Mind over Genes

Most of us, like to live life hoping that nothing happens to us. We spend a life time to build a comfort web and invest all our plans, emotions into securing our future. However the truth is life, never operates to our plans.

Our plans at best give a sense of security, but its our belief and hard work that actually pulls us through.

This is a story, about how my diligence, gave me the best possible medical outcome and how one should put their faith in their knowledge of a situation than fate.

1989: Sanawar School try outs for the Gymnastic team. Was rejected, however I showed up for training with the other boys consistently. I practiced despite not making it to the initial school team and made it finally for district and state level gymnastics selection.

1995–2003: Though I was a computer enthusiast and making simple video games by the time I was 8 years old; few years later rejection by the academic system to take Computers as a major as I had secured poor marks in mathematics. Despite the advice of family to give up and take up other subjects, I perused computer science. Got through a Masters and ended up introduced to a Research paper in mathematics (Logistic Regression) Vs AI (ANN) in bankruptcy prediction. In addition to pursuing a successful career in Computers.

2012: On a 8K run, after I just got back from ladakh and my return I found myself unable to catch my breath. I literally ran on my feet still to a near by hospital and got an X-Ray. It revealed a collapsed right lung, and yet I was running. When I went to Apollo and was referred to Emergency , they asked looking @ the X-Ray; “Where is the patient?” I smiled and said, I am the patient. The junior doctors to their dis belief conducted another X-Ray and performed a simple yet painful procedure to fix the problem. But I knew by then my organs were in good health to carry me on even 1 lung, without any problem. However, I was disappointed about knowing some of the outcomes post procedure (pleurodesis) and not being educated by my doctor then. I decided, in future I would educate myself before just believing doctors. What happens maybe inevitable, but being mentally prepared for it is more than 80% of it I feel. The rest 20% one can still influence (without the intervention of God).

February 2021: A 10 KM run followed by a work out. Shoulders, Chest buffed. I was peaking in fitness, in my head. Pushing my physical limits, running on EDM. A day later on raw intuition, I decided to get a medical test done. Before believers state it was divine intervention; I must state that I had planned this a while but procrastinated and just decided that day to get it done.

The blood reports came A+, however the Ultra Sound revealed several tumors on Both Kidneys. The radiologist, looked a bit concerned and recommended a contrast CT (KUB) follow-up.

Repeated different tests confirmed Tumors, however nothing in the blood or my condition indicated I was close to being sick.

It Can’t Happen to me: On talking to Urologists (Surgeons) , who were the primary goto Docs for this type of early stage detected tumor recommended Surgery. “Surgery” ? I’m a healthy guy who runs 10K. WTH is he talking about. Frankly, if I was a person with ailments or symptoms the medical advice would still make sense but the dilemma of a serious operation with advertised risks of their own, could do the same damage the tumors would in 5 — 10 years perhaps. Was allopathic medical intervention even necessary?

Denial and Acceptance: The next months until October were a test of my mental resolve, the need to try even harder to be physically fit or give up. I opted to push my body to self heal and give myself a shot, while I researched everything about my condition online. Turns out, the doctors too had not dealt with the condition. However, the right doctors guided me to a genetic test which revealed the root cause. The cause was BHD. Some friends even helped me get onto a Facebook group, which helped because in rare conditions patients help more than doctors. Doctors have to give all their disclaimers and act within a professional boundary. They always have to be worst case in their approach and you may not get the best advice, or have to read between the lines.

Strategy over Faith: Some of the people close to me had 2 reactions. That of faith in God and the other panic. To my irritation of both, I had decided to beat this in a systematic process:
1. Understand the condition and speed. The condition revealed that the progression was slow, and we had time. So why not use it !

2. Diet + Exercise

3. Alternative medicine: Ayurveda, Supplements, Tibetan Medicine, Homeopathy

4. A time line; based on progression where I had to set a dead line for self healing, that if the growth could be at least arrested. If not then only, surgery would be a wise choice.

There is a point where faith collides with reality, and defining that threshold was important in terms of a time line.

Devil lies in the Details: While Surgery was inevitable by October and constant Ultra sounds revealed no sign of arrest; the final MRI in October 2021 nailed the fate. Earlier, I realized on research the nature of surgery on Kidney matters. As the kidney does not grow, and if surgery is the only alternative then subsequent surgeries would reduce Kidney function over time. I had to find the right doctor and ensure we were aligned on the type of Surgery and that it had to focus on Sparing the kidney, even @ Risk of grow back in future.

I was clear, Quality of life mattered more than Life itself !

However, those words would not go down well with my family. And neither are doctors trained to act that way.

In allopathy the focus is on saving life first and then quality of life. Knowing this mindset , trusting modern medical system blindly, was out of the question.

I had to be able to do 10K or have sex for at least 30 min, till I was 70 at least.

On talking to a lot of doctors, I finally met an excellent and thinking Dr. Gagan Gautam @ Max at the time. A relatively younger looking but well experienced doctor. He kept telling me “young man”, while I tried to guess his age. Since my age was on paper am estimating he was at least 10 yrs elder. I also must give credit to Dr. Ajay Sharma @ Gangaram also who did not recommend a straight surgery, and whose advice and that of an oncologist I learned it was prudent to wait a little before jumping under the knife. However, due to a difference in Robotic vs Open Surgery recommendation, I did not pursue the option @ Gangaram. Personally, my impression of Gangaram as a Hospital administratively / holistically is far better than Max, but for me my faith & conversations with the Surgeon and his team “on the day”, mattered more.

Because I was able to discuss my case, and also my concerns with Dr. Gagan and I felt we were on the same page about saving the kidney also. I decided to go with him. I even wrote a letter stating my wishes. Doctors have a lot of pressure on them, and most will make conservative choices. Not that any doctor can act out of these medical guidelines, however I feel it gives a doctor more confidence if the patient in writing states his/her wishes for the doctor to also act on them without repercussions if things don't go as intended. As an engineer am trained to know that there is “NO BEST” solution. Rather its just pros and cons, and you have to put your hand on the buttons you favor as an outcome vs Risk.

My research had made it clear to me Kidney sparring, lower Warm ischemia time and Enucleation was the right choice. I was also happy to know I could discuss this with my doctor and not be dismissed as a google doctor. Most old school doctors, to my disappointment don't engage much. And I guess patients also prefer to be ignorant and place all the pressure in the doctors hands.

Surgery

I met the surgeon and to my surprise a slot was available within a week of me visiting him. Since now in my mind I was prepared and committed it did not make sense to wait. Beside, the anxiety would kill me. Come 1st Nov 2021 I opted to go under surgery.

While I waited to go into the OT I gazed at the beautiful forest back drop behind the OT and got to meet my doctor, looking relaxed. That was nice to see since I was next. I don't remember being nervous and kept practicing yogic breathing. I also remember the patient before me being taken into the waiting area post Op; wearing out of Anesthesia lamenting “haaaaaa 😵😮‍💨 What did you guys do to me?” and the doctors examining 🧐 and then pacifying him it was nothing. Finding it a bit dramatic , I tried to control my laughter 🤭, knowing I was next and I should be the last one laughing at someone who shares my possible fate 🤫. At least gave me a smile before I was rolled into the OT.

Before the surgery there was drama on the OT. With the Anesthetist unsure of what pressure to give me, given my history of Pneumo-thorax in 2012. Before they injected me with General Anesthesia; they wanted to be cautious and stick some tubes. I knew my lungs would hold without them. However, doctors rightly so cannot rely on our self-confidence or faith; however I also knew if I gave a blank consent they would take it like a blank cheque. So I only consented that they do anything silly if something went wrong, not pre-emptively and made sure I didn't sign anything giving them a free hand (literally) regarding this. The anesthetist wasn't too happy, and I don’t blame him professionally speaking and tried to convince me that I should sign and look @ the bigger picture.

As Lay on the OT table my last words being: “I know my body”, to which he replied “And I know my anesthesia”, and before I saw the Robot above fade I said to myself, with a sense of optimism and assurance from my preparation …“Will see”.

Medically speaking, the surgery was a success and the report stated 7 tumors are enucleated and a warm ischemia time of approx 19 minutes. Thankfully but not to my surprise my body cooperated well. After all what good was all that running, yoga and stress if it could not go through a surgery. Important to note, that this does not take away from the gratitude I hold for the medical team and their effort to make it possible.

Post surgery I did not face any major issues immediately, except a numb but sharp pain in my left shoulder. The pain was similar to something I faced in the past and to my alert mind requested an X-Ray in the ICU immediately.

The on duty doctor said; we will get it checked up tomorrow morning. I was assertive and said I’m in the ICU for a reason and don’t want a pneumo-thorax so get it checked now ASAP. (Which is the right call, as I remember the longer you wait the less the elasticity of the lungs to restore).

Other than the pain, the usual post surgery issues were there, including a bit of constipation and immobility for a few days. However all those stomach crunches also slowly paid off and I was able to get myself on and off the bed easily within a day. So while my keeping fit did not defeat the tumor, it did make surgery easier.

Its Day 15 now, I still am half way healing and hope nothing goes wrong. But half way through and able to walk a few Kms. I am thankful to the Dr. Gagan Gautam’s team, the Anesthetist and perhaps more I’d have known had I not been on Anesthesia (hah!).

https://www.instagram.com/p/CV71_-rvUtT/

Fingers crossed.

My lesson to anyone is that, even though there are times when you feel you are not in control. You have to be mentally ready for what you are not and try our best for the most optimal outcome.

Good luck.

Reference for fellow patients

Issues post surgery (day 0) typically include:

• Wires and tubes that reduce your mobility and add to mental discomfort : ECG wires connected till you are in the ICU, 1 Drain pipe for bad blood and a large tumor exit wound. Based on the drain they can determine any internal leaks I suppose. (1 day)
• A urinary catheter to drain urine and also examine blood escaping in urine. (1 day)
• 4 Stitches in addition to the above, which don’t pain at all. (Heal over 30 days)
• Pain while moving (2–3 days). Especially on and off the bed.
• Severe Constipation (On the 3rd Day once you are on solid diet)
• In my case additionally; inconsistent Muscle or Neve pain in the Shoulder and Upper arm area. Possibly due to a long/bad posture during surgery and even possible nerve irritation due to gas they fill in the abdomen area. While the cause is not verified, I have good reason including the last episode was 10 years ago; to believe it is one of the two. However this does not take away anything from the superb effort of the medical practitioners and outcome. Battles will have scars of some kind.
• You should be able to walk properly in 5–10 days, and they say full recovery to what you were in about 30 days.
• Typically PCM (Paracetamol) for pain and infection management is sufficient. Which is nice to know, as I hate being pumped with anti biotics. Avoid too many pain killers if possible.