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Hospital Life Continues… and Continues…

I’ve been here for just over two weeks now. It’s getting old fast.

Whenever I have the energy, I take one of the portable oxygen cylinders and make my way down to the end of the corridor, where there is a foyer, a view, and a tropical fish tank. Walk, walk, walk, stop. Catch breath. Occasionally I lean against a wall to have a rest. Sometimes I see someone I know; a nurse, a social worker, a nutritionist, and then I have to talk to them, say things like, “Oh yes, feeling much better, thanks. Trying to get some exercise.” A big part of hospital life is constant social interaction.

The fish tank is lit up with ghostly lights and contains several species of fish. The largest ones have fan-like red tails and glide sedately in and out of thick pillars of seaweed , while others are tiny and dart quickly from one place to another. There are round shelled snails stuck to the glass walls, and tiny wizened creatures with six legs and large eyes and thin little feelers that crawl through stringy tangles of seaweed.

After gazing at this fascinating part of the expedition for some time, I go to a room off the foyer that has chairs, tables and huge windows looking out over the green circle of the park and the tall grey buildings all around.

I stand behind one of the chairs and do some exercises, lifting up and down on my heels. Five times, then rest, then another five times. Then I sit down and do breathing exercises. Breath in, breath in, breath in, hold, hold, hold hold, breath out. Cough. Five of those. Five of lifting my arms up and down, five of lifting my arms up and down in a slightly different way.

Mostly, when I’m not attempting what I suspect is woefully inadequate physiotherapy, I watch movies, or sleep. I’m tired pretty much all of the time. I’ve even had to ask friends and family, who have all been wonderfully and amazingly supportive and helpful, not to come in as much because I’ve been so tired.

The day before yesterday they told me I had pneumonia and I thought that explained the tiredness. Then yesterday they told me I didn’t have pneumonia, but another kind of chest infection. They are still trying to work out what it is. I thought I might go home tomorrow, but last night my temperature spiked again and my oxygen saturation was low so I’m doubtful of that now. But you never know with these doctors; they might decide I’ve been languishing on the state dollar long enough, and it’s time to kick me out and see how I go at home. One can only hope.

This week I met another post-transplant patient who happened to be in the bed next to mine for a few days. Out in the real world she works as a secondary-school Drama teacher. Her small and skinny frame is somewhat at odds with her face, which is large and rounded from Prednisone, one of the main anti-rejection drugs. She has what I could only call large suffering eyes and a rather wicked sense of humour. She was very talkative, and didn’t mind me asking questions about her life after transplant. She is going well, usually works almost full-time, enjoys life, and has had only a small amount of hospital visits over the three years since her lung transplant.

While she was here, however, she underwent a particularly horrible procedure called plasmapherisis during which her blood was cleansed of excess antibodies.  Having the line put in was the worst, she said. The doctor put it in the wrong place the first time and had to pull it out again and she could feel it ripping painfully through her heart. She said the actual plasma exchange part, a separate procedure to be done at intervals during the week, wouldn’t be so bad. However, when she came back from the first one she seemed pretty low. She said the procedure had made her feel so nauseous that she couldn’t even look at the walls. The doctors had to stop half way through.

Life after transplant, I suspect, is like this. In and out of hospital. Up and down emotionally. One procedure after another to grit ones’ teeth through. One health crisis follows the next – rejection, anaemia, various types of aggressive cancer. Your teeth can crumble and fall out. Your bones succumb to osteoporosis. Many patients get diabetes permantently.

And it’s not just about the patient. The patient’s family and friends have to go through this as well – endless hospital visits and driving to and from procedures. Endless medical check-ups for a variety of heightened risk factors. Constant emotional support that must be sustained for years and years.

I know there are good sides to transplant. I’m trying to focus on them as well. The other day when my dad was visiting he said, “After your transplant we’ll go mountain climbing,” which I have to admit sounds pretty awesome. Hiking, travelling, going back to uni and actually finishing a degree, getting a job like a proper normal person. These are all things that could happen.

However, hospital life is not exactly conducive of such thoughts. Currently, my world is sterile surfaces, flickering yellow lights, cannulas and needles, portable oxygen cylinders on heavy wobbly-wheeled trolleys and long stretches of linoleum with nothing more exciting at the end of them than eighties-patterned lounge chairs and a fish tank.

Perhaps hospital is the wrong place in which to be coming to terms with all of this. This is where all the bad parts of transplant life happen. This is the place you try to forget in between the other parts of your life. Your busy, proper, normal life – where perhaps, for a few moments every day, you are able to forget you are even sick at all.

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2 responses »

  1. maybe = just a maybe, if you see the worst of it then all the rest will be happy bonuses and your head will be geared up for post tx. We were getting “ready” learning and all that and i often wondered about people that have a sudden thing like cardiomyopathy and get transplanted inside a month or something have an unrealistic post tx picture in their minds – often brought about by media and the “smiley” stories of success without showing the hard yards in the background. Glad you have not got pneumonia, but you must have a bug in there somewhere…… I wonder if they are the same fish we watched for hours, i can picture where you are 🙂 Tim was the first patient on that floor when it opened. ( if it is the 10th) i think it was the 10th. that must have been 2002 i think. check it out and find out if it was 🙂 hugs.
    Oh yeah it is the weekend , watch out this is when everyone tries to kill people. Stay alert! LOL.

    I too am on prednisone and i just had nearly 3 mths on cyclosporin for an autoimmune crappola thingo. I look like Bert Newton. Cause my hair fell out as well..Geeesh!

    Reply
  2. i know this may sound like its coming from the lofty heights of (reasonable & taken-for-granted) health but ….for each person, whatever their physical, psychological, or emotional disability is, its HOPE that keeps them going & gets them through. i hope your hope is hopeful. ( a rose is a rose is a rose-full)

    Reply

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