kidneys and cancer

Last night I was at the nephrologist’s clinic and it struck me how different the atmosphere was from when we visit the oncologist.
Cancer is noisy the way renal failure is silent.

Go up to someone, tell them the word cancer. Watch them panic.
Now go up to this person again, and say renal failure. Watch them give you a curious or confused look. Now try saying dialysis. Watch their expression again. Just watch.

***

At the oncologist’s office, it is never quiet. Outpatient departments are noisy. Go on, spend a day at one. You’ll know what I mean.

Cancer day care centres can be the noisiest places in the world. Patients talk to each other. Relatives talk to each other. People just strike up random conversations.

At a hemodialysis centre, people pray. I’m not kidding. They pray. It is quiet. It is crowded but it is quiet. Nobody is really talking to anyone else, although sometimes families that come in together talk amongst themselves. Mine doesn’t. We just sit. Lots of other people just sit as well. Sit. Stare into space. Meet the doctor. Go back home.

***

At the nephrologist’s clinic, I played Guess The Patient with myself. People on dialysis aren’t automatically bald, the way people on chemotherapy are. So you would think this is a more challenging game to play.

The thing is, I am incredibly good at Guess The Patient, and I suspect everyone at the nephrologist’s clinic is good at this game as well.

I can tell who is on dialysis by the way they walk. Yes. Their WALK tells me.

Sigh.

Unbelievable.

***

Maybe the difference is that with chemotherapy you have a plan. Your doctor decides how many cycles of chemotherapy you need; you go through them. You either make it out alive or you don’t. There is a time-frame to this madness, it is definite, and usually, you have a clear idea about how it is going to end. Words and stress collapse into one another and people talk. You can hear the sound of the tension, it is tight, it is rough, it is bursting at the seams, and there is noise.

With dialysis, you float and breathe. There is hope and there isn’t hope.

Dialysis keeps you alive, as long as your kidneys can last. Maybe just a few hours more or just a day more. Or maybe a year. Maybe twenty years. Everything is possible.

I don’t know how this will end, neither do you.

So you reconcile, sit tight and wonder.

Silence is that special space in your head where you imagine the worst and you imagine the best and you sit and watch wide eyed when the two meet and kiss.

what i have learnt about adulthood

Most jobs are dull and uninteresting. So unless you are fortunate enough to be rolling in your family's wealth you will just have to suck it up.  

Smile, make small talk, be pleasant, call it friendship. It's your network. 

Read EVERYTHING before you sign it. Take the time out to read it. Knowledge is power. 

If you have dependents, do everything in your power to take care of your health. Your health is your wealth, it really is. 

Money can buy you independence. 

Be financially independent. Nothing beats the power money gives you to take your own decisions. 

If you don't own a house and cannot afford to pay the movers and packers, practice object detachment. Rent leases don't last forever and neither will your children's willingness to physically move every fucking thing you own into your next house. 

Things rarely go according to plan. The universe is filled with too many unaccounted for variables. Everything can change in an instant. But if you've financially planned for it, you'll survive the change. Most likely, you are not going to have the time to deal with your emotions. Just move on. Time changes everything. As does context. What troubles you today will not trouble you tomorrow.

pain

That one incident that forces me to acknowledge that I probably cannot love you anymore.

The immediate aftermath of this moment, where I ask myself what I will feel like at your funeral.

The memory of the time I agreed to care for you because someone both you and I loved asked me to look after the family on the day she died.
 
The realisation that in order to continue caring for you, I need to stop loving you.

The realisation that people change. That you have changed and that there is no point in crying for the person I once knew you to be.

fear

These days, when I am up working late at night, sometimes, I hear my mother screaming in her sleep.

sounds

Power. Money. Fame. Family holidays. Friendships.
 
Noise. Ambulance. ICU. Crisis. Debt. Illness.

Dependence. Empty house. TV noise. Long days. Guilt. Loneliness.
 
Memories.
 
Silence. 

death and dialysis

Peritoneal dialysis is generally done 3-4 times a day. If the doctor has advised you to undergo peritoneal dialysis, and you are up for learning it, you can be trained to do it for yourself. Some patients take an interest in learning. Others don't. 

For those who don't learn, their family members/housemates are taught how to administer the dextrose solution.  Since this is a procedure that needs to be done 3-4 times a day, and takes anywhere between 30 minutes - one hour, it is not always possible to have someone at home to do it for the patient who is unable to do it for himself/herself. If you are fortunate, you may be able to afford to pay a dialysis technician to visit your house daily.  

The dialysis technician who visits our house is a young man in his 20s. He leaves his house at 7 in the morning and returns at 10 at night. Some of his patients need him to visit their homes only once a day. Others need him to visit them more than once. It's a lonely life. Wake up. Get onto the bike. Drive to a patient's house. Do dialysis. Get back onto the bike. Ride to the next patient's house. Repeat. Clockwork. Lateness can prove harmful for the patient. Missing sessions can even be fatal. There are no holidays. 7 AM till 10 PM. Every single day.

Peritoneal dialysis needs patience. Peritoneal dialysis requires you to, as far as possible, refrain from touching things other than the patient's transfer set and the dextrose bag. Patients who do dialysis for themselves sometimes choose to read a book or watch TV while they wait. But the professional code for technicians dictates that they must keep their hands completely free and unoccupied throughout the entire procedure.  So our dialysis technician talks. He talks to his patients while they wait. His patients are his friends. 

In the year that we've known him, 2 of his patients have died. Death is natural. Nothing lasts forever, especially not life lived on failed kidneys. 

I wonder what it must be like, to be young, to be in your 20s, to be saving lives and cultivating close friendships that you know are going to end - and knowing that the schedule you live is such that these friends you meet are your only friends.

  

truth serum

Within the first 10 minutes of my grandmother's death, I remember amidst all the tears, feeling a pang of relief.

Her pain was over.

So was ours.
Freed by death.

I wonder what I would have done then if I knew that our exhaustion was just beginning.  Physical. Financial. Emotional. Psychological.

how to travel on a domestic flight if you do peritoneal dialysis

1. Drain out the dextrose solution from your body the night before your flight.
2. Take the earliest morning flight to your destination.
3. Arrive, begin a 24 hour countdown and get aclimatized 
4. Set up an appointment with a hospital for a session of heamodialysis - this appointment should begin approximately at the time your 24 hour countdown ends. 
5. Go for heamodialysis
6. Do what you need to do for the next 2 days
7. Go for heamodialysis again on the 3rd day
8. Repeat steps 6 and 7 for the entire duration of your stay
9. Fly back
10. Resume peritoneal dialysis when you are back at home
 

driving

Yesterday, my father and I went driving together after a long time.
Long enough for me to have a fuzzy memory about the last time we drove together.
So long ago, that, in fact, my only concrete recollection is that the last time we went driving together was in 2009.
That time, he used to drive me to the physiotherapist.
This time, he drove himself to the doctor. 

Surreal.
Strange because I suddenly realize that the probability of us taking a drive together again is low.
So low that the only way I can think of repeating the experience is if I accompany him to the doctor next month.
And knowing that it won't happen because I won't be here and my mother or sister will take the ride next time.

exhaustion

Hate facing myself after I've acknowledged my own, when there are others in this house who feel it more. 

inner demons

On some days (like today) I am declared physically unfit to perform peritoneal dialysis.  
On days like these, I feel freedom and excitement. 

On days like these, I feel guilt.
On days like these, I try to rationalize. 

On days like these I come face to face with some of the scariest places in my mind.

moral ineptitude

The doctor told us to start shopping for kidneys. Obviously, we need not buy one if we can get one for free.

Is it alright to feel crazy fear and supreme reluctance at the thought of parting with mine?

the dialysis technician

Sometimes, people choose to be peritoneal dialysis technicians, and this means they have several clients, all screaming for their time and attention. It means they wake up at the crack of dawn and begin going from house to house, visiting client to client, washing hands, sanitizing work surfaces, handling bags and bags of dextrose fluid  - several times a day, over and over again. And then they go home and fall asleep. And then they wake up and repeat the whole pattern all over again. It means never missing a day of work. It means keeping people alive. It means no holidays.

It means one week off in the whole year to do everything you ever wanted to do. 

It could mean hell. Or it could mean life.

Or it could BE your life.

Things that peritoneal dialysis/CAPD has taught me

1. Patience
2. Hygiene
3. Paranoia
4. GERMS
5. Anxiety
6. Optimism
7. Pessimism
8. Infections
9. Fear
10. Hope

dialysis

Disclaimer: This is by no means an exhaustive explanation on the various types of dialysis. What I have tried is to describe the various options of dialysis as simply as possible. If you are interested in further information, you could leave a comment for me and I shall be happy to share with you whatever I know. Everyday I learn more about chronic renal failure. However, I am not a doctor.. For medical opinions, please consult a nephrologist.



Haemodialysis - If your doctor recommends this type of dialysis for you then you undergo an operation that unites a nerve and an artery from your body. This unified nerve-artery is called a 'fistula' and, usually, it is crafted on the left arm.  Depending on what your doctor prescribes, you go to hospital 2 or 3 times a week. You are hooked up to a machine from your fistula. The blood from your body is made to circulate through the machine for about 4 hours. The machine performs the function of your kidneys - it purifies your blood. Your blood circulates through the machine, is purified and  then directed back into your body.  You a kept under observation for another 30 minutes - 1 hour.

Pros

- In case of emergency, this type of dialysis can be performed even without the surgery to create the fistula. 

- Haemodialysis is conducted in the hospital, under constant medical supervision. It is different from peritoneal dialysis, which is done by the patient's family members, at home.

Cons

- Be prepared to devote a good part of your day in the hospital - about 1 hour of preparation, 4 hours of dialysis, and another hour of being under observation - a total of 6 hours. Travel time to and from the hospital is extra.

- There is a risk of heart attack as it puts additional pressure on the heart.

Peritoneal Dialysis / CAPD (Continuous Ambulatory Peritoneal Dialysis) -  You have a surgery to insert a catheter inside your peritoneal cavity, located in the abdomen. A small portion of the catheter will jut out of your stomach for the rest of your life. It takes about 2 weeks to heal from the surgery before the catheter is ready to be used. In the meantime, you may need to undergo haemodialysis. As peritoneal dialysis is done at home, your family / housemates will have to be trained to perform it. Training usually takes about 3 - 5 days. When you have recovered from the surgery, you can begin peritoneal dialysis at home. The part of the catheter jutting out of your body is connected to 2 bags. Dialysate fluid from the first bag is sent in via the catheter, it purifies the blood and waste material flows out into the second bag. The procedure takes 30 minutes. It needs to be done daily, at 8 hour intervals. So basically, you would need to have it 3 times a day.
Pros 

- You don't have to spend entire days in the hospital
- Since it takes only 30 minutes and only needs to be done at 8 hour intervals, you could go out to work or have time for other activities.

- If you are not confident, you can hire a dialysis technician to visit your home and conduct CAPD for you

Cons - It is done at home, and not in the hospital where you would have medical assistance within easy reach
- There is a risk of infection - peritonitis
- You have to work very hard to maintain the highest standards of hygiene in your home

APD (Automated Peritoneal Dialysis) - You undergo the same catheter insertion surgery as you would for CAPD / Peritoneal dialysis. Every night, you connect the catheter to an APD machine that performs dialysis for you while you sleep. 
Pros 

You are absolutely free to go about your day.
Cons
You may not be rich enough to afford this hassle free, patient friendly technology.


 

symptoms of chronic renal failure

As observed by me, they are the following - 

- Swollen feet
- Swollen face / swollen stomach / swollen face and swollen stomach
- You are able to walk, however, you are unsteady on your feet
- Constant fatigue
- Constant hiccups and belching; right through the day and right through the night - neither you, nor the person lying next to you is able to sleep
- Nausea
- Poor appetite - and when you do eat, you throw up
- Difficulty breathing
- Chest pain
- Slurred speech