Kidney Failure, Dialysis And My Fight for Normality

Ghost World.

Diagnosis and the ticking clock

I was diagnosed with a nasty genetic syndrome at the age of 12. I recall my mother's tears and the ticking of a time-bomb begin to echo within the halls of my mind.

Fortunately, I was told, that the variant of the syndrome was benign. Something I find a little disconcerting today (with regards to speculating on what the Malign version entails). I lived normally, fiercely and without bowing-out. I never felt in any way different to any of my friends. I participated, excelled and spat in the eye of those few words written hastily on a sheet of paper.

The prognosis? Irreversible chronic Kidney failure. I chose to ignore it, there was little I could do to moderate the effects of the illness, and the predictably dipping curve of my test results where met with a cold, measured gaze and bland indifference more often than not.

As I approached my late teens and the advent of my 20's. I began to understand that "my time" was drawing near. There were no obvious symptoms, no drama filled hospital scenes. The only thing of note was that my blood pressure had started to climb ominously.

My appointments with my nephrologist become more frequent, the meetings longer, the tension more palpable. And yet, I felt fine. I was asked, "Do you feel tired?" To which I would dutifully respond, "Nope!".

Eleven years after my initial DNA diagnosis, events began to accelerate at an alarming pace. We visited another doctor before embarking on our yearly sea-side holiday. This particular doctor erupted in a fury when he was presented with the results of my latest scans and blood test. I learned that not only did my results warrant Hemodialysis therapy. But that the doctor was openly astonished that I wasn't crawling on the floor in exhaustion.

He said that my red blood cell count was frightening low, and that I should be in hospital. With a shake of his head and a setting of the shoulders, I was politely, but forcefully asked to remain in the hospital while my mother fetched my belongings from home.

The next few days passed in a nightmarish haze. The day after being admitted, I began to feel incredibly weak, I lost 5 litres of water in 4 days. I was so tired that sitting-down was an effort, and lying down felt like jogging. The sudden and violent onset of these symptoms struck my psyche. I felt lost and scared.

Several days later, I was told I had to undergo surgery on my arm, and that a fistula (artificially enlarged artery for dialysis treatment) would be installed. They hoped that they would not have to perform emergency surgery and install a catheter before the fistula had time to develop. Without really knowing what they meant I nodded and 11 years of anticipation, gave me a firm resolve and courage. I could take anything! This is it!

The operation was successful and only mildly discomforting. I had a few bouts of low blood pressure due to the pain medication but that was about all. With a pat on the back and an incredibly strict a-proteic diet I was sent home and asked to chose a location where I would continue my treatment with long-term Hemodialysis.


A lonely odyssey
A lonely odyssey

Hemodialysis.

Nothing could have ever prepared me for Dialysis. I had viewed it from afar, I had seen but not understood. Dialysis is not just a treatment, it is all-enveloping. It is a lifestyle.

My first dialysis session took place in a joyful little private clinic near home. For readers who don't know what the treatment involves, I will summarize by saying that two 15-gauge needles are inserted into your arm (all the way). Your blood is filtered and carried out of your body into a machine which filters it and cleans your blood.

The insertion of the needles was surprisingly painless. The pain seemed to last a few moments than pass. The problem though, is that for three-and a half hours, these leviathans will remain inside you.

I lay back, feeling overwhelmed and shocked. I made a point in being optimistic, smiling a lot. I heard the whirring and buzzing of the machine turning on. Suddenly, I felt a weight on my chest, crushing the breath out of me. My lips began to hurt and I could feel them turning blue. The nurses and doctors around me gesturing wildly, but I couldn't hear them. A rushing in my eyes drowning all sound. The machine was turned off, and after a few nerve wracking seconds everything returned to normal. I was told that I was incompatible with the filter and had suffered an Aorta spasm. I nodded, and despite the fact that a deep, oppressive despair had set upon me. I screamed defiance within my own mind, and steeled myself. I only needed to endure, nothing more.

Life on Hemodialysis

I came to understand the mechanics of my new life. My water intake limited at 500cc a day. Anything more and I risked having anything from, a tortuous dialysis session with unpredictable blood pressure values, to death by pulmonary edema. It may seem easy to not drink. Although I assure you that when your body is not rising itself of salts, you feel like you've had 3 McDonalds meals without being able to drink a coke. It is a form of torture, reminding me of the plight of Tantalus.

My food intake was limited also. Potassium was a serious concern. I was told that bananas and apricots were tantamount to suicide. High phosphorus levels (my personal problem) could lead to bone weakening. A problem many had, it is why if you visit a dialysis clinic many people will have casts on. Creatine levels, Nitrogen, urea and more. I played the clown, juggling these values as best I could. Fighting for time, fighting to retain my health until I could have a transplant.

During the course of my odyssey, I began to do various important tests to allow me to undergo a kidney transplant. I had myself put to sleep for most, but a few humbled me in ways I had never imaged possible.

As time went by my creatine levels began to rise and my Dialysis treatments were extended to 4 hours, and began to feel more like marathons by the time they ended. They were exhausting and oftentimes painful. My blood pressure all over the place, and I began suffering from cramps and stress-related panic attacks,

I began to take prescription drugs to help me cope with the stress. Something I was I had never done.

Two-and a half years later, on a rainy unassuming Friday night, I was called by the hospital and informed that they had "a kidney". I casually agreed to undergo surgery and hung up feeling bewildered. I felt nothing, I stood staring at the wall for a good ten minutes. Phoned my mother, my friends and made my way to the hospital.

A way out
A way out

The Transplant

My fear and aversion to dialysis was such that the prospect that a transplant could fail and a kidney rejected never occurred to me. I couldn't wait to get it over with. I was so eager to jump on the surgical bed that my enthusiasm was misread as fear, and give a hefty dose of my usual relaxant.

After an exhausting morning filled with tests and questions, I was lead into a frigid surgery room, where I was mercifully put to sleep.

Only to awake in a sea of pain. I was semi-conscious. I could hear only voices, "Can you feel pain? Does it hurt?" I don't know if I screamed or not, but I lapsed once more into sleep as the morphine kicked in.

In all truthfulness, the stay at the hospital was almost pleasant. When you have felt thirteen years of constant decline, knowing that it can only get worse. To a situation where things can only get better. Well, needless to say you find yourself smiling, constantly. I smiled as I winced in pain, I smiled at the doctors. I smiled, and smiled some more. A smile which hasn't left my face since.

I feel eternally grateful. I have been given a new life. A beautiful new life. I am changed, I never tried to change. But I have. The simplest acts are amazing to me. To be able to drink a half-liter of water, without fearing for my life. To cave-in on occasion and to grab a McDonalds. Sleeping in, running. Things I dreamt of for years, accessible to me once more. I revel in them, taking nothing for granted.

In closing, I would add that one of the most common questions I am asked is, "What does it feel like to have someone's organ inside of you, does it bother you?". A question which has become easy for me to answer now. No, it doesn't bother me in the slightest, because this is exactly what I would want my organs to be used for as well. Call it a last wish. I hope that I can save someones life one day, and repay the debt.

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Comments 46 comments

Mr Nice profile image

Mr Nice 8 years ago from North America

I understand the feeling and pain you went through your early life because my cousin went through the same situation you explained. You are lucky that your transplant was successful with no rejection but my cousin's kidney transplant rejected and he died two month's after the transplant. I wish you happy new year & good health.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Thank you very much for your comment. Believe me when I can say I know what that means. I have also seen the devastating effects that kidney failure can have on the victim's loved ones. When I had that Aortic Spawn I mentioned early on in the hub, I remember my my doctor telling me that they had to lay my mother down in a bed in an adjacent room. Happy new year too you too ;)


sminut13 profile image

sminut13 8 years ago from singapore

it's really touching. great hub


Veronica profile image

Veronica 8 years ago from NY

Thanks for sharing your story. It's hard to imagine what you must have gone through. But your writing skills are apparent, and you've relayed the story in a very compelling way. Congratulations on your "new life."

The artwork at the end of the Hub is incredible. Did you draw that?


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Thank you sminut13 and Veronica!

The Artwork is a placeholder I'm afraid, it is a picture of Tantalus, I thought it apt as a parallel for hemodialysis patients in general.

Thanks again!

Thoog.


Veronica profile image

Veronica 8 years ago from NY

I figured it was Tantalus, but I never saw that particular piece before. No artist is given credit, so I'm wondering if it's yours? It's beautiful.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

The picture was labelled as free for for non-commercial use, I've sent the author an email, no reply is coming, so unfortunately looks like its going to have to go :(


Veronica profile image

Veronica 8 years ago from NY

Actually, it might not. Although the artist might want to be credited or linked. It's the perfect pic for your article. I just love it. It would be a shame to take it down.


Dennis Freire profile image

Dennis Freire 8 years ago

Thoog, you don't take life for granted, do you? Yours is an amazing story. Your began your exposition with a fantastic image: "I recall my mother's tears and the ticking of a time-bomb begin to echo within the halls of my mind."

That ticking must have been incessant and loud.

Do you still here the faint sound of ticking? Is now the ticking, not of a bomb, but of a clock, wound to comparatively the same mortal time as most other people?

I have much respect for you and join you in feelings of gratitude for advances in medicine and generosity of donors.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Thank you Dennis. WIth regards to the ticking. While there are those that would argue I still walk the on the razor's edge with regards to kidney rejection. No, I do not. I have shed that particular fear.

Thank you for taking the time to respond to my hubs! (will return the favor!)

Thoog.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Thank you Dennis. WIth regards to the ticking. While there are those that would argue I still walk the on the razor's edge with regards to kidney rejection. No, I do not. I have shed that particular fear.

Thank you for taking the time to respond to my hubs! (will return the favor!)

Thoog.


Iðunn 8 years ago

It's very difficult to know what to say for a shared experience like this, so what I will say it thank you for sharing it. I've been blessed with healthy children and I know it's a blessing. Reading your hub I kept accidently stumbling into your mother's feelings and seeing me as her and my heart goes out to you, her and your whole family.

I'm glad you are here.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

In hindsight, it's not nearly as terrible an experience as one would imagine. In fact, I'm beginning to thing that eventually I'll begin to value the effect it has had on my life. I remember seeing a lecture on youtube about absolute happiness or something along those lines.

The researcher look at the comparative happiness of two people, one who had won the lottery, and one who had lost the use of his legs. A after their "ordeals" they were both equally happy.

I find that I enjoy certains things far more than I ever have!


Iðunn 8 years ago

there was an interesting study on happiness compared by countries.  the U.S. with all it's affluence wasn't even in the top 10.  many nations one might consider third world weighed in much higher.  if I can dig it up, I'll hub it or e it to you or something.

I think one of the better definitions of happiness is aristotle's happy man and it mostly had to do with being a good person with regards to others.

a recent movie I watched reiterated that thought... it was called "the lives of others", german I think, and in it the characters were least happy doing things for themselves, even when they were successful at it and most happy doing things for others even when they personally suffered for it. 


Theophanes profile image

Theophanes 8 years ago from New England

You certainly have a fine grasp on how to describe the things you're going through. I'm sitting here cringing thinking about being able to feel your own lips turn blue. That must have been terrifying!

I knew people on dialisis had to stay near the hospital they got their treatment from, often making travel impossible, but your descriptions seemed to have added more reality to that image. Good for you for going through all that and coming out on the other side. I hope your new kidneys can keep you healthy for a long while. Keep on writing, you certainly have a knack for it.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Thank you for your comment Theophane!

Yes patients need to stay close. Potassium peaks, fluid retention make need emergency visits . Dialyiss is usually performed three times a week, making travel all but impossible. People do travel however, but to places that have dialysis machines, and there are quite a few actually!

Again, thank you!

Thoog.


JamesRay profile image

JamesRay 8 years ago from Philadelphia

This is an absolutely remarkable story. You are a hero, dude. Cheers to your good health.


Marisa Wright profile image

Marisa Wright 8 years ago from Sydney

Let's hope everyone who reads this Hub signs up as an organ donor. In Australia, there's a register you can sign up for to ensure your wishes are properly recorded and carried out.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Yes. its amazing what you can do for someone, truly amazing.


rogue nestling profile image

rogue nestling 8 years ago

This is an amazing insightful piece. I never had any idea how uncomfotable and scary dialysis was, aside from the time I knew it took to complete. I imagined people sat there and watched TV or read during the procedure, I never considered the pain and fear they experienced.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

There were times where it was as you describe. With the only thing you have to fear being boredom. In a sense you are largely responsable for how you feel in dialysis. If you drink little, you have less fluid to lose for instance. Unfortunately the stress was really a factor in my case. It tended to amplify things somewhat.


Robin profile image

Robin 8 years ago from San Francisco

What an amazing story. You are such a talented writer, and anyone who doesn't believe in organ donation should read this hub. It's amazing the things we take for granted, our health being one of them. I wish you a healthy, happy rest of your life. ;)


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Thank you very much Robin. It's amazing what things I can enjoy now! I wish I could apply it to all things in my life though. Its amazing what a good kick in the teeth can do!

THanks again!


Stacie Naczelnik profile image

Stacie Naczelnik 8 years ago from Seattle

This is a wonderful story. I recently decided that I'm being selfish by not giving blood. I'm scared, but I have a blood type that is in need. I'm an organ donor as well. I like to think that those who donate are helping those in need, like you.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

I respect organ donors a lot for obvious reasons, why are you scared of giving blood?


Marisa Wright profile image

Marisa Wright 8 years ago from Sydney

There are a lot of misconceptions about giving blood, one being that you can catch diseases - which is utter nonsense. Are there really people who don't believe in organ donation?


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Most of my family, but I think they've come around somewhat now. From any perspective you take, religious, moral, social, whatever, it is simply one of the purest more altruistic gestures you can and will ever do.


Whitney05 profile image

Whitney05 8 years ago from Georgia

Wow what a story! It's very touching.


Marilyn1947 8 years ago

Thank you for that wonderful piece James. You captured my feelings about hemo down to the last comma! Am now on PD at home which is better but still confining.

I first saw you on the Davita site and there are so many sad stories. i too am waiting for a transplant and have a lot of concerns even tho I have a live donor. I feel so much better after reading your story. As a retired Emglish teacher I can only tell you " Never stop writing"


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Marilyn, of all comments here (and they've all been wonderful) yours means the most to me. I feel warmer now by reading it. As a PD patient our treatments are a little different, but our paths are the same.

As to the transplant, let me tell you this. We havd 30 other kidney transplant patients in the ward. All of them were doing fine. The person next to me had acute rejection, but they salvaged it! They were trying to kick me out(in a nice way, it was me that protested!)after 7 days.

My heart goes out to you. Let me know (in one form or another) when you get your operation done so I can have a virtual beer and toast to your new life.

Thoog.

Oops one more thing: I found a single dialysis session to be far more painful and overwhelming than anything the transplant could throw at me. The biggest problem is frustration at all those bloody tubes! I had 4 that I could remember. And of course the desire to go home and have that 2 liter bottle of ice-tea (believe it or not, I'm never thirsty now, they're telling me to drink MORE!)


Marilyn1947 8 years ago

That's very good to hear. I was on hemo for 6 months before the PD and the stress and frustration was the hardest thing I ever delt with but could never put it into words. Many people accept it so gracefully that I felt guilty I even had choices. I have been battling with c-difficil , one of the super bugs that is in the gut. As a result the transplant has been cancelled 4 times . I feel a bit like I'm on a roller coaster. But I do beieve that I have to "live for today and not live for the transplant, as babdly as I want it to happen.

Thank you again for this articulate and heart-warming story.


adventure profile image

adventure 8 years ago from U.S.A.

Thooghun, you are a true survivor. Big time. You have an attitude to be admired by the world. You kept smiling even when that long, slow sunset was nearing the horizon. That sun never hit that horizon. Instead, it began to rise again. YOU, my friend, have risen. You have come back. Live long, Thooghun, and live to the fullest.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Adventure, thank you very much!

I might have overstated my positivity (as it were). I wasn't the happiest soul in the world (to put it mildly) on dialysis. Frankly, most people took it better than I, and lived normal lives. I just fought it, I could never get used to the lifestyle. I agree with the second part however , I really do feel like I've "come-back"!

Thanks you your wonderful comment adventure!


8 years ago

Thank you for writing this.

I am a relatively new health care professional, caring, for the first time, for a woman who has suffered sudden and irreversible kidney failure. She is devestated and scared, and I have been looking for personal stories that might give her hope. I know yours will mean so much to her. Thank you.


ROSA P 8 years ago

WHAT A STORY... MY MOM IS 53 AND NEEDS TO START HER DIALYSIS


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Hello, thanks for your comments. another year has passed and still going strong ;)


william epinger 8 years ago

I am 44 years old and am on dialysis. I hate it. It keeps me alive, I hate it. I am waiting for a transplant or should I say waiting to hear I am on the waiting list for a transplant. I trying to hang in there long enough to recieve a transplant only because a transplant beats dialysis. I met a guy during my workup whose kidney was failing, turns out his wife had donated him a kidney 10 yrs earlier and now it was failing. This was sobbering because this was a young guy half my age. After I get my transplant if I get one I can't go back to dialysis I just can't so if the transplant does not work out I am done. I need a cure but stem cell treatment is 30k and insurance won't cover it with two kids I am not a rich man, but I have to find a way dialysis leaves me so drain I have only energy to work dialize the crawl home and sleep this is no life.


thooghun profile image

thooghun 8 years ago from Rome, Italy Author

Hello William, I've been absent on here for awhile, but this article is particularly important for me. I know how you feel. It is no life, but you have the possibility to do a transplant, and it will be successful. My life has changed completely, it almost feels like I never went on dialysis.

I've had some ups and downs. Viruses, over-mediaction and all kinds of nephrotoxic threads, yet through all the skull-and-bones scenarios I was warned about and in some cases went through, the kidney is still there.


chicamom85 profile image

chicamom85 7 years ago

Thank you for this interesting article and for sharing your life.


julie  6 years ago

wow what an amazing story im so happy ur alive and well now i just find out today my dad needs to start dialaysis and probably a transplant soon we have the same blood type so i will give him my kidney


thooghun profile image

thooghun 6 years ago from Rome, Italy Author

julie, thank you for relating to the essay. I'm glad you're thinking of your father, but know that nowadays cadaver organs are an option as well.

Walt: Thank you for your story, I did read it ;)


Anna 6 years ago

I am 24, and realized at the age of 21 that I had chronic kidney failure and was going to need a transplant. By the time I went to the hospital, I my blood count was a 4, and so things all happened so quickly. I was on dialysis for a year and a half before I received a transplant. I remember the days of numbers constantly running through my head, water, sodium, potassium, phosphorus, what did I eat? how much more can i drink??? Enough to drive someone crazy... When you say, "The simplest acts are amazing to me" I 100% agree. I have changed... for the better and I love my life.


thooghun profile image

thooghun 6 years ago from Rome, Italy Author

Anna, thank you so much for reading. Our stories and reactions are very similar it seems, and it means a lot that someone who has been through a similar "adventure" can relate.

Thanks!


Dennis 6 years ago

My wife's name is Maribel and she's having dialysis for almost 5 years. I am impressed by your story and really wanted my wife to have a new life as well. Thank you for sharing this to us with kidney patient and really encouraging. Afterall there is hope. May God bless you with your new life.


thooghun profile image

thooghun 6 years ago from Rome, Italy Author

Hello Dennis! I wish you and your wife the best.


Deric 6 years ago

My wife has gone thru her dialysis months, and then a transplant last month, now she's going through rejection, and i'm at loss of what to do, it's hard to maintain calm when your loved one's life is placed in the hands of the doctor. I'm still hoping and praying that she'll get better again.

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