more invasive than the rest. It’s a constant intravenous infusion that goes directly into Jen’s right heart chamber via a central line and a pump that runs nonstop. It is labour intensive – mixing, changing cartridges, lines and dressings and the daily preparation routine takes at least an hour every morning. The medication must also be kept cool at all times with ice packs and Jen is constantly attached to that pump. Then there’s the job of ensuring every single part required to make the meds and run the pump is available all the time – most components, including the medication, come in from all corners of the globe which requires a large amount of paperwork and attention to detail. Especially as there are 12 – 16 week lead times and permission required from the Medical Control Council every single time. For Jenna to be off the Flolan for even a few minutes would be life-threatening. Lots to adapt to, yes, but I guess adapting to the stress of it was the hardest – there is no room for human error and that is scary, very scary. Living with that responsibility and the fear that goes with it has been a large adjustment for Stuart (Jen’s dad), Lizzie (Jen’s nurse) and I. Flolan, however, was not the only challenge that 2014 has presented. Making the shift from Matric a (a kind, personal and nurturing environment) to University of Cape Town (a large campus with over 40 000 students) is a big change in any students’ book, never mind when you have the additional challenges of being on a mobility scooter, on oxygen 24 hours a day and you are constantly exhausted (PH will do that to you). Jenna took it on with courage as usual, but by the end of the second term a deterioration in her health meant she was simply not able to attend campus any more. Regardless of our continuous fight over the last two and a half years to bring in and have access to every single possible therapy and medication Jenna needed, she continues to worsen and is indeed an enigma to some of the very best doctors in the world. It was with relief that we heard that Prof David Badesch (expert in PH from the USA) was returning to South Africa at the end of May. We immediately made a plan to meet him with Dr Paul Williams in Johannesburg so that Jen could have a follow-up. We also arranged that a few new patients (who made contact over the past few months due to Jen’s awareness campaign) fly to Jhb to have access to these experts as well. This appointment took place a month ago at the Milpark Hospital with Dr Paul Williams, Prof Badesch and unexpectedly the welcome addition of Prof Nazreena Galie, a specialist PH cardiologist from Europe. We were extremely blessed and grateful to have all this knowledge and experience in one room … but this is where the next challenge and adjustment presented itself. As a result of her deterioration and with immediate effect Jenna has been actively listed for a bilateral (double) lung transplant. She is no longer going to campus and has had to take a Leave of Absence from UCT for now. For someone as academically driven as Jen (yes, she was still achieving ridiculously good results) this has been a major adjustment. However the severity of her condition now precludes her from doing many outings and the truth is that Jen spends about 60% of her day sleeping. It has been a shock to adapt to the news of the transplant and at first we were reeling. I must admit that first time I ever heard or read the words “double lung transplant” I felt ill, and yet here I am wishing and praying with all my might for the ideal set of healthy lungs, the perfect match for our Jen. Lung transplants are tricky and complicated, with survival statistics that are scary to read about… a heart transplant is a much easier, more common and more successful operation. But our Jen has a good chance of doing really well – she is young, every other part of her body is totally healthy and she is not in heart failure (most PH patients who are this symptomatic and short of O2 would be by now). Her heart is under stress, yes, but it’s not in failure and this will be to her advantage during surgery. Jen must stay on all her current medication, including Flolan, until she is literally wheeled into surgery at the Milpark Hospital in Johannesburg. The transplant will take place in Johannesburg, (no one does them in Cape Town) and we have 6 hours to get there once we get the call! When? What I wouldn’t give to know the answer to that question … it could take weeks, months or literally years to find the right donor. Once surgery has taken place then Jen needs to stay close to the hospital for 6 months to a year…. So like it or not, Johannesburg here we come. Yes, more adjustments and challenges headed our way — think about it. You can plan, but you can’t activate anything as nothing is certain. The layers upon layers of impact are huge, not least of all for Kristi, Jenna’s 16 year old sister, who doesn’t want to leave Cape Town, or her friends, or her horse or her animals but cannot bear being parted from Jenna and us either. There is SO MUCH to work out. Some very important details have been put in place though … thanks to Jonathan Ackerman we have a mercy flight to Johannesburg sponsored by the Ackerman family on standby that will get us there in time and be able to fly at an altitude that won’t endanger Jenna. This is a HUGE worry off our shoulders – how do you thank someone for a gift as huge as this? Our dear Niqui Du Plessis has offered us her home for the first month – it is only 10 kilometres from the Milpark Hospital and she is willing to move out at a moment’s notice and vacate her home for Stuart Kristi and I (yes, the world really does contain living angels). Kristi’s headmaster, Stuart West, has arranged a fantastic school in Johannesburg to welcome her with open arms if and when the time comes, and we have numerous incredible neighbours who have offered to check on the house, walk my dogs, feed the bunnies and generally help out wherever and however they can. There is still SO MUCH MORE to organise but in the meantime Jenna is at home – all therapies now come to the house from rehabilitative yoga, to rehab cardio and other support. We also have the challenge of getting her BMI up to give her a better chance post-surgery. Not an easy task! Even though we feed her about 6 times a day she still doesn’t gain weight but we continue to try with the help of Andi Foulkes from Dish Food and Social and our beautiful circle of friends who drop off delectable tempting dishes on a weekly basis. Close friends are welcome to visit but it is imperative that I keep Jen away from infection so if you have even the first inkling of a cold you need to wait it out first. Jen is doing a lot of reading and resting in her bedroom but our friends Nici and Gregg from Nicolwood have helped Jen to design a day bed with a difference that we can put in the lounge complete with plug points, storage space and shelf space for books, tea cups, food and laptops. This should help Jen enormously to be part of the action and stationed centrally, but comfortably with all her needs taken care of, in the middle of the house rather than isolated in her bedroom.
My family; my brother Craig, his wife Margo and their gorgeous kids Nic and Tayla; are travelling as we speak across the globe from Sydney Australia to visit with us for three weeks and to see Jen. I cannot wait – it will be so wonderful to have some quality family time together. And Daniel, Jens wonderful boy, is travelling from New Zealand in the middle of a year of “stooging” to visit for a month so I know we have some fun times lined up.
The hard part will be when everyone has left and we sit and wait and wait and wait … the quiet before the storm so to speak…