Hemalatha Rao was diagnosed with a hole in her heart at the age of three. Since then she has dealt with a slew of conditions and has even undergone a heart and double lung transplant in the midst of the Covid Pandemic. She shares her experience and her approach to building mental fortitude and resilience.
At the age of 46, just before the 2nd Covid wave hit the country, I underwent a heart and double lung transplant. I have been waiting for this transplant since Aug 2019, when the world had not even heard of the Coronavirus. Well, my wait was finally over this Feb, 2021 and I am now well on my way to recovery.
Diagnosed during childhood
When I was almost 3 years old, I had ear pain. My parents took me to the doctor and during routine check-up, I was found to have a hole in my heart. I was referred to a Cardiologist in Chennai who mentioned that in addition, my aorta was enlarged and suspected I would get Pulmonary Arterial Hypertension (PAH) due to my Patent Ductus Arteriosus (PDA). Imagine telling a naughty, active child not to strain herself and be careful. It didn’t happen. In 10th grade, while cycling uphill one day, I fainted. This happened again while climbing stairs. We went to a Neurologist who put me on anti-epileptic drugs for 9 years. When I met Dr Cherian, my cardiologist after that, he correctly diagnosed me with PAH. On testing, my pulmonary pressure was 4 times the normal. He was surprised to see I was so normal. I was put on Amlodipine 2.5mg to maintain my BP and Mazetol for fainting. They figured the fainting was due to hypoxia or low oxygen reaching the brain. I was also told I could never have children. I also underwent PDA ligation.
I finished my college and wanted to become a doctor but my mother did not want me to go far away for school. I had lost my father in 8th grade and couldn’t leave her alone. I completed my Software Engineering and started working at Sony India. During an office retreat, I started feeling breathless while playing badminton. The next day, I met a Cardiologist who did a nuclear scan and found a pulmonary embolism. My oxygen saturation had dropped to 65%. I was started on blood thinners, injections and continuous oxygen for 24 hours a day. I had to quit my job and was very depressed. I had now become totally dependent on my mom.
Complications Begin
After some time, I was able to manage household chores and so I decided to start my own Placement Consultancy from home. My mom seeing me back to almost normal starting looking for a suitable boy for marriage. I got married in 2003 and was relatively healthy but climbing stairs was a cyanotic event (turning blue) always. I also had insomnia but no cause was found. My husband and I moved to UK for his work and I started doing my follow-ups at a local hospital there. Since I was in my 30s now, they told me the heart was under duress and found I had an Aortapulmonary window (a hole connecting the aorta and pulmonary artery) which was compensating. I was told I had Eisenmenger’s Syndrome and an enlarged right ventricle. I was prescribed nocturnal oxygen so that my heart could get some rest at night.
In 2010 during a routine blood test, my platelets had dropped to 14,000. My nose then started bleeding and was told this is because of Thrombocytopenia. My bone marrow biopsy turned out to be normal. My Hb was at 20 which meant my body was overproducing RBCs due to low oxygen levels. The following year, I got pregnant by accident and had to get it terminated.
Neuropathy and Sjogren's Syndrome
2012 was when numbness and electrical sensations started in my pinky finger and slowly started spreading. Sjogren’s Syndrome was the culprit but I got the diagnosis confirmed by my cardiologist so that treatment would be aligned with my other issues. Steroids and Thioprine were added to my list of meds. By then, both my hands, left-side of my mouth and left leg had Peripheral Ganglion Neuropathy. I also had ataxia and my esophagus would not push my food down. After 2.5 years, my immunosuppressants and steroids were cut down because it was affecting my heart. I had gained weight due to steroids and this was causing palpitations, and heaviness. At the time, my Pulmonologist suggested I go for a transplant since my heart may not last after 2-3 years, and post-transplant I would have to be on immunosuppressants anyways which would keep Sjogren’s in control.
We approached Apollo hospital in 2017 for an evaluation. They said, I could wait more, continue my PAH medications and do regular follow-ups with them directly. However, this autoimmune disorder was troubling me a lot. I could barely eat because I would bite my tongue and bleed. Steroid side-effects were terrible, I had become pre-diabetic. Depression and suicidal thoughts set in and I finally decided to see a Psychiatrist who put me on temporary anti-depressants. Till then I was always a happy-go-lucky type of person. When people asked me what was wrong, jokingly I would say it’s a plumbing or electrical issue. Counselling helped me tremendously as well.
Time For A Transplant
As time passed, I lost a lot of muscle strength and fainted in the shower once in 2019. We went to Apollo and my 6 min walk test was worse than ever. The team decided it was time. They did the pre-transplant evaluation and counselling with all the doctors and family members. In August 2019, we rented a flat next to the hospital in Chennai that was free of dust, pollution, and pigeons. A few organs came by but none a match. Then the Covid pandemic started and in August both my husband and I got infected. Luckily, we had a mild case with some fever and fatigue, but my neuropathy got exaggerated. Doctors were relieved I had recovered without any medications for Covid. Finally on 1st of Feb, we got a call that a 13 year old’s organs were a match but they were in Jaipur. This was an added expense but we chartered a flight for the doctors to collect the organs. On Feb 2nd after 8 hours of surgery, the organs were transplanted. My O2 and CO2 levels were abnormal and my lungs were not opening up. A scan revealed a blood clot outside the lung, so now the option was to do a tracheostomy or re-open the chest. Tracheostomy for me was dangerous so after a week, I was wheeled into surgery to open and clear the clot. While in ICU, I got an infection so after 23 days, I was finally discharged with a home nurse.
Since then, I have been on vigorous rehab which includes:
- 30 mins of Physiotherapy with weight training (twice daily)
- 20 mins of cycling (twice daily)
- Walking 2 kms
- Climbing 3 flights of stairs
- Breathing exercises
Everything was going fine until I fell in the bathroom a few weeks ago and fractured my hip in 3 places. So currently am on bed rest. My last CT showed that my spine had some disc enlargement possibly due to neuropathy. My Dexa scan showed osteoporosis in my spine and hip which could be a cause of steroid use, chronic hypoxia, Sjogren’s or menopause (periods stopped post transplant). Besides calcium supplements, am on pregabalin for numbness and stiffness. WBCs do fall periodically which need Neukine injections. Sjogrens for the most part is under control but I had to shift to soft, moist foods only because I cannot eat dry foods that cut my tongue. I cannot feel or taste food anymore and have poor motility.
How I Cope With My Situation
I have detached myself from this body. I think that all these issues are happening to the body and do not affect my soul. I talk to my organs everyday like they are my babies. I had read somewhere that talking nicely to plants helps them grow well so I thought why not do the same for our organs.
I do what I can from home. I talk and counsel people who are referred to me via support groups. I sleep well, have no regrets in life. I don’t believe in self-pity. Listening to music, spiritual speeches and reading the Bhagavad Gita has given me a lot of courage. I am the happiest person and believe things happen but we have to move on in life. God has been kind even during trying times and it could have been worse.
God has given me and my family a happy temperament to cope well. We are very close-knit and I have received lots of love and support from them and friends. My husband is amazing, I couldn’t have asked for a better partner. My mom is my hero in my life. She has been my source of strength throughout.
