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.”
Horror flooded my body. She knew. I took a deep breath. “I’m coming,” I said quietly. “I’ll be there in three minutes.”
Jenna was waiting in the school carpark, hiding behind a tree so that no one would see her crying. We drove home clutching each other’s hands across the gear-box, tears streaming down our faces. The silence was heavy. I knew I couldn’t take the pain away and I was nauseous. Once home I helped Jen gingerly out of the car and up the steps to the front door. We stood there hugging, clutching each other for the longest time. Her face was buried in my chest, her fragile body shaking against mine. Oh God. Oh God. Please help me to take this pain away.
We stood for a long time before she pulled away. She looked up at me, huge brown eyes brimming with unanswerable questions. Then she nodded imperceptibly, turned away and slowly walked down the passage, closing the bedroom door softly behind her. In the privacy of my bedroom I doubled over, clutching my stomach, and wept and wept. There was no way to make sense of this. My head ached. An hour passed and I couldn’t stay away from my baby any longer. I crept into her bedroom with warm, sweet tea and climbed into bed beside her. I wrapped my arms around her and rocked her gently back and forth. For a long time, we cried together. Jen was so sad I thought she might break in two.
That day I promised we would do everything we could. That we would never give up. We would fight. I promised she would never be alone.
That heartbreaking day, when she was alone in her bedroom, this is what Jen wrote:
Jenna’s journal
Monday, 21st May 2012
Home; my bedroom
I’m lucky if I have 10 years left. No long life for me.
No career, no opportunity to change things or be promoted. No kids. No kids! Because even if I last double that, 20 years, then at 37 I would still die while my kids are young. It’s not fair to them. And who wants a mother who can’t take them hiking, or play ball, or even prepare them dinner?
I will not get better before I get worse. Never again will I run, jump or swim in the ocean. I’ll never learn to surf, ski or scuba-dive.
I have to cling to the hope that the medical experts will develop a cure.
What a pathetic hope!
I’m 17 and yesterday I basically found out that I have either:
Two years left (pulmonary veno-occlusive disease)
Seven years left (pulmonary veno-occlusive disease with successful lung transplant)
10 years left (idiopathic pulmonary hypertension/CTEPH with good meds, all the right treatments and maybe a successful lung transplant)
And my quality of life isn’t exactly going to be the best considering I can barely walk.
So now it’s 11:38 am at school and I’m meant to be studying for exams. I’m meant to be learning Afrikaans. How am I supposed to deal with this? I don’t know. I have to alternate between being immersed in life-or-death issues and being distracted by the petty considerations of everyday life. I need to try and make every day the best it can be if I’m going to die soon.
But I’m so scared.
This isn’t fair. I was always going to help people – be a politician, fix people’s lives. Something. How can I die?
It’s