Written with permission by Gabi (Jen’s mom)
Jenna has been discharged from hospital and is sleeping in her own bed! Given the extreme levels of complexity around beginning this new treatment home is by far the best and safest place for our girl at this time as it is a totally controlled environment.
This has been a truly “international” team effort with the supervising Expert and Nurse Practitioner team from Denver, USA; the drug (Flolan) from the UK; the long list of equipment and key consumables required for each day from UK and Sydney, Australia and SA; and the local team of doctors, nurses and therapists along with another long list of consumables required for Jenna’s daily care in Cape Town, South Africa.
Only the super human efforts of everyone involved; a few miracles thrown in, and the game-changing leadership and compassion of people around the world has made this possible. This an important treatment for PH patients all over the globe and through the circle of excellence caring for our precious Jenna, it is being performed in South Africa for the very first time with the full intention of opening a pathway for other SA sufferers.
Our heroes, and highly regarded experts in this rare (and frighteningly mis-diagnosed)disease, Dr. David Badesch and his Nurse Practitioner Debra Zupancic were in Cape Town, guiding Jenna and all those involved in her care through every step of the nerve-wracking journey to initiate treatment of Flolan.
Our heartfelt thanks and gratitude to all at the UCT Academic Hospital in Cape Town for their crucial role in the opening rounds. Jenna remained stable and safe through the surgery to establish the central line that allows permanent and ongoing access to Jenna’s body for the administering of the Flolan. Through the two days and nights in High Care, Jenna was connected to the pump and the infusion was started… we are relieved beyond words that Jenna has been able to tolerate the introduction of the magic potion albeit that it is in minute doses at this moment in time. We will very slowly up-titrate the dose every few days … the side effects are many and some painful, as they become tolerable so one ups the dosage again. It could take as long as 8 months to get to the Jenna’s full dose.
We all have a lot to come to terms with but our Jen is one exceptional young lady who has demonstrated extraordinary inner strength and profound courage and dignity and grace through this time. Throughout her stay in high care she was quick with a smile and polite banter for the nurses no matter how much pain she was in; was totally involved in her own care and yet respectful at the same time. The team they soon learnt never to check vitals without sharing the information with Jen … this patient is no victim. There was also a hard to manage constant stream of fascinated nurses and doctors that Jen tolerated with dignity. She fielded many a difficult and complex medical question often correcting assumptions and sharing her expert knowledge and detailed understanding of her condition in an erudite and polite manner. She also showed a burning desire to be fully informed and involved in her own care at all times – something that impressed and totally charmed Dr Badesch and Nurse Debra who both admitted to becoming emotionally connected to Jen in an extra-ordinary way and who were often heard to say “you’re good … she’s ten steps ahead of us that one!”
There is no doubt that Jenna has earned the respect of everyone who knows her and many that have never met her. Now it is a question of slowly and painstakingly upping the dose – there are daily challenges and a great deal that Jenna and all of us (her caregivers) must adapt and adjust to as we work to find a new normal and have all the right protocols and back up plans in place.
We have reinvented the small room opposite Jenna’s bedroom into a “drug den” – a facility uniquely equipped to manage the intricate 35 step process required to mix her drugs every day. It has been pretty overwhelming and intimidating as there has been a lot to learn and master in a very short time… one cannot afford to make a mistake! All mixing and changing of cassettes, pumps, lines and dressings are done daily between 8.30 and 10.30 am so if no-one answers calls during this time that is why!
Thank you to Melissa Brake, Karen Turnbull, Carlie Sutcliffe and Sue Cooper for what was I believe the most beautiful and powerful meditation many have ever experienced on the 9th. Thanks also to Stuart West, Chaplain Bob and our beautiful Herschel community for the incredible prayer group held at the school on the 9th … it is becoming increasingly clear that the power of collect consciousness really works!
Thank you again for helping to hold our girl safely and for remaining at our side … it is SO good not to be alone.
With much gratitude and love
Gabi and Stuart on behalf of Jenna