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Submitted by PatientsEngage on 10 May 2018
Image of Gopa a black haired woman looking at the camera, living with Lupus in Mumbai, India

Gopa, 49 from Mumbai was diagnosed with Lupus Nephritis soon after her breast cancer treatment ended. She shares the complications that Lupus brought and the lifestyle changes that have helped her.

Please tell us a bit about your condition 

I have Lupus Nephritis (stage 5) and a blockage in the heart which is being treated with medicines.

When were you diagnosed? What were the early symptoms?

Well in 2000, I was diagnosed with Stage III Breast Cancer and had treatment going on till 2002. Soon after all my treatments ended, I noticed immense pain in all my joints after sundown. Some days, I was unable to straighten my fingers in the morning. I used to get low grade fever in the evenings too. I consulted a doctor and was diagnosed with Lupus.

Is there a history of Lupus in your family?

There is no history of lupus nephritis in my family.

Please describe your experience of managing Lupus

It's been a tough journey! A few years after my diagnosis, my marriage went through a terrible time with my husband walking out on me and two small boys. Living with pain isn't easy either, but once you accept it and stop focussing on it, it becomes easier. 

I am in a much better place now. I have always lived my life to the fullest and I try and do things that make me happy.

What is your present condition?

In July of 2017, my sugar levels dropped suddenly and I had to be rushed to the ICU. While in ICU, I was infected with Swine Flu and it affected my kidneys tremendously. The kidneys almost stopped working (creatinine levels rose to 15) and dialysis was started. Since January 2018, I am on dialysis thrice a week because my kidney functioning is down to 5%. Additionally, I have to often battle fluctuating BP and low haemoglobin levels. Since my immunity is poor, any minor cold or allergy flares up the Lupus and my entire body comes under attack.

Any related complications?

Anemia, hypertension and heart disease.

What medications are you on?

  • Nikoran for chest pain
  • Nicardia for hypertension
  • Plavix as an anti-platelet drug
  • Rosuvas for high cholesterol
  • Ecosprin for better blood circulation
  • Isolazine for chest pain
  • Azoran is an immune-suppressant
  • HCQS (hydroxycholoroquine sulphate) for lupus
  • Wysolone for arthritis
  • Prolomet for chest pain
  • Sobisis forte for urine alkanization
  • Alphadol is Vitamin D analogue
  • Sompraz is for acidity
  • Pantocid is for heartburn
  • Dytor for edema
  • Frusinex for edema
  • Moxovas for hypertension
  • Minipress for hypertension and stress
  • Ondem to prevent nausea/vomiting

Were there any side-effects of the medicines?

Drowsiness. I usually get knocked off to sleep after taking my medications at night.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Some of the challenges I had to face was drowsiness, fatigue, loss of appetite and occasional vomiting. I would strongly advise to

  • rest when your body demands it,
  • try and eat small meals every couple of hours,
  • eat light food and
  • try and stay active whenever you can.

Have you learnt anything in managing in your condition that you wish you knew before?

For me it has been a case of trial and error. I've often stumbled along the way but I never gave up. I kept trying to find solutions to my challenges.

What kind of specialists do you consult and how often?

I consult my nephrologist and general physician. I meet my nephrologist thrice a week when I go for dialysis.

What resources are available to you in your city to help you manage the condition?

I'm very blessed because I have the Hiranandani hospital where I go and they have a full fledged dialysis centres with the best technicians and my doctors also practice there.

Have you had to make some changes to your lifestyle because of your condition?

  • I can no longer work
  • Sunlight is detrimental so I stay indoors mostly
  • I used to much more active but I get tired now
  • I have almost become a vegetarian because meat is now harder to digest and I avoid red meat all together.
  • Due to a poor appetite, I only eat small meals.
  • Due to drowsiness, I avoid late nights.

Along with lifestyle changes to manage Lupus, the most important thing is to have a positive mindset.

Have you tried complementary medicine or therapies, like homeopathy or yoga?

No

Has it been difficult emotionally to cope with your condition?

I never believe in owning any disease, because if you own it, it owns you! I am a spiritual person and have faith in the higher power, but I know I have to continue living.

How has your family supported you?

My family has rallied around me throughout this journey. My children have been strong pillars of support for me.

How did your friends treat you? Were you isolated?

My friends have been very supportive till date. I have never felt isolated with them around. They are as good as family.

What was the hardest part of the treatment? What kept you going? How has this changed your life perspectives and ambitions?

The hardest part was not being able to work anymore. It's made me introspect a lot and I have learnt to be more accepting and giving.

The love of my family and friends kept me going. I also listen to music a lot and love to sing. I am a member of a Karaoke group in my building. I also enjoy reading and spending time with my pet dog who is the best stress buster. My sons although grown up, still keep me relatively busy.

Update on 7/11/2022

It is with deep regret that we inform our readers, that Gopa passed away this morning. We will always be grateful to her for sharing her experience which will continue to be useful to so many others dealing with a similar situation. 

 

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