Amina Fatima Mehdi underwent a heart and double lung transplant at the age of 30. She became aware of her ASD (Atrial Septal Defect), a congenital heart defect, at the age of 3, and received her diagnosis of PAH (Pulmonary Arterial Hypertension) at the age of 12. She shares her journey of overcoming various challenges along the way and highlights how her positive attitude and strong determination helped her conquer them.
How did you find out about the diagnosis of Atrial Septal Defect and Pulmonary Arterial Hypertension?
Atrial Septal Defect is actually a congenital disease, so I had it from birth. However, it went undiagnosed until I was 3 years old. I had no family history of it. During my childhood, I used to suffer from severe colds frequently, and my heartbeat used to get very high during those times. I had difficulty eating and had to stay isolated to prevent secondary infections because I was experiencing chronic cough. Once my heart rate abruptly reached nearly 150 - 200 beats per minute and I became unconscious, following which I was taken to the hospital. At that time ASD (Atrial Septal Defect) was diagnosed and the doctor recommended surgery. But as there was an associated risk, we did not take immediate action. I was sent home after stabilizing.
Such episodes of arrhythmia started occurring more and more frequently, once every 3-6 months. Each time the doctors gave me medications and sent me home once the heartbeat became normal. During one of such visits to the hospital, when I was 12 years old, a doctor diagnosed me with Pulmonary Arterial Hypertension (PAH). He advised us to go to Delhi since adequate treatment was not possible in Lucknow at the time. We went to a hospital in Delhi and learned that surgery was the only option, but it was not possible due to high blood pressure. I had no option but to wait. No one could do anything at that time. The doctors recommended us to visit Narayana Institute of Cardiac Sciences, Bengaluru. We went there in 2004.
What was your reaction and what was your family’s reaction to the diagnosis?
Initial reactions to the diagnosis varied. I was not initially informed, but my parents eventually disclosed it to me. I felt like I suddenly grew up like a warrior getting ready for a big fight. Additionally, fear and stress were not part of my nature. We live in a joint family, and everyone supported us in pursuing further treatment in Bengaluru. I have two sisters and a younger brother. Knowing that we were all in this together gave me comfort.
What was the course of treatment after the diagnosis? What led you to the transplant decision?
Doctors recommended immediate surgery after performing necessary tests such as blood tests, ECG, ECHO, and MRI at Bengaluru hospital. I was happy and positive that everything would be fine soon. When the doctor asked if I had any queries, my main concern was whether I could eat maggi afterward. I was not even worried about the surgery at that time.
Eventually, my pre-op tests were done, pre-surgery medication was administered, and the OT was ready. However, they could not perform the surgery that day because my blood pressure was very high. Doctors said that they could not proceed until the pressure was controlled and discharged me with medications. I was too young to understand all this, and my parents never let me stress out about the situation.
My situation started worsening soon after. I feared that anything could happen at any time as I was experiencing frequent high heartbeats. I could not go to school regularly, although they supported me so much in my studies. Now, after completing my post-graduation, I am planning to pursue a PhD. Despite my illness, chest pain and palpitations, I continued with my job. It felt like facing a heart attack daily.
At the age of 25, once I had an episode of arrhythmia coupled with hemoptysis (bleeding in cough), bloody vomits (hematemesis), and bleeding from the nose (epistaxis). We went to a doctor in Lucknow, who did not inform us that it could happen due to lung infection. During winter, I had frequent hemoptysis. When it suddenly worsened in summer with nosebleeds and vomits, we went to Bengaluru. They managed it with tranexamic acid. At that time the doctor emphasized the urgent need of a transplant. Subsequently, we were going for follow-ups every year.
Once I had severe bleeding from the nose and vomited, we took online appointment to Bengaluru hospital for pulmonologist. As soon as this happened, we took an emergency flight to Bengaluru and got readmitted. My SpO2 had dropped below 92 during the flight. Somehow by god’s grace, we managed to reach the hospital in time. Doctors told me I had suffered acute right ventricular failure and all my reports were in very bad shape. I was advised a heart transplant at the time but we were told that there was no guarantee, and that there would be certain death if no donor was found in time. My lungs were on the verge of failing and my reports had not improved much either. The doctors had a hard time maintaining my magnesium and potassium levels throughout the ordeal. They stabilized me. Now, there was no other option but a transplant.
Please share with us your transplant journey, from finding a donor to the surgery experience.
As soon as we submitted the transplant form, my evaluation began. I underwent a comprehensive full body checkup, including MRI, ECG, ECHO, bone density, CT scans of heart and chest. It took 15 days for completion and we were advised to stay in Bengaluru during this period. Waiting for a donor for a year was the hardest time. During our stay in hotel, I required oxygen support 24*7. Once I had severe chest pain and rapid heartbeat, leading us to rush to the hospital. There we were informed that I had suffered a second right ventricular heart failure. My condition deteriorated further, my body fluid was removed and potassium injections were given. Despite these efforts, hemoptysis continued. I was admitted in the ICU when I experienced excessive bleeding in the middle of the night. After stabilizing I was transferred back to the ward. I had another episode of excessive bleeding and I was sent back to ICU again. It was during this time that I cried for the first time, desiring to be with my parents after a prolonged separation. It was then that we received the call informing us that a donor had been found, bringing us happiness after a year of waiting. With that the final pre-op tests began.
Surgery experience:
Just as the pre- op tests began, I suffered a third right ventricular heart failure, leading to a loss of hope as the bleeding seemed uncontrollable. At 6 am the next morning, I was taken to the operation theatre. I told my mother with a strong hope that I would return soon. The doctors briefed them on the transplant process and the potential complications of failure, including organ damage, paralysis or sudden death.
My surgery lasted for nearly 14 hours. I was revived from anesthesia next day, and when I became conscious, the first thing I remember is there were machines and beeps all around me. I had stitches on my body. I was on ventilator and was unable to swallow, necessitating the provision of food through a tube. As my recovery progressed well, I was able to consume solid food within a week. The doctors provided excellent support.
Let us know about the challenges you have encountered during this phase? Have you experienced any complications after the transplant?
Initially I relied on bi-pap for breathing. However, I was determined to wean off it and eventually succeeded. Weakness and pain were significant hurdles. I could not sit or could not go to washroom without support of nurse or my mother. Additionally, I underwent bronchoscopy 6 times and a swallowing test, both of which were extremely painful.
As for complications post-transplant, I developed pleural effusion, and surgery to remove the fluid was performed. Furthermore, I developed mild tricuspid regurgitation after the heart transplant, a condition where the heart valve’s flaps do not close properly. To manage these complications and to avoid secondary infections, I must adhere to precautions such as avoiding outside food, sugar, maintaining isolation and walking slowly.
Was any rehab care recommended? Do you require any counselling support?
Initially, physiotherapist from hospital recommended stretching exercises, lifting dumbbells, and push up exercises. Currently, I adhere to regular walking at home as advised. A healthy protein rich diet and exercise are crucial post-transplant. I did not require any counselling support. My parents are my biggest source of motivation and support. When needed, I also find peace in talking to myself, drawing strength from within.
What medications are you currently taking? Are there any side effects?
I am currently taking prednisolone, combination of trimethoprim & sulfamethoxazole, aspirin and immunosuppressants such as macrolide and mycophenolate mofetil. I experience severe hair loss and occasional shivering as side effects. Additionally, I have lost my weight during this period.
As you are working, how do you manage your work?
I currently work as an HR manager, which allows me to work from home, minimizing the risk of secondary infections from outside. However, I remain open to exploring better opportunities. My dream job is to become professor. I aspire to serve in NGOs to help motivate and alleviate the fears of individuals facing transplantation or any health issues.
Can you share how you managed financially, if you are comfortable discussing it to audience?
We did not have any insurance, but our community provided significant support. One of my doctors helped me to obtain assistance from an NGO in Bengaluru. Additionally, the hospital reduced their cost for me, amounting to approximately 28 lacs for the entire package. They eliminated all my initial hospitalization expenses and only charged for the transplant, considering our financial condition. I am grateful for their humanity.
What advice would you give to others who are facing a similar transplant journey?
Facing a transplant journey can indeed feel overwhelming, but I have learned a few things along the way that might help others:
- There is notable lack of awareness about organ donation in India. It is incredible how many lives can be saved through it.
- We should encourage everyone to become donors and make a difference.
- Getting transplant is a positive thing. We have qualified team of doctors, making transplants safe, and allowing for a return to a normal life post-surgery.
- Trust me, positivity goes a long way. Keeping a positive outlook helped me recover well during this tough time.
- Act early. Do not wait until it is too late. Your health should be your first priority.
- Knowledge is power. Take the time to learn about the transplant process, potential challenges, and how to best care for yourself. It will empower you to take charge of your health.
- Live each moment fully and never take life for granted. Focus on the future and effectively manage your health. Remember “this too shall pass.”
