It was a big deal for me to not feel like myself. I just wanted to rest all the time. I'm like this is not who I am. My name is Duffy, I live in Baltimore, Maryland. I'm married to the man of my dreams for 40 years.
I have run 4 half marathons. I work out every day that I possibly can. And I've had a very active life that has been wonderful. In November of 2017, I was not feeling normal, so I saw my internist and that was when she started a series of blood tests and called me that night and said, "Duffy something is seriously wrong."
After that there were a series of more visits to the doctor and more blood tests over and over again. I also was diagnosed 5 months later with something called Cold Agglutinin Disease which none of the doctors in Maryland had ever heard of. That was the scariest part.
I was breathless walking up a flight of stairs. I didn't want to walk outside anymore because I thought, you know something is clearly wrong. And was just devastated that I no longer had the energy to do what I loved the most.
My daughter got engaged. The most exciting city that we were going to was Luca, Italy where she and her husband have this adventurous dream to get married and travel the world. The checklist and the translations of putting together a wedding in Italy were daunting to me and then I get this diagnosis. I'm thinking, "Am I going to be well enough to travel to Italy? What if something happens over there and nobody knows what this disease is or how to treat it? What's it going to be like?" But I'm very grateful that we walked her down the aisle. It was so wonderful. We were there, but I was not feeling well.
I was still cold and breathless although it was in May and the weather was fairly warm. We came back and my husband and I said, "We probably need to listen to what the doctor said, which is move to a warmer climate." We took to the internet, my husband and I, and researched over and over and over and over again what might work for people with Cold Agglutinin Disease. And that's where we learned about ENJAYMO. I was just really reluctant. I was afraid to start anything new. I just, I was afraid. I can't put it any other way. You know, I've never had to go through a health crisis and I felt like I was in crisis. I had a husband and a daughter who consistently kept saying, "Consider it, Mom what have you got to lose?" I had read the description of all of the side effects before I started taking ENJAYMO and that was a turning point for me. Where I said, "Okay, let's give it a try."
I found a wonderful doctor who really really understood Cold Agglutinin Disease like nobody else, I got the 5 vaccinations that were required beforehand and I said, "Let's just roll." And I've never looked back since. Not once.
So I had my first infusion, I'll never forget it. It was like one of the greatest moments of my life. I'd chosen to make a decision and that was really big. Just making a decision. I came back and they were measuring my hemoglobin and it went from what I called the crazy 8s, and now after being on ENJAYMO, my hemoglobin is consistently at 14. Once I started ENJAYMO, it all started to come back, and it came back with a vegeance in many ways. So I'm really very grateful that that has happened. I feel amazing. I'm able to do just about anything I want to do. I do take staying warm very seriously because my fingers, my nose, and sometimes my toes turn bluish-purple. That is from the Cold Agglutinin Disease, it's not from the ENJAYMO. I could walk up 13 steps without being out of air. It was wonderful. We travel a lot and I have been able to manage this every 2-week cycle of getting my infusions. I thought that was huge obstacle, but once you control it and manage it, it worked. I was going to a hospital to get my infusions initially, and now, if you can believe this, this past June, I started getting home infusions.
There are so many things that I have learned. First of all, you have to be an advocate for yourself in the health system. Even having, I mean, I saw 4 doctors and 5 months later got a diagnosis. The second thing I'd say is you have to surround yourself with family and friends. That's made all the difference in the world for me, is having people to support you during a health crisis. You have to have people that are by your side and I'm so grateful that I have both family, friends and you know, my doctor has just been incredible to have the support.
So I've talked a lot about my experience, but honestly, it's my experience and yours may be different. And I would encourage anybody to start with talking to your doctor and find the right doctor that knows about CAD and be sure and advocate for yourself.
