of Jen’s illness was that even though she had been on a vaso-dilator, Revatio, since the angiogram, we were yet to see any improvement.
CHAPTER 14
Jenna’s journal
Jenna was stoic. No one saw, or knew, the depth of what she was grappling with inside. She saw her therapist regularly, and spoke to me, but mostly she protected everyone around her from her darkest fears. Writing became a constructive way for her to cope and she journalled a lot. There were some exquisitely painful and precious late-night moments when she would share some of it with me.
Jenna’s journal
Sunday, 6th May 2012
In bed, Julia’s house
I am stressed and should be working for exams, but I want to clear my head. I’ve realised, when skimming through my journal, that I have minimal descriptions of my actual condition – because they are unnecessary as I am writing for myself.
So right now, I have deteriorated to a similar state I was in in January. I struggle to breathe if I talk too fast, stand too long or walk even a couple of metres. Stairs pose a massive challenge for me. I am as weak as a kitten and have dropped to 45 kg. The other night I realised that I cannot lift a pile of three plates with one hand – cannot. I struggled for ages and simply could not lift them.
With my breathlessness comes, of course, the exhaustion. On my best days I wake up feeling as though I have slept for five hours after doing a massive hike the day before. On other days I can’t wake up. Of course, I can’t spend my whole life in bed, but often by the end of the day I am so fatigued I can barely string a sentence together. Because my oxygen saturation is so low concentration is a nightmare. Where I could work steadily for a straight four to six hours before, I now struggle to focus and stay awake for one. So that’s the breathing and energy description.
The chest pain is another aspect. The last three days it has been pretty much constant. On Thursday I couldn’t get out of bed for hours. The pain manifests in a number of ways:
Short severe stabbing chest pains that make me hold my breath and double over.
Prolonged severe sharp pains which stop me from breathing properly. These pains usually fade slowly but are immediately worsened if I breathe in and out deeply. I take shallow breaths until I am so desperate that I have to breathe in deeply and then it usually makes me gasp or cry.
Pains that last for hours or days. These pains are also affected by breathing and thus usually confine me to bed, lest I move and get more out of breath. These pains normally trigger corresponding pains in my back, neck and shoulders.
Back “rubbing” pain occurs usually on my left side by my spine. It happens when the lung engorged with blood rubs against my back muscles. The “rub” sensation can actually be heard and felt – it feels as though a rough, textured surface is being moved back and forth in my back as I breathe; and it sounds like a crackling noise.
Streaking pains are like “stabbing” pains, different chiefly in location. They “streak” across my chest suddenly.
Corresponding pains – my back, shoulders and sometimes neck often develop pains in perfect unison with my chest. For example, my lower lung on the left often triggers pain in a specific point on my left shoulder. Massage helps my shoulders, but not my chest.
Now onto the medication. Warfarin, of course, causes bleeding and bruising. It also dries out your hair and skin and for some reason I am always cold. I am also now on Revatio/Sildenafil which causes nausea, dizziness, headaches and hot flushing. But I have become resistant, after two horrible weeks, to the initial Revatio side-effects now.
Jenna’s journal
Tuesday, 15th May 2012
I had a lovely weekend at Julia last weekend, though with bad chest pains. This past weekend was better, though. The pains have improved, and I’m not sure if I’m imagining it, but my breathing seems better too.
Nothing has happened yet with Daffy … but we have been chatting a lot. He’s so sweet. I really enjoy being around him.
Exams start next Thursday! Stress!
Jenna’s journal
Friday, 18th May 2012
School – English office 11:30 am
I am insanely tired. I still have to get through Afrikaans, biology, history, debating and then we are going to Stardust tonight. An afternoon sleep is without doubt going to be necessary.
It is six days to exams. I have no idea how I’m going to do this. I’m not concentrating well at all.
Jenna’s journal
Saturday, 19th May 2012
Home 9:05 am
Last night we went to Stardust. It was such fun! There was definitely a vibe between Daffy and me but nothing major happened. It was great, though. Kristi definitely needs to work there! I only got a little bit bleak when I had to sit, not dance. But oh well, we still had a great night. I definitely want to go more often.
Jenna’s journal
Sunday, 20th May 2012
1:30 pm home
I just read up about lung transplants, because if I have idiopathic pulmonary hypertension or pulmonary veno-occlusive disease …
Survival rates look like this:
One year – 75%
Five years – 50%
Oh. My. God.
On Monday, the 21st of May, I was sitting in my office poring over medical journals when my cellphone rang. It was Jen, phoning from school. Immediately I was on high alert.
“Jen?” I asked. “Is everything all right?”
Silence.
“Jen?”
Silence.
“Jen?!”
“Mom?” I heard a crumpled, crushed little voice crying breathlessly into the phone. My heart was pounding. She was panting and crying but eventually managed to say three little words: “Mom … I Googled.”
