Chandni’s Autoimmune Story

MEET CHANDNI

I’m 36 years old and love in London, UK. I have two children – a five year old boy named Kiyan and an eleven month old girl named Zuri. My family is originally from India but both my parents grew up in East Africa and moved to the UK in the late 1970s (during Idi Amin’s reign in Uganda). I have worked in the charity sector for over 10 years and recently signed up as an online Fitness Coach to help others achieve their fitness goals.

 DIAGNOSIS

My autoimmunity was picked up during a random blood test that my doctor had ordered because I had informed her that my husband and I were planning on trying to conceive. The day after my bloods were taken, she rang me in a panic asking me to take a sample of urine straight to the lab at the hospital because my anti-nuclear antibody (ANA) levels were unusually high. It turns out that my urine was consistent with my blood and I was referred to a rheumatologist.

As I wasn’t presenting with any symptoms the rheumatologist couldn’t diagnose my condition and so I was told that I had “undifferentiated connective tissue disease.” The rheumatologist also listened in to my heart and informed me that I had a very loud murmur which he thought should be investigated. He sent me away with hydroxychloroquine and a referral for an echocardiogram on my heart.

A couple of months later, I found out I was pregnant. I was still able to have my echocardiogram and was told that there seemed to be some abnormality with one of my valves but they couldn’t tell if it was an actual problem or a temporary change due to my pregnancy.

Because of the undifferentiated connective tissue disease and potential problem with my heart, I was looked after very well by a team of specialists during the rest of my pregnancy. In July 2015 I gave birth (naturally) to a healthy baby boy at 37 weeks.

During the second half of my pregnancy, I had been leaking protein in my urine and so this continued to be monitored after giving birth. When there was still protein present at 6 months postpartum, I was told I had to have a kidney biopsy. It was a pretty straightforward and quick procedure and the outcome was that I had lupus which had affected my kidneys during pregnancy – lupus nephritis.

I was put on immunosuppressants and steroids – the latter of which caused me to gain lots of weight and left me feeling pretty rubbish about myself. I continued on the steroids for six months when I was offered a switch to a Rituximab infusion. Knowing that the side effects were way more tolerable than the steroids, I agreed.

Lucky for me, the Rituximab worked and I have now been in lupus remission since early 2018.

However, amongst all of this, I was also told that I have critical aortic stenosis – a condition that can lead to heart failure and, in the most extreme cases, sudden death.

I have always been super fit and healthy and have never presented with any symptoms of heart disease. Even my doctors were shocked by the amount of pressure my heart can take during exercise stress tests.

After serious consideration and numerous deliberations between medical professionals, in 2018 I was given the go ahead to get pregnant again. Once again I was looked after well during my second pregnancy and in the summer of 2019 gave birth (naturally) to a healthy baby girl.

I continue to take immunosuppressants (Azathioprine) and hydroxychloroquine every day and am due to have open heart surgery in September this year to fix my breaking heart.

In the meantime, my mission is to get as fit and healthy as possible so that I can recover quickly from the operation and inspire others that if I can do it, they can too!

 LIFE CHANGE

While I seem to have no symptoms of lupus or heart disease, living with an autoimmune condition is emotionally draining. I am constantly worried about if I fall ill and can’t recover because of my suppressed immune system, if I go into cardiac arrest because of my heart and how long I will be around for my children.

It has made me value health and place it as one of my top priorities. When your body is working against you, you have to do everything in your control to make sure you are mitigating the damage it might cause.

 HEALING

I am super passionate about health and fitness and showing others that if my broken body can reap the benefits of exercise, then theirs can too! Exercising brings me a sense of peace, helps me think clearly and make sure that I don’t fall into a bottomless hole of despair and hopelessness.

I also believe that laughter is the best medicine. I recently started a new Instagram page to accompany my online Fitness Coaching business. This page aims to bring light to chronic illness and show others that just because you are living with a serious health condition, life isn’t all doom and gloom.

 STRUGGLE

I still struggle some days to come to terms with the fact that I am chronically ill. I guess it is hard for me because I have never experienced any symptoms. It can be frustrating to have to take medication everyday for an illness that I don’t feel. This is especially the case with the immunosuppressants and particularly given the COVID-19 situation.

INSPIRATION

What doesn’t kill you makes you stronger!

This quote always reminds me that whatever life throws at me, I am strong and able to overcome it. We are only given one life so why waste it focusing on the negatives?

Find Chandni | @chronicworkoutjunkie