I got to know Arlene Dsouza, 29, through my Instagram. She sent me a message sharing with me how she was struggling with now being on oxygen 24/7. It has been an amazing thing to see how far she has come. She stood up and keep fighting. She didn’t let being on oxygen take away her spirit. She found a way to overcome it. I’m so so excited to share Arlene’s story with you. She is such an inspiration to me and I hope her story inspires you.
Q: How long have you been on oxygen?
A: I have been on oxygen only for the nights since 2014, however I was recently asked to be on oxygen for 20-22 hours a day.
Q: What is your story?How were you diagnosed and what was the diagnosis?
A: My journey with this health issue started 9 years back around 2008. I used to wake up in the middle of the night coughing and gasping for breath. My mom used to wake up, give me hot water, and rub my back until I felt better. Then a series of visits to local doctors followed with certain scans, X-rays, etc., and medications gave me some relief, but within a few days I was back to where I was before.
In the year 2010, as my health deteriorated I visited a chest physician who, by looking at my symptoms, said that it’s best to do a lung biopsy and figure out the cause. The reports then concluded that I had chronic hypersensitivity pneumonitis/ Interstitial lung disease (mainly due to dust, pigeon droppings etc)
I was put on heavy steroids and other medication. Gradually medication was lowered and I started to feel better. However I guess my bad, I got a relapse. There I was again in the hospital back to the same situation, with heavy doses of steroids and yet another series of scans and tests every day in the hospital and recovered within a few weeks.
But in the year 2014, again I experienced a drop in the CO2 levels while doing certain physical activities so after a followup with the doctor it was concluded that i required oxygen support in the nights so that my days wouldn’t be strenuous. However lately in the past months I had experienced a severe restriction in my physical activity. So now I have to be with the O2 machine, always, while I’m on the move so that I can move freely and be independent.
Q: What helped you get through the first few days of being on oxygen?
A: Initially in the year 2010 when I was first told that an open lung biopsy would be done to diagnose the issue, I was all shattered just by thinking that a surgeon would cut through my lungs and get out a small piece of tissue, and then they would test it. I was all heart broken and cried out why … why is God being so harsh on me??? However with heavy doses of steroids, I started to feel better but after a few years, when it relapsed, I was told to be on oxygen only for the nights so that I could be better in the daytime. The first thought that struck to me was “WHY ME LORD? DON’T I HAVE THE RIGHT TO BREATHE FREELY?”, but I still thought it must be a temporary phase and maybe I will be off it sometime. However, lately, when all my CT Scans , PFTs were done I got to know that I have to now be with the oxygen for most of my time since my lung functioning was not as good as before. I was mentally torn, felt depressed, and cried for days. My family and friends supported me the most during these days; then I stumbled upon your post and read through and gathered the courage. Praying also helped me calm down and accept the fact slowly.
Q: Is there something or someone that helps you get through hard days?
A: Firstly, my trust in the Lord that he has some plans for me, and hence I’m here in spite of all the ups and downs. Secondly, my family has been of great support right from the eldest to the youngest ones. All of them support me in some way or the other to help me gather the courage to move on and not worry about anything. The verse i always read when I feel low is Jeremiah 26:11 ” For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.”
Q: How has your life changed since being on oxygen?
A: Life has changed quite a bit initially. Oxygen was only during the nights so I could go around during the day without worrying about taking oxygen concentrator along. Although, I greatly missed going for night outs with friends as it wasn’t easy for me to carry along the oxygen machine and I never had a POC too. Now although, I move about with the portable Inogen, I have to plan things considering POC battery to be charged, carry the charger incase going out for too long, etc. There are certain things I love to do but now have to think twice however I have learned to adapt to these changes.
Q: What is something you hope to accomplish in your life?
A: Here in India, people lack awareness about lung diseases. I hope to spread awareness about this and help people know that they too can live a happy life.
Q: What is a fear or insecurity you have about being on oxygen?
I have to always plan things I do considering the oxygen, which gets at me at times. Like I said earlier there is lots I would love to do, but can’t do as I cannot be as active as before.
Q: What inspires you to keep fighting?
Looking around at people having complications worse than me are living without a fuss, makes me feel that even I can and I will.
Q: What advice would you give to someone who is new to oxygen?
A: My only advice is stay strong and keep praying. Do not loose hope or faith in the Lord, read books, watch movies, listen to music, sleep as much as you like, and forget the world looking at you. It’s just like how people take medicines; we wear our medicines and we need it. I know its difficult initially, but you have accept it and you never know when God will work wonders for you.
Arlene never lost her faith no matter how hard or confusing things were. She held on to her faith in God and the support of her family to help carry her through. Arlene has been through so many battles with her health but she has never stopped fighting. When she found out she was going to be on oxygen 24/7, she knew her life would different. And while she struggled with it, she found the strength inside herself to try and learn to accept life on oxygen. She tells us that it’s ok not to be ok and that we can be mad about it, but we have to find our way back. And Arlene does just that. Arlene shows us that with faith and family, we can overcome anything.