I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on April 14, 2010, 12:41:46 PM
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Waiting for a kidney transplant
REGINA HENNELLY
The Irish Times - Tuesday, March 23, 2010
IN THE two years since I was diagnosed with chronic kidney disease (CKD), I have come to despise a number of things – one of which is my own body. The other is people telling me it could be worse.
It is an empty phrase that does little to comfort and serves only to increase my levels of agitation with each passing fit and healthy person who delivers the line as if they were pointing out some silver lining that I have stubbornly ignored all this time. They should try being kept alive by a machine sometime and see how that reality bites.
The truth is that CKD is one of those joker diseases. It destroys vital organs on the inside, but leaves you looking exactly the same and possibly even better on the surface. It quietly enters your life with no great drama or pangs of discomfort or pain, but it gradually seeps into every ordinary moment until, over the course of weeks, months and years, it grinds you down.
I was diagnosed by accident at the age of 26 and for this alone, I will accept that I was fortunate. My blood pressure was checked on a routine visit to the doctor, it was high and the tests that followed showed my kidney function was severely impaired due to a condition called IgA nephropathy. At the point of diagnosis I had 35 per cent function, granting me one whole year to prepare myself for the inevitability of dialysis.
In those 12 months, the upheaval in my life was minimal. A few tablets in the morning and a few more at night were the only change that had to be imminently made to my daily routine. There was a list of foods to avoid. I was unimpressed that chocolate was one of them, but that meant a slimmed-down figure, and like any female product of such an image-obsessed age, that almost made up for it all. Almost.
It did not make up for the new version of normality I was forced to adopt last summer. Dialysis. I put it off for as long as I could, plucking out random excuses for my consultant as to why I couldn’t possibly go into hospital for the required procedure this week or next week. But my function had dipped below 10 per cent and with that decreased capability came nausea and swelling in my hands and feet and around my eyes.
The day I finally entered Merlin Park Hospital would turn out to be the last time I recognised my body as my own – a few days later, it had been mutilated. A catheter was implanted in my stomach which extended out from a wound just left of my belly button, ending in a connection device which is now my lifeline. Literally.
I am on peritoneal dialysis, a DIY-version of the treatment which differs from haemo-dialysis, the kind that requires patients to travel in and out of hospital three or four times a week. The equipment is fairly simple. I have a machine which I set up every night, boxes of five-litre bags of dialysis fluid and that tube in my tummy. For eight hours while I (try to) sleep, fluids travel in and out of a cavity in my abdomen, clearing my blood of toxins. In the mornings, I disconnect from the machine, weigh myself, check my blood pressure, change the dressings on my tummy, and record readings from the machine for my consultant.
The worst part is that tube. I am now 28 years old. No more than the woman on chemotherapy who finds it most difficult to deal with her hair falling out, having that plastic tube put into my stomach was the single most upsetting part of this experience. It is hideous and I hate looking at it. Second to that is the one and a half litres of dialysis fluid which I carry in my tummy all the time. This swells to about two litres with the accumulation of other fluids during the day, leaving me looking pregnant by midnight, every night.
It has changed everything and it has changed nothing. Being sick has made me feel 100 years old, but it has probably made me more bitter than wise. It has made me reckless in certain matters, because with diagnosis came a devil-may-care attitude to what were otherwise major preoccupations. It has taken away any sense of direction I had and left me feeling lost.
The most damning casualty, however, has been the feeling of invincibility, because that is what youth is – feeling you are going to live forever and that you are untouchable. That is what allows you to go out and take on the world without thinking twice or considering there will ever be a tomorrow that will be anything less than flawless. Facing your mortality at an early age changes that and I fear it is irreversible.
Like the hundreds of people currently hoping for a transplant, I play the torturous waiting game. I know that many of those others are waiting for hearts, lungs and livers and they do not have a treatment like dialysis to keep them going. This is where we kidney patients are “lucky”, but the good fortune is muted because dialysis is a paradox. While with one hand it grants you the physical ability to stay alive, with the other, it strips away the life you once knew, leaving it a shade duller and tainted with enough malaise to make you feel nothing other than weary.
I started out as a crusading warrior who was going to take on this treatment and ensure it didn’t affect my day-to-day running of the mill. I was almost upbeat about the whole thing, but that positivity has gradually faded. It’s the fact that the treatment is constant – every single night with no idea of when you will be released from it. It’s in every room of the house, it’s in my tummy all the time, it’s waiting for me at the end of every day, it accompanies me on every overnight journey.
As I say, it is the ordinary moments that are affected. As singular inconveniences, they would be insignificant. Not being able to stay out too late, requiring a nap most days, having to give up work, saying no to certain foods or even one glass of wine in case your blood pressure or potassium levels go up, going into a dressing room or a communal changing room and leaving again out of embarrassment for what people would think if they saw your tummy, not being able to go abroad (this would mean suspending myself from the transplant list while on holiday – a chance I’m not willing to take in case I miss a matching kidney).
These are all minor annoyances, but taken together and with no end in sight, they chip away at your existence.
It’s probably worse because I’m young. Being sick in your 20s is an isolating experience. Few of your friends or peers have the words to converse easily about tests or treatments. There is an awkwardness about this that I hate and it has led me to constantly minimise my condition, waving off concern and trying to convince well-wishers and sympathisers that not only will I outlive them, I will probably outlive their children also.
The most demanding situation in this regard still most regularly comes about when I’m socialising with friends of friends. I know they know but they’re usually afraid to mention it. I therefore feel required to break this particular stretch of ice – not gently with a little tap, but clumsily with a conversational sledge hammer. In the middle of small talk, I will throw in a comment like, “No, I haven’t any holidays planned for this year because I’m dying.” Or asked to do something simple like pass the salt, I might say: “Well I would, only for this pesky chronic illness.”
If there is a silver lining, it is that my doctors are confident I will get a transplant eventually. I could be two years waiting, they say. But then there is always the faint hope every time the phone rings that it might be the call. That is a blessing and it is what keeps me sane for every moment of this experience. Just don’t tell me it could be worse.
http://www.irishtimes.com/newspaper/health/2010/0323/1224266870184.html
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This is a brilliant piece. I am older than the author, so the social aspects of CKD aren't as important to me; part of the joy of being middle aged is that you no longer care that much about what your peers think, but the part about how it wears you down over the abyss of time...oh, I so understand that.
I wish we could all be there for that young lady and let her know that she is not alone.
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Actually, I've just posted a comment on her blog, inviting her to check out IHD. I hate thinking of someone feeling so isolated.
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I feel different then you MM. I think she is wallowing in self pity. She said things that did and didnt make sense. She said some people are dying with no means of staying alive like we do (dialysis). She said she hates people saying it could be worse. Look at last sentence i typed. I wonder how she would feel with terminal cancer and no hope of survival what so ever. That there is a hopeless feeling, and it is none to fun to watch someone dye that way either. I feel for her and her vanity she is young but she is also ALIVE with HOPE for a long and lasting future after a transplant.
me i am all to familiar with the people who say it could be worse. And i couldn't agree with them more. I could be a dialysis patient with no legs i wonder if she thinks that would be worse or not??
Any way i try to look at her condition or yours or anyones here on IHD i have to think. I am happy to have a disease that can be treated with dialysis and keep me here with the people i love one more day, day by day. I am happy to know i may get a new kidney and this alone gives me HOPE. could it be worse. Oh it could be so much WORSE. Just visit any local hospital and you could almost come out happy you have CKD.
Dont get me wrong i do see her point but at some point reality has to set in.
Ps i Do hate Dialysis but i have decided not to let it run or ruin my life more then it has.
:twocents;
Hopefully she will find a good support site if not IHD itself.
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I do see your point, paul.karen, and I don't disagree with you. But the "it could be worse" comment coming from someone who doesn't know better is hurtful and degrading. It is dismissive and unhelpful. I think she is wallowing in self pity a bit, but I can't fault her for that because it is part of the normal reaction to dialysis. I know I've thrown marvellous pity parties in the past, and I won't apologize for it...it's like lancing a boil. You wallow, and then you get on with things. I am glad she tried to make people understand what it is like, and if it comes across as self pity, so be it. At least it's out there.
My hope is that one day soon, she will leave her party and will be more accepting like you are. God, I hope the same thing for myself. We will get there, but it is a process through which we must pass in our own way. I don't want to make judgments about how other people are coping. She (and I) are just not where you are yet. :cuddle;
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Great article....Although she does seem alot more depressed then I ever was....
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I can kind of see where she is coming from. having CRF from the age of 24 i can see how it could affect her, and yes i agree with the pd cath image but i had the jugular cath before that and was ok with it.
I never actually went down the path that she has taken though (with her attitude) i have and continue to live with the attitude "i'd rather live with this than...." or "better me than my son" (becuase it happened during his birth and he could have been affected so much worse than crf) and i've always tried to find the silver lining in EVERY dark cloud.
As to the comment “No, I haven’t any holidays planned for this year because I’m dying.” i don't agree with that at all. I've never let it stop me from doing what i've wanted to do. If i have had to stop anything i've just put it on the back burner till later (eg studies becuase i couldn't think clearly enough to sit through Torts without falling asleep). I also refuse to allow myself to be embarresed by the scars and the added bits that CRF has left me with. My tummy looks like freddy kruger attacked it, i've had two PD caths, two jugular caths 4 vas caths, a wound vac (portable but noticable machine that constantly makes farting noises as it sucks fluid from an open wound).
I honestly believe that if you don't have a good sense of humour with CRF you wont survive mentally intact. You need to be able to laugh at your situation and move on and over it in order to actually live
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I agree that it helps immensely if you can find something to laugh about, but it takes some people a while to get to that point. Working through her feelings of anger and bitterness is all part of the process. When I spoke to the social worker as part of the pretransplant eval, she told me that most people work through the various stages of grief in their own way but that most get stuck on "anger". I hope she has a lot of support.
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I understand her feelings and think her piece is both poignant and well-written. I would never think that she ought not to feel the way she does because feelings are feelings and they're as individual as we are.
Personally however, I reacted very differently and I too was young. I started D at 26 but at 18 was told the day would come. It made me feel like I had to seize the moment while I could. An aunt accused me of being PollyAnna but it served me well although I never minimized the seriousness of the situation or the importance of working with doctors. I went to India and Asia at 20 in case I couldn't later...good decision although people thought I'd lost my marbles. One thing she mentions that I totally relate to was the PD catheter...I chose hemo in fact because I simply did not want the tube in my belly and many people would find my reasons silly if not ridiculous. I liked my sex life and felt that while my arm with a fistula was not a huge impediment, my belly was sacred and so I wanted to keep it "free". Sex was a comfort and an anti-depressant for me and made me feel vital and very alive. One partner btw, just to be clear that I wasn't acting out sexually. I had a subclavian catheter for awhile but I knew it was temporary. I also liked the idea of D being confined to certain hours (at that time it was 5 hour sessions three times a week) and I worked very hard to confine my thoughts about the whole business to those hours too. Sometimes I felt sad or angry or numb and I occasionally wrote down what I felt then threw it in the waste basket on my way home. I was sad about deciding not to have or adopt kids but my sadness was small compared to my concern that I might burden them with an ill mother.
Unlike her, I've always felt lucky although no one else thinks I am. But I was given a death sentence at 8 months old, my parents were told I'd last about 6 weeks and I didn't die. I had tremendous freedom as a child and wasn't overprotected despite being born a bit of a "lemon". I went to university at 16, I loved school and was good at it, I've had amazing experiences and if I died this evening, my life has been full enough. Not perfect, not always easy, not always pleasant or fun, but rich and varied, rewarding, interesting and stimulating. I've seen places that many will never get to...canoeing in the Arctic, I feel sure, was more spectacular than most would find it simply because I was "technically" never supposed to get there. Traveling down the Mekong River in Laos, thinking how smart I was to follow my heart out into the world, come what may, knowing that I'd probably never get back there but really aware of how each moment and experience would be mine forever.
I wish Regina all the best on her journey. Realizations don't come to us in one fell swoop, they creep up on us and if we make room for each moment of joy or beauty or human connection, they too can add up to a life well lived. The trick for everyone, I think, old or young, in sickness and in health is to survive the difficulties and the disappointments without losing the ability to recognize the things worth celebrating. That doesn't require exotic travel or extraordinary experiences...it can happen wherever we are because we take ourself with us everywhere, to the supermarket or to the doctor or to the ball and extraordinary things can happen in the most ordinary of places just as crap can happen in paradise.
I hope Regina keeps on writing about her understanding of herself. It's a great goal for each of us I think.
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As to the comment “No, I haven’t any holidays planned for this year because I’m dying.” i don't agree with that at all. I've never let it stop me from doing what i've wanted to do. If i have had to stop anything i've just put it on the
I honestly believe that if you don't have a good sense of humour with CRF you wont survive mentally intact. You need to be able to laugh at your situation and move on and over it in order to actually live
But she explained that was a joke she makes to people?!
Also, she seems to have a great sense of humour, I've been following her blog for a couple of weeks now, and I have to say, some of the stuff is hilarious.
Blog: http://this-limbo.blogspot.com