ataplastic anemia, brave women, defective bone marrow, grave disease, inspirional, motivational

She did not let a dead bone-marrow kill her zest for life

Never regret a day in your life. Life can surprise you in a thousand different ways. Good days give you happiness & bad days give you experience”, says Ms Madhavi Patil, an Aplastic Anemia fighter. She is our next Real Life Manikarnika, from Thane, Maharashtra.

(For those who do not know what Aplastic-Anemia is, it is a condition when the bone marrow gets affected and stops generating new blood cells. It is a rare and serious health hazard. The study and treatment of this disorder are still in the R&D stage and the cure purely depends on the patient’s body behaviour).

                                    It’s been one year, and six months of struggle and we just pray every night that no more nightmares come in our life. We seek to see only miracles.

An IT professional with 13+ years of experience, Ms Madhavi was a project Manager, Atos. Her experience ranges from hiring to training, pre-sales, delivery to project management and people management. She specialized in Data warehousing and Sap Business Objects. Life was full of happiness and success. She married her best friend who was her office colleague too. A perfect love marriage where more than a husband and a wife, they are still the best friends for each other. As a married couple, they had a lot of fun for almost 2.5 years which includes impromptu trips and adventure travels.

Madhavi became pregnant and the life was amazing until the 2nd trimester. It is said that there is no better feeling on the earth other than the playful kick of the baby inside the womb. It is a feeling that reminds the movement of life inside us. Though Madhavi enjoyed this stupendous thrilling feeling, it did not last for more than 2 days. During the 6th month, she leaked amniotic fluid and was rushed to the hospital. Fortunately, it did not get very serious, but she was advised complete bed rest. She barely pulled it up till the 8th month, the fluid leaked again, and she was operated. Though doctors had no hope of the survival of the baby, Madhavi gave birth to a cute baby boy. However, being a premie, his lungs were not developed, and he suffered difficulty in breathing. They named him, Yuvaan.

It’s been one year, and six months of struggle and we just pray every night that no more nightmares come in our life. We seek to see only miracles.Life was a mixture of joy and worry for Madhavi then. She was overwhelmed being a mother of a cute baby, but at the same time managing a pre-mature baby was a huge challenge. Premies seek double attention than full-term babies with respect to feeding and the risk of catching an infection. “The immunity level of Yuvaan was very low and he used to fall sick very often. Initial six months was very tough” says Madhavi. The journey of motherhood kept her very busy with sleepless nights and frequent visits to the hospital. Though she opted to work from home, she had to quit her job. There was no time when she was away from Yuvaan. Soon, Yuvaan grew up and in the process, Madhavi and Yuvaan bonded so well that it was only during his playschool hours, she was away from him.

In the due course of time, life had some dirty surprises for her. Madhavi felt weak and lack of energy very frequently. She also developed swelling all over the body and suffered severe body pain. Initially, it was suspected to be dengue, but the test reports turned out negative. She was then asked to consult haematologist, who did a lot of tests and a bone marrow biopsy. This revealed that she is affected with a rare, critical disease called Aplastic Anemia, a syndrome of bone marrow failure. The bone marrow gets defective and suddenly stops to generate new blood cells and this can be for a year or two or for your entire lifetime.

In just a single minute, the entire world changed for me. When we heard about this disorder, we really did not know what exactly we were walking in for. A disease which we have never heard of, yet whose treatment was as similar to cancer. In today’s world Cancer is being researched and well-studied. However, Blood disorders like Aplastic Anemia are still in R&D. We were totally taken aback but I guess Experience and Exposure teach all of us”, says Madhavi.

Since then life had been on a roller coaster ride for Madhavi with all types of treatments, weird and strong medications. She was mentally, physically, and financially ruptured. The acute pain, sleepless nights, medicinal side effects, getting poked all over the body for all types of tests every now and then and not to forget having a 5-year-old little kid along in this journey.

My husband has a powerful instinct. He even guessed that I am going to have a baby boy and it came true. So, when he said that I am a brave girl and I am going to get out of this grave disease, it gave me confidence and courage to fight this out” says Madhavi.

It’s been one year, and six months of struggle and we just pray every night that no more nightmares come in our life. We seek to see only miracles.The adverse effect of this disease is that the blood gets thinner as the platelets reduce to a very low level and the blood oozes out of the body. In the case of Madhavi, blood profusely bled from her teeth gums. She developed blood patches all over her body due to the low level of platelet cells. Her mensurational cycle left her bleeding from down too and it was like water flowing out of the tap. Dr Shyam Rathi, the haematologist, was treating her and she was admitted in hospital clueless about the duration of her treatment. “Getting admitted in the hospital, being clueless about my discharge from here and leaving my 5-year-old at home waiting for me, was the saddest part of my entire suffering as I have not stayed away from him until then,” says Madhavi.

We do not know how strong we are, until being strong is the only choice left with us. Maybe Yuvaan had no choice but to get strong and mature at the budding age itself. Though he was made to understand about Madhavi, he cried and always feared that his mom would not come back from the hospital. “Thanks to the technology. We were able to continuously connect with each other through WhatsApp callssays Madhavi gratefully.

The treatment had a lot of side effects. Her entire body always shivered, and she got anxiety attacks very often. Her brain never slept and therefore she suffered a lot of sleepless nights. Her parents came to help Yuvaan and manage home. They could not comprehend the disease their daughter was suffering. Visitors used to carry kiwi and papaya juice for Madhavi to help her build up platelet cells and she used to tell them “my bone marrow itself is dead and so how will it produce platelet cells for it to increase”, funnily.

The long treatment and medications did help Madhavi a bit but unfortunately, her platelet counts never improved. The doctors started to hunt for bone marrow donors and whatever they managed to get, did not match her system. So, the next level of treatment was initiated. This is called ATG (Anti-thymocyte globulin) is an infusion of a horse or rabbit-derived antibodies against human T cells. It was a 10-day treatment and by the grace of God, Madhavi’s body started accepting this treatment and reacted in a good way. She became a little stable. However, ATG treatment takes a good 6 months to show its results completely. Before this tenure, Madhavi got her blood transfusions and platelet transfusions.

The Anti-thymocyte Globulin left Madhavi in a better condition than earlier. Nevertheless, the steroids injected in her had its trip of side effects. She had antibodies of horse infused in her and therefore it resulted in an extreme level of hair growth. “Thank God, only my hair was growing so fast, I did not run like a horse,” says Madhavi humorously. She had also gained a lot of weight due to steroids. Everyone used to look at her in pity and she would reciprocate to them saying “All will be well soon” positively.

It’s been one year, and six months of struggle and we just pray every night that no more nightmares come in our life. We seek to see only miracles.The beauty of this disease is that you need to love your body, your inner self and accept yourself the way you are. If not, the world can demotivate you. Looking at my old pictures, when my son says that I look very beautiful, it adds more will-power to me. In this whole journey of clueless suffering, I had always kept my smile and humour quotient up and stayed positive. Never let my adoring best friend(husband) and my cute little son know that I was sinking due to tremendous pain says Madhavi smiling.

Madhavi had to undergo CBC blood test every day to monitor the platelet counts. There was a stage when her body had swollen so much due to these pricks and it was very difficult for the lab technician to find her nerves. It was very painful, and her hands had a lot of black and green marks. Thankfully, after her first round of ATG, the results were positive. The bone marrow started to generate 30% of the required new blood cells. However, no cutting, no falling down and not getting hurt is the grand motto of her life.

This illness had not only put Madhavi on a house arrest but also Yuvaan. He would just attend his school and would be at home for the rest of the time. No playtime and no outdoors. He spends most of his time with Madhavi on a fear that her mom would get admitted in the hospital again. This little boy takes care of his mom and monitors all her medications. It is during this phase, Madhavi started recording all Yuvaan’s activity at home and uploaded in a you-tube channel – yuvaanvlogger. Soon it turned out to be an entertaining venture for both. The social media handle is @yuvaanvlogger and currently, Yuvaan is one of the youngest vloggers in India. The mom and son duo are on the quest to record the parenthood journey from the kid’s perspective.

My two boys (husband and son) are my backbones who have helped me recover from this illness. It was they who kept me composed and intact throughout. The patience they have exhibited is incredible. It is rightly said that every woman also has a man behind her success, and I have two. It’s been one year, and six months of struggle and we just pray every night that no more nightmares come in our life. We seek to see only miracles”, yearns Madhavi.

This is another true episode that reveals the courage of bouncing back from a near-death experience. Madhavi could have let these horrifying sufferings ruin her existence. Instead, she chose to face it with a smile and humour. She has conveyed that the recipe to deal with any hazardous situations is to stay positive. She has taught us how to rise above the challenges with renewed spirit and strength and be our best even during difficult times.

Hats off to you, Madhavi.

Though I could not control the tears rolling down my eyes, I have henceforth decided to stop whining about the small problems that I encounter in my life. I am sure you are all in agreement with me on the same. Also do not forget to check out our young vlogger, Yuvaan.

Adieu.


Have you missed reading about the brave women of our series "Celebrating the Real-Life Manikarnika(s)"? Then, just click the links below to read -

Sangita Marda, Mumbai

Tiffany Brar, Trivandrum

Vibha Sharma, Delhi

Urvi Sabnis, Ahmedabad

Urvashi Yadav, Gurgaon



Comments (18)

Aditi Chib Posted on Mar 13, 2019

very nice post. such an inspirational one.... she is a fighter no doubt... i love the article to bits...

  Reply

Judy Morris Posted on Mar 12, 2019

Oh my God Madhavi\'s life is truly a remarkable story of grit and determination. I couldn\'t look at her photos as I have a close family member who had something similar. But hats off to this lady.

  Reply

Directing Dreams Posted on Mar 12, 2019

Such a inspiring post. Her journey is a perfect example of being brave and the strength that your family gives you. Fighting back from a disease that not even heard of with smile is brave... kudos to her

  Reply

Nisha Posted on Mar 12, 2019

There are people who are fighting these deadly diseases and sometimes they need just these type of inspiration. Thanks for sharing this story.

  Reply

Anubhuti Seth Posted on Mar 12, 2019

brave and inspirational ... A mom definitely has the power to face anything..

  Reply

Ruchi Verma Posted on Mar 12, 2019

Trust me she seems like a great inspiration for me...Such inspiring stories need to be shared in today\'s world !!

  Reply

Deepa Posted on Mar 12, 2019

That\'s such an inspiring story of real life manikarnika. I agree..we take life for granted Sometimes but such incidents bring us back to reality.

  Reply

Mrinal Kiran Posted on Mar 12, 2019

Ah she is such a brave lady! I have seen her posts on her social media handle but never thought she was suffering in this way... It\'s amazing how people can be so brave and so strong! Kudos to her!

  Reply

Prerna Sinha Posted on Mar 12, 2019

I have read so many real like manikarnika stories from your blog and honestly they inspire me so much. Even she is an inspiration to all. She has faced so many problems and yet she is so strong and confident

  Reply

Rituka Bisht Posted on Mar 12, 2019

Oh my God I got Goosebumps while reading story of real life Manikarnika Madhavi, cancer is something which eats all your positive thoughts and you are left behind negativity and thats the time you yourself need to motivate and Madhvi is a true warrior never left hope

  Reply

Reetuparna Saha Posted on Mar 12, 2019

This was an awesome inspiring read. Women like her are inspiration to the entire mankind. It was absolutely natural for you to feel overwhelmed after hearing this incident.

  Reply

Jhilmil D Saha Posted on Mar 12, 2019

I saw your Instagram post and could not resist myself from reading this blog post. I am glad I read it. It is such a fun, inspirational and motivating post. Example of a true hero. Hat\'s off!\r\n

  Reply

Jhilmil Posted on Mar 12, 2019

What an amazing woman she is, completely bow down to her strength and love to her son who always stood besides her. I\'m following his channel too:)

  Reply

Neha Jella Posted on Mar 12, 2019

Ms. Patil is such a brave lady. Her story is so inspirational, hats off to her. I still got the goosebumps on my arms.

  Reply

Purva Posted on Mar 12, 2019

Such an inspiring story! Hats off to her for making this possible. Such women are truly real life Manikarnas :)

  Reply

Hema Gayatri Posted on Mar 12, 2019

She is truly an inspiration. Ms. Patil is a true fighter and has taught us to rise above the challenges with great spirit and courage. Thanks for sharing.

  Reply

Sandy N Vyjay Posted on Mar 12, 2019

I am really loving this series of stories of amazing women that you are putting together. Each one of them is inspiring and Madhvi and her indomitable courage against all odds is a shining beacon for all of us.

  Reply

Noor Anand Chawla Posted on Mar 11, 2019

Ms. Patil is truly an inspiration to all of us. To be faced with a disease one has never even heard of before, and then to face it head on, is very admirable.

  Reply

Jayanti Ramnath

Ketchupmoms, as the name goes, is a one-stop roof to catchup with your life and rejuvenate your insights. We are extremely delighted but a little perplexed as usual. Delighted, because of the quality

Featured Video

Wanderquest Japan Edition Box for kids

19 Mar 2019

Recent Posts