Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.
A lot of water has flown down the Ganga since the AIB Roast first hit the headlines. People praised it to begin with and called it "Indian stand-up comedy finally coming of age". Most people found it funny and bold. Then someone decided it was indecent and actually filed an FIR against those who produced it and participated in it. Since then, every few days we find someone or the other voicing their opinion on this. We have had Aamir Khan, Twinkle Khanna, Shah Rukh Khan, Varun Dhawan and many others give their two cents on this.
I have actually seen the entire Roast on YouTube before it was pulled off. So, unlike many others, I at the very least have the legal sanction to comment on it!
For me, it worked only in parts. I honestly don't find abuse funny. Merely mouthing expletives just doesn't cut it for me. No, I am not against using expletives but I don't find them funny by themselves. The Roast depended a lot on people finding expletives funny by themselves.
To be fair, there were some really good jokes. But all in all I found it pretty average in terms of humour content. I don't think this was 'Indian stand-up comedy coming of age'. If anything, it served to highlight that Indian stand-up comedy still relies heavily on expletives that appeal only to immature imbeciles who have had a less-than-perfect schooling.
Almost all the jokes that targeted Karan Johar were about him being gay. To be fair to him, he took these jokes very sportingly and what was probably the worst-kept secret of Bollywood is now completely out in the open. Then there were jibes galore at skin colour, religion and relationships.
This brings me to the reaction to the Roast. All I can say is that it was wholly unnecessary. It was on YouTube. There's much worse on YouTube and this elicited the kind of response it did only because of the names involved. Poor Karan Johar had to have the High Court restrain the police from arresting him for this! Please give the poor guy a break!
If you get offended by such jokes and language, you have a very simple choice: click on Stop!
They applied for their visas about a month back. As we were getting dangerously close to the start date of the cruise, we got increasingly worried as they hadn't received their visas. This was a couple of days back. Dinesh visited the Canadian consulate in Seattle where he stays. No luck. They said there was no way they could find out except by sending an email or a fax. They did both. No response.
We immediately got onto a call and started planning for the worst case that they did not receive their visas in time. Chetan found out that they could actually fly in to the place where the ship would dock on the first stop which was in the US so they would not need Canadian visas and they would also disembark at the last stop before getting back to Vancouver. The downside - they would be able to be on the ship for only about three and half days! This would also cost each family about $1,600 more for the flights. But what could we do? We had no choice.
We decided to wait until Monday and then they would book the tickets.
What I construed as the universe's whispering had by then turned into a full-blown loud message! What was this? The Canadian government's way of telling us we're not welcome? Right from the beginning of this plan, things did not go smoothly. Everything that could go wrong did go wrong! However, the one thing that was positive was that in the end, things always turned out fine. Like with my friends' Canadian visas.
This morning I received an email from Dinesh that read:
The visas are approved!
I have Yogita's and my passports in hand. Chetan's and Pavithra's passports are in Express mail expected to arrive at my house tomorrow. We are now unblocked to do next level planning of how we will ENJOY the freakin' vacation.
Seriously guys, thanks for all the help.
PS: And a note to myself about starting earlier moving forward.
The road is excellent. Once you take the left fork at Jadcherla and then take the right that goes into the district, the area is especially picturesque and very green. Our center is at the SVS Hospital that is at the mouth of the district.
I complained that I had no shoes until...
At our unit, I chatted with the team and the guests (NephroPlus jargon for patient). It struck me how little some of them had access to. I saw this lady, probably around 65 who had very thin veins. The technicians struggled to cannulate her. She did not utter one word. She did not even complain about the pain which I could sense was immense from the repeated attempts at pricking. She stoically looked on, waiting for it to finish. The technicians gave up in the end as there seemed to be some stenosis (blockage) due to which the minimum flow of the blood was also not achieved. They advised her to go to Hyderabad and get her fistula checked and revised.
I felt really bad for her. Now, she and whoever was looking after her would have to catch some conveyance to Hyderabad (about 100km) and then meet a vascular surgeon who would then advise them what to do. And then they would have to get it done. The surgical procedure was just a small part of the suffering. That the whole effort of getting something as basic as a fistula revision involved so much more trouble seemed quite unfair. I felt my heart become very heavy when I looked at the lady thinking about this.
Truly, I was very fortunate to have the access to medical care I currently have.
Mahabubnagar is famous for many reasons. One of the less talked about these days though is the Banyan Tree called Pillalamarri which is supposed to be about 800 years old. Some people say that it is impossible to tell which is the main tree as there are many 'children' of the tree that have grown around it. Beneath the tree is supposed to be the tomb of a Muslim saint.
We visited the site a few trips back. It was totally deserted barring the one old man who manned the ticket collection room with a single window through which he would issue the tickets to the enclosure. We took our tickets and went in. It was a maze of trunks. The funny thing was until someone tells you that the trunk of the original was not identifiable, you don't think about it! One thing was for sure, the tree was really old.
Mahabubnagar is represented in Parliament by K Chandrashekhar Rao, the president of the Telangana Rashtra Samithi,the party that is at the forefront of the agitation for a separate state of Telangana. The area is a hotbed of activity related to this agitation. Most bandhscalled in support of this cause are successful. During the setting up of our unit, the agitation was totally alive and kicking because of which we did have a few days of disruption - government officials would not attend duty, doctors would stay away from work etc. These days however, it looks like things are more peaceful. We've not had such problems for a while. Once the Presidential elections are completed, however, people expect some move on this front. No one is really sure about which direction the movement will take from then on. Fingers crossed!
Avanthi Udupi Hotel
I went over to the main town to have lunch at the usual Avanthi Udupi Hotel. The place serves simple South Indian meals. Nothing very fancy. But still very tasty. It is the typical South Indian Meals place complete with the sweets counter near the billing desk, a small air-conditioned section, a small Family section, the outer area for the rest of the customers and the huge weighing machine outside that has all the lights and fancy colors, into which you insert a one rupee coin and it throws out a small card with the weight printed on it!
Aparna got a transplant a couple of months after that call. The transplant was a success. She would not need dialysis any more. Her brother was a good match. Her brother and family had come down to Bangalore and took very good care of her. Her sister-in-law was very loving and she took care of Aparna like her own sister. In moments of weakness, she would tell Aparna that they would feel so guilty every time they talked to her over phone from the US. But their situation was so horrible that they had no choice. Luckily for them, there was a change in rules around that time and they could come back to India without losing the opportunity to go back when they wanted.
The family was now perfect. They had beautiful moments together. Within a year, Aparna, her brother and his family moved to the US. Aparna took up a job which wasn't too stressful. It kept her busy. She liked what she did. Her health kept good too.
About a year after they moved to the US, Aparna got an email from Dr. Jha. It read:
Hope things are going well for you. I trust that you are taking good care of your health. I am sure your blood test values are well under control.
Aparna, I wanted to update you about an unfortunate incident that happened at Charaka recently. You remember the technician Prakash. Poor guy, he unfortunately had an accidental prick with a Hepatitis C positive patient's needle. This was about seven months back. He was a nervous wreck all these months. He would get himself tested every month. A couple of days back, his report came out positive.
Prakash was shocked. We had to relieve him of his duties immediately as Charaka does not allow positive employees to work. Luckily we have a couple of other technicians we hired a few months back who are also good.
Prakash has gone back to his village. Before going, he came to me one last time and said remorsefully, "I guess my karma caught up with me Doctor. I still remember what I did to Aparna. I was so immature and foolish. More than foolish, I think I was plain evil. What I did was so wrong. I will never forgive myself for doing that. And what has happened to me serves me right. What else could I expect after what I did?"
I am writing this email to you to advise you not to harbor any rancor towards Prakash, Aparna. He has been punished enough for his misdeed.
A tear rolled down her cheek. She immediately wiped it off. Her brother caught her before that however. "What happened?", he asked. She showed the email to him.
"Serves the bastard right!" he exclaimed.
"No, don't say that." Aparna replied. "No one should get infected like that. No one. Not even Prakash!"
It was around 9 a.m. about a week after Aparna had gone to meet the CEO of Charaka. Aparna's cell phone rang. It was Dr. Jha. Aparna had moved to another hospital which was much farther away from her house. Dr. Jha had called to tell her that the hospital had decided to conduct an internal inquiry into the whole episode. The inquiry would be conducted by a committee of three doctors. The committee did not include Dr. Jha. The committee would have to submit its report to the CEO within 4 weeks.
Aparna did not know what to make of it. A committee formed out of the doctors working in the hospital itself?! What would that yield? When she heard the names of the doctors, her concerns somewhat reduced because they were reputed in their fields. However, she was by no means sure that justice would be done at the end of the day. Yet, she thought it would be prudent to wait before taking any further action.
The committee spent the next few weeks talking to all concerned - Aparna, Prakash, Dr. Jha, the other staff at the unit. The four weeks passed by fast. The committee submitted an 18-page report to the CEO at the end of it. The summary was on expected lines. No evidence to prove that Prakash had willfully infected Aparna with the virus was found. Prakash confessed to playing a prank on Aparna by saying that there was a mix-up in the reprocessing unit. For this, he was severely reprimanded. He was given a 50% salary deduction for the next six months. Dr. Jha was also advised to get another technician on board quickly so that over-dependence on one person could be avoided.
Dr. Jha called Aparna and told her of the report. He put it as if Aparna had won the case! "50% salary penalty for Prakash!", Dr. Jha exclaimed when he called her. It sounded like Prakash was going to be hanged!
Aparna was disappointed. Though she hadn't expected much more from this whole exercise, the result meant the problem was not over. She would need to fight some more, if she could, of course.
Aparna went to Charaka the next day and met Dr. Jha. She told him she was not satisfied with the results of the inquiry. She strongly believed Prakash was responsible. 50% salary deduction for a while meant nothing. When Dr. Jha told her about the prank, it sounded ridiculous. A ploy to let him get away with a light sentence.She told Dr. Jha, "You don't realize what has happened Doctor. My life has been destroyed. And you all are simply covering up a crime committed by your staff." Dr. Jha reasoned with her saying, "Aparna, many patients turn positive in dialysis units. You are not the first and you will certainly not be the last!"
"I don't care about other patients, Doctor. How did Prakash know about this a whole seven months before the report came positive?"
Dr. Jha had a Eureka moment. "That's the key Aparna! Seven months! The HCV virus is in incubation for 4-6 months. This happened after seven months, you see! So, Prakash is innocent!"
"Those numbers are never exact. Dr. Jha. Six months, seven months. How different are they in medicine? You should know better than that! Whatever happens, I am going to see to it that Prakash is punished for what he has done to me."
"Aparna, I totally understand what you're going through. In your interest, let me advise you. Get on with your life. Let us start Anti-HCV treatment. Don't waste your time pursuing this case. No one can prove these things in medicine. Especially in India."
Aparna had read up a lot about HCV cross infections on the internet in the past few weeks. She realized that it would be difficult to prove these things beyond reasonable doubt. Still, she did not want to give up. She felt like Prakash had slapped her on her face and was getting away with it. Her independent thinking and upbringing did not allow her to give up so easily.
What were her options now? Going to the police? Going to a lawyer? Going to the Medical Council of India (MCI)? All three options seemed hopelessly strenuous, complicated and ineffective. She had no energy to go to the courts month after month testifying in the hope that she would win a case that had so much stacked against her.
For a dialysis patient, each day is a struggle. Merely going about her daily routine - cooking, work, housework, dialysis was a huge task. She could barely make it through her day unscathed. She simply wasn't ready for an additional burden of fighting for justice. She badly wanted Prakash to be given a much more severe punishment. More than the desire for justice, it was so that she wouldn't need to fight any more. She simply did not have the energy. Physically and mentally.
Aparna sat brooding in her TV room at home that evening wondering what to do. She wanted a way out. Just then her brother called.
"Apu, how are you?"
Aparna burst into tears. She was feeling very overwhelmed. She couldn't take it any more. She needed help.
"Apu, stop crying. I am coming home, Apu. We'll get you a transplant. I will give my kidney. Stop crying, please. I am coming home!"
Aparna suddenly felt a huge burden being taken off her shoulders. More than the fact that she would be getting a transplant, the whole thing about having someone look after her offered great relief. She wouldn't have to deal with this alone any more.