Let Life Be Light The Benefits of IgA Nephropathy

An Autobiography by JYOTI SAINI

Blue Rose

www.bluerosepublishers.com

Copyright © 2017 Jyoti Saini All rights reserved All rights reserved by author. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the author. The views expressed in this book are entirely those of the author. The printer/publisher and distributors of this book are not in any way responsible for the views expressed by the author in this book. All disputes are subject to arbitration; legal actions if any are subject to the jurisdictions of courts of New Delhi, India. “All incidents and feelings described in this book are as experienced by me and are true to the best of my knowledge. I do not intend to hurt anyone’s sentiments. In case anyone has any concerns regarding the content of this book, feel free to contact me” - Jyoti Saini.

First Published in February 2017 By Blue Rose

[email protected]

ISBN: 978-93-86126-79-5

Cover Design

Anjali Plaka

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Disclaimer All incidents and feelings described in this book are as experienced by me and are true to the best of my knowledge. I do not intend to hurt anyone’s sentiments. In case anyone has any concerns regarding the content of this book, feel free to contact me. - Jyoti Saini

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Dedicated to My Reader

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About IgA Nephropathy It is a chronic kidney disease which may lead to life-long dialysis or transplant. It normally strikes people in the agegroup ranging from teens to late 30s. It occurs when an antibody called immunoglobulin A (IgA) lodges in kidneys. This results in local inflammation that, over time, hampers kidneys' ability to filter wastes from blood.

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Table of Contents PREFACE

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1. ‘JUST’ THE BEGINNING

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2. THE REAL PROBLEM ‘DIAGNOSED’

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3. THE ‘HUNT’

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4. THE GOOD ‘LUCK’

23

5. A NEW BEGINNING

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6. RAVI BHUSHAN

32

7. THE PLAYFUL LIFE

37

8. ENTRANCED BY THE GRANDEUR OF THE HIMALAYAS

45

9. THE HEALING EFFECT OF OM

52

10. A WONDROUS YEAR

58

11. THE TRUE MEANING OF BUSY

65

12. MY TRANSFORMATION TO WICKED JYOTI

69

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13. THE RETURN OF DANGER AND MY ESCAPE FROM STEROIDS

75

14. THE JOURNEY FROM HOPE TO HOPELESSNESS

81

15. OVERCOMING DISTRESS

90

16. THE STRUGGLE CARRIED ON

95

17. A COMIC CONSULTATION

103

18. A FORTNIGHT IN PIMPRI

110

19. THE GUIDANCE OF A METHODICAL DOCTOR

117

20. THE FATHER OF ALL TREATMENTS

123

21. ANTICIPATING A DRAMATIC RECOVERY

127

22. THE BIGGEST FEAR FACED

134

23. STEALING THE FUN FROM AGONIZING HOSPITALIZATIONS

139

24. GETTING ALONG WITH DIALYSIS

144

25. THE TRANSPLANT PREPARATIONS

154

26. MY DONOR

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27. THE TRANSFER OF KIDNEY

162

28. THE PHYSICAL RECOVERY

172

29. THE INNER RECOVERY AND THE CONCLUSION

177

30. SUMMARY

183

31. LETTING LIFE BE LIGHT

190

ACKNOWLEDGEMENTS

195

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Preface

I first met Jyoti 13 years ago. First time she came to my outpatient chamber with her parents and younger sister. Family and Jyoti were clue less about what’s in for her future. After initial assessment and kidney Biopsy I was feeling bad realizing the advanced nature of the disease. My first concern was how to communicate this to a young girl who’s just the teenager. Any ways I chose to give all details regarding, treatment strategy and future course of disease to Jyoti’s father. Over next a few months I felt am dealing with different kind of young soul & realized that I could share every aspect of Jyoti’s treatment with her, how difficult it may be. To me she came across as a girl full of exuberance, who rarely glances at negative facet of any problem, however big it might be. And I must say till date she hasn’t changed a bit since then. I have seen her cruising through the most difficult phase of her life, such a phase passing through which I have seen many getting shattered. She wears her heart on her sleeves and speaks her mind.

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I am proud to say that in this book too she has written her heart out. Through this book she intends to spread the positive energy in the world. Challenges can always be there in life but facing them with an optimistic attitude can change perspective of life. This would be a good read for the one and all. I wish her a blissful healthy life and may her strengths & positivity inspire the world.

Dr. Sanjiv Jasuja Senior Consultant Nephrologist

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1. ‘Just’ the beginning I was a sincere engineering student. I attended almost all the lectures. It was a pleasant February 2004 day when I felt I could not read from the board with my left eye. My vision was blurred and later I found that there was a red spot in my left cornea. The same continued for two days. On the third day, papa told me that he would take me to a doctor before going to office. I put on my college uniform and was ready in some time. I knew I would miss one or two lectures that I didn’t want to. Post breakfast, papa took me to a nearby Government Hospital. It was crowded as expected. We had gone to see an ophthalmologist. He checked my eyes thoroughly and sent me to get my vision tested with a visual acuity chart. Finding no abnormality with my eyes, he directed us to another specialist for further evaluation. There was a long queue outside doctor’s chamber but we were called out of turn because we had the reference of the ophthalmologist. The specialist doctor examined me carefully and concluded that my blood pressure was too high; the reading was 200/180. He gave me a medicine and asked to wait. The BP came down a little and shot up again after some time. A little while later, he asked papa to get me admitted in the hospital as detailed investigations were needed. I had to drop the idea of going to college. The admission receptionist informed that the bed allocation would take a few hours. So, we went home and returned later in the evening with Mummi (my Mom). Within minutes of my admission,

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I was put on a drip and was strictly instructed not to eat or drink anything. I was in a spacious ward with multiple beds. But it was untidy. A lab technician came to collectmy blood sample after a couple of hours of admission. Papa asked him as to when a doctor would visit. He had no idea about it. After a long wait, papa went in search of the doctor. I was in the ward with Mummi. I began to feel thirsty. Papa returned and informed us that the doctor would come soon. The doctor’s shift had changed and so there was a delay. We waited for around an hour but nobody came. I started feeling hungry as well. Sensing my restlessness, papa said, “Bear it for one night. Tomorrow I will take you to a good hospital.” The cleaning staff had left by then; the compound had become dirtier and the toilets smelly. Papa enquired about the doctor, this time to the nurses on duty to which they responded, “It’s too late! Doctor will come in the morning now.” A little while later, I felt enervated and vomited. Papa must have been really irritated by then. He asked the duty staff to discharge me immediately. Initially they were reluctant and told that they would not be able to provide the test reports. They also warned that I needed to be under medical supervision. But they ultimately agreed. We were finally home after a long exhausting day! Now began a taxing time for papa. He spent the following two days running from one doctor to another. With no reports to discuss and the only known concern being high blood pressure, it was unanimously concluded to be a heart related trouble. Accordingly, I was taken to a private heart hospital in Lajpat Nagar. It was a really attractive hospital: fully air-conditioned, neat, and clean with a pleasant ambience. It was not crowded at all. I got the window side bed of a semi-private room. There was a shared TV and a sofa-cumbed for the attendant. The food serving staff resembled hotel crew. In 2004, I considered it super luxurious!

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I went through a lot of medical investigations unconcerned about the outcomes. I was truly bold those days and was not afraid of needles and syringes. I was enjoying my hospital stay: watching TV, talking to friends, relaxing, and eating. The food served in the hospital was delicious. But what I liked the most was the time when people came to see me. After the basic investigations were over, the cardiologist proposed to perform an angiography. “Although I am confident that the result will be normal, we’ll do it to rule out the possibility of any blockage”, he said. Papa had no other choice but to agree. I was highly dashed courageous and stepped inside the operation theatre smiling. However, I noticed a little nervousness on papa’s face. I was given a local anesthesia and I underwent the surgical procedure quite well. The surgery was performed on my right thigh. The surgeon kept on chatting with me throughout the procedure. The post-operative period was troublesome. An eight kilogram sand bag was put on the thigh and I was not allowed to move my leg for the next sixteen hours. The angiography reports were normal as anticipated by the doctor. With all required investigations done, I was discharged after eleven days of hospitalization. That was a very delightful hospital stay for me, more so because of my positive outlook towards life and a tension-free mind at that time. I was absolutely free from the thoughts of my medical condition. The cardiologist summarized it to be case of Essential Hypertension. “You’ll have to take the medicines lifelong. With some precautions, you can lead a normal life” he said and handed over a prescription. He advised us to visit after a month with a few medical test reports. Two days after the discharge, I went to college and resumed my normal routine. My college, Jaypee Institute of Information Technology, was perfect and I genuinely loved it. Although, being the first batch we did not have all the facilities in the beginning but gradually it became a top-class institute. The way our course curriculum was designed made learning an interesting and

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