OUR JOURNEYS

Patient story

Priya Balachandran

This story was written by Priya Balachandran and appeared in Ladybug Flights, an online magazine.

I've always hated hospitals. The smell of disinfectant lingering in the air, the overly sterile, soulless corridors and the sensation of imminent death lurking in every room. I'd successfully managed to avoid spending much time in a hospital, that is until I was 33. Then life changed and I was making regular weekly visits to the local blood lab. After six months the waiting room at the lab had become a second home. Annie, the part-time, weekend help, was a familiar face. She was old, perfectly powdered with red cherub lips and stiffly sprayed short white curls, and I couldn't remember a time she hadn't been in my life.

There seemed to be a certain type who came to the lab on the weekend. They were either young mothers with tiny babies or middle-aged men with smoker's cough and combovers. I'm not kidding; I could bet my life on it, that one or the other would be sitting by me, week in and week out.

So why was I there?

I'm sick. I don't look sick, I don't act sick, but I have an incurable disease doctors describe as a blood vessel disorder of the lung where the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises to above normal levels and may become life threatening. Scary huh? It's called pulmonary hypertension and occurs in about two persons per million per year. Don't do the math, it basically means it's rare. If that wasn't enough to contend with, the idea that my life can range from two to twenty years is one of the hardest things to face. Living for every minute was no longer just a saying but an actual reality in my life. And in order to stay alive I had to make that weekly trip to the blood lab.

As I sat waiting for the nurse to come stick me in the arm and draw my blood I started to think about my close friend Victoria. Vicky is English, like me, ten years older than me. I love and admire her because she's strong willed and calm and entertaining. She's tall, with high cheekbones, olive skin and eyes that look deep into your soul. She is an earth mother; she was born to have babies. No one would guess that this 43 year old mother of two once toured Europe as an exotic dancer. Vicky's inner calm settles over everyone in her company. But, my thoughts were not about how great my good friend Vicky was. I was thinking about her because four weeks earlier she'd given birth and had had an amazing experience. She held her newborn to her and as she suckled him she looked and felt content, and I realized, when I looked at her, that I would never know that feeling, the peace women describe themselves as feeling when they first hold their baby.

As Vicky described how long her contractions were, how much pain she was in and her very first thoughts once the baby came out. I nodded my head at key junctures in the conversation so I gave the impression that I knew exactly what she was talking about. In fact, I couldn't share my thoughts on childbirth, I couldn't share my own thoughts on the pain or the pleasure that comes with giving birth, and somewhere in the back of my mind I felt a twinge of envy as I listened to her.

I am a mother. I have a nine month old baby girl, Kali. I carried her for seven and a half months. I gave birth to her. I don't remember much about her birth. I don't remember what it felt like pushing her out or what she looked or felt like when she came out. My first thoughts, I'm ashamed to say, were not about my daughter. They were, "For Fuck's sake, I need air"

Kali BalachandranMy daughter's name, Kali, is also the name of an Indian goddess. The goddess is a known as the warrior or destroyer of evil and also the goddess of rebirth. She is often labeled "Black Kali" as she is often portrayed as black. The superstitious amongst my friends and family tried to persuade me to choose a more peaceful, feminine name. One or two of my girlfriends suggested that maybe I was putting too much pressure on the child by calling her Kali. "It's like naming your child Bodicea" one of my friend's had said and then added that she knew very few Indian women with the name Kali. That made it even more attractive in my eyes. My mother tactfully suggested that maybe I should call her one of the 30 other names that are used in the Hindu religion for the same goddess; the names had a much more positive image, than Kali. I was adamant that the baby would be called Kali. Whatever powerful, frightening symbolism this name carried was not going to put me off.

Maybe I did tempt fate with my stubbornness to keep the name. The goddess Kali brings both death and rebirth, and the irony was that my Kali's birth brought both of those or very nearly did. Her birth and my near death. The fighting spirit associated with the goddess was seen in baby Kali's own personal instinct to survive as she came out of me fully intact and ready to face the world. Kali entered the world six weeks early, before we'd decorated her nursery or thrown a baby shower or even packed an overnight bag for my stay at the hospital. Her early arrival, although a shock to both me and my husband, Patrick, is probably the reason I'm still here today.

At the time of Kali's arrival I didn't know I had Pulmonary Hypertension. No one knew. I'd felt tired through my pregnancy, actually exhausted. Imagine running up a hundred steps without stopping: that was how I felt walking one block. Climbing into bed made me gasp for air as if I'd just hiked a steep incline. I could just about muster a shower in the morning, and then I'd flop on the couch to rest from the effort. Before you start envisaging a huge round bellied woman, I want to put you straight—I wasn't big. I actually looked like I'd shoved a soccer ball up my T-shirt. I blamed my pregnancy for my shortness of breath. But my pregnancy was not the cause of my illness. My illness was discovered due to my labor and it had been with me for over eight years but misdiagnosed as asthma.

The day that Kali was born was the day that my life took on a whole new meaning. I don't mean in the sentimental sense where I finally realized my calling, to be a mother, no I mean, I finally understood the phrase, "It's a matter of life and death". The morning started on an up, I had woken to find I could breathe easier than I had done for the past seven and a half months. I felt good but I instinctively knew that something was not quite right with this miraculous change. I walked to the bathroom. And then I saw it. Or did I feel it? I'm not sure now, but it was blood. Thick, congealed, sticky, red blood. Like red jelly. I felt sick with fear, frightened that I had done something over the past seven and a half months that had led to this. And worse, I didn't know what was happening. The books and Lamaze class hadn't prepared me for this.

I yelled for my husband, Patrick, who was stepping out of the house, and he rushed back into the bathroom. As I tried to work out what was happening, he was trying to work out the best thing to do. He kept asking me,"Shall I call an ambulance or shall I take you to the hospital in the car?" "For God's sake, I don't know" I snapped at him. It was obvious that he was panicking but I couldn't help him all I knew was that I had to get to the hospital soon. Finally, after what seemed a lifetime of dithering, it really was only five minutes, we decided that waiting for an ambulance was not the best thing. So, wearing a pair of pink pajamas and my spectacles and feeling a little stale from not having a wash, I rushed off to the hospital.

The baby was coming, the nurse calmly informed me and thoughts started to run through my head. Ridiculous thoughts like "Shit, I look like hell, I can't believe I'm wearing my specs," and "Oh my God, we never had a baby shower" and then more serious thoughts like, "How do I give birth I've never done it before?" and the main one," Please God, let her be all right." My labor was quick. Three and half hours later I had given birth. Great. The only problem was that those three and a half hours were a blur. My labor was unusual and my memory of it was like a hazy dream. I had to give birth in an Emergency room usually reserved for CSections births. I remember that there seemed to be a hell of a lot of people in there. Four or five other people were in the room. Let's see, there was Patrick, the doctor, the nurse, the anesthesiologist and the guy who had taught us child CPR, which was odd as I couldn't really understand what he was doing there. I wasn't sure that I really wanted so many people seeing me in this highly undignified position, legs apart, sweaty and unkempt. I was wearing an oxygen mask, something that had never been mentioned in any of my birthing books. I remember being told to push for the count of ten. I cheated. I could hold my breath only for three, so I pretended to do it for ten but instead took sneaky short intakes of breath to keep it going. Patrick remembered that I yelled that I couldn't breathe but no-one seemed to be listening to me.

And that was it. How did I feel when my baby came out? Exhausted. Did my husband cry? No idea. Did I hold her to my breast to suckle her? No. I did cuddle her, but she was clothed, which I thought was funny; as if she'd emerged into this world and donned a cute outfit and a hat. This was not how I'd imagined giving birth. I'd imagined pain, joy, tears and then blissful peace with a little baby, not hazy, foggy crowded labor with no chance to regain composure before being rushed to another Emergency room. Whilst I was giving birth, the doctors realized that the shortness of breath was something much more serious than just pregnancy induced fatigue. As I pushed, my oxygen levels were dipping down; the medical term for this is de-satting. It was as if the air around me was disappearing, like I was drowning on land. It was a weird situation to be in; whilst I was helping give life to Kali, I was slowly losing my own ability to live.

When she was born, Kali weighed three pounds nine ounces and the moment she emerged she was whisked off to the incubator and I was rushed to another hospital where specialists would spend the next four weeks poking and prodding me trying to determine my illness.

Because I had been taken to a new hospital and Kali was a preemie, we could not be together. She needed to stay where she was and I needed specialist care in the new place. I saw my baby for just five minutes and from then on only through a video camera screen that my parents brought to me, without fail, every day of the month that we were apart. I couldn't do all the new mom things like breast feed or change diapers or marvel at her little fingers and feet. I wanted to be with her so badly that I felt sick with fear that I may never see her. I was stuck in a hospital trying to remain logical and calm but all the time worrying that maybe that first five minute cuddle would be the only cuddle I'd ever give her. The only thing that kept me going was a small Polaroid of her, taken on her first day, before she was clothed, which I gripped tightly in my hand when I was asleep as if it was a talisman to ward off evil.

The seriousness of my illness didn't hit me at first. My only thoughts were about the baby and the tragedy of not being able to breastfeed. Looking back, I would have been thankful if my only worry had been about not breast feeding. The enormity of my illness hit me when I was informed that I would go through a trial of different drugs to help maintain and stabilize my breathing. First they would put me on Viagra - yes I did say Viagra, a drug that helps men keep it up and women, with pulmonary hypertension, stay alive. If that didn't work I would have a drug that could only be administered by IV as the immediacy of this drug was vital to keep me breathing and finally if that didn't work I'd be put on an emergency lung transplant list. It was a Saturday afternoon and the idea that a lung would be available was slim, despite Patrick trying to offer one of his, which the doctor refused. I was lucky. The combination of both Viagra and the IV proved to be a life saver.

I'm not a dramatic person. I don't like to fuss over my illness. I find it difficult to explain the severity of pulmonary hypertension. It's not cancer. It's not a popular illness that everyone knows about and donates willingly to charities, to try to cure. As far as I know, it doesn't have a celebrity sufferer to help raise awareness. It doesn't have a cure. I tend to brush it off with jokes about feeling horny on Viagra. What I hate the most is the trappings that come with the illness. I am embarrassed to have a disability card hanging in my car or having to request a wheel chair to take me from one airport terminal to another. I battle with the fact that two minutes of dancing on a dance floor would lead to virtual collapse. I had lost control of my life to pulmonary hypertension. And to make me feel even more powerless I was not allowed to have more children. Not a problem. Well, according to the rest of the world it is.

For some reason as soon as you have one kid, the whole world seems in a rush to push you to have another. This particular day at the blood lab where I have to get a weekly test to ensure cholesterol level and liver are in order, the nurse asked me the dreaded question, "So when are you having another kid?" It was a perfectly innocent question and I didn't have the heart to say, "I can't have anymore" as I'd had to say to all the others who asked me before her. I just didn't want to see her discomfort. I didn't want to explain that the one I have is a miracle, that to have another would kill me. I simply smiled. "Maybe one's enough", I said. But she told me once again, as I had been told by the gardener, the hairdresser, the stranger at the supermarket how unfair it would be to Kali if I didn't give her a little brother or sister. As I listened I smiled but inside I was seething with anger. I wanted to shout, "Shut up! I can't have anymore kids, and yes it's unfair, but let me enjoy what I have without the guilt. Please?" Instead I finally agreed that she was right and that maybe next year I'd have another.

Discovering you have a lifelong illness means that you have to grow up. It's hard having a problem that no one can solve for you. There are days when I just want someone to tell me that everything will be ok like my parents did when I was a kid, but unfortunately my pulmonary hypertension was not going to disappear like measles or a bout of flu. It was here to stay and not only that, every day could be my last.

Life changes for everyone when they have a child and mine has too. Now I take blood thinners to ensure that I don't have strokes, having already had one. I go for blood tests to ensure that my blood isn't too thin and that my liver doesn't collapse due to the drugs I take to keep me alive and breathing. If you shook me up and down you'd probably hear all the tablets I take rattling in me as they do their work to keep me around as long as possible. By my bed is a huge electronic oxygen tank that I use on a regular basis. I'm still working on looking sexy while wearing an oxygen mask. Still, I think my story is a success story. Kali, my daughter, saved my life by coming out early. Through all the turmoil, frustrations and depression the one constant that calms me is Kali, and especially at bedtime - her bedtime. Sitting in my rocking chair in the nursery I hold my nine month old daughter. She usually lies on my chest, her arms spread around me as if she's hugging me, and I am at peace.

Kali's a pretty noisy sleeper. She snores soft, feminine, milk satisfied snores that begin loudly and diminish to a whisper. She whimpers as she moves her head and snuggles into a curled up ball, lying on her stomach, her legs tucked into her chin, a baby yoga pose, her head slightly angled. She looks like a giant comma. She drifts into a dreamland I can only imagine. Maybe she's surrounded by thousands of bubbles that pop as they land, or she's the baby version of Cleopatra, sitting in her own formula milk bath. Who knows what goes on in baby dreamland? As I sit rocking slowly,singing nursery rhymes from my own childhood, making up words to the ones I can't remember, I daydream about Kali as an older little girl. What will her voice sound like? What will her first words be? Will her hair ever grow? Will I be around to witness all of this? I look at this beautiful, rosy cheeked baby sleeping so peacefully and realize that if I had to do it all over again, knowing what I know, I would, just to spend whatever time I have with my miracle, Kali.

 

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