Leila Madeiros

Patient

 

It was a normal working day for me in November 2012, filled with meetings here in Bermuda. I had just turned 51 years old and I worked for a professional trade association representing reinsurance companies here in Bermuda. As the day progressed I began to feel unwell along the lines of flu symptoms so by mid-afternoon I excused myself from work hoping that a few hours rest would do the trick. That was a Wednesday but by Friday, I was feeling much worse. So much so, that I called my mom to come and stay with me at the house. I kind of knew something was wrong but just thought that this ‘flu’ bug was an exceptionally strong one. I am a single parent mom with two lovely children who were 16 and 12 years old at the time. That evening I awoke with a terrible headache, light headedness and just feeling so unwell that I could not sleep. I got up in the early evening and went to the bathroom. That’s when I noticed I was bleeding. I called my dad to come and take me to the hospital because at that point I wasn’t sure if I would be able to explain on a 911 call where I lived. He promptly arrived within 20 minutes so I left the house with the kids’ still fast asleep, with no idea what was going on.

Upon arrival at the local hospital, the team of doctors were puzzled at my blood results which showed that my platelets were only at 4000 (normal range 150,000 to 450,000). They decided to repeat the blood tests to make sure there wasn’t some kind of error. The results were the same, so they got in touch immediately with the Lahey Clinic in Burlington, Massachusetts to get their opinion. The long and short of it was that I was given a piece of paper with a possible diagnosis of “TTP” written down and told I would have to be flown by air ambulance, off island to Lahey Clinic later that day. I had no idea what TTP was as I had never heard of it! I began infusions of Fresh Frozen Plasma (FFP) and high doses of prednisone whilst I waited for the plane to arrive. Finally, that evening I was flown to Lahey where upon arrival I was placed into ICU and a catheter was inserted in my neck. By 8:00 a.m. the next morning plasmapheresis had begun.

It was a scary time for my kids and family; having mom whisked away hundreds of miles not knowing what the outcome would be. I was fortunate that my twin sister was able to accompany me and I owe her a great deal for the love and support she showered me with. I was in the U.S. for about six weeks in total. In the first instance, I responded really well to plasmapheresis and my platelet count went right up. After about nine treatments the doctors stopped and we waited three days to see what would happen. Unfortunately, the platelets fell so I had to begin plasmapheresis all over again.

I became anxious because I had been away from my family for some time and we were getting near to Christmas. My younger sister and niece took turns with my twin, to make sure there was always someone with me in the U.S. So many people helped with taking care of the children, cooking meals for them, running them back and forth to school, etc. The generosity of people in this way helped me to get through this battle with TTP and I am eternally grateful to the doctors and staff at Lahey, my family, friends and work colleagues. I feel extremely blessed and know that my faith in God helped me to get through this scary experience.

I have had two relapses since 2012, one a year later and the second, last summer, 2015. I received plasmapheresis followed by treatment with Rituximab which meant I was away from home for about 6 weeks each time.

Living with TTP has often caused me to be anxious. I understand that there is no cure and that we don’t know what brings on a relapse (although with my case we believe it has something to do with the reduction in the ADAMS-TS13 levels). It would be great if we could have a menu of options of what we could do to avoid the ‘next time’.

I am learning to enjoy each day and make the most of time with family and friends. The greatest gift TTP has given me is the gift of perspective – what really matters.

I still work full time, travel for business and maintain a busy schedule with my two children. This helps to fill the days with ‘life’ so that I can set aside my fears. I enjoy cycling, walking my two dogs and hanging out on our beautiful beaches and of course my kids.

Life can certainly throw you some curve balls; but I feel grateful for the second chances and for the amazing people I have met along my TTP journey.

 

 

 

Are you interested in submitting your story to support other patients and raise awareness for TTP? For more information on submitting your story click here.

Please get involved today.