Imagine if you could travel back in time and meet the person you were when you or your loved one were first diagnosed. What advice would you give them? How would you describe to that person how you feel now?
If I could go back in time, I would probably go back to the beginning of my college years when I was about 18. I would tell myself to continue to do my treatments even when I’m healthy, and to just keep working as hard as I could to keep myself healthy and that it would get better because this Trikafta has really changed everything. If I would have been a little better about my treatments when I was younger, I might even be in a better spot than I am today. My lung function might be higher. I think I would tell them that I feel really good now and I can do all the things that I want because at that time, I really didn’t feel like I could because I was a lot sicker.
I was diagnosed at two months old. So if I went back in time and talked to my mom and, I guess, interacted with a younger me, I would let them know that treatments are just going to get better and better for cystic fibrosis. Because in the 1980s, a lot of people weren’t living into adulthood. I would tell them that, in my lifetime, a treatment would come out that is probably the closest to a cure that we’ll get in my lifetime. And so just to kind of give hope and let them know that I got through this. I would just say make treatments a positive experience. I remember that that was something that was hard to be consistent with, as a child. And so just kind of give us some ideas of what to help keep me on track, with those, but I guess that’s it.
If I could travel back in time and meet myself, when I was first diagnosed, I would say to not worry, because so far, I haven’t had many issues with it, and to just focus on keeping yourself healthy. Don’t worry about everybody else and what society says about how long you have, and just say to exercise as much as you can, and just focus on getting on your treatments done, but you don’t really have anything to worry about as of right now. And I describe to myself how I feel good now, and there’s many more advances to look forward to. And I just feel like we’ve definitely made a lot of progress with this.
This is kind of an odd question because I was diagnosed at three months old. When I filled out the precursor for the survey and said, “How old were you?” I put one because zero wouldn’t make sense, but I was actually under one years old. I was three months old when I was diagnosed with cystic fibrosis. I was rejecting my baby formula due to the enzyme in deficiency. After multiple tests and this and that, my parents took me to the hospital and they through process of elimination, did a sweat test for cystic fibrosis that came back positive. Then they found out that they were carriers of the gene, and this is what I had, and this is what it entailed. I don’t honestly remember that, obviously, being three months old, but the early … I’ll go by what the earliest that I can possibly remember was was probably being a toddler, maybe five or six, that when you first start to have your memories. The earliest back I can remember was having treatments, and going to the doctor and having medications. I never knew anything else about that because I was diagnosed so early. It’s not like I had a quote, unquote, “normal childhood” up until 10 and then was diagnosed. I’ve never known anything different than hospitals, medication. You have CF, you have to do this. You can’t do that. That is what it has always been and what I always remember. If I could travel back in time to then, not when I was three months old to diagnose, but if I could travel back to that time when I was young, and realizing this and seeing that other kids in school and family were not like this, and to not have CF, I would just say to myself that I know this seems scary and nobody wants to feel different and it will be hard, but even though it is, how do I word this right? Even though it is a strike against you, don’t look at it as a strike. It’s beyond your control, and it’s something that you can manage, deal with and you can live a long, successful life. You can beat the odds. Don’t look at it as a strike against you. Wear it has the badge of courage and something positive to not be ashamed at, not hide. For the longest time when I was little I wanted to fit in and be like everybody else, so I didn’t tell people I had CF. I tried to have my medication. I would be so open about it now. Of course, it’s easier for me to say as an adult in 2020 as opposed to being a young child in the 1980s, but that’s what I would tell myself. I’d tell myself, “Don’t be scared. You have nothing to be ashamed of. This is no reflection of you as a person. If people don’t like you, because you have CS, then that’s just ridiculous and that’s their problem.” Another thing I would say is, “Please, always make sure you take your medication, do what you’re told.” There have been times in my life where I’ve lapsed, and I’ve suffered the consequences by getting really sick and ending up in the hospital. I’d say, “Even though it’s a pain in the you know what, stick with it. Do the work and the benefits, it will pay off.” I would say to them, “I feel in a much better place now than you do right now.” Well, okay. That didn’t sound right because I was trying to say … Okay. I would tell myself back then that I right now feel in a much better place. I would say to myself, “Even though you don’t feel in a good place now, you will feel in a good place 20, 30 years later. You’ll feel better about having what you have. You’ll realize you can take care of yourself. You can live a long life. You can live a productive life. Yes, it’ll be hard. Yes, there will be a lot of work, but you can do it, and you’ll feel better for doing it.” Now I don’t like having CF. Obviously, I wish I didn’t. There’s a lot of downfalls with it. When I say, “Wear it with pride,” I don’t wear it with pride as meaning I want to have CF. I wear it with pride as saying, “I have CF. I’m living with this, and it’s not defeating me.”
If I could go back in time, I would tell myself that things are going to be okay and she will live a long, happy life. Unfortunately, the timeframe when she was diagnosed, there wasn’t a lot of information out there, and not a lot of the treatments that there are now, and therapies. So that was a pretty tough time then. Now, I would definitely tell myself that she was going to be okay and she could live a long, happy life compared to what I knew then. And I think I would probably tell myself just to stay strong and keep moving forward and stay positive about the overall situation.
If I go back in time and tell myself, I would say make sure, listen to your mom, because my mom was my biggest person who helped me with my treatments and do the treatments even though it’s time consuming. Make sure you get them done so you can stay healthy and live a better, longer life. I would not be here without that. Listen to your mom. And do the best you can. And how I feel now is, I feel pretty good. Yeah, I feel pretty good. I wouldn’t change anything.
I would tell myself that everything is going to be okay. That sounds so cliche, but you’re going to face a lot of hardships and go through a lot of things that you may never have imagined but you’ll come out on the other end stronger. And to keep fighting, that every day is worth living. And I’m not alone, and that I’m going to make wonderful friends that also have cystic fibrosis. And that the journey is going to be kind of crazy, but definitely worth it. A what today is is something in therapy world back when I was first diagnosed at birth, none of this would have ever been possible, so to always keep the hope.
I would let them know everything is going to be all right. There’s no reason to stress. Advances are being made all the time to make your child live a long, healthy life.
Unfortunately, I was three years old, so I do not have a strong recollection of that time in my life. But I would go back to my primary caregiver, who was my mother, and let her know that we were living in an age where CF was getting recognition and research was happening, and that things would eventually work out.
If I can go back in time to my diagnosed self, I would tell myself to live life to the fullest. I would tell myself to make sure you do your treatments every single day, and how important they are and how important it is to exercise. How I feel now? I feel happy and satisfied with my life as of the now.
I think if I were to go back in time and see myself, when my daughter was diagnosed with cystic fibrosis, I would tell my younger self just to relax, not to stress out so much, not to panic over the future. When she was diagnosed, I just saw hospitalization after hospitalization, a very short life, a very limited life, because at the time, there weren’t as many good treatments as there are now. Now I’m much more confident that she’s going to live a decent, longterm life, that she can do so many things. So I wish my younger self knew that and knew what an amazing life that my daughter could have. I wouldn’t say much to my daughter because she was just a baby. And really, she’s never known anything different. She’s kind of always taken all of her medical stuff in stride because it’s what she does and she’s just a very easygoing, adaptable person, possibly because of her cystic fibrosis. It’s just made her not sweat the small stuff and I do love that. So I’m not sure I could change anything about her. I’m pleased with the way that she handles it.
Well, seeing that you, my loved one, was diagnosed at the age of three, and if I had to go back in time to talk to him now, I would be sure to tell him that this is now considered a chronic illness, not a terminal illness, and that he is going to be able to live each day a somewhat normal life. Yes, he has to do extra treatments and we have to allot for some different medical issues, but that he is going to be able to travel. He’s going to be able to play sports. He’s going to be able to go on trips and that it’s not going to be as bad as we think that it was. The way we feel now that we really worried about things that never came about. We imagined scenarios that really never came true so be compliant. Do your treatments. Do what the doctors tell you and you’re going to be fine.
Well, I was a year old, so I don’t think I would have understood, but as a child and as a teenager, I was very what I call in the closet. I didn’t want anyone to know that I had CF. That was just for me taboo. So I think that I would tell my teenage self and young adult self that it’s okay. People understand, and they’re not going to think any less of me. I’m not really sure what I think they were going to think, but I just know I didn’t want anybody to know. And now I don’t care. In fact, I’ve realized it’s important when you go into a new situation, such as a job or somewhere where you’re going to be a lot, it’s important that someone knows just in case something happens so they can be your advocate and speak up for you. I would say that I would tell that person to appreciate all the energy. I wish I had all the energy I had as a youth, but yeah, issues of being an older person. I’m 60 now. So it’s just part of a natural aging process. You just don’t have the energy you used to have, but I would say, you know, it’s going to be okay, take care of yourself, stay active, eat healthy. And it’s going to be okay.
I would tell older me that while I’m very optimistic now for what the future of treatments will look like and maybe the disease will be cured one day soon, that even though it’s really hard to wrap your head around the different treatments that you’re just being told to do suddenly now when you were diagnosed, please be sure to do them. Because doing them when you’re younger will make it so that you’re healthier when you’re older.
I would just tell them to remain hopeful, so much research is being done, new treatments are coming out. Live life as normal as possible, but take the best care of yourself. Find a good support system and friends who understand, and today I feel hopeful.