Myelodysplastic Syndrome (MDS): Trupti’s Story
Trupti Mehta
San Jose, California
Myelodysplastic Syndrome
Transplanted in 2015 and 2021
Many thanks to the American Society for Transplantation and Cellular Therapy for helping us share Trupti’s story.
Can you describe some of the sources of strength in your life before illness?
I come from a very close-knit family – three girls and one boy – all brought up in Mumbai. After I became a parent
myself, I especially appreciated what my parents did with us. I’m really proud that they were my parents. And they brought my siblings and I very close to each other. When I first got sick, I turned to my siblings and their spouses for advice and for help, and eventually two of my siblings became my donors. Even though we all live in different places, our bond stays strong.
A strong family foundation is a true gift. How did you foster that in your own family?
I made my family in America. After getting married I spent twenty years designing embedded software, as an engineer. When the project I was working on was cancelled in 2004, I decided to spend more time with my kids.
Working with young kids really makes me happy. I was deeply involved in various projects including writing a newsletter for the school; running math enrichment programs in our local schools; and starting a science fair that ran for ten years!
I also got into Lego robotics with my son, and the whole family got hooked. When my daughter entered 4th grade, she said, “Ok, who is going to coach my Lego robotics team.” I said, “I will,” and we formed an excellent six girl team. By 8th grade, her team qualified for the top tournament at Legoland.
Thankfully, by the time I was diagnosed, my children were a bit older. My son was 20 and my daughter was 15, and they were old enough to be supportive. Still, it was tough when I had to explain to my kids what I was going through and why.
Can you describe what it was like to receive a diagnosis of myelodysplastic syndrome?
At first, I had rheumatoid arthritis. At some point, my doctor told me to go for a blood test, and it showed low numbers. We just assumed it was from the arthritis meds, but my doctor sent me to see a hematologist. That hematologist was very accommodating, responding right away, even though this was holiday time. He did a bone marrow biopsy right in the office.
For three days, I didn’t hear anything and then, on Dec 31st, 2014, I went to my follow up with my husband. We didn’t expect any bad news, but the doctor came in, looked at me, looked at the biopsy results and looked at me again. He said, “I’m so sorry, but there was a misunderstanding and we should have called you earlier. You have myelodysplastic syndrome (MDS)."
The doctor explained that BMT was the only curative treatment, the only path to recovery. I didn’t expect this, it was a total shock. After hearing my diagnosis, I remember getting back into the car with my husband and we just sat there. This was New Year’s Eve and my husband and I had a party to go to that night. My husband said, “Do you want to go home?” And I said, “No, no. I want to be around my friends.”
Eventually I came to love and respect my transplant doctor – I went back to him for the second transplant – but he’s very particular about giving information. He gave us realistic survival statistics that I was not ready to hear. I tried questioning him, but he didn’t budge from the truth of those numbers. It was hard to hear but my attitude was, “Don’t sugar coat it.” After my recovery, I told him it was shocking to hear but I respected it. I came to trust him to always be up front with me and answer all my questions.
The day after I heard the diagnosis, I called my brother and sister in Mumbai. They said, "Ok, we will get HLA typing done immediately. Both got HLA typing within a matter of days, as did my older sister in New York. I was so touched by their support. Ultimately, my older sister was my donor for my first transplant, and my brother was my donor for my second transplant.
I knew getting through transplant would be a fight that required tremendous strength. I realized I would have to give up some activities, like volunteer teaching AP Computer Science in our local high school. At first, I didn’t know whether I would rise to the fight or not. But a year previous to this, one of my close friends had passed away leaving a daughter who was in her early teens, about the same age as my daughter. Seeing my friend’s daughter alone during that crucial time made me know: I will be fighting this! I will do whatever I need to do!
What did it take to get through transplant, not just once, but twice?
For one, I had to learn to ask for help and accept help– from my husband, my friends and my family. Usually I like to do things my own way, but when I felt bad during transplant, my husband would step in. I had both my transplants at Stanford, and I came to know the staff there very well. But at the first meeting, I was face to face with this doctor I
knew nothing about, while already feeling the effects of the disease, and so I asked my husband to take control. I said, “I can’t manage this on my own.” My husband took good care of me.
For a person like me, a schedule is also very important. I realized that if I had a routine, I would think less of the disease and suffering and be more upbeat. At 7:45, I’d wake up to my alarm. At 8:00, I’d have breakfast and talk to my siblings in Mumbai. Then I’d take a walk outside and shower, to be ready for the doctors. They would arrive to find me up and showered and smiling.
My first transplant was tougher, and I knew less of what to expect. My older sister and donor worked with me to collect everything that would help me feel better, like puzzles, music, books, etc., to bring to the hospital with me. That helped, but things still got hard. Following chemotherapy, I experienced debilitating mucositis. My throat was so severely inflamed that I couldn't even swallow my own saliva, and every attempt to eat or drink resulted in excruciating pain.
Before my second transplant, I asked my team for any way to avoid a repeat of that experience. They informed me that keeping ice in my mouth during the main chemo IV would significantly reduce the mucositis, and it worked. Still, my second transplant was extra hard because I knew what to expect and was not looking forward to it.
After my first transplant, my sister from Mumbai came and stayed with us for three weeks and got me going with yoga. And we’d also do jigsaw puzzles, including 3,000 piece puzzles! These simple things helped me through the hard times and brought us closer. All four of us siblings are there for each other if there’s something that needs to be addressed — if we see something, we say something.
During my second transplant, my kids supported me so much. They were older by then, and it was also COVID times, so my son and husband had to come on alternate days. They brought me Lego sets to work on, then my son and I would build the sets, while my daughter worked on other sets over Zoom. When my husband came, he brought our favorite shows that he’d recorded for me, and we’d have that time together. And in the evening, it was Zoom calls with friends.
You’ve described all the external support you received so beautifully. Were there also ways you adapted internally while going through transplant?
I've developed a deep appreciation for the calming power of nature, and I actively seek joy through humor and music. One thing I discovered is that if I use humor to approach things that make me sad or worried, it helps me cope. For instance, I’ll give something frustrating, a funny name to make it more manageable.
I've also cultivated greater patience and a more profound sense of empathy. I love walking and my balance is still not great. When I first started walking again, I had to stop every two to three minutes, and my friends were so patient with me. One of the trails that we walk is two miles long and I would stop so many times. But gradually my stops decreased and then one day I walked the whole thing without stopping – it felt so good! My husband too shows me patience: when we hike, he walks behind me to be sure everything is fine with me.
Ultimately, receiving a second chance at life has pushed me to pursue my passions now, rather than postponing them.
After going through transplant not once but twice, who are the medical staff members you’ll remember most powerfully?
For me there have been so many of them, at every point along the way. One incredibly touching moment was the send-off I received after my second transplant. The hospital staff played music and made me dance before getting in my wheelchair. They said, “You have to dance before we let you sit in that chair, and after that we don’t ever want to see you here again!” It was a very fond farewell, and far more moving than a standard hospital discharge.
In addition to the medical team, the NMDP helped us hugely… For the second transplant my brother was in Mumbai, and it was COVID time and NMDP worked with us to manage bringing my brother here for his donation. We did what we could, but they organized all the things we couldn't arrange. They were extraordinary!
The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.