Jen,” said Prof., “you have to take it easy. Absolutely no exercise. And regular blood tests. You need to be consistent with your medication and have lots of rest. You will come to me for an appointment next week.” He knew he could rely on her to be compliant. We packed up Jen’s things fast and took her home before he changed his mind.
Jenna stayed in bed for a while, and we monitored her symptoms carefully. She was coughing a lot and complaining of what she said felt like pulled intercostal muscles, at the back of her lungs. We seemed to be managing it until after a few days she coughed up blood. We went straight back to Prof. He was concerned that despite her INR levels being between 2.4 and 3.2 this may be another embolic episode. It was decided to keep her INR levels even higher. Around 4, if we could. He further increased the dose of Warfarin and monitored her INR very carefully with blood tests. The coughing started to settle down.
Jen could not wait to get back to school. She was concerned about the amount of work she was missing and really wanted to see her friends. She started with half-days, taking work home in the afternoons. Kristi was so happy to have Jen on campus; at last they were together, albeit in much different circumstances than expected. They spent breaktimes chilling under the trees with Jen’s mates.
I was on top of the medical regime, at times deeply worried and at others optimistically hopeful that this would pass. Even though her diagnosis was not yet finalised, Prof. Wilcox had spoken often enough of suspected pulmonary hypertension for me to know it was time to get to grips with what PH was and do some in-depth research. I started Googling and reading through medical journals. PH sounds pretty innocuous, right? Well, it’s not. In fact, what I came face to face with was pretty horrifying.
Pulmonary hypertension is a complex and commonly misunderstood disease.
A rare and life-threatening lung disease, pulmonary arterial hypertension (PAH) is when the small veins and arteries of the lungs become damaged and constrict, making it very difficult for a patient to oxygenate their body.
A quick biology lesson in case you have forgotten:
“The heart and lungs work together to carry oxygen throughout the body. The heart is a muscle made up of two halves that pumps the blood. As deoxygenated blood returns from the rest of the body, it first goes into the right side of the heart, which pumps it into the lungs. The lungs take carbon dioxide from the blood – which the body releases as you exhale – and replace it with oxygen that you have inhaled. After the blood picks up the oxygen, it is considered ‘oxygenated’ again and is ready to go to other areas of the body. The blood then travels from the lungs into the left side of the heart. The left side of the heart then pumps the blood to the rest of the body. This process starts over again with each heart beat.”1
I scoured through the material, sharing it with Stuart. The information was always carefully worded – “It is complex …” “There are treatments available …” “Each case is unique …” – and densely populated with medical terminology. I was looking for the bottom-line. Some of the words that kept jumping out at me over and over again were the following: “can live for many years with the right treatment”; “medication and multiple treatments can extend life span”; “can improve quality of life”; “there are many different causes”; “average age from 35 onwards”; “many different categories”; “find the right doctor”; and “triple therapy required and early treatment critical”.
Chronic thromboembolic disease was a sub-section or category of pulmonary hypertension, and there were many others. It was so complicated, but everywhere I searched and whatever I read contained the real kickers, the phrases that, as a mother, you never ever want to read: “average prognosis from diagnosis to death 3–5 years …”; “survival can be increased with the possibility of a double lung transplant …”
I was reeling. We were reeling. There must be a mistake. Did Prof. Wilcox really think Jenna could have this awful life-threatening disease? Stuart phoned him. We needed to talk. It was time to ask the hard questions.
Prof. Wilcox saw us on a Saturday morning. I had printed out all the medical articles and we had a list of questions ready. There were no absolute answers, Prof. said, but yes, it was highly likely that Jen had pulmonary hypertension. She had no evidence of an underlying condition so understanding the cause was difficult. At this point it was what one would call “idiopathic” or “primary” pulmonary hypertension. Even though we pushed him, he wouldn’t give an absolute prognosis. He was careful to manage our fear and horror. What was clear to us was that this was not going to be an easy road.
Stuart was the first to ask about a lung transplant. I found the concept brutal. But yes, Prof. said, the chances were that Jen would need a double lung transplant at some stage in the future. If a double lung transplant was a solution, Stu persisted, why didn’t we just do it now? Because, Prof. explained, lung transplants are extremely difficult surgeries and they don’t buy you a lifetime. We would have to wait until it was absolutely necessary. I wanted to vomit.
Stuart and I stood for a long time in the carpark after that meeting, weeping. We couldn’t go home and face our girls like that. We had to pull ourselves together.
Jenna models for Cosmopolitan SA magazine
Kristi (2) and Jenna (5) with dad Stuart
Jen with her godmother, Sandy
Jen (7) doing yoga on the beach
The Magic Bissie Tree by Jenna Lowe
Jenna the bookworm
Sweet 16 – Jen with surfer boy Nic in Plett
The Lowe family with their faithful hounds, Sahara and Prince
Jenna Lowe, deputy head girl, 2013
Jen and Kristi – as close as two sisters can be
Herschel Valedictory Day with Granny and Grampa
Cousins Natalie and Jen – oxygen buddies
