13/10/2017 15:28 SAST | Updated 13/10/2017 16:31 SAST

A Day In The Life Of Someone Waiting For A Double Lung Transplant

"I’m waiting for a transplant. And it sucks. I didn’t smoke. I did nothing to cause this disease. The doctors simply don’t know why my lungs are dying."

Martie Geertsema/ Facebook

I've been trying so hard to start a new facial fashion trend. They say that the fashion world is always looking for new things, but I am here to tell you that's a lie. If it were true, how come oxygen cannulas are just not taking off?

I've been using oxygen 24/7 now for about a year and a half and still, nothing to indicate that anybody has considered joining me in this radical fashion revolution. I haven't heard anything from Marc Jacobs, and Stella McCartney has not replied to any of my emails. Yet.

I'm waiting for a double lung transplant. And it sucks. Now, before you go all judgemental: no, I didn't smoke. I did nothing to cause this disease. The doctors simply don't know why my lungs are dying. So, instead of slowing down in life by meeting friends for a coffee, it's become the highlight of my day.

Mind you, I can't drink coffee any more because it gives me heart palpitations. Besides, who drinks decaf anyway? After one outing of about an hour, my day is done. On a really wild day, I'll shower, wash my hair and -- wait for it: dry it too!

When I get carried away and do "too much", the next day is simply cancelled and I remain in bed, too depleted to do anything. Well, on days like that I am easy to find: I'm either in the loo or in my bed.

Just last night I had plans to meet friends, whom I haven't seen in ages, for dinner. It was the highlight of my week and I'd been so looking forward to it. Except I ended up not going to dinner but to the ER with a high fever that just would not break. I was punctured and bruised by the time we left the ER at 10.30pm, but at least my fever had broken.

It's all good and well when being sick gets you out of doing things you don't want to do, but it is frustrating when it isolates you from those you love.

So much for catching up with long-lost friends. Even though they say they understand and still love me, I hate always being the one to cancel plans at the last minute. I hate being flaky and unreliable.

I hear you say, "It's not you who's unreliable, but your disease." It doesn't make it better, though. It's all good and well when being sick gets you out of doing things you don't want to do, but it is frustrating when it isolates you from those you love.

READ: 9 Important Things To Know About Organ Donation In SA

Before I was diagnosed with my lung disease three-and-a-half years ago, I travelled the world, worked abroad, was easily doing 60-hour workweeks and rode my 680cc Honda motorbike to exotic destinations and faraway holidays. Now, just keeping my portable oxygen machine charged is sometimes the most exciting thing in my day.

Ever noticed how few coffee shops have plugs? And travelling? Whether I go away for a month or for a night, it's about the same amount of stuff I need to pack. Just packing for one night fills up the boot entirely with only my medicine, consumables and equipment.

I could supply a small country with all my medicine! At least the tablets are all different shapes, sizes and colours, so when I take my pills in my tequila shot glass three times a day, it looks pretty. That's the closest you'll get me to anything alcoholic, too. On all my meds, a light beer magically is transformed into a vodka equivalent with an extra kick. Gone are the good old days of having a sundowner to celebrate the beginning of the ending of a good day.

Fortunately, the medicine I am on keeps me thin. While I'm waiting for my new lungs, guaranteed side effects of the medicine include diarrhoea, nausea, a clamped jaw and sometimes -- just for fun and to spice things up a bit from predictability -- a migraine that leaves me debilitated.

Martie Geertsema/ Facebook
Martie Geertsema.

I shouldn't take pain medication because it interferes with my other meds. Fun. Long gone are the days when I was worried that my skinny jeans wouldn't fit at the beginning of a new season. Still, despite the benefits of now always fitting into my jeans, I'd rather be healthy if it's all the same.

What's hard for me to deal with, though, is when, after a night of crouching by the loo, feeding the fish, people tell me how good I look. If only they knew... Still, I suppose it's preferable to looking very sick. But what does a sick person look like, anyway? Without my oxygen cannula, you'd never look at me and think I was so sick.

Being pharmaceutically fabulous is not only super expensive, it's also not portraying the reality of what my life has become. People don't realise how much money goes into helping me get out of bed in the morning. I miss the days when the most expensive accessory was a Gucci bag!

Martie Geertsema was diagnosed with idiopathic pulmonary hypertension a few weeks before her 40th birthday, in 2014. She is the founder of the nonprofit organisation Meds4Martie, which aims to raise money to help cover the breathtakingly expensive medicine she and other patients with pulmonary hypertension in South Africa need. You can visit to make a donation, and like Meds4Martie on Instagram or Facebook.