When I first heard about the procedure it sounded just a tad unpleasant.
“A drain is placed in the patient’s stomach through which the abdominal fluid is slowly removed.”
Like, OMG. How totally ick.
Readers might remember a post a few months ago in which I wrote about how fashion and congestive heart failure really do not mix.
Unfortunately, large-scale fluid build-up also brings nagging, keep-you-awake-at-night back pain, a belly button that sticks out like the cherry on top of an over-large pudding, increased pressure on the lungs leading to (more than usual) shortness of breath and the annoyance of lugging around an extra six or seven kilos.
Dr More Dreadful said that I could have this procedure but that the fluid might come back quite soon. However, as the whole process was said to be painless and required only a day and a night in that hellish place otherwise known as hospital I figured I had nothing to lose (except six of seven kilos, of-course) and decided to go ahead with it.
The procedure itself was painless except for a tiny sting with the local anaesthetic. The doctors and nurses were friendly and efficient and it was over in twenty minutes. After waiting in recovery for a while I was lucky enough to score a bed by the window in the (by now very familiar) Cardiac Care Unit on the tenth floor of the hospital.
Heart patients who get a window bed can look over the park and watch tiny people clip-clopping to work on spindly legs, picnicking on the grass, or playing with their tiny, well groomed inner-city dogs. From one of the rooms you can even see miniature people drinking coffee at cute little miniature coffee tables. You feel as though you could just reach down, and, like a child with a doll’s house, pick up one of the people and move them to wherever you want to.
As night comes it’s even more entertaining. The whole city lights up in patterns of glowing dots of windows and neon signs like the circuit board of a huge computer.
Unfortunately, shortly after I was settled in the pain started. It was slight at first; like the stitch one gets after running. Then it became a round, fat, worm, wriggling around and gnawing at my insides. It was almost bearable except for the fact that every time I moved even one centimetre Mr Hungry Worm suddenly had vivid flashbacks to Vietnam and pulled a Swiss army knife on me.
I had already asked for painkillers but because my doctor hadn’t officially written them up they took a while to organise. Eventually, they brought me something that lulled Mr Worm into some kind of slumber but left him with enough awareness to snap into wakefulness and get all stabby about things every time I moved.
I lay in bed, staring alternately at the view, the turned off-television (the remote was out of my reach) and a sign on the television that read, ‘donated by the Curran Foundation’.
The fluid drained through a thin tube and into a bag that lay on the floor. It was a disgusting yellow colour but I was gratified to see that the bags filled up with it quite quickly. Every few hours a nurse would empty the bag into a measuring jug then write the amount on my chart.
I tried to distract myself from the pain by straining to remember exactly what E.M Forster had written about rooms with views in his lovely novel of that name. They represented an openness to new ideas and experiences, didn’t they? Well this was certainly a new experience. I also took regular peeks underneath my hospital gown to look at my steadily shrinking stomach and to remind myself exactly why I had chosen to torture myself in this way.
This did make me wonder; was this procedure really about feeling better or was it about me wanting to look ‘normal’? Was I going through this terrible pain for the sake of living up to ridiculous beauty ideals, or worse – for the sake of once again being able to pretend to the world that there was nothing wrong with me, that I was in perfect, ‘normal’, good health?
And did anyone look ‘normal’ anyway? Was anyone in continuous perfect health? Rare individuals, perhaps. I began to wonder if I was in the same category as those frivolous people who had breast implants, liposuction, and cheek-bone implants, undertook fad diets, or took expensive vitamin supplements they simply didn’t need.
If this procedure was more about improving my health than cosmetic factors it certainly wasn’t helping the back pain part yet. If anything, being so immobile for hours was making my back hurt more than ever.
This is when I asked for more painkillers and was told I’d had too many already. Oh dear. And so the hours crawled by as I stared out of the window, watched the generously donated television (someone finally brought the remote within reach), and edited a short-story I’ve been writing for a magazine submission. At least I had a few things (besides obsessive and pointless thoughts about society’s attitudes to beauty, that is) to keep my mind occupied.
They told me they would stop the drain at midnight, but when the hour came the nurse said they would keep it going because the fluid was still draining.
It continued to drain all night, all the next day and the night after that. A total of 6.5 L came off and to my delight my stomach became progressively smaller and flatter. I could breathe easier already. And I could pull my hospital gown tight across my middle and think about all the clothes I would now be able to fit. Huzzah!
The pain lessened as the draining slowed, but I still couldn’t move much. I had to use a bedpan for the first time in my life. I’m quite sure this is not the kind of ‘new experience’ Forster had in mind and it is not one I wish to repeat. This is partly because it was three in the morning and I had to rely on an unsympathetic and grumpy elderly male nurse to help me. To be fair, he was probably grumpy because I had been hassling him all night for painkillers.
By day two, thank-goodness, I was able to get up slowly and carefully and sit on a kind of wheeled toilet-seat thing and be pushed by a nurse into the bathroom. It’s amazing how quickly one comes to appreciate things like bathroom privacy. It seemed the height of luxury.
Finally, it was time remove the drain. My stomach, by this time, was as flat as the ocean on a clear calm day. It was like a frozen lake. It was Barbie’s perfect plastic midriff. It was – well, you get the idea. It was gobsmackingly amazing, obviously, and as far as one could get from my increasingly annoying and cringe-worthy ‘baby bump’.
Two nurses came in and told me they were going to take the drain out. Suddenly I was nervous. “Will it hurt?”
“Not at all,” they said reassuringly. “This part doesn’t hurt one bit.”
I wasn’t sure if I should believe them as they had been wrong about everything else. However, as it had to come out, pain or none, I lay back and helpfully hiked up my gown. They told me to hold my breath while they pulled. I took a deep breath and they began pulling the long, thin, white, tube through the small hole in my skin.
Immediately, sharp pain darted thickly through my stomach. It was agonising. It was like being on a medieval torture rack and having my intestines pulled out slowly and sadistically by a malicious enemy.
“For the last time, will you give up your heathen ways, and acknowledge Catholicism as the one true faith?!!”
“Look, If you people want to argue about which imaginary friend you like best, it’s none of my business. Oooouuuuch!!!”
I begged the nurses to stop, and they did, genuinely distressed that I was having such a difficult time. But after giving me a moment’s break, there was nothing to be done but keep going. So keep going we did. The last part was the worst; the surgeon had made a little loop at the end of the drain, designed to stop it from being accidentally pulled out of my stomach during the draining process. As the nurses pulled the looped tubing through the tiny hole I gave an involuntary and quite loud scream of pain – something which I’ve never done before and which must have alarmed my hospital room-mates considerably.
Then it was over. The nurses – very sympathetic when I’d said it hurt – were now puzzled because I wouldn’t stop crying. I would manage to stop for a minute or so and then I would start up again. They repeatedly asked me if it was painful and I kept saying no. It did hurt a bit when I moved, but mostly, the pain was gone.
Eventually I stopped crying and inspected the huge puffy bandage they’d put over the site. I felt lighter and could breathe so much easier than I’d been able to a few days ago. My belly-button had even tucked itself inwards again. I had to stay another hour or so for ‘observation’ but my family were coming to pick me up after that, which was wonderful. Soon I would be home.
Since then, I’ve been investigating why the procedure was so painful when everyone – from doctors to patients who had been through it – told me it wouldn’t be.
My Aunt who is a doctor told me that people have a thin protective layer of fat over their internal organs and that because I am very underweight I might not have this any more. Having a drain sitting loosely in ones’ stomach with no protective coating would be pretty agonising.
Looping the tube is also a factor that could have contributed to the pain. Some surgeons stitch the tube to the outside of the stomach instead of looping on the inside (at least I think that’s the case) but for some reason my surgeon didn’t go with that option. Perhaps the loop method is considered more up to date, and I imagine it would be less painful for a patient if they had enough fat covering their organs.
Whatever happened, having the fluid gone is fantastic and almost makes the pain worthwhile. Honestly though, I don’t think I would go through with this procedure again if it were going to be as painful. I may have a low pain threshold or I may just be a total wimp – or perhaps the procedure really was far more painful than it’s meant to be and I experienced a level of pain that normally would be controlled with much stronger drugs. I have no idea.
Typically for me, I am now paranoid about it coming back and religiously apply a tape-measure every morning. So far, it has stayed the same, a perfect 72 cm. Oh Barbie, you would be so proud.
I am of-course going to try very hard to put on proper weight – actual fat, that is. This is means eating a lot of (low salt of-course) cheese, butter, and foods with carbohydrates like rice, potatoes and pasta – guzzling them as much as possible, in fact. Hopefully now I will have more room in my stomach for food to digest properly.
In the mean-time I’ve become re-acquainted with clothes that I haven’t been able to wear for months. I’ve also been feeling way more energetic. I have less weight to lug around and sleeping has become something I can actually enjoy. The Flolan mixing has continued to go well and I’m hoping that it will start working soon and increase my level of energy.
I woke up early this-morning and instead of having to sit up, struggle to get more air into my lungs and try to recover from the exhausting chore of sleeping, I blinked at the pale sunlight coming in the window, rolled over into a slightly more comfortable position and happily dozed for another hour or so.
It reminded me that it really is the small things that count – wearing clothes you like, breathing easily, and being able to lie in bed on a pleasant sunny morning.