Ajit Tolani,42 went through myriad conditions like Scleroderma and a double lung transplant over two decades to finally reach recovery through proper lifestyle and medication. He recounts his long journey with a number of health ordeals.
You had a series of conditions. How would you like to talk about them?
Yes, I do have series of conditions. I realized that one medical condition led to other and ended in me requiring a double lung transplant. The patients must address the medical conditions in the initial stage rather than become chronic and multiply into several diseases. Let me explain:
- I started with Scleroderma. It initially affected my fingers. Over two decades (20 years), it slowly and severely affected my esophagus and upper stomach valve (splinter). The acid, bile juices, and other stuff from the stomach started aspirating (leaking) into the lungs. The lungs got infected several times with pneumonia and developed fibrosis. Eventually, the lungs got fibrotic and needed a transplant. The Indian doctors kept experimenting and made us lose precious time to go for transplant. Resultantly, I became very sick and required life support at the hospital. The life support led to cardiac arrest, liver failure, and an almost lost chance to get the transplant. Somehow my liver revived, and I got the transplant. I also developed lung cancer because of aspiration, which we learned through tissue samples from old lungs during transplant surgery.
- I finally received a Transplant in March 2017 at the Cleveland Clinic located in Cleveland, OH, in the US.
One medical condition, Scleroderma, was not treated well and led to so many other conditions.
When were you diagnosed?
I was diagnosed with Scleroderma around the age of 20 years
What were the early symptoms?
Bluishness of fingers (Raynaud’s phenomenon) and thickening of finger skin
Please describe your experience of managing the conditions?
I was a diligent patient taking prescribed medicines on time. But, unfortunately, wrong diagnosis led to the worsening of my condition.
How has your life changed after the transplant?
Ironically my life has changed for the better after the transplant. I perform every normal bodily function as a healthy adult of my age can. I could achieve this with the following:
- Medical Team: I have a medical team that continuously monitors my health.
- Diet: I eat the proper diet, and it keeps my vitals and blood tests in the normal zone. My doctors laugh and say that I have better blood reports than them!
- Exercise: I do thrice a week one hour of exercises to keep myself physically fit. I also do gymnastics which I started after the transplant and never did earlier in my life.
What is the effect of the transplant on your scleroderma symptoms and disease progression?
The transplant medications helped me ultimately control the scleroderma symptoms and progression. The only line of treatment for Scleroderma is immunosuppressive medicines. Post-transplant, the patients must take a high level of immunosuppressive medications to prevent the immune system from attacking the new organ. With the lungs being the biggest organ, immunosuppressive drugs required are very high and indirectly controls Scleroderma.
Did you specifically move to the US to deal with Scleroderma?
It is impractical to move countries permanently to handle just medical conditions. I had several reasons to move, most notably my daughter being a US citizen. My move to the US did get fast-forwarded with the developing health condition.
Scleroderma is well known medical condition for Indian doctors too. Unfortunately, I feel that the doctors in India had too many patients to handle and were are not able to give patients enough time to understand the individual manifestations of the disease.
What medications are you on?
I take almost 15 medications every day.
- The most important ones are a cocktail of immunosuppressive medicines (Tacrolimus, Mycophenolate Mofetil, and Prednisone).
- I also need a high dose of antacid medicines known as proton pump inhibitors (Nexium)
- Multivitamins, Calcium supplements, and Vitamin D3
- Vasodilator medication for Scleroderma Renaud’s
- Anti-depressant and blood pressure medicines
- Lifelong antibiotics (Bactrim and Azithromycin)
- Lung inhaler (budesonide)
What were some of the challenges you faced, and what is your advice to patients who face similar challenges?
I have some advice for people going through similar conditions:
- Sleep at a 30-degree angle: almost every Scleroderma patient runs into reflux issues for various reasons, including weakened esophagus and splinter. The easiest way to avoid/delay lung issues is to sleep at a 30-degree angle. Patients with Scleroderma and reflux should also explore partial fundoplication surgery with their doctors.
- Medicines can keep people alive but cannot make their living entirely normal. Diet and exercise play a very significant role, bringing normalcy to life.
- Mental health is equally important as physical health. Therefore, the patient should not be shy of taking help from psychologists and psychiatrists.
- Meditation helped me a lot in bearing the trauma and stress from disease and transplant. Therefore, I recommend that patients MUST do some form of meditation they like.
How much have you been able to return to mainstream life after your transplant?
I have been able to run my India Tax litigation practice efficiently. I regularly appear in Indian courts online to represent my client's cases. I recently appeared for Bar exam in the US to be a lawyer in the US as well. I also went to Harvard University in March 2020 for a Leadership Development Program and currently pursuing a Tax LLM course at Georgetown University.
How has the ongoing Pandemic Covid 19 been a problem for your condition as well as your treatment?
- Covid has been a life-threatening risk for any immunocompromised patients, including me. As per my limited understanding, almost 90% of transplanted patients infected by Covid passed away.
- Covid also posed challenges to physical activity and mental health. A patent cannot recover or sustain a healthy life without physical movements and especially regular exercises. Further, living in the same four walls made patients irritable and anxious.
How have you handled the challenges offered by the Covid situation? Since you are immunocompromised, what special care have you had to take in the last one and a half years?
With appropriate guidance from my doctors, I could handle the Covid challenges efficiently. Below are some of the advice:
- Always wear a mask when you are out of home.
- Human beings spread Covid. So, maintain six feet or as much distance as you can from others.
- Avoid socialization if you can.
- Do not allow sick people, especially with colds and coughs, to visit your home. It is ok to say no to meet sick people!
- Covid mostly travels in the body through the throat. Therefore, use any alcohol-based mouthwash or medicated mouthwash such as Chlorhexidine before going out or after returning.
- Take a shower after coming back home from outside. One can add some anti-septic like Dettol or Savlon to the body wash.
- Sanitize or wash hands frequently.
- Always carry disinfecting wipes and/or spray.
- Avoid hugs and physical touch as much as you can.
What kind of specialists do you consult and how often?
- Transplant Pulmonologist – once in four months
- Gastroenterologist – once a year
- Vascular Medicine doctor for Raynaud’s – once a year
- Endocrinologist for Bone health – once a year
Have you had to make some changes to your lifestyle because of your condition?
Yes, as under:
- I do not eat anything three hours before sleeping
- Avoid or minimize carbohydrates in dinner
- Eat a good diet in consultation with a dietician
- Regular workouts
- Most importantly, taking medicines on time. 8 am means 8 am, and not 8.15 am!
- Daily meditation to reduce stress
Have you tried complementary medicine or therapies, like homeopathy or Yoga?
- The transplant medications interact a lot with other drugs. Therefore, it is not advisable to take any other medications post-transplant without the approval of the Transplant Pulmonologist. In line with this, I have been advised not to take homeopathic, ayurvedic, and over-the-counter allopathic medicines.
- Any form of exercise, including Yoga, is perfect for human health. So the days when I don’t feel like going to the gym, I end up doing Yoga.
Has it been difficult emotionally to cope with your condition?
Yes, indeed it has been. My doctors early on got me mental health consultations and medications to help me handle it effectively. So now I am a very happy and healthy man!
How has your family supported you?
Absolutely and fully! Family plays a vital role in handling trauma and health recovery. I am blessed to have a beautiful family, and every family member went above and beyond in giving me the confidence to deal with my health condition.
Have you ever consulted a counselor?
Yes, I have. I recommend that all patients with Chronic diseases go for counseling.
What was the hardest part of the treatment? And what kept you going?
The recovery coupled with mental health was the hardest part. I questioned myself at times whether I will ever be the person I was before I got the lung issues. I made a goal for myself that I will never let my family members ever have to worry about my health. The dream kept me going and figuring out the path to full recovery. Whenever I would feel pain during exercise, I would think this short-term pain will give me long-term good health and invaluable smiles on the faces of my family members.
Is there any personal anecdote that you would like to share with us?
The words “Persistent and Consistent” define my recovery. I persistently and consistently followed a regimen with timely medicines, proper diet, and exercise despite all odds, including pain, agony, and depression leading to victory.
