SB (Pheocromacytoma PCC): “It has been a remarkable journey.”

Sb Pheocromacytoma adrenal glands tumor survivor

Background:

My tryst with illness began at a very tender age when I was still in primary school. I would complain of severe headaches and was being treated for sinus. While the CT scans wouldn’t show any abnormality, I continued suffering from splitting headaches which my parents attributed to problems with my vision. As I entered my teens, I developed rashes all over my body, for which I was taken to a dermatologist. He gave me medicines for the same which worked successfully. However, as I discontinued the medicines, the rashes reappeared. My parents decided to quit the treatment as the medicines that were administered were steroids.

 

When I entered Grade 9, I started undergoing regular episodes of vomiting. Several tests were done to no avail as nothing was detected. Headaches too persisted. It was a very perplexing time as my parents didn’t know what to do, and I found it extremely difficult to concentrate on my studies and started failing my exams. The situation went further south as I had to be often hospitalized for days together for vomiting and dehydration. With grade 10 came problems with my blood pressure. While the normal levels for blood pressure are 120/80, mine spiked to 160/120. I was even taken to a nephrologist, but we couldn’t still trace the cause for the same. Soon after I got diagnosed with Hepatitis B and was being treated for that. There was never a breather between these episodes of regular hospitalization not to mention the struggle in my academic lives.

Diagnosis and Treatment:

After a long period of battle, I was finally directed to an endocrinologist who conducted several tests and concluded that my ACTH (Adrenocorticotrophic hormone) levels were extremely high, about 7 times higher than the normal values. This was the first breakthrough in finding answers to all the medical problems I was going through. A very high level of ATCH could be indicative of several conditions, one of which is the presence of a tumor. The doctors then advised me to undergo MIBG scan, which is basically a nuclear medicine scan that uses iodine-123 meta-iodobenzylguanidine for detection of neuroendocrine tumors such as pheochromocytoma. The scan revealed tumor in my adrenal gland. The doctors were still unsure if both the adrenal glands were affected or only one. In case the tumor is malignant, it’s imperative to remove the gland. This very rare condition is called Pheocromacytoma (PCC). It usually develops in the small glands on top of the kidneys called the adrenal glands. Because of hormones secreted symptoms include high blood pressure, rapid heartbeat, sweating and headache.

 

Now that the detection was done the challenge that posed in front of us was to find out whether both the adrenal glands were affected or only one. Since it wouldn’t show on the regular CT scan, a specialized CT scan was done after which they concluded that both the adrenal glands were affected, one of which was more severely affected than the other. It took a long time to decide whether to remove both the adrenal glands because if both are removed, one is subjected to a lifetime of steroid medication. I was too young to understand the complexity of my condition. There was a lot of uncertainty and fear. It was a highly traumatic experience for my family and me.

 

Now the important question was whether to go for bilateral or unilateral adrenalectomy. Adrenalectomy is an operation that removes one or both adrenal glands. If one is removed, the procedure is called unilateral adrenalectomy. When two adrenal glands are removed, it’s called bilateral adrenalectomy. It was a very critical decision as if you removed both the adrenal glands or if you remove one and the other is not functioning properly, you may need to take steroids to replace hormones that were previously made by your adrenal glands. After a long debate they finally decided to go ahead with bilateral adrenalectomy. I got hospitalized for the surgery which was to be conducted by one of the best pediatric surgeons. For the surgery to be conducted the blood pressure must be brought to normal. It took about 30-35 days before they could finally stabilize my BP to perform the surgery. It was a very major surgery and an extremely life-threatening one. Every parameter had to be carefully monitored and controlled for it to become successful. All of this was communicated to me by my parents as they didn’t want to hide anything from me. Unlike other cancer types where you could even treat with chemotherapy or other less invasive methods, this was highly critical as you are removing one of the most important glands in your body. By Almighty’s blessings, the operation was successful. I was closely monitored by the team of doctors and nurses to ensure I was responding to the treatment properly. Since the glands were removed, they had to inject hormones that were previously secreted by the glands. I was hospitalized for close to 3 months and even after that, I had a team of doctors and nurses monitoring me closely at my residence.

Education and Work-Life:

I was an extremely active kid who loved sports. I was very notorious too. The regular episodes of illnesses and hospitalization didn’t deter me from achieving my academic goals or leading a school life that’s as normal as can be. My school too had been very supportive in my journey. During the most critical years, I was not only permitted to only appear for the exams but also had teachers come to the hospital to give private classes. Due to my health condition, I would find it extremely difficult to concentrate on my studies and on occasion even failed in some subjects. Nevertheless, these setbacks only motivated me to do better. With the support of my school, the teachers and God’s undeniable grace, I managed to secure First Class in my board exams. Due to my surgery, I had to discontinue my studies for a year when I was in Grade 11. After my surgery, I resumed my studies but not without a lot of difficulties. However, the constant support from the Principal and teachers helped me sail through once again and I managed to clear Grade 12 board exams. Thereafter, I decided to pursue Engineering. Life after surgery this critical is difficult, but I didn’t want to believe that. I wanted to rise above and beyond my circumstances. I decided to take charge of my life. I would work out regularly and actively participate in sports. I consciously built my immunity to fight the infections as I am more prone than a normal person. I tried to live my life as normally as possible and would do everything that a normal person would. In fact, even in my friend circle, only a couple of them knew of my condition. Nobody could look and me and tell of the challenging experiences I had gone through. I also decided to go to UK to pursue my master’s degree and landed there after a lot of convincing. However, fate had something else planned because I had to return to India in 25 days. My condition started deteriorating. I got hospitalized in the foreign land without my support system around me. It was an extremely frightening experience and I decided to return.

 

After returning from UK, I joined Tech Mahindra and performed exceedingly well. My efforts bore results and were being appreciated by my seniors. I received a lot of accolades and recognition.

Relationship and Marriage:

I was in a relationship for 5 years with my childhood friend. She knew of my health condition closely. We were in love and decided to get married. I even consulted the doctors to know if I could lead a normal and healthy married life, if I could bear children. They gave me the go-ahead. However, her parents weren’t keen on the alliance. My health was a big deterrent. Nonetheless, we got engaged. Things weren’t going smoothly between us and in hindsight, we should have called it off, but I was completely invested in the relationship and giving up was not an option. We got married and I moved to her place to make things less difficult for her. She was having a hard time between her love for me and her parents’ constant criticism of our marriage. The situation didn’t improve, and the pain kept becoming intolerable. My health also started deteriorating due to all the stress which called for frequent changes in my medications which added additional stress on the body to get accustomed to the new prescription. Eventually, I decided to leave her house. After living separately for some time, we got divorced. It was a highly stressful and depressive period of my life. I was diagnosed with PTSD (Post Traumatic Stress Disorder) and OCD (Obsessive Compulsive Disorder). My life had been one long battle of physical health but to add insult to injury, my mental health took a toll too, and as a result, I started underperforming at my work. I decided to quit my job and move to New Zealand to pursue my Masters. However, again my health couldn’t support me, and I had to return. On returning, I got to know that my ex-wife had passed away. It’s a loss that still haunts me, and I am coping with it every single day.

Parting Message:

While life may throw curveballs at you and you may spiral into an abyss of self-pity and depression, it’s very important to rise above your circumstances. It’s crucial to consciously take small mindful steps towards coping with your situation and finding success in whatever it is that you’re struggling with. Today when I look back and realize how far I have come, I am extremely proud of myself, and though excruciating, it has been a remarkable journey. It’s important to assess life situation and come up with different solutions than being stuck with one and take calculated risks to get the desired outcome.