100 Days of Dialysis

100 Days of Dialysis – Part 1

Its been nearly a year since I have been on Dialysis. Two sittings per week meant about fifty weeks; since I was on 3 sittings per week for the first few weeks, I hit the 100 dialysis sittings in about 11 Months.

When I heard I was going to be put on Dialysis, I thought my life was over. I might have a few more years to go and I am actually looking down the canon waiting for fire. That scene changed really fast. The first and second dialysis sessions were administered under ICU conditions, but the 3rd session was the one that changed the scene. I was taken to the Dialysis ward and immediately could sense a change in the atmosphere. There was a sense of normalcy, an air of familiarity and an indication of things working as per routines and schedules. This was completely in contract to the ICU conditions, and made it that much easier.

Vasuki sister as I call her, is the supervisor of the day shift and an ever-smiling face. Much of her patient related job responsibilities are about providing special attention to the new patients. This includes technical duties like cannulating the young fistulas and monitoring patient reactions and responsiveness to the dialysis; and, a bigger role that she plays is of being a counselor.  Her attitude and enthusiasm flows through to the patient and we start feeling emotionally a litter better just by her presence. Don’t worry I’ll write about her in detail later on, maybe throw in a little selfie too.

The experience as one can expect has been surreal. Hard to accept at first, trying to deal with ‘eventual-istic’ thoughts, and finally embracing the new lifestyle and start moving again. Its been a ride, and when I look back, or rather look at it from a ‘100 days’ perspective a few things stand out.

  1. Hospital Protocols
  2. Core Competency
  3. Patient Entitlements
  4. Life and Death

The rest of the topics are technical observations and a little lite hearted. Life and Death seems to be the hardest topic to talk about, so let’s get that out of the way first. Let’s take time with the other topics.

Life and Death

The night I had my first Dialysis, there was an announcement. “Attention! Attention! Code Blue in Dialysis 1, Repeat! There is a Code Blue in Dialysis 1” I didn’t know what it meant but I would find out soon.

It must have been around 10 PM in the night. There were just 2 nurses in my ICU, the M-ICU, and there were probably 4-5 more nurses in the C-ICU and N-ICU. There was 1 doctor in my ICU and probably 2 more in the other two ICUs. One of the Doctors from another ICU was hanging out here, and maybe trying to flirt with the Doctor in my ICU when the announcement came. At a moment’s notice, they ran! The 2 doctors ran like they had just heard gun shots! They ran for their lives! Or rather ran for a patient’s life.

In about 10 minutes, phones started ringing non-stop and I could make out that there was going an admission. In fact, it was clear that the patient who had just been called a Code Blue was being brought into the ICU. The nurses immediately got busy and started readying the bed, setting up equipment, loading doses into syringes and making way for the patient. The patient was stretchered into the ICU and there were about 6-7 people around the bed. The ICU nurses also joined the group. There was a big fat nurse, who was the shift lead in the ICU, he started doing the compression technique CPR to thrust start her heart back, but it wouldn’t budge. The patient’s BP was falling, and the pulse was dipping by the second. They had already shocked her once in the Dialysis ward, they shocked her again! I had just seen these sequences on film, but when I actually heard them yell out clear! I couldn’t help but turn my head towards the new patient’s bed. That’s when I found out that It was a woman. She must’ve been in her late 50s or maybe even 60. The BP was rallying around 40-50 systolic. They put her on a ventilator and inserted a central line. It was about 11 PM in the night now and she had become unresponsive. Alive, but barely.

The ICU staff had phoned up her doctor who incidentally happened to be my doctor too, and he actually came down to the hospital at that hour! He saw the patient, spoke with the ICU staff, summoned the Dialysis staff and tried to hold a small scrum and understand what had really happened. He spoke with the family, asked them to get an emergency admission and made it clear to them that the situation was very critical, and they couldn’t say anything with certainty for the next 12 hours. For those in scrubs, it had become clear, she wouldn’t survive the night.

I was woken by a nurse at 5 AM for the first pricks of the morning. Blood was drawn and I went back to sleep. In an hour I was woken up again for a sponge bath and change of cloths and sheets. I went back to sleep. Shifts changed at 8 AM, and the day time ICU registrar walked in. At around 12 noon, his voice casual, but making deliberate eye contact with the junior doctor and the shift lead, he said ‘I’m declaring it at 12:30’. The ‘it’ was the dialysis patient from the previous night and declaring was pronouncing her dead.

I was a little scared, for 2 reasons; 1, I had seen someone slip into death, and 2, the lady had just come to the hospital for a routine dialysis sitting and ended up dead, could it happen to me too when I start my dialysis?

Since then, about 5 people have passed away from among my dialysis buddies. Three of them from Dialysis 1 and two from Dialysis 2. Luckily none of them died in front of me. There were cases when some patients developed complications and were sent to either the ER or the ICU, and in some cases went on to get admitted to the hospital, but none among these have died.

My biggest blow came in the December of 2019 when a close friend passed away. He was a normal, healthy, vegetarian, non smoking, non alcoholic 30 year old. Like everyday, he bathed himself and walked out of the bathroom, took out his phone but soon fell to his knees and passed way. When his father found him, the towel was still soaking bath water and his body was still warm. They said it could be an SDC – sudden cardiac death due to unknown reasons. All of us, were taken by shock and couldn’t respond to the news. I was hit the hardest by the sight of his parents who were inconsolable. That night was particularly hard for me, because I constantly heard the haunting cries of his parents and given my proximity to death, more and more versions of ‘eventualis-tic’ thoughts came up in my mind. Luckily, I have been taught coping mechanisms and more importantly, I have friends to hear me out.

The deaths at the hospital somehow don’t emotionally bother you as much. Maybe its because of the professionalism of the hospital staff that rubs off on the patients and their relatives. We talk of the deaths, both with the staff and with other patients since the deceased had been a fixture in our daily lives. Because of the fixed routines and schedules, most of the patients and the relatives endup befriending each other and maintain a cordial relationship. So even after the death of the patient, when the family ceases to be in our daily lives, it almost feels like a whole family just got wiped out of our relationship radar. Its strange, that 1 death means the end of 4 or 5 people from our circle, but it happens. 

Not all is bad though, there have been 3 successful transplants this past year and those patients do pop in at the hospital occasionally with treats and greets for the nurses and doctors. They also stop to say hello to the patients as well. Transplant is the other end to the dialysis saga, the longer end to the story – but the happier of the two. Fingers crossed I can write about that soon.

~*~

Empathy Upgrade

Exhibit A

On 5th December 2017, just a little less than 2 years ago, a young woman killed herself. August Ames was 23 when she hung herself from the ceiling fan and asphyxiated to her death. August was a Canada born pornographic actress who had gotten herself into a twitter controversy.

August tweeted on December 3rd that she had turned down a job offer to work with a male artist who had earlier worked on gay porn and had not got himself tested adequately before offering to work with her in a boy-girl scene. She made the tweet less than subtle in expressing her disapproval and disappointment over the lack of ethics in the agents of the industry.

The LGBTQ community wouldn’t take this kindly and lashed out at August for the next 48 hours without rest or respite. She was massively criticized and was called Homophobic and discriminatory. Although a few pornstars and people from the industry backed her freedom to make choices of her costars, the LGBTQ community wouldn’t give her a break.

The bullying took to a fever pitch in just 2 days. Gay porn star Jaxton Wheeler wrote on Twitter: “The world is awaiting your apology, or for you to swallow a cyanide pill. Either or, we’ll take it.”

Finally on the 5th of December, she made one last tweet and killed herself.

Friends and near ones emphatically complained that August was a victim of cyberbullying. An autopsy conducted post her death also revealed that her body contained traces of cocaine, marijuana, Zoloft and Xanax.


Exhibit B

Incels are members of not so underground online forums. These online forums are mostly men, generally young heterosexuals who are incapable of finding sexual or romantic partners despite having the desire to socialize and form such bonds.

The group is explicitly violent in their ideology and openly endorses and encourages suicides. Discussions in incel forums are often characterized by resentment, misanthropy, self-pity, self-loathing, misogyny, racism, a sense of entitlement to sex, and the endorsement of violence against sexually active people.

Mass murderers in North America have either openly called themselves incels or have been adjudicated as incels based on their character traits. The first confirmed mass murder by an incel happened in 2014 when Elliot Rodger killed 6 people and injured 14 others in the Isla Vista of California. He made a Youtube video about his pursuit of extracting revenge over the womankind for rejecting him and other sexually successful men for making it hard for him to find women. Elliot has since been hailed as a hero in the incel forums in the dark holes of the internet.

Inceldom or being an incel by itself is not a mental or psychological disorder. People who identify themselves as incels may suffer from physical and metaphysical disorders. The inability to socialise with women and insecurity over one’s appearance makes one push themselves to believe the world is conspiring against them in indulging in sexual and romantic relationships.

The lack of success in the romantic or sexual front is not uncommon, and neither is it a danger to the society. The problem arose when incels rose from amongst us and turned against the society.


The two stories of Exhibit A and B are stories of empathy; one a real life incident and the other about the existence of real world cult. Now you might think, how are these stories about empathy? they’re so not empathy, they are the exact opposite of empathy. While Exhibit A talks about how a group of people ganged up against a young lady and Exhibit B is about a group of sociopathic misogynists out there to spread hate and violence.

Empathy from the earliest times has been held as a virtue. To be able to hear another’s heart beat; to put your feet in another’s shoe. To understand, to hear to feel one another’s emotions had been praised as the biggest virtue one can have. So yes, the definition of empathy is amply clear, but how does it relate to our exhibits?

What’s happened today is we are trying to empathise, but with whom? empathy is really about understanding others. But what we’ve made it today is understanding others with whom we can relate to. This is the biggest misinterpretation of empathy.

To take an easier example, if floods hit my native state, I feel a stronger urge to donate for relief causes. If the floods hit a neighboring state, I might feel less strongly for the need to donate. Now the act of donating itself is about feeling for others. So I am being empathic towards the victims, but why do I feel strongly for one set of victims and not so strongly for another?
we’ve somehow misunderstood the meaning or misinterpreted it as empathy.

What happened in Exhibit A is that the LGBTQ community, which is generally about acceptance and anti bullying turned up the heat against someone who they thought was against them. So evidently, it boils down to the fact that the LGBTQ are open to acceptance of life choices and being liberal about it only when it comes to the people of the community and not anyone outside. If August wanted to work or not work with any artist, isn’t it her choice? why would the LGBTQ community lashout at her? can’t they empathise with her? or is that privilege reserved only to those with whom they can relate to?

Similarly the incens of Exhibit B, the incel forums are by far one of the darkest holes of the internet. They openly endorse suicides, killings, rapes and torture, for what?? because members of the group cant get sex? because I can’t get sex and I can relate to some other 25 year old virgin should I call him names and encourage him to go kill the girl who rejected him when he was 14??

What we saw in these 2 examples is people want to empathise, but we choose to empathise with only those with whom we can relate. So effectively, I’m feeling sorry for myself, or someone who’s more or less like me. Is this even empathy?

We’ve seen massive organisations of people and groups all over the world, on internet and in the real world. They have a common agenda, a feeling of being wronged or misunderstood. I’m not saying all organised groups with agendas are bad; self help groups, support groups, AA meetings, these are also groups of people who empathise with each other – or empathise clones of one another, but these are not bad.

So what makes empathy real? It’s quite simple really. Are you really in another’s shoe thats actually his or are you just wearing another’s shoe that looks just like yours?

The next time you feel like being empathic about someone or some group identifier, just ask yourself, Is it really someone else or am I doing this just to feel sorry for a different flavor of myself?


AES Outbreak – Indian Outburst

As of 26th June, the death toll has crossed 140 and the total number of reported cases in Muzaffarpur has crossed 600. As the death toll mounts and children continue to die, we still find ourselves at square one. We don’t know what is causing these infections, we don’t know what type of AES it is, we have no clue of when it might stop, and we most certainly have no answers from the government at the state or at the center.

The district of Muzaffarpur has been at the receiving end of these outbreaks since 1995. There have been multiple commissions and research benches trying to get to the bottom of this, but none of them have turned up with usable knowledge. This form of encephalitis happens every year in Bihar, in 2014, as many as 355 lives were lost due to this disease. Although we have not yet identified the cause of this outbreak which has now become a periodic activity, the number of fatalities had started reducing post 2014 due to health awareness programs initiated by the government. Why then has it gone so bad this year?

2013 2014 2015 2016 2017 2018
143 355 11 4 11 7

While the news first broke in the first week June, well, let’s be honest, there was hardly any news coverage since it was election season, even so, there was no clue of it escalating so fast. Soon the fever rose – quite literally, and everyone was talking about what’s happening in Muzaffarpur and why so many children are dying.

While the usual question arose of why this is happening, doctors and researchers started looking for answers that was already at hand – some started by saying AES is a very broad term and can mean too many things, ‘we need more information’, they attributed it to the weather – hot and humid weather conditions, and then the fact that most of the patients are malnourished children from poverty ridden families, and the most atrocious argument – litchi.

ICU of a Public Healthcare facility

Our researchers blamed a fruit. That’s right. Apparently raw litchi has chemicals called Hypoglycin-A or MCPG which can cause hypoglycemic conditions that in turn triggers the symptoms of AES. The argument made sense first as we were dealing with the litchi bowl of India and poor families who might resort to eating litchis due to the lack of availability of a proper meal. As time passed and sanity descended, this argument was termed atrocious because quite a large number of children were too young to eat litchis and the fact that the litchi season was already over – which leaves the weather, malnutrition and the living conditions as the possible causes.

But do we really need to care about the cause? Doctors would know that many times we can’t really isolate the problem, but we go about having a general idea of the problem and the various measures we take helps solve the problem without us having put a finger on it. Would it be too much to ask to forget about the cause and concentrate on the treatment?

This brings us to another problem. How to treat and Whom to treat? The two medical facilities in the district are brimming with patients. One bed has 2 children lying on it, and the floors of the ICU’s are occupied by patients. One simple course of treatment is just hooking up the patient on glucose – for this, the poorly equipped hospital is struggling to make ends meet. There are not enough IV sets, not enough glucose, not enough staff to administer the treatments. Who is to blame here? I’m not looking for someone or a reason to place blame, but this needs to stop.

In the days that followed, the Indian politicians were barely questioned, though the CM or Bihar and the health minister visited the district, there was no respite. Poor children kept pouring into the facilities, and the facilities just had no facilities! The doctors were pulling in 18-20 hour shifts and yet there was no respite. The mainstream media conveniently forgot to question the politicians, the medical officer – who in his own words had been transferred just 2 months back pointed the finger to the lack of awareness programs. He said, we know this happens, but we don’t know why it’s happening, only way to stop this is by creating awareness and raise the general standard of sanitation and living. He also pointed out that due to the election, the health awareness programs were not run as efficiently as they were run in the previous years – this is truly disturbing.

Speaking of the media, it sunk to a new low when anchors kept parading into the ICU of the SKMCH with cameras and other media equipment and started heckling and bellowing at the top of their voices over the doctors. One journalist even went so far as to ask a doctor “how many children died today” is she being a hero by asking pointed questions? Where is this grit and candor when it comes to asking questions to the politicians? The role of media in this whole charade has been appalling.

The fever like all fevers will run its course, it will just leave a bad memory and a number behind.  Is this what we want? Have we as a society become so used not caring? Should no one be brought to book? Well actually no, there has been a suspension of a poor lowly doctor for negligence. Really? Just days ago, we were talking about and going gaga over how badly doctors are treated and practically everyone was one with the IMC for calling an all India doctor’s strike, and suddenly doctors are the villains?

Media Reaction

There is no easy fix to this problem, we don’t have a cause, and hence we need to live with the reality that this AES has become a recurring yearly ordeal. We can only reduce the intensity by employing preventive measures like awareness programs, government nutrition programs, capacity management at health care facilities and some basic level of accountability in each of us as politicians, or media or the general public. But as we learn to live with this problem, let us not misdirect our anger and frustration at the doctors or the weather or a fruit.

~*~

Negative Affirmations

Affirmations are positive thoughts and self confidence boosting coping mechanisms. In the second half of the 20th century many a motivational speaker made his buck using this technique. Spiritual gurus and wellness practitioners also preached about affirmations.

I am a good blogger

People want to read my blog

I will motivate people

Sorry for the tasteless examples, but this is how positive affirmations look like. If you were a pre teen in the 90s you would remember the episode of the power puff girls where Buttercup starts to think she’s a good crime fighter because of her green blanket which she uses to practice her affirmations – end of the episode showed she was a good crime fighter with or without the affirmations.

Now let’s not get into a debate on whether affirmations are real or have any real effect on us. This post is about something grey called Negative Affirmations. What does it mean?

Negative affirmation isn’t really a word – atleast not yet. We haven’t recognized and labelled it as we so love to do these days, but all of us have seen, experienced and practiced this. The simplest and most common example of this is I told you so.

I told you so

What is this sadistic line that we love so much? Most of us are waiting for our turn to say I told you so. We relish it, the feel of rubbing it in. Why do we do this?

Let’s take a simple example to visualize it. When I got back from the hospital after I was sick for a couple of days, I wanted to go straight up to my room. But my aunt wanted me sit in the living room for a while and then go up. I didn’t listen to her and went up. Naturally I was a little exhausted and started coughing vigorously. Her first reaction – I told you so. I couldn’t react, I knew I was wrong but I couldn’t say anything. I just lay on the bed breathing deeply.

Would she leave it at that? Noooo. She kept saying it again and again you should’ve stayed down, I told you you should’ve. See what happened.

I didn’t know what to say. Actually I didn’t say anything. Did she want me to say sorry? Did she just want to hear me say yes you were right?

It happens many times in our lives, when someone makes a mistake, we hold no restraint in letting them know they’ve made a mistake. In cases like our example the mistake cannot be undone, I couldn’t go down and sit in the living room to please her could I?

Her constant harping of my mistake doesn’t help make the situation any better, the only thing it does is make me feel worse. Is that what she wanted?

Many times when people do this – pull the I told you so for too long, I ask them, what are you trying to do? Make me feel worse for longer? Their response is: no but if I don’t say it you will repeat the mistakes. It’s more of a rationalization on their part – they have no way of knowing I will repeat the mistake.

Long back I had read in a Paulo Coelho book that our words are generally meant to convince ourselves more than it is to convince others. So in I told you so perhaps the Negative Affirm-er is trying to convince himself that he has it in him to know or do the right thing?

And who are these people who say I told you so? The ones that can’t actually get their word out in the first place and hence wait to say I told you so? OK maybe that’s a little harsh but the point is, Negative Affirmations – saying I told you so, or harping about the mistakes that can’t be undone are completely unnecessary and the people who do that you are actually trying to prove to themselves that their worth something and doesn’t really have to do much with you.

There’s no need to harbor any prejudice, they are not sadists who want to point out your mistakes. They’re just trying to get better, strangely using Negative Affirmations on you.

Its sad, talk to them about this.

~*~

Dialysis Tomorrow

There was no easy way to break the news. The doctor gave it straight and I tried to do the same. He said I think we’ll start the Dialysis on Monday. The first day we’ll do it in the ICU because it’s a high risk business the first time, but the second and third day you can stay in the ward and we’ll take you to the dialysis unit for the process. I tried to do the same to my friends and family that I wanted to keep in the know, but they were literary blown by the news. Those who had other family members on dialysis or had some medical history took it better but the rest were really finding it hard to find a footing.

The biggest problem being a patient is not the bad kidney or the ordealing dialysis or the sudden rush of emotions and reminiscences of life, but the questions of the not so close friends and acquaintances who want to know everything – including what are the options for transplant. They don’t mean bad, it’s just that they don’t realise that it’s already too much to take in and pointless questions around the same things will do more harm to the mental state of the patient than help cope with the situation.

I made a few phone calls to close family and left text messages to a few close friends who deserved to know the situation incase things went sideways. The biggest challenge with your first sitting of dialysis is going to be your fear and apprehension towards the whole process. Although the first dialysis can have unexpected changes in the chemical composition on the body, it is the fear and anxiety that makes it worse. So this post is about my anxieties and what happened because of that.

The first day, I was a victim of misinformation. I believed that the two dialysis needles would be pricked into a vein and an artery. Hence I was scared, as arteries are high pressure pipes and deeply placed. So I thought this was a huge challenge and was anxious about it. I was wrong – the pricks are made on the single vein created by the AV Fistula.

Since I didn’t know this, I was scared, and once the dialysis was complete and the technician removed the arterial cannula, I so thought my artery was bleeding and went into hypotension. It felt like a medical TV show where everyone surrounded my bed and we’re shouting things like BP is falling! there’s no pulse! 3 cc of dopamine! The doctor yelled at me to cough as I started going out – I coughed – once, twice, thrice and a 4th time when I could see my eyes brighten – the BP suddenly rose and I was coming out of the hypotensive shock. All this could’ve happened either way – but if I wasn’t scared the chances of it happening was very less.

So remember this:

They are not poking your artery, arteries are deep and are high pressure tubes. Poking it would send blood 2 floors above ground. The high pressure bleeding is due to the Fistula and it stops if a piece of gauze is help up tight at the point of the prick.

Second day, I learnt this and was much relieved. I had parted ways with my phone, hence was much at peace. But there was yet another apprehension, the first day they pricked using local anaesthesia, will they do that today as well? And what off the swelling? My arm was swollen from the dialysis.

Answer:

If the hospital is good enough, they always give you local anaesthesia for cannulation. Or atleast till the vein increases in size enough to not give you much pain even without the local.

Swelling is ok, the dialysis is not dependent on it, unless it’s a huge swell, the technicians can perform the cannulation vis a vis the swelling.

This done, I was much less apprehensive or scared for my third sitting. But not entirely as there was another problem.

I couldn’t perform a full stretch of my arm as it was sore from the previous dialysis. So I was scared they might make me stretch it and hurt me. But luckily, the technicians are so well trained that they can perform the cannulation with a half streched hand and after the cannulation they even let me fold my hand and place it on my belly for the entire dialysis sessions.

So as we saw, there are lot of apprehensive situations that may arise from time to time. But it’s important to remember to keep your cool. You are in the hands of professionals who know what they are doing.

That said, the most important thing to be able to handle things is to have a support system. It’s essential that you talk to your friends and family about your condition. Because eventually the truth is there are only 2 treatments to this,

1. Dialysis

2. Transplant

Dialysis is a process that people can handle and make a part of their daily lives – in the words of my technicians we become like family members – that said, it’s still an ordeal and ties you down to a place and definitely changes your life to a less flexible and less comfortable situation.

Transplant is hope, if you receive a perfect match kidney then you can get back to your life as it was in less than 18 months. Finding a donor is the key – which is why you need to talk about your condition with people. You may never know when or where you might find your donor.

The downside of talking is most people would be taken completely unawares and wouldn’t be able to react in a stable or mature manner. This is worse if you are a middle aged patient. Hence prepare yourself mentally to be bombarded with questions about your “future” and “long term solution”

The only solution that I’ve seen working for myself is to take one day at a time. As in case of my apprehensions on the different days of my dialysis sittings or about planning for the future. Take one day at a time – it makes it really easy.

What else?

Support system. All of us need a coping mechanism. I’ve been doing better for myself and it’s because I believe I have the following 4 things nailed to perfection and that has made all the difference.

1. God’s grace

2. Family’s unconditional support

3. Well meaning Friends and well wishers

4. Confidence in self to face challenges

These are all you need to cope with CKD and Dialysis for now.

Ofcourse, don’t forget – one day at a time.

~*~

PS : sorry this post doesn’t have a descriptive account of my experience, can make a post for it if anyone wants.