and clinical pulmonary hypertension, but a right and left heart catheterisation needed to be done to be sure. A catheterised angiogram is a dye test used to check the pressures in the lungs and heart. A long tube, a catheter, with a camera on the end is inserted into the femoral artery located in the groin and guided all the way up into the heart to X-ray the veins and arteries measuring the pressures.
Jen was re-admitted to UCT Academic Hospital on the 23rd of April 2012. The procedure, in and of itself not dangerous, would be invasive but quick, but the fact that she was on high doses of blood thinners made things a little more complex. Despite her risk of clotting, she needed to come off the blood thinners to decrease the risk of a bleed-out in surgery.
Jen was prepped and ready, smiling at me as she was wheeled in. She was awake for the procedure, having elected to skip sedation because of the effect it had on her breathing. It was only a 30- to 45-minute procedure, but I paced outside the theatre door. An hour went by. I was still pacing. This was taking much longer than expected.
It was another half an hour before Jenna came out. She was strained, blue lipped, cold and miserable. She was shivering and her blood pressure was low. We got her to the ward quickly.
“Mom, I could feel a warm flush as the dye went in,” she said breathlessly. “It wasn’t easy lying still for so long. The stainless-steel table was so cold, and I needed to pant. I tried very hard to stay totally still, Mommy.”
She was hungry. I calmed her and fed her small bits of crumbed chicken schnitzel from home. We piled her high with blankets, found hot water bottles and brought warm tea. Her blood pressure stabilised but her back ached and all she wanted was to curl up and pull her knees into her tummy to relieve the pain. But it was high risk, the catheter had been inserted into her femoral artery in her groin and she needed to stay straight-legged. For six hours. I read to her as she dozed in and out of sleep.
Later that evening the cardiologist checked in on us and Jenna asked him if he had got what he needed. “Yes,” he said. “We could see that your pressures are way up.” My heart skipped a beat. This was not good. “We took extra time to check if your pressures responded to nitrates, but they didn’t. Prof. Wilcox will explain.” I went cold. Skin crawling. I knew this meant that our worst fears had been confirmed. Jen’s pulmonary pressures were way up. Every awful medical detail I had ever read came at me. I was nauseous. I felt outside of my body. An altered state of time.
“May I curl up now, Doctor?” Jen’s sweet little voice brought me back to the room. “I just want to bend my legs.”
“Yes,” he said. “It should be safe to move now, Jen.”
After the doctor left, Jen needed the toilet. I helped her out of bed and she walked gingerly to the bathroom. I was standing right outside the door when I heard her shout. “Mom!” I could hear panic in her voice. I threw open the door. She stood, wide-eyed with fright, blood literally pumping from her femoral artery. I screamed. A nurse came running, immediately jamming her thumb into Jen’s artery. Together we got her onto the bed and the nurse applied pressure to stop the bleeding. “Get the doctor!” she instructed. I ran down the passage, my heart pounding, but I caught him, and we raced back to the ward. “You’re not going anywhere,” he said to Jen, and to the nurse, “Don’t let up on that pressure.” Jen’s eyes were wide, but she was quiet.
There was blood everywhere. While I talked calmly to Jen, the nurse bore down, applying maximum pressure. It must have been so sore. Jen held my hand and looked out the window, focused on her breath. Eventually the bleeding slowed, and the nurse could reduce the pressure.
At that moment Granny, Grampa and Kristi strolled unsuspectingly around the corner into the ward, smiling and chatting. It was visiting hour. I ran to block their view and hustled them outside into the passage while we stopped the bleed, changed the sheets and tidied Jen up. Jen and I hugged. “Call them in,” she said calmly. She was remarkable, chatting lightly to her grandparents and putting her wide-eyed sister at ease.
Later that night I climbed into bed next to Stu. In the stillness of the night I started to shake. There was no more doubt. No matter which way you looked at it, we could not suspend the truth. Jenna had PH. The full weight of her diagnosis hit me hard.
Two days later Jen came out of hospital. She was limping slightly and had a bruise that spread from above her groin to halfway down her thigh.
There was a school function in the sports hall that evening that she wanted to attend. I remember, with absolute clarity, the moment that the school choir began their opening song. Their emotive voices echoed round the hall with familiar lyrics from “I Hope You Dance” by Lee Ann Womack. It was a singular moment. The music, the words, the sight of all those fresh-faced healthy young girls singing their hearts out. Jen would never dance, she would never take one single breath for granted and she probably didn’t have a fighting chance … and yet no one knew. Seated in the middle of the huge hall, packed with robust children and their hope-filled parents, I felt utterly alone. I held on tightly to Stuart’s hand, scanning the mob of blue school dresses frantically searching for my girls. I needed to see they were okay. I saw Kristi, hair pulled back into a tight high pony, leaning playfully into a friend, chatting animatedly. I scanned the crowd again and found Jen. Her head was lifted high, she was smiling, standing, shoulders back, next to Camilla as if nothing was wrong. She was the ultimate picture of poise, grace and courage. Stu and I held tightly onto each other, our palms sweaty with emotion, battling to contain ourselves.
It was a glimpse of what lay ahead ... the constant struggle to cope in the normal world, while holding the knowledge that Jen was fighting for her life. Nothing for us was normal. It was the ultimate paradox, to hold both fear and hope.
With no more room for denial, Stu and I talked at length about finding ways to consciously create joy. It was tempting to withdraw and batten down the hatches but, having learned the value of staying connected, we made sure our loved ones were always welcome in our home, no matter how sick Jen was. Our friends and family flocked to support her.
Daffy started to visit more regularly – he and Jen had remained friends over the years – and he had become a much-loved part of our family. They grew incredibly close. They played chess, chatted for hours and watched movies. It was a joy to hear them laugh, easily and often. When Daffy visited, Jen was her most natural, relaxed and happy self. She was loved by Daffy for exactly who she was. It didn’t matter how tired or challenged she might be feeling that day. With him she didn’t need to pretend.
There were also regular visits from a gorgeous tall boy called Max, who lived just a few blocks away from us. This friendship was a lot more charged and complicated, as both Jen and Kristi perked up when he arrived … mmm … two young teenage girls with a crush on the same boy. This was a potential recipe for disaster.
On Natalie’s 12th birthday, the 28th of April, we went to the revolving restaurant, the Top of the Ritz, to celebrate a long-held tradition to mark the children’s first “double digit” birthdays. This would have happened for Natalie’s 10th birthday, but she was in surgery at the time. With Natalie and Shirl about to head back to Boston, we knew this was the time to mark the milestone.
Ahead of their departure, Ali and Les kindly arranged to rent the same country house in Greyton where we’d spent Christmas, so that we could insulate from the world and spend a weekend together as a family. The weekend was bittersweet and saying goodbye again was painful.
En route to the airport Shirley stopped in Somerset West to say goodbye to her dad. Peter’s health was deteriorating and she knew it was possible that Natalie would not see her Pop again. He had been diagnosed with multiple myeloma, the same rare bone cancer that had claimed the life of his wife Jean.
We
