Last few days have been a roller coaster ride for me. My lovely friend decided to move onto the heavenly realms and float in the clouds of eternal love. Sucheta Keni was an extraordinary human being and she opened my heart to so much love that I was not even aware of.
This is how we met: She found out that I was an author and had initially invited me write a few words on our cultural heritage and speak at the Diwali event at Adobe. When I told her that I just write from my heart and won’t be able to do what she had asked, she immediately told me to read my own heartfelt poems at the event. She also set up a book signing table for me. I was a stranger to her when we met, but she opened her heart so quickly that I felt as if I had known her for a lifetime.
My love, my friend suffered from a rare disease and all I knew was that she needed a lung transplant soon, like really soon. She told me this without a speck of fear or sadness on her face. This beautiful friend of mine was also choreographing a dance for the event and she would at times come with an oxygen tank at the practice sessions. As I was a participant for the dance as well, I saw her valorous spirit often with no sign of sadness, weakness, or suffering on her face. Her intention was to make the class feel happy during the performance and she definitely kept up to it!!
She also did a solo dance performance at the event, so full of grace, with her best friend (the oxygen tank) by her side. I will share a link of her dance as well. Her performance is etched up in my heart and I will never ever forget it. I must say I have been honored and blessed to watch her perform LIVE.
After the event we became really close friends, we would chat often and I had asked her to let me know whenever she found a donor for her lungs. I was fully confident that she would find a donor. And it was not all about getting a donor, but also a foreign body part that would be compatible with her body. Before conversing with her about anything I actually had to push up my spirit higher to match her fearless vibration and aura, so as to speak from a place of my higher self, and I found that adding humor to our conversations helped me with that. We would laugh pushing all worries to the side. I knew she would be fine, I believed. And for her…this is what she said once… “Nidhi, everyone’s desire for me finding a donor also means that someone has to lose their life first.” Man, that shook me up!! Organ donation is not small thing. It's life for one and death for another. It also showed me her sensitive heart and made me realize the extremely hard conflict she faced daily when she or anyone else thought about her healing. Probably like fighting an inner war.
The Universe had it plans, and she did find a donor for her lungs. As her story of hope unfolded in front of me, it made me do something I had never done before. Or I must say I never knew its importance. I donated my blood for the first time in my life to thank the Universe for giving my friend a few more years to live. And I prayed silently that another life somewhere is saved, just like my friend’s.
Her transplant was a success, but it wasn’t an easy journey. It came with its own complications. But I must mention that she continued to be wonderful and extra ordinary, living life to her fullest. Our conversations lessened as she moved in and out of hospital. Also as her condition deteriorated I found it hard to hide my inner pain, I could no longer raise my spirit, fear crawled inside me, and I did not want to show her my weakness to break her down, I did not know how to make her laugh, I did not know what to do, so I stayed quiet. I remember once ran into her at work after a long time, and we hugged each other tight for long and cried. I missed her! There were several people around, but that soul hug did not bother about it.
I was wonderstruck by her, and I wanted her to share her story in her own words but she could not get a chance to write it down. I am copying her words from a post by her family:
"death never worried me, it was nothing that threatened me that I had to get over it! And I always loved my life. I have loved all the experiences. They have only enhanced my being and my existence. There is nothing in my life which I wish never happened! Letting go is possible only when you hold on to things. I wasn’t even holding on to life! The only thing I did do was to rise up to the challenges! So don’t worry too much about life and holding on and letting go. Just go with the flow head held high! Live All! Live Now!"
I have been recklessly re-reading all of our text conversations and I have found this in common, each of those have ended in a mutual “I love you” at the end. Yes I loved her, and I am so proud that an extraordinary woman like her loved me too! I love you Sucheta. Sorry I am sharing your story without your permission, but I have my heart’s approval and so it feels like I have yours as well, as I see you peeking through the heavens. Thank you for being my friend!
She also visited me in dreams after her transition and told me that she really had to go. Go my friend and spread more love to each and every yonder you visit.
Here is the link to her dance video: https://youtu.be/_izD8ncnkEQ
And here is another copied post in her words about her transplant journey:
Long post
Many people have have asked me about my lung transplant and I have had conversations with some on 1 on 1 basis. But today I want to start sharing my experience in parts. Starting with part one today.
Disclaimer : This should be read solely as a experience and not any medical advice or transplant normalcy. Each person is diff and each body reacts to meds differently and accepts organs differently. So this is just my experience.
Transplant #1
Does lung transplant means you are all cured!
NO ! It does not mean that I am all fixed for rest of my life. It means a lot of good things which is why I went for it Duh! But It’s just an limited time extension!
The good things:
Most most most importantly I get more time with my loved ones ! I get more time for myself ! I CAN BREATHE ONCE AGAIN! And that basically sums it all up. Since my transplant I have been to Disneyland and fulfilled a promise I had made to my daughter and her friend. I have performed again on stage. I became a lead at work again. I took a solo trip to India and saw my mom and sis and nieces and nephews and family! Saw my Son graduate! And hey survived this pandemic so far !
Challenges:
Due to transplant complications, I had a sural nerve damage and have a numb partial left foot. Initially the three fingers on my left arm were also numb. The sensations came back but the tips remained numb. I will go into detail about all the complications immediately after transplant in my next post but for now just talking about functionality.
I had to relearn to walk and then dance with that foot. I also had vocal cord damage and had to be on therapy for almost a year before I could speak and laugh properly.
Swallowing too was hard for the first one year and imagine that when you have to take 10-12 pills morning and evening. The swallowing always remained an issue to date. Not to mention the initial months of sheer pain from the surgery. So in short the first year is just to heal enuff to celebrate your first lung anniversary!
The second year is the year of fun! Unless Ofocurse you are dealing with nerve pain but you get by by using nerve meds. For me I had the sural nerve damage to work with. My leg was probably tied so hard during the operation or after it that I have scarring on the back of my left ankle which needed a surgery. I didn’t want to do go thru one more surgery so instead decided to work with it.
At work I flourished and lead a lot of work based community projects too! I thought I was on top of the world when the side effects of the meds set in and I started getting migraines and kidney damage. By end of the second year I had migraines twice a month. And my nausea was back due to decremental kidney function.
The third year began with migraines going bad every month. What began as once a month by May it had become twice a week! It took some time before we figured out it was the immunosuppressant that was triggering it and so we changed the immunosuppressant to a diff drug stream. That Helped! My migraines were gone. I cld now finally work on my body and regain strength. I started doing my walks and yoga and workouts! And I thgt that’s how transplant feels all good! Little did I know what was to come next! The next was a cough and a drop by 4 points in lung function followed by bronchoscopy and reports that said that I had a acute rejection going on. I had to treat it with IV steroids which gave me the jitters the first day day no sleep the next and the day after. I was throwing up for two weeks after. I felt weak again! Another bronc determined that I no longer have acute rejection. A follow up after that showed that my lung function had now dropped by 10 points. So I was given one more round of IV steroids which had really bad reaction this time not only I had the jitters and throwing up but also a altered state of mind. I felt extremely weak! Follow up appt had the diagnosis that I had chronic rejection and that we were talking about months and not years! And my world crashed! And when I told people I got many a responses “oh but I thought all was ok after transplant”
And so:
Transplant gives a second chance to peeps. It does not fix them! It comes with a lot of challenges. You just read some of mine. Some have even worse and some just sail though it like a breeze! Each person is different and each body will react differently and thus have different challenges. So if you are considering transplant know that the road ain’t easy but also know that the second chance you get is such a big boon! The things I cld accomplish in these three years albeit all the medical stuff is what makes life a good memory! Though there will be moments when you think you made a wrong decision by doing it , there will be moments when you think I can do this all over again! And those are the moments to cherish !
Thank you,
Nidhi