Houston, Texas (United States)
Scleroderma Stories Issue 4
Please introduce yourself
My name is Elesha Velasco, and I live in Houston, Texas with my 11-year old son, parents, and sister.
Since my scleroderma diagnosis in 2015, I’ve had a double lung transplant, and been diagnosed with lupus. But, I still love doing anything fun whenever I can. I love to cook, bake, meet my friends, and watch movies!
What were your earliest symptoms?
It was at the beginning of the school year in 2009, and while teaching class, I noticed I would get sick a lot. After my son’s birth in 2011, I thought it was okay. I was trying to prioritize my family at the time, so I wasn’t really taking care of myself. My hand would also get stiff and blue during class, but I just thought I was getting older.
But, I started to lose a lot of weight – like 5 pounds a week. I realized it wasn’t normal.
Fast forward to August 2015, when I went to go to the beach with my family, I noticed how skinny I was when my ex-husband took a picture of me. I decided to go to the hospital, because I knew something wasn’t right. Later, the rheumatologist told me that I had to go to a specialist, because I might have scleroderma. When I went in, they confirmed that I had scleroderma. After some tests, they found out that I had scleroderma overlapping with lupus as well. In October 2015, after my diagnosis, I had to quit my job.
Did you know what scleroderma was?
To be honest with you, after my diagnosis, I googled what scleroderma is, and I was shocked. On Google, I saw that I may not be alive after two or three years, and it scared me a lot. But, my friend asked me, “Why don’t you look up people on Facebook?”
I didn’t think there were many people who had it, but when I went on Facebook, I found a scleroderma community with people who had overlapping communities like me, and that helped for sure.
What was the double lung transplant like?
With scleroderma, my lung capacity dropped to about 20%. The doctor kept pushing me to get the transplant, and I was so stubborn because I thought it was way too much. But, the doctor said “You either die or get this transplant.” So, I decided to get a double lung transplant on November 4, 2020. There was a lot of intense evaluation, testing, and bloodwork for me to be chosen as a good fit for the transplant itself – a 21 day process.
At first, I got declined at Baylor because I wasn’t fit enough – unless I got a feeding tube for the rest of my life. Four months later, my lungs got worse. I was on oxygen 24/7. I wasn’t able to do what I liked to do, like being with my family. I was depressed, and I physically looked like a skeleton from head to toe. At that time, I was thinking about the transplant, and I decided to have my double lung transplant at Memorial Hermann Hospital, by Dr. Joyuthala.
What was your support system like during this time?
My parents, sister, son, and ex-husband were super helpful. After my surgery, I was freaking out, and they were trying to hold me down. I wasn’t in the right state of mind. I was taking 28 pills, twice a day, and my brain was not functioning completely because I was going through a lot.
Mostly, my family helped me a lot with my son, school, and everything, because I couldn’t do anything for the first three months after my lung transplant.
How has scleroderma has affected your lifestyle?
The only downsides of having a lung transplant is that there’s a limit to doing whatever you could do. I used to love to swim, but I can’t go swimming in public because you don’t know where the water is coming from. Not only that, I used to love drinking wine as well, but I had to give it up. To me, it’s okay and I felt differently. I used to love riding rollercoasters. I have to be careful what I put in my system.
What symptoms are the hardest for you to deal with?
I’m going to be honest with you, it’s my hands. Before my lung transplant, my hands would be like a claw, and I couldn’t straighten them up. I’m hard of hearing, and when all your friends are deaf as well, it’s difficult to communicate and sign. That’s something that’s really meaningful for me. So, after my lung transplant, anything that includes my ability to use my hands was a gift for me.
How have you adapted hobbies?
Every time I go to the movies with my friends, I have to bring my jacket with me because I always get cold. But, my friends know what I go through – that I don’t look sick, but that my body is sick inside. So, they help me out a lot.
My hobby used to be to wear makeup, but I’m tired now. Before the lung transplant, I wouldn’t wear makeup at all. Even though I’m not completely back to this hobby, the lung transplant allowed me to come back to my interests as well.
What is your self confidence like with scleroderma?
At first, when they told me I had to be on oxygen and wear the nodule, I hated it. It made me feel weaker and weaker. Plus, they put me in a wheelchair, and going places made me super tired.
Honestly, it took me about a month for me to realize “This is my life, I guess I’ll have to adapt to it.” With the oxygen, I didn’t want to go anywhere carrying around the extra things.
For example, when I went to Japan with my family, there wasn’t a lot of accommodation for me, because they were not used to this kind of issue. I had to carry the oxygen tank up flights of stairs. People would look at me and wonder “She looks normal, but why does she have oxygen?” I was getting a lot of stares on the streets. After I came back from Japan, I didn’t want to go anywhere, and it really affected me.
What are your “tips and tricks” for people with scleroderma?
There’s a long stick that people use to put their shoes on – get the longest one so you don’t have to bend over when wearing your shoes. Also, use the rubber mats or gloves you normally use in the kitchen to open jars. It takes less effort.
Have you found any scleroderma communities?
What’s your advice for people with scleroderma?
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