Help Michelle Overcome Takayasu Disease

My mother Michelle was diagnosed with Takayasu Disease, a chronic autoimmune disease also known as the “pulseless disease”, in April 2018.

On April 22nd, 2018, I got a call from my Aunt that my mother was being rushed to the hospital for a heart attack. After being rushed to South Shore Hospital, she suffered a type 2 heart attack. The doctors told us she had very blocked arteries and would need surgery to put stents in to help her blood flow, but they wanted to send her into Boston for the surgery. She was then sent to Beth Israel Deaconess Hospital.

At Beth Israel, the doctors tried the surgery; as her arteries were so blocked, they had no luck. They ran more tests trying to figure out what the next step was. That was when she got her diagnosis: Takayasu Disease. We have never heard of this condition, and the doctors told us it is a super rare autoimmune disease that typically runs in woman of Asian descent. Even in that demographic, it is very rare to get this diagnosis.

Takayasu Disease has had minimal research done on it because it is so rare. This disease attacks and chronically causes inflammation to the large blood vessels that help distribute blood from the heart, consequently attacking the whole body in different ways. Without blood flowing freely, my mom now has limited blood flow to the right side of her brain. Because of this, she can no longer perform tasks such as walking to her mailbox and back due to lack of blood flow to her legs. Because of this, she has been getting blood transfusions in Boston since she was diagnosed, at first every six weeks but now every four.

The lack of research and knowledge about Takayasu Disease makes my mom almost like a lab rat. In order to help figure out how to best treat her, my mother has undergone chemotherapy, radiation, dialysis and MRIs very often to monitor her brain’s blood flow. She has also undergone multiple different surgeries to try to find a way to help relieve her pain and aid her blood flow. She is on a myriad of different types of pills daily.

Most recently, this past June 2021, my mother had open heart surgery to insert artificial arteries where the surgeons were able to. That seemed successful, and we thought she would just need some recovery time. But within two weeks after her open heart surgery, my mother expressed that she kept feeling weird clicking in her chest. Then, we discovered she had an infection in her surgery wound on her chest due to the infusions she needs to continue to have, and that the breast plate in her chest wasn’t screwed all the way down after surgery.

My mother was taken back to the hospital, and they opened her back up to flush out the infection and screw in the breast plate properly. Now, she also has a vacuum in her open wound, and has to have a travel nurse come by three days a week to empty and clean the wound. She also has a “picc line”, which is a catheter that leads to the heart, through which she has to inject herself with antibiotics three times a day to fight her infection.

Now, my mother won’t be going back to work for much longer than we originally planned. Before her June surgery, my mother worked three jobs despite her sickness. She worked at Rockland High School in the nursing department and at two elderly homes including one for people with dementia. She has always been that shoulder to lean on when anyone needed anything, be it someone to listen, food, a place to spend the night or a few weeks or help for anyone that needed it.