My Journey To Iron Chelation
that was helping me maintain my Hb and reduce sickle pain episodes) and continue blood transfusions to maintain Hb above 8. I had to do blood transfusions every 2wks. Eelaan was
delivered at 36wks; by that time I had more than 13 transfusions done. Also I had multiple episodes of sickle crisis post pregnancy that required me to go for more transfusions. By 2012, I was admitted in ICU in Bangalore 3 times and had lost count of the number of blood transfusions I had done.
I give a lot of commendation to my parents for teaching me how to be observant of my body changes. Because of them, I am always on self-diagnosis mode. But all these years I have been learning and experimenting on ways to avoid sickle complications with all I knew and have experienced. I had already lost my spleen, and was diagnosed with avascular necrosis. I was being very careful to avoid infections and putting stress on my right hip to slow down the
progression of AVN. When I realised my serum ferritin level was rocket high during the severe crisis I went through in 2012, I had a lot of questions that were answered by the docs but not once iron chelation was a part of the discussion.
After recovering from my crisis, I was determined to volunteer with Maldivian Thalassaemia Society to raise awareness on sickle cell and thalassaemia. This decision, I believe was my gateway to heal.
Many times we are made to believe that thalassaemia is a disease of the young and they do not pass the age to become adolescents. Here I met extraordinary #thalwarriors who welcomed me into their thal family. Most importantly, I am so grateful for all the things I learnt about thalassaemia from them. I learnt that I needed to be checked for iron overload after 20 or so red blood cell transfusions and that accumulation of iron in the organs can lead to its function failure and eventually my death. The seriousness of iron overload complications cannot be physically seen until it was too late. But at that time, I had put my best effort to live healthy, exercise daily and eat properly. Surprisingly my serum ferritin was slowly dropping. And I didn’t 8 any blood transfusions. It amazed some of the doctors that I had discussed it with, that without chelation my ferritin was slowly coming down. I was told to keep them in loop of the updates. I believed my body was removing the iron from my body by itself.
Last year, I was having some upper abdominal discomfort. Went to a crisis due to an infection. My #thalfriends convinced me to do a t2* MRI, a scan that can measure the iron concentration in the organs. Alhamdhullilah my heart was clear but measured my liver iron concentration to be severe. Since then there has been lots of discussion to decide on what iron chelator would be best for me, and yet we never came to a conclusion as all of them had serious side effects. I have excused myself for a year to choose the best therapy, weighing at the end of all the cons than the pros.
3wks back, I had a wake up call. My upper tummy hurts; friends and acquaintances thought I am pregnant again. No, I was not pregnant, but my liver is enlarged, and my liver profile was no longer normal. I realized I might be in risk of permanent liver damage. If I keep waiting and denying the fact that it was possible to happen to me, I might be too late. 3 days ago, for the first time in my life I started my first iron chelation therapy. Desferal. I am determined to save my liver, my life. I have come too far achieving all my dreams to loose everything.
Today I am on a mission. #missionironcontrol with my #thalwarriors who have inspired me and motivated me to become a better person. I have found a new respect to those warriors living with thalasaemia major and complying with iron
chelation especially through daily desferal. Insha Allah, I am determined enough not to stop until all the extra iron is out of my system and practice healthy living to avoid further transfusions and be healthy for my babies, loved ones, families, friends and stand strong for others like me. I begin my iron chelation journey thanking everyone for making me a stronger #sicklecellwarrior!!
Bismillah! May Allah give me the strength to carry on!
