Kidney, Dialysis, Transplant and ME: 8

Chapter Eight

Dialysis, PET scans and other experiences

After I was discharged from famous Hospital from Western Mumbai, on 9th October 2018, I started dialysis at Apex Kidney Center, Sushrut Hospital, Chembur; Every Tuesday, Thursday and Saturday.

?????Here for dialysis, I was is in the right hands of Dr. Billa Sir and Dr. Deepa Madam. They are both knowledgeable, experienced, skilled and take excellent care of dialysis patients. These two guided me from time to time.

?????Dr. Vishwanath Billa is a useful confluence of professionalism and sensitivity. The chief nephrologist at the previous hospital in Western Mumbai, whom I still consider an angel, advised me to seek guidance from Dr. Billa from time to time.

?????On the first visit, Dr. Billa called me a 'fit patient'. I was taking Dr. Billa's guidance from October 2018 to December 2020. Doctor Billa listens to the patient first and then checks the patient. After the examination, he discusses with the patient and the accompanying relatives and decide the direction of treatment.

?????I respect for Dr. Billa is huge, because of the gratitude he has.

Whenever Dr. Billa was told about any issue in the dialysis center, he listened quietly and found a satisfactory solution.

?????We will always remember the cooperation and guidance of Dr. Deepa Madam. She visits the dialysis center from time to time and communicates with the dialysis patients. Also, their guidance on my various medical tests and treatments, was very helpful to me. At a critical juncture, her instructions gave my treatment the right direction.

I am indebted to Dr. Billa Sir and Dr. Deepa Madam.

?????Although the dialysis technicians at AKC, the Apex Kidney Center, are young, most of them are skilled and care for patients. I have no idea about the new dialysis technicians who had joined after my shifting for kidney transplant surgery, but my experiences of young dialysis technicians were very good.

?????The other side of the coin is that some of them had less professional maturity with age. Probably it might be because it was their first job experience and other part is, no patient was asking any question till I start my dialysis in the center.

Because of my previous experiences, I was more curious. By the time I started asking questions, I had the stamp 'Uncle, you think too much ..'

?????After I started dialysis on October 9, 2018, on the first Dussehra, one of the dialysis technician (female) shook my neck catheter fitted to my neck, for blood flow. I was feeling pain there, for two weeks after that. When I went to the counter later, the senior technician and the available nurse gave a shocking answer, "Don't worry, if the stitches are broken, we will put the stitches back on." That nurse is really good at heart. But, there was a lack of communication skills. So, speaking like that, it felt awkward.

?????Often for blood flow, the tubes in the neck catheter tubes were replaced to each other. In November, a young technician (male) changed the catheter tubes without wearing gloves. From that day on, I started getting fever. Fever is a symptom of an infection. In the next week of Diwali, in medical parlance, a fistula was formed. So dialysis was started from the fistula in the left arm. Catheter in the neck was very skillfully removed by Shri Amit.

Back in December, the same young technician (male) handled the dialysis needles, without wearing gloves .. and again I started getting fever. I was scheduled to have a kidney transplant in January 2019, but due to this fever, the process of detecting the infection started.

?????I had a good time with these young team of technicians, in AKC Chembur. So, in the critical environment, with dialysis patients like me, I was getting a little relaxed. Head of Housekeeping Staff Shri. Dilip Mandal and his colleagues also help a lot. Mr. Mandal with his humor keeps the atmosphere in the Chembur center pleasant and at the same time monitors the health status of the patients during dialysis.

?? Shri Dinesh, Ms. Ruba, Ms. Pranaya, Mrs. Swapnali, Shri. Saai, Shri. Daya, Shri. Sanjay, Shri. Amit, Ms. Akshata, Mrs. Kritika, Ms. Pooja, Ms. Anjali, Ms. Sadaf and other technicians took good care of me during dialysis. Ms. Pooja is a very sweet girl. She always has a smile on her face. Similarly, Ms. Pranaya was also has pleasant personality and now works in another hospital.

Mr. Sanjay always used to check my blood pressure and insisting on eating the food at right time, which I had brought in the tiffin box. Initially Mr. Dinesh used to come to start my dialysis and also to remove the needles at the end of the dialysis process. While working very neatly, his quality was to chat with a smile. Now, he also is working in another hospital.

?????Later, Shri. Amit and Shri. Rohit, these two, were doing my dialysis process neatly. Shri Rohit was transferred when I was friending with him.

??????Once a serious situation had arisen. After the dialysis started, after a while I started sweating. Began to feel uneasy. I called the senior technician at the counter. He was busy on the telephone. He signaled 'coming' without looking.

But after attending the phone, he probably forgot. By then, my health was deteriorating. I was having trouble breathing. So I couldn't even call back.

??????At that moment, by the grace of the Lord, Shri Dilip Mandal approached the bed, and he immediately called dialysis technicians, who normally sit at the counter. Saeel, a young dialysis technician, came running without waiting for anyone. Sometimes, people hesitate to initiate, thinking that someone else will go. But, Saeel came quickly and he saw my condition. He quickly checked the sugar. Sugar was extremely low. Saeel immediately gave an injection through saline, called dextrose. And after a while, I slowly started to recover. I still remember those moments, gratefully.

??????Urination of dialysis patients stop and so the body stores water. During dialysis, this excess water is removed. With the blessing of the Lord, I was urinating from the beginning of the kidney issues. When dialysis was started, I had to take a urine pot on the bed and urinate. So I was given a bed in a certain place.

?????Once I was given a bed in the corner. So, annoyed, I yelled at the senior technician. Normally, I appreciate in front of everyone and criticize in private. But, by then, some of my medications had started to have side effects. That senior technician got angry. When starting dialysis, he came to inject needles.

??????After that, he bothered me tremendously. He pierced the needle in the hand, then he was rotating the needle inside to find the vein. He had done this job neatly many times before. But then his incarnation was different. Hearing my screams, my wife as well as the administrator of the center came running.

??????When the process starts, the relatives are not allowed to come near the bed of the patient, so Supriya helplessly stopped at the far door. But even the administrator stopped there, watching what was happening. By injecting the needles once, the process of connecting the tubes was completed. I then asked the senior technician, "Were you angry with me?" Without saying a word, he left. After a while, blood started coming out of the points where the needle was injected. But then other technicians came and took care. After a while, the same senior technician came to me and apologized.

??????I would like to make a special mention of a young dialysis technician. Roshni, because in the end, she was doing the dialysis process easily for several months. This young girl is excellent in her work skills. She had a knack for injecting needles for dialysis in the beginning and removing them easily at the end without hurting the patient.

?????I was then introduced to abdominal injections at the end of each dialysis session. That injection was very painful. But the skill with which Roshni injected it is unmatched. That injection didn't hurt at all. And, Mandal used to stand by to make jokes. I refer to Roshni as a dialysis technician with ‘Golden Hands’.

??????I will always remember the service of Saeel and Roshni.

Dr. Billa had asked me to take a training program in AKC Chembur for dialysis technicians. I had taken training sessions without any hesitation and without any charges.

??????Special mention should be made of Dr. Ganesh and Dr. Komal as well as Dr. Sneha. Doctor Komal checks every dialysis patient on a daily basis. And if needed, she will treat the concern patient right away. As long as Dr. Sneha was there, she had the necessary but lacking quality in the medical field, empathy! The ability to know the feelings of a painful patient by penetrating with affection... Even Dr. Ganesh used to feel affection in his words whenever he came to visit.

? ?????With very few exceptions, I had very good experiences in my nearly three hundred dialysis sessions at Apex Kidney Care. Due to the friendly behavior of the dialysis technicians, the patients who come there for dialysis, also become friends with each other. Dr. Murarka, a surgeon (who was himself a dialysis patient) had given me proper guidance on local anesthesia. The atmosphere at AKC Chembur is really pleasant because of these young technicians.

??????For those who live in the Chembur area and need dialysis, I can say for sure, AKC Chembur will give you a nice service of dialysis with a homely atmosphere.

I express my heartfelt gratitude to AKC Chembur Center.

??????One of the great facilities at Apex Kidney Center (AKC) is that certain blood tests are given free of cost to dialysis patients every month.

While I was on dialysis at the Apex Kidney Center (AKC), I started having a fever after Diwali and started looking for an infection. My brother Satishdada and brother-in-law Milind both stayed at home from September 25, 2018 to December 2018.

??????Since January. Milind and Satishdada used to visit me on every day of dialysis. No matter how much I explained, they kept coming to see me. Milind later became busy with his family and business work. And immediately the lockdown began. Therefore, both of them had to stay at their homes in Thane and Kandivali respectively.

In my outpatient department, appointments with an infectious disease specialist, along with a nephrologist, were started. On December 13, 2018, I met an Infection Disease Specialist.

??????As a second option, on December 26, 2018, at Global Hospital, I met renowned nephrologist Dr. Bharat Shah. On the first visit, he just looked at me and told me that I had tuberculosis. We were a little confused. This is because the same was said in the previous hospital, even when the test was negative. But since the side effects of those drugs were serious, we wanted to confirm them through tests.

??????Dr. Bharat Shah asked us to do some pathology tests and to see an orthopedic doctor.

??????We performed pathology tests and visited orthopedic doctors at King Edward Memorial Hospital (KEM Hospital). Orthopedic doctor asked for an MRI scan and a chest x-ray.

??????We took a chest x-ray at KEM Hospital. In my experience, most of the security guards and class IV staff at KEM Hospital, treat the patient well, and help properly. But the security guard and especially supporting staff, might be a peon or forth grade staff, outside the orthopedic doctor's cabin was extremely rude. I had submitted his photo to the authorities, but no action had been taken and I didn't have time to keep track.

He was shouting at the patients and when one gentleman came suddenly and signaled him. He went to a side and talked to that patient and immediately let him go in to meet orthopedic surgeon. I had given his photo to the management there. A security guard was so rude that he started using bad words at the doctor and assistant dean I was referring to. Preferably, this type should be recorded by the camera in the mobile. But, I was in a different mood then. Otherwise I always lodge a written complaint with the government offices and institutions and the right result is found.

Due to the huge crowd in the hospital, we were asked to do MRI scan (Magnetic resonance imaging) in the lab in front of the hospital. We went to the clinic which was in front where the MRI scan was to be done and we paid the fees. When we went to the lab next door, there was a machine in a narrow space. I was shocked to see the poor condition of the machine. I stood outside earlier, watching another patient do an MRI scan. Then went inside. As lung capacity was affected, there was difficulty in breathing. This added to the fear. Finally, my wife stood inside with the technician and my MRI scan was done.

Little did I realize that the physical and mental side effects of the pills, I was taking had begun.

On January 23, 2019, we again met Dr. Arvind Kate. According to him, the affected part of the chest was the dried water stain.

??????At the suggestion of a nephrologist at previous hospital, we went to Jupiter Hospital, Pune and met a renowned infectious disease specialist, Dr. Soman was met. This time, Milind was with us.

After meeting Dr. Soman, the belief in humanity in the medical field became stronger. Very quietly (without any haste) he thoroughly checked my files.

??????After examining me, he explained the situation to us in moderation. He asked us to test PET-SCAN-WHOLE BODY. After coming from Pune, we inquired about this test. The name of Lilavati Hospital was recommended to us by an expert doctors.

On 18th February 2019, we did WHOLE BODY PET SCAN test at Lilavati Hospital.

A positron emission tomography (PET) scan is an imaging test that helps your doctor diagnose diseases in your body.

The scan uses a special dye containing radioactive tracers. These tracers are either swallowed, inhaled, or injected into a vein in your arm, depending on which part of the body is being examined. Then some organs and tissues absorb the tracer.

Tracers help your doctor to find out, how well your organs and tissues work, when detected by a PET scanner.

The tracer collects information about processes taking place in the area of high chemical activity, which is useful because in certain tissues of the body and in certain diseases, high levels of chemical action are initiated. Areas of these diseases are shown as bright spots on the PET scan. PET scans can measure blood flow, oxygen consumption, how your body uses sugar, and more.

????The PET scan was an outpatient procedure, so I was sent home after the scan. I was told to stay away from people in the house just to avoid radiation. Even while sitting in the car with Supriya, I was worried about radiation.

Two essentials in a hospital: Empathy and proper communication structure

?Immediately on February 22, 2019, I was tested for Ultrasound of Right Scrotum. Then, I was asked by the urology department to do a bladder biopsy. On March 11, 2019, I was admitted to the previous hospital in Western Mumbai. The doctor who came to brief me said that the biopsy procedure takes half an hour. The patient comes out in two hours after the whole procedure.

??On March 12, I entered the lobby of the operating theater comfortably on a stretcher. I was comforted by a senior consultant on the urology team who had done my surgery of fistula, who was good-natured and sympathetic to the patient.

After taking me inside the operating theater, the head of the urology department met me and left. With the thought that I would be out in two hours, I became unconscious, due to complete anesthesia.

??????When I woke up, I was still numb. But within a few seconds, I was starting to feel tremendous pain in the urinary tract. I literally started screaming in agony. I was told that, I had blood clots in my bladder. So I had a catheter implanted in the urethra. I was in a lot of pain because of the blood clots and I was screaming for help.

??????A young doctor from the urology team there brought a suction pump-like device and began pulling blood clots, from the inner lump, the urine catheter. Now my pain had increased tremendously. I was screaming like anything. But, the doctor continued to remove the blood clots very recklessly, without any empathy. I was crying with all my heart and all the doctors and staff members around me were standing in a daze.

Then, my wife Supriya came to the operating theater to meet me. After going into the room at night, around 7.30 pm and 8 pm, Supriya and my daughter Niharika were informed in the room that "you have your dinner. It will take more time."

My daughter became suspicious and insisted, 'We want to see our patient.' So, they let Supriya come into the operation theater. Seeing my condition, she was stunned. At that point, she had no choice but to accept what the doctor said. She had signed the form prescribed by the doctor for the next procedure.

??????I was given full anesthesia again and the next procedure was done which is known to them and God.

??????At eleven o'clock at night I was brought into the room. At the time of the second procedure, I had slept soundly all night due to the anesthesia given back to back on same day. When I woke up the next day, I started to feel pain again, so I was given pain killer injections, but to no avail. Once again the pain became unbearable, I started screaming helplessly. My daughter saw my condition and called the chief nephrologist (whom we still consider huge).

??????When he arrived, and saw my condition. He asked the floor staff to call the doctor of the urology team. But even after half an hour, no one came. During that time, I was in excruciating pain and crying.

??????Even the chief nephrologist, having given his precious time, stayed there for a pound an hour. Then his anger was unleashed. He himself called and spoke to the urology department. Immediately, in the room where I was admitted, a young doctor from the urology department came. He skillfully removed my old urine catheter and replaced it with a new one. After that, my pain began to subside.

????I was discharged on March 17, 2019. On the next visit, I went to the cabin of the customer care department and discussed. But they responded with the red tape psychology. I had understood that both the chief nephrologist and I, were helpless in front of the system here.

??????My mistake was that I did not inform the trustees of that hospital. We were terrified that it might affect my upcoming kidney transplant. My wife uttered, "Your life is going to be in their hands". So we didn't go ahead and we kept quiet. It was a big mistake, but it was also a indirect demand at that time in front of the deaf system.

??????When the chief nephrologist asked us to bring a report from the pathology lab, something terrible happened. My wife, Supriya, was told from the pathology lab that we had not received any samples. When we informed the chief nephrologist, he said, 'I will ask.' But then nothing happened.

?????It was all very unprofessional and ruthless. Our endurance was running out. But with hands under the rocks, we were silent. The chief nephrologist, despite being a very good human being, was silent as if he had been cured. Our patience was running out.

Doctors in the urology department did not know exactly what to do instead of a biopsy. But after the discharge my blood pressure started to rise.

??????On March 25, 2019, I was admitted to the same hospital again for high blood pressure. Meanwhile, the chief nephrologist and infectious disease specialist visited. But no one on the urology team had an address. Two days later, on March 27, 2019, I was discharged.

???I was rushed to the hospital. So no one could be informed. My health was deteriorating in the hospital. But my friends and relatives did not know my condition at that time. Yet when some inquired about my health, others informed me that I was in good health. But most of the time this information was wrong.

??????The schoolmates were initially misunderstood. They told me I had a cold. Friends from college used to come and visit regularly. So they knew my health updates.

??????I was at home when close relatives called. But due to sudden illness I had to be admitted in the middle of the night. And those who had called the other day were getting messages from other relatives that Bipin was fine. No one was doing it on purpose. But the situation was different.

I was urging all of them to "call me or Supriya if anyone asks about your health." But, as it was interpreted differently, some misunderstandings began to spread among friends and relatives.

I was wondering, should I take care of my life and death situation or should I take care of the ego of the people in the relationship? Well, some of his relatives were coming to see the lawyer ten minutes away for work on the property. But he was going back home saying that it was getting late.

?????On May 8, 2019, we once again met an Infectious Diseases Specialist at the same hospital. The doctor and I were shocked during the discussion. Because when I was admitted a month ago, what was prescribed by the Infectious Diseases specialist doctor was completely ignored. Since the file was in the possession of the doctor, we had no idea. The female doctor had told her to put some pills in it. But when we were admitted or at the time of discharge, nothing was said about it.

????The doctor then tried to treat her. Eventually he also wanted to get a job at that hospital. Then they told us to start the kidney transplant process. As we were leaving his cabin, all of a sudden we were met by a very good man in the urology department and a doctor with a senior consultant (who had operated on my fistula).

While discussing, he asked me, "How are the biopsy abdominal stitches?" Asked.

Then I was confused.

The doctor looked at the expression on my face and asked, "What happened? Are the stitches hurting?"

I said, "I have no stitches on my stomach. Instead, I have stitches on my right testicle."

Then he quickly shouted in the lobby, "Not possible."

???When I finally insisted, they took me to an empty cabin and there they checked me out. There I showed them that I had no stitches on my stomach. Shows stitches on my right testicle.

Seeing that, he was terrified and I "inquired." Having said that, he hurried away. We had an idea, but they had to keep quiet.

??????In the meantime, we begin to be guided by both Dr. Billa and Dr. Deepa. When we told him that we have been asked to take the initiative for the kidney transplant process, Dr. Deepa suggested that we ask the Infectious Diseases Specialist to prescribe it.

???Once again on May 13, we met the female doctor who was an infectious disease specialist. When asked to write, he backed away. We are mentally Dr. Thanks to Deepa.

???????On June 17, 2019, the chief nephrologist at that hospital once again asked me to do a PET-SCAN-WHOLE BODY. I had tested it once again on June 28, 2019 at Lilavati Hospital, Bandra. I have shared information about this test in the past. I was away from my family one day because of radiation.

After this, however, we decided to find another alternative, instead of that hospital.

??????Once again on July 29, 2019, we requested Dr. Billa to take up the case for our kidney transplant surgery. But he once again politely declined for professional ethics. Because he was referred by the chief nephrologist in the old hospital for dialysis and routine guidance.

???We felt bad. But in today's age of money, among professionals who go to any level, we are also happy to meet such a doctor. Since then we have had the utmost respect for Dr. Billa.

Yours

Bipin Mayekar

• It is important to be careful not to overdo it.

? If proper improvement is not taking place, the patient needs to find another option.

• The role of family members who are with the patient 24 hours a day is very important.
• Friends and relatives rushing to help in life-threatening illness, without any ifs and buts; Are important.
• The patient's positivity, perseverance, courage, to stop the evil thoughts caused by pain, to remember those who love him, and the spiritual strength needed for all this; Reactions to such various experiences were coming and going.