Roshni Chaudhari, 28 who was born with a congenital heart disease, has spent the last 20 years of her life coping with the challenges associated with Pulmonary Hypertension. She talks about her journey to acceptance and about her dreams.
Please tell us a bit about your condition
I have Congenital Heart Disease – a Ventricular Septal Defect, that is unoperated. Because of this I also have secondary Pulmonary Hypertension (PH), i.e. a type of high blood pressure that affects the arteries in the lungs and puts pressure on the right side of the heart. Because of the PH, I could never do physically strenuous activities as I tend to run out of breath if I overdo it. With the advance in medications though, it’s mostly under control. So some days getting dressed can also be a task (especially when I’m closer to my periods, stamina goes for a toss), other days I’m super active and can manage working out with weights too. I have Eisenmenger Syndrome too, due to the VSD, which is basically a condition that results from abnormal blood circulation due to a defect in the heart, leading to cyanosis - bluish nails, lips etc.
As of now, there is still no cure for PH, only treatments and the option of transplant of the lungs, or heart, or both.
When were you diagnosed?
I was diagnosed about 20-21 years ago, when I was about 8-9 years old.
What were the early symptoms? What made you go see a doctor?
Doctors never found anything when I was born, but growing up I always had a weak immune system, constantly ending up with coughs and colds. I used to have trouble playing and climbing up stairs too. PH is a very rare condition, most doctors didn’t even know much about it, especially back then, so after a series of misdiagnosis (as PH symptoms are very similar to diseases like Tuberculosis) and wrong medications, I finally got my diagnosis when I had the worst bout of cough and trouble breathing. I would be struggling every night to even fall asleep because my condition was so bad. Dr. Bharat Dalvi correctly diagnosed me and I was admitted to the hospital, I clearly remember I was admitted in the NICU, with so many young infants with similar issues around. My heart was pretty much going into right heart failure due to the PH. As my PH pressures were quite high, operating and closing up the VSD would have been a huge risk, hence we didn’t do that.
Please describe your experience of managing your condition. What was your course of treatment?
My entire life I’ve mostly stayed indoors and rested as much as possible. I didn’t attend school regularly, but my parents made sure I had a normal life when it came to school, friendships and education. The days I did attend I would take the elevator in school, skip the Physical Exercise period and all sports, and limit the amount I walked around. I focused on my academics and other creative activities like writing, reading, learning new things on the computer on my own, art and craft etc. I also took part in elocution competitions in school. I made the most of my strengths, because of which I even topped in school and college.
Back in 2003, I also visited the US as they had more advanced treatments and got on the medication Tracleer, which actually helped a lot with my growth, my breathing and my overall condition. After coming back to India, my medications were changed a bit, but I was put on Bosentan soon after (which is the same as Tracleer). Now I’m on Ambrisentan along with Lanoxin and Sildenafil. I have been under the care of Dr. Bharat Dalvi since diagnosis.
The major rule has always been to never stress emotionally or physically. I’ve understood my limits over time and adapted according to it. I’ve also always been extremely particular about my medications, taking them at the exact same time everyday. I was never on any external oxygen though, again I think this was because I’ve always understood my limits, rested, and taken medicines regularly, without fail. All of this combined with my will to live my life to the fullest and my supportive, positive family have kept me going.
What is your present condition? Have you had any related complications from your primary condition?
I do manage exercise better, but like I mentioned earlier, there are good days and bad. I still avoid climbing stairs, but I do work out and go for walks. Even the work outs I do are all modified to avoid any cardio by my trainer. I take ample and adequate breaks when I work out too. The cardinal rule is to never be so out of breath that I can’t speak.
I don’t work full-time because that is quite stressful for me, but I do work freelance as an influencer and content creator, which allows me to work from my own home. One thing I must mention is that due to my condition, I have always been quite thin. There are studies on this that when you have an unoperated CHD, it can be difficult to gain weight as the body keeps your weight at a limit that the heart can manage.
My parents – my caregivers – have always been there for me, motivating and encouraging me and also making my life easier. Keeping everything in mind, I’ve had a pretty regular life with friends, studies, work, travel etc. The most important thing is to understand your limits, work around them, keep your doctor in the loop and consult him/her for everything from a teeth cleaning appointment to even getting on a vitamin supplement, and take your routine medications everyday on time. Of course, as chronic illness patients, we should definitely do things to keep our mental and physical health balanced too. Mindfulness, yoga, exercise, talking to a therapist, journaling – do whatever works best for you!
Do you have a family history of your condition?
No. I have secondary PH, due to my VSD.
However, the other type of PH, i.e. Primary or Idiopathic PH, has been linked to genetics in various studies.
Were there any side-effects of the medicines? If yes, how do you manage them?
I have a sensitive stomach and the medicines over the years haven’t helped that at all. I don’t eat spicy food at all and mostly eat home cooked food only. Anyway, with my condition, I’m not allowed too much salt in my food, so my meals are cooked with very limited spices, oil etc.
I also got glasses soon after I started sildenafil, never had any vision problems before, but I’m not sure if that is necessarily a side effect of that (there are studies on this though).
Other than that, I get a blocked nose sometimes, without a cold.
Did you have to travel outside your city for your medical treatment or consult?
Yes, mentioned above. I was under the care of pulmonologist Dr. Richard Channick in San Diego, CA, USA in 2003 for about 8 months.
Have you learnt anything in managing in your condition that you wish you knew before?
I wasn’t very open about discussing my condition with people because of the “so sad” or “you look so normal” reactions I’ve got in the past. When I did start opening up on social media though, I met others like me and made some great friendships. It’s also become easier for me to tell friends about my condition without any shame or stigma. I have finally learned over time that my disease doesn’t define me.
Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?
I did try homeopathy for immunity, which helped for a little while, but I honestly saw my immunity was good even if I just altered my lifestyle and habits, so I stopped taking those medicines. Anti-inflammatory foods like turmeric, ginger, beets are all very helpful. Yoga is also great in managing my breath. If you do have a heart or pulmonary condition though, make sure you start off with very light yoga, even with the breathing exercises. It’s crucial to know your limits and be comfortable always,
How did you mentally/emotionally cope with your condition?
I’ve lived with the symptoms pretty much all my life so it was never new to me. Growing up was difficult, especially my teen years, as I was bullied for being underweight. I did a whole blog post on this – being told all the horrible things from “Do you shop in the kids section?” to “Dogs go for bones, men go for curves,” I’ve heard it all. There were times when I’ve cried and cried to my mother about how I’ll never be good enough. But somehow my zeal for life always made me bounce back. Today I’m a beauty and fashion influencer, celebrating who I am every day. Once I got to college, I started meeting understanding people who showed me that everyone isn’t a bully or obsessed with appearance. There’s always going to be good and bad people, you need to find the right ones for you, which I thankfully have!
Did you see a counselor for support? Were you offered counseling by your doctor?
I was too young when I got diagnosed to choose this option, but I have spoken with a therapist once for a short while, mostly to figure out things like career, self-worth, not attaching my whole identity to my illness. It did help to some extent, but essentially, it’s been my mother all my life standing by me, motivating me and boosting my morale, telling me I can go after everything I want in life, illness or not. The counsellor herself told me I don’t really need therapy, but I just felt better learning about my mind and how I can handle my emotions better. Everyone should go to therapy, it’s like flossing for the mind. There is no shame in it!
How has your family supported you? Who has been your biggest support/companion through it all?
My parents and my younger brother. Most of all, my mother. I have great friends too and I’m able to talk about my condition more openly with them now. I would like to stress on one thing – always be honest about your condition in your most important relationships. My brother is almost 8 years younger, but has always been aware of my limitations, which has made him more sensitive to other conditions too. Teach kids to be less ableist, teach them chronic illnesses are normal and there is nothing to be ashamed about having any such condition!
How did your friends treat you? Were you isolated? Did you share your experience with them soon after diagnosis?
I’m more comfortable telling them now. In school, I mostly hid it and tried to lead a double life sometimes, because I couldn’t stand people’s sympathy. But I was wrong, they’ve been very understanding after finding out. In my experience, the ones I’ve come across from my own generation or younger have been way better at understanding these things than older people, who only say “but you look so normal” when they find out. I wish people from every age group were taught about how invisible illnesses work and how there is no way to measure normalcy.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
It can be disheartening growing up and watching your friends run around and play. There were days I wished I could do that too, but I learned to get over it and focus on my strengths. Academics and creative pursuits kept me going. I love my life, even with all its challenges, so I do everything I can to live it to the most, within my capabilities. Don’t give up, figure out where your strengths lie and focus on those. I know it’s not easy to be strong all the time, and that’s fine, take your time to accept your condition. Cry, talk it out, do whatever you need, I still have my days when I don’t feel so great. But after all that, remind yourself of your worth and importance – the world is a better place with you in it! Also, don’t push yourself too much. Life doesn’t have to be a rat race, you can go at your own pace. Oh and get yourself a dog – they’re the best therapists around!
How has your diagnosis changed your life perspectives and ambitions?
When I was younger, I always thought I’d work a fancy corporate job at a large firm, even with the crazy hours, I’d manage. I also wanted to go live and study abroad. My dreams had to be altered, I stayed here and did an international affiliated undergrad degree though and the work I do gives me immense happiness. Eventually, everything works out for the best. Just hang in there and believe in yourself! You are your most important cheerleader and friend!
What keeps you awake at night?
Having such a condition often means I have days where I don’t end up doing much, falling asleep at night becomes a big problem then. So besides staying awake literally, what keeps me up are my dreams. The dream to make it big as a digital content creator, the dream to study new subjects and learn more about life and the human body, the dream to finally have a cure for PH, the dream to remove the stigma from chronic illnesses and PH and help others going through similar issues. I am one of the people handling the social media and other related activities at Pulmonary Hypertension India, a patient support group by Indian PHighters for all PHighters.
