Thursday, December 22, 2011

Next year all our troubles will be miles away (I hope)

I won't lie to you. It has been a difficult time.

There are now nine hours of dialysis to endure each night, and once the Christmas of plain turkey, no spuds, no chocolate and no alcohol has passed, I can expect to be increased to ten hours.

My blood results have continued to disappoint. Where once I was largely left alone by my medical people, there are now phone calls. They speak in urgent and sincerely sad tones about how young I am, how careful they need to be with me.

So as I prepare to head home for Christmas tomorrow, it is with a heavy heart. I have had a few meltdowns in recent days, which is unlike me. A lot of finding myself sitting in the dark, a lot of crying.

The extra hour lost to a machine every night has taken what stubborn fight was left in me after two and a half years and almost 1,000 nights of dialysis.

Robbing time from me. Even more time. Seven more hours every week.

I am entirely spent. Emotionally. Kidney disease has taken so much from me. It has chipped away at my physical health, my mental health, my relationships with my family, my relationships with my friends, my career, my plans, my twenties.

I wonder if this is what they do. If they leave you on the transplant list until you reach the point when death is preferable to this horrible existence.

In my case, they are certainly close to succeeding.


  1. I'm so sorry Regina. I am so hopeful that 2012 will be your year.

  2. I hope you've managed to have some sort of a happy Christmas, at least by being with those you hold dear. I really, really hope that this coming year will be the year for you.

  3. i am currently on pd and while its the not the best solution in the world have you thought about the alternative. I also did heamo and thats no barrell of laughs either what with perm caths getting infected and fistulas not working believe me there are worse things in this life than pd. I think you sometimes feel bitter with your situation as sometimes do we all but life is for living no matter what straw we draw. And we have to make the most of what we are given. I know its not all sunshine and roses but life is somtimes that way for everyone and i think if i was starting out on pd or about to start if i read your blog it would scare the bejesus out of me.

  4. Laney Tiggy - Thanks missy, I hope this is the year too.

    Susan - I did have a lovely Christmas, thanks. The New Year promises much, if the average wait for a kidney is now three years.

    Anonymous - I would hate to think that I am scaring anyone, and this is one of the reasons why I don't give any keywords to my posts now. I am not looking for people to come here if they are seeking out information on PD.
    My blog is the place I come to vent. I censor my words to my family, so as not to worry them. I censor my words to my friends, because I fear they will get fed up of hearing about dialysis. My work colleagues don't even know I'm sick. So this is my space.
    But maybe it is irresponsible to record my annoyances here. Maybe I should just keep an old-fashioned diary.
    What I will say however is that part of my intention for this blog was to perhaps encourage organ donation. And to my mind, it does little to improve rates if people like us just say 'ah ya, dialysis is grand'.

  5. As I read these last two posts my heart was breaking for you. I know that you were still looking forward to a transplant and to be blindsided from another direction like this!
    I know that the PD diet is usually a little more permissive than the Hemodialysis diet, but the strictness of the restrictions you are under is tougher than even my hemo-diabetic diet. Does your health team have any idea as to what caused the sudden change in your numbers?
    Please know that in this New Year I hold you firmly in the palm of my regard and wish you the best of outcomes.

    J Harper
    Regina, SK, Canada

  6. I read your letter today in the Irish Times. I am just so angry I could spit.
    A couple of years ago here, a brave PD patient whose transplant had been delayed due to bureaucratic farting around (she had a live donor match) went to the grand foyer of the legislature and did her manual PD exchanges there to shame our useless minister of Health.
    However these people have no shame.

    I don't know your system, but this is just so wrong, and your letter was so measured and calm, I hope it brings results for you and all others in a like case.

  7. J Harper - Good to hear from you, my friend! The diet is such a disaster. So bland. I have stuck to it though, and I have tests this afternoon which I am hoping will show some improvement. I really can't start on 10 hours a night. I don't have enough hours in my day to allow for it.

    As for my letter in today's paper, there is definitely something going on here. I suspect there was an order sent from on high: Delay the renewal of medical cards, let patients pay their own way for a while, save us a few euro. Pathetic.

    Hope your own health is ok these days

  8. Regina.
    I just sent you a chatty email.
    Reread some of your comments above. Sometimes we vent among ourselves to spare our friends and family some of our bitterness and burden.
    I'm glad I can sometimes talk to somewhere who is in a similar situation. It is just sometimes easier.
    J Harper