Vibha Gupta, 49 originally from Delhi and now in Chicago, USA, lives with multiple chronic illnesses like Sjogren's and heart failure. She shares her journey of learning about her illness, the lifestyle changes that help her cope and why she thinks being proactive is important.
Please tell us about your conditions and when you were diagnosed.
I have Heart Failure, Sjogren’s, Raynaud’s and recently Idiopathic Pulmonary Arterial Hypertension (PAH).
I was diagnosed in:
2010 - Raynaud’s
2013 – Postpartum Cardiomyopathy and Sjogren’s
2019 – PAH
How did it all start?
After the birth of my second child, I was still in hospital when I started getting breathing trouble. I went through tests and was diagnosed with Post-partum Cardiomyopathy and spent 11 days away from my new born and family in the Cardiac ward. We were alone in the US then, just my husband and older daughter.
I could not even feed breast milk to my child due to the medications and had to throw away my pumped milk. After discharge, I noticed patches on my breast and initially thought they were from use of the breast pump. However, when the patches appeared on my legs and abdomen, I got it checked by a Dermatologist. A skin biopsy was done but nothing was found. A 2nd skin biopsy was also inconclusive. Then I went to a Rheumatologist who did a lip biopsy and the SS-A blood test. The lip biopsy (a key diagnostic test) surprisingly was negative but the antibodies were elevated. During the process doctors found dry patchy skin all over body, my eyes were very dry (got punctual plug and some expensive eye drops). All this led to the diagnosis of Sjogren’s Syndrome. At the time, tests for Lupus and Scleroderma were also done but were negative.
I started with Hydroxychloroquine as my first drug. This had a very severe reaction for my GI tract – I got chronic diarrhea, acidity and heartburn. I could not leave home. Had accidents that were not in my control and were an embarrassment. Due to the pregnancy, I had an umbilical hernia, so had to undergo surgery to repair that.
My dryness of eyes, joint pain and dry skin kept aggravating over the next 2-3 years. Doctors switched me to Methotrexate, which helped, but with worsening of chronic diarrhea, dizziness and headache. I was switched to injectables of Methotrexate. On suggestion of a rheumatologist, I stopped all meds for almost a year as my symptoms had subsided.
Then suddenly in 2019, when I was on a trip with my family to the Mammoth caves, I went down into the caves but then could not climb back up. My shortness of breath was back and I just could not lift my feet. It took me 2 hours and a lot of support to get back up. That incident aggravated a lot of issues and I ended up in the Emergency Room 3-5 times the following week. The last ER trip put me in the ICU where I was diagnosed with PAH. I was put on an IV medicine (Treprostinil and Macitentan), a strong dose which helped bring down my BP, ease the breathing and clear my Sjogren skin issues. Doctors believe that not closely monitoring during that gap year may have led to PAH. I read a few studies, which showed a connection between Sjogren’s and PAH, but was not clearly defined.
My husband works in the Industry so he put me in cue for a Mayo Clinic appointment for case review and alternative opinion. A battery of tests was done and Scleroderma was suspected but non-conclusive. I was switched to Azathioprine.
In the meantime, I continue changing doctors and visiting new hospitals with no relief. Finally, we found a great doctor who would listen to me with intent. She suggested alternatives to treat my symptoms and also bought my disease in check.
What was your reaction to the diagnosis? How and when did you break it to your family?
I was shocked, grieved and surprised. I haven’t ever heard the name of the syndrome. The concept of playing the “sick role” and “illness behavior” were alien and offensive to me because I have always been a care provider for my family. I hated the idea of being dependent.
Google did not help with the prognosis and issues faced by the patients.
In addition, there is the emotional cost of long-term treatment and medical surveillance to consider. My hubby, being from the industry was very involved and knew from get go that it was complicated. He would go with me to all the doctor visits and research on best specialist for consults.
I told my extended family about my condition after a year during my trip to India. It was difficult to hide my low energy and limiting activities.
Were there any complications from the primary condition?
- Cold hands and feet; being in Chicago that is not easy. Raynaud's is usually triggered by cold temperatures, anxiety or stress. The condition occurs because the blood vessels go into a temporary spasm, which blocks the flow of blood.
- Dry eyes are the most severe for me and I struggle with it daily. I use drops and gels 7-8 times a day.
- Dry mouth, mouth sores, dental decay, difficulty with chewing, speech, and taste continued along with difficulty swallowing, heartburn, and reflux. I also have fatigue, dry skin, and skin sensitivity to UV light.
- Brain Fog which has been occurring for a while but I have started noticing it more. For instance, I went for a movie with my family recently and after coming out of the theatre, cannot recollect the story. I remember sitting in the hall, talking to my daughter about it but nothing else. Doctors think it is a spell of dizziness while my husband thinks it’s a factor of age.
- Chronic pain, heart muscle weakness, shortness of breath, dizziness, ear ringing etc.
- As a systemic disease affecting the entire body, symptoms remain steady or worsen overtime. There is no one single progression of the disease and this makes it challenging for me.
Have you tried complementary medicine or therapies, like homeopathy or ayurveda? If yes, did it help?
For my symptoms and side-effects, I tried various complementary treatments off and on.
- Homeopathy - Gastrobin for stomach issues to curb the side effects of medicine.
- Ayurveda – various creams, massages, massage oil and hemp cream.
- Hemp and CBD oil for pain and relief (once it became legally available)– this did not help.
- Naturopathy but it barely provided temporary relief.
- Relaxation, meditation, visualization, acupuncture, aromatherapy, reflexology, music therapy, art therapy, Infrared sauna, color therapy, stretch zone, physical therapy, and massage. I love my massages and have lots of massagers now at home.
What medications are currently on?
- Treprostinil and Macitentan for my PAH
- Azathioprine (immunosuppressant) for Sjogren’s
- Budesonide/formoterol for my breathing
- Albuterol for shortness of breath
- Rosuvastatin for cholesterol
- Pantoprazole for acidity
- Vitamin D and B12
- Eye Gel for lubricating the eyes
- Mouthwash for dry mouth
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
Pulmonary Hypertension specialist and Rheumatologist once every 6 months and more often if needed. I get involved with studies from doctor’s office or otherwise. I do Pulmonary rehab and a yoga class online.
Do you have a family history of this condition? Is it an inherited disorder? Was genetic testing done?
I have a history of heart issues and diabetes in my gene pool but autoimmune disorders and PAH are unique to me!
What changes have you made to your lifestyles because of this condition?
Personal changes:
- Slowed down, do as much as I can.
- Become less social, have short outings once in a while or else I get exhausted.
- Make my new healthy habits a priority.
- Try to do physical activity whenever and wherever I can like taking the stairs or getting off the bus a stop early if it is safe to do so.
- Set aside one day a week, for grocery shopping and make healthy meals that I can freeze and eat later when I don't have time to cook. Food-wise, I have limitations on salt and water intake.
- We take no rash vacations or staycations. When I visit India, we take slow easy outings.
Home changes:
- Installed railing on both sides in all stairways.
- Converted a room into a bedroom on the ground level on days when I can’t go up. Put in an adjustable bed.
- Use wedge pillow on my regular bed to raise my upper body.
- Use a Roti Matic to make rotis.
- Electric knife as I cannot put pressure on my hands.
- Placed 2 stools at both ends of my kitchen since I cannot stand for more than 5 mins.
- Under my desk, have a foot rest so I don’t leave my feet hanging.
- Rods in shower and near commode
- Handy stools to sit and open low drawers/cabinets to avoid dizziness.
How did you mentally/emotionally cope with it all? Pls mention any specific times and issues that were difficult.
I don’t get offended or irritated if I cannot do something. To me maintaining social connections is critical! Taking time to share the feelings and to listen and support others goes a long way. Talking with others who have our best interests at heart makes me feel safe. This is not always possible. There have been days when I could not get out of bed. My doctor once told me that “there will be good days and bad days but good days does not mean that the illness has disappeared.” This is more disappointing and disheartening than anything else.
How has your family and friends supported you?
My family especially husband has been a great support. My sister-in-law stayed with me post-delivery for 2 months to take care of my newborn and home. Kids are now grown up and willing to always help.
My daughter(17) has taken up several responsibilities of household- laundry, putting away dishes and grocery. She has been such a sport; always willing to help! My son(10) helps me with my pain, massages my leg, pulls my hair, puts away top shelf dishes, brings stuff from car. He is more aware of his surroundings than his kids of his age. He doesn’t force specific activities; if he sees me down or under the weather. He is always open to alternative plans.
Among the extended family, some folks know now others don’t. It is not public information.
The family and friends that I spend significant time with are aware, and ensure my health needs are addressed. Every time I come from hospital, few friends come over to get things at home in order – a very nice gesture. I’m offered lot of home cooked yummy food.
Did you inform your workplace? If yes, how did they handle it?
HIPPA laws (is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient's consent or knowledge) limits the communication to workplace. This has been informed as appropriate. Most of the colleagues that are physically close are aware to the extent and make accommodations.
What is your present condition? What were some of the challenges you continue to face?
The main symptoms are dry eyes and mouth, but other parts of the body were affected as well including dry scaly skin. The end of the day fatigue with joint and muscle pain continues. In addition, the brain fog and my non availability in social events or challenge to sit for long was painful. Absence due to doctor visits was a lot and affected my natural career progression as well. The diagnosis of PAH limited further physical activity and engagement. Recently, I have developed cataracts which will need surgery soon. Medication adjustment to calm the flare ups and day-to-day life challenges continue.
What is your advice to patients who face similar challenges?
Living with a chronic illness can be challenging and stressful, but there are steps you can take to manage your condition and maintain a good quality of life. These steps include eating a healthy diet, getting physical activity, avoiding negative coping mechanisms, exploring stress-relief activities, and letting go of unnecessary obligations.
It's important to learn as much as you can about your illness and treatment needs, and to be proactive about following your treatment plan and leading a healthy lifestyle.
Coping with a chronic illness can increase stress and affect your well-being, and it's important to address any feelings of depression or anxiety with a healthcare provider who may refer you for counseling, talk therapy, or medication. There are also many activities that can help with coping, such as going for a walk, reading a book, practicing yoga or meditation, taking an art class, or spending time with friends.
Learning to live and love with a persistent illness is an art.
What are you worried about for the future?
I can’t predict the future and I am not worried about what may happen, not what will happen. Fear of being bedridden is most scary. Worry itself serves no purpose unless it spurs a plan of action. Know yourself, people around you and live fullest. All of us have an expiry date, we are more challenged than others. Acknowledge your feelings, give yourself time to process, practice self-care, mindfulness, accept you can’t change future. Live the moment – enjoy when you can.
