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The Strange Case of Dr Less and Dr More

Things with me have been a little weird lately. I don’t seem to be getting better. Every night, my temperature suddenly spikes over 38C and I feel strange. Even my eyeballs feel hot. My mother brings me Panadol and an icy pole, and it goes away after a few hours. The next day I feel the same as I always do; which is tired.

Tired, tired, tired.

Yesterday we went back to the hospital to run tests to find out what the temperatures mean, and for a general check up. We waited for two hours to see one of the specialists who was looking after me in hospital; Dr Less-Dreadful.

Dr Less-Dreadful says things like, ‘You don’t seem to have quite so much fluid on your stomach so maybe your putting on a bit of weight.’ This makes me think I might be getting better, and feel happy; hence the ‘less dread’.

Unfortunately, another specialist, Dr More-Dreadful-Than-Anyone popped in a few times during the consult, shook his head sadly, and said things like, ‘You’re just not getting better. You might not even make it to transplant. We’re going to start you on Flolan as soon as we can.’

When I was in hospital Dr More-Dreadful-Than-Anyone always seemed to be the one who would give me the worst news. These doctors all seem to have differing opinions, and his were consistently the most depressing to hear.

And yesterday, Dr More-Dreadful followed up his usual statement of doom and gloom with, ‘You might do really well on Flolan and not need a transplant.’

Hang on – is this depressing news? The possibility of avoiding big scary monster under the bed transplant? Isn’t this what I wanted? Isn’t this what any normal person would want? You would think that this news would have made me declare my specialist ‘Dr More-Wonderful-Than-Any-Other-Doctor-Living’ and campaign for a national day in his honour.

But it didn’t.

You see, I have kind of been getting used to the idea of transplant. I’ve been thinking that although it’s scary as hell, and painful, and involves a mind-boggling amount of medication just to stay alive, and although there are all kinds of risks and different diseases to deal with afterwards that it might just be okay. I’ve been thinking of how many people recover very quickly, have few problems, and go on to lead almost normal lives, often for more than twenty years.

I’ve been thinking things such as, ‘After I have a transplant I’ll be (almost) like a normal proper person again. I’ll be able to work, travel, wear the clothes that I want to wear. I’ll even be able to fit into my lovely vintage woolen skirts that I miss wearing so much. I’ll actually be able to wear my favourite black knit stockings with little cats printed on them again (yes, I’m a crazy old cat lady; it happens). And if I wanted to, I could get up early every morning and go jogging. I could randomly break into a run and just keep running. I would be able to live in a house that has stairs. I wouldn’t even notice stairs any more. There will be many, many, things that are such huge obstacles now that I just won’t notice any more.

But the aspect of post-transplant life that I felt most strongly about is that I wouldn’t have pulmonary hypertension any more.

I am so phenomenally sick and tired of having pulmonary hypertension. It’s boring and depressing and exhausting and I would love to just not have it any more. I want it gone from my body. It is not welcome, and never was. After transplant, I may well have a host of other lovely diseases, who knows – but I won’t have pulmonary hypertension.

In any case, the entrance of Flolan into my life has snapped me out of all of these rather idealistic thoughts. Flolan is an intravenous drug that is fed directly into your heart via a central line. This means you have a thing sticking out of your neck all the time attached to a pump which you have to re-fill with medication once a day. You have to maintain the site and prevent infection, which could be life-threatening. You have to keep the medication below a certain temperature, so the pump is kept in a little bag surrounded by icy-cold gel packs. It’s a very strong drug, and side effects include bad headaches, jaw pain, and various other lovely symptoms.

It’s a scary, scary, drug.

On the up-side, people on Flolan do pretty well. If the drug agrees with me, I could even be doing many of the things I hoped to do post-transplant.

Dr Less-Dreadful still thinks transplant is the best option for me. He thinks it would give me a proper life, one where I wouldn’t be hooked up to a pump. This could be true, but then I also might have a longer, and nearly as fulfilling, life on Flolan than I would with a transplant.

Both doctors, however, agree that I have to go onto this drug very soon. Whether or not I have a transplant later down the track will depend on how well I do on it, and also on what I feel about my quality of life. So in a few weeks, I will go into hospital again (something I am not looking forward to), have the line placed, then the nurses will teach me how to use this drug without killing myself.

I’ve known about this drug as a possibility in my life for many years, so it’s not a total shock. I’m sick of being sick, and tired of being tired, and even if this drug is difficult to live with, it at least represents some kind of change. Hopefully a good one.

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4 responses »

  1. What a tremendously brave post. Thank you.

    Reply
  2. It’s such a rollercoaster of emotions – swapping one lots of medicines and complications for a different lot of medicines and complications and weighing up what is the right decision.
    I ended up ultimately putting my trust in the opinion of the Resp Specialist I’ve been seeing since I was 15. I just blatantly asked that after debating it for the last ten years, if he were in my shoes, did he think it was finally the right time to cross that line to Tx.

    I didn’t realise that you wouldn’t have PH after Tx. That must be so strange to contemplate after all these years.

    I love the line – I’m sick of being sick, and tired of being tired – ditto to infinity!!!

    Reply
  3. I’ve been reluctantly reading your well written blog.
    I’ve been sick for a couple of years, with sino-pulmonary stuff that the doctors can’t figure out. (A couple of sinus surgeries, a few bouts of pneumonia, a bronchoscopy that landed me in hospital for 5 days, and consistent O2 sat drops on 6 min walks)
    When I read yours and Cam’s posts I realise I’m doing pretty darn well, but I just have been looking for other people who are not completely well, so I don’t feel like a complete basket case!
    I’m not willing to admit (yes, even after 2 years) that this is long term.
    PH is one of the things they are testing me for, but I’m going for glass half full and believing they’ll find nothing. Going in for the bike ride (that my resp specialist says I’ll fail to complete) in a month. Then the right heart catheter if he’s still unhappy.
    After a year of seemingly 100’s of tests (including cystic fibrosis?!?!) I’m actually trying to get my head around the fact there may never be a neat little box (that’s kinda me anyway) to pile my symptoms into, but rather treat the symptoms and learn how to live life with lots of intervals of rest.
    I still keep coming back here though, because you and Cam are the closest I can find to what I feel (and yet you are both soooooooo much sicker than me).
    All other chronic illness blogs are about chronic fatigue. I don’t have that. I have exertional fatigue because I’m not getting enough oxygen. Totally different.
    Anyway. Late night rant.
    Keep writing good stuff, and hang in there.

    Reply
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