Sunday, January 16, 2011

On feeling poorly

It has not been my finest hour. These past few weeks I have been reckless, sleeping on the job - the job being dialysis and my duty being to watch my step each and every day because the divide between my life and death is not half wide enough.

The warning signs were trying to catch my attention, but I just wandered along, like one of Enid Blyton’s more challenged characters heading for a picnic in a minefield on what promises to be a thundery day.

My weight was dropping. Somewhere between the turkey dinner of last month and the world returning to work, I shed about five pounds. Another week on, and my scales was registering the lowest weight I have been in my adult life.

There were headaches too. They could have been put down to the remnants of a cold that would not go away, but the blood pressure machine poked a gaping hole in that theory. Last weekend, it hit 160/110.

My heart rate joined in. It went up to 115. Beating almost twice every second, the same way it would if I were distressed or terrified.

Not easy to sleep when your body is gone into fight or flight mode. So exhaustion also made a late entrance.

But all of these things can be ignored if you put the mind over the matter. Which is what I did, because no matter what else was going on, I simply had to make it into the place that offered paid employment every day.

When the work is casual and your bank balance is as limp as mine, you can no longer entertain sickness. You act at being able and willing and twice as enthusiastic as the person beside you.

But then the throwing up started and my vision became blurry and I started to feel a little shaky in the shower or when I moved from sitting to standing or even when I was just walking around the office.

I was having to get up half an hour earlier than necessary for work because I would need to set aside time for vomiting. That’s just not practical.

After several phone calls, progress of all sorts was made. I broke up with my consultant. The one who delivered the news of my kidney disease almost three years ago, way over there in the city that God chose as the location to test me.

It was all “it’s not you, it’s me...our long distance relationship just isn’t working...I need someone who can be there for me”.

He took it well in fairness. Referred me on to the woman who will bring me the rest of the way, to transplant and the new life beyond. Having heard my symptoms, she agreed to clear a lunchtime to see me. The tests were done and she had three guesses about what was wrong.

I like this woman. I like her proactive approach. She made changes to medication, changes to my dialysis regime. She took me off my energy injection but I will forgive her for this in time.

The worst of the symptoms are gone. My weight is slowly creeping back up and my face is filling out again. I am back to my usual throwing up routine.

I must not take my eye off the road ahead again. It’s that kind of recklessness that sank the Titanic. And I can’t swim.


  1. Oh my God, Regina,Please take care.

    Though with the condition it is hard to tell the difference at first between the normal feeling crap that is everyday with ESRD and the onset of something else that is serious.
    I had 2.5 liters of fluid drained from around my lungs on Friday, and I never knew that there was anything wrong. A chest X-Ray just before Christmas showed something wrong.
    The temptation to make things seem as good as possible except for the ESRD is huge; to get through the days it is necessary to believe that only one thing is wrong. The other temptation is to ignore other things, because really, when you are already f***ed what else can really go wrong. But already know this. Just as your blog is a big help to me in knowing I'm not the only one going through this I hope I can somewhat strengthen you (though I don't express myself anywhere near as well as you do).
    I may have to break up with my GP but he has been so good to me for so long that I hesitate to hurt his feelings. He hooked me up early with my consultants and that was all very good for me but now he has is own health challenges and I may need someone else but don't want to abandon him as he never abandoned me. I know what I should do, but have no idea how to do it.

    High Blood Pressure and Diabetes are some of the causes of Kidney Disease, Kidney Disease causes problems with HBP and Diabetes, it is a wonderful feedback loop.

    If you want to use it, you have my email

    John Harper
    Regina, SK

  2. Getting up earlier, so as to make time for vomitting. Yes, I remember this when I was in my final year of college. And choosing a seat in the library close to the toilets for said vomiting.

    And I remember the day my GP told me that was not normal, and because I had grown used to it over many months, being stunned.

    I remember having to stop seeing a consultant in Galway, and instead attend one in Limerick and being happy I made the change. (Both those consultants have since retired. )It is a tough decision. It is a hard thing for a young person with no medical training to look a doctor in the eye and tell them you know better than them! Although maybe it gets harder as you get older and you lose the confidence of youth.

    Though being on dialysis is a training in itself.

    Take care, Regina!

  3. John Harper - Fluid in my tummy is uncomfortable enough. I can't imagine dragging around fluid in my lungs. Mad that you were unaware of it. But you are right - it's difficult to distinguish between feeling 'normal crap' and more 'extreme crap'. I hope you're feeling better now.

    Eoin - I vaguely remember a time when I used to be afraid of throwing up. Way back when it was a rare event in my life. Seems almost quaint now! I have no problem telling doctors that they are wrong. Most don't know anything about PD. I accept the neprhologists are the experts, but still, they could read all the textbooks in the world and they'd still never know what it feels like to be stuck with useless kidneys.

  4. Well I went to the supermarket today to buy prune juice and some toilet roll. They were the only two items I bought. I only realised the giveaway this was when smirked at by the nice checkout girl.

    Antibiotics can play havoc with the digestion.

  5. Sorry to hear you've been feeling so unwell. Sounds positively awful.

    Did you know you might have a new star sign?

    They've added a 13th sign of the zodiac (might be a Hallmark-type scam!), and a lot of people have changed sign.

    Hopefully if you have a new one, it might bring some well-deserved luck:

    Capricorn: Jan. 20 – Feb. 16
    Aquarius: Feb. 16 – March 11
    Pisces: March 11- April 18
    Aries: April 18- May 13
    Taurus: May 13- June 21
    Gemini: June 21- July 20
    Cancer: July 20- Aug. 10
    Leo: Aug. 10- Sept. 16
    Virgo: Sept. 16- Oct. 30
    Libra: Oct. 30- Nov. 23
    Scorpio: Nov. 23- Nov. 29
    Ophiuchus: Nov. 29- Dec. 17
    Sagittarius: Dec. 17- Jan. 20

  6. Regina and Eoin, hearing your experiences is why I keep returning to this blog, because it helps me remember what is normal and what isn't. With me too, things had gotten to the stage when I thought the throwing up was just a normal part of the day. Fortunately that is now not the case, but it is scary how easily one can adapt and start thinking that things like that are normal. About the only good thing about PD for me (aside from the whole not-dying thing) is that I no longer regularly vomit. I am older than both of you, and I think that willingness to challenge doctors is due more to the high stakes and seriousness of the disease rather than age. I am much more upfront now than when the stakes were lower.
    Best to you both

    J Harper
    Regina, SK

  7. Holemaster - Thank you for those details. I hope you haven't been swined and that the antibiotics are for something less potentially fatal.

    FK - I heard that nonsense about starsigns shifting. A load of rubbish. I'm a Piscean through and through. I have the daydreams, the lack of ambition and the passive nature to prove it.

    John Harper - I have heard the people who are on haemo throw up a lot more than PD patients. I think part of my problem is my last fill. It makes me feel weird at times. But the good news is my new consultant is considering leaving me 'dry' during the day from now on, so that might help.