A question for the Cystic Fibrosis Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My parents are definitely… My parents and my sister and my family is the biggest support. A lot of my aunts and uncles have helped out too, when I’ve been in the hospital, away from home. The best way that they’ve helped me is just to be there for me when I’m sick. My parents have financially supported me a lot, when I was a lot sicker. I really couldn’t have gotten to where I am right now if I didn’t have that financial and emotional support from them. My partner who I’ve been with for the last three years has really helped me through a big transition to a new clinic in a different state and a big move across the country. That was huge, because when we made that move, I was pretty sick. Just helping me move my stuff. A lot of my friends have helped me with stuff like moving and just being there for me in the hospital, calling me when I’m impatient, picking up stuff for me when I’m sick. Yeah that kind of stuff.

Probably my biggest supporter is my partner. There are times where cystic fibrosis gets really hard, and I need someone to lean on and help take care of me, and my partner has definitely done that. I have some close friends that also help me work through things and are always there to listen. I’ve gotten more involved with the community through friends that have CF as well and have supported me, so that has been a great way to do something to help. And it’s been good for me, so I’ve enjoyed that.

My biggest supporters for my condition, are definitely my doctor and my nurse, my parents, and my close friends. They’ve supported me through this journey by just knowing that I have what I have and know exactly how to comfort me and know all that I have to do for my treatments. And so they’re big supporters because I tell them everything and they know exactly how to handle my situation. Some examples of how they’ve supported me through this journey are knowing how to get myself together for me, because I’ve taught them, and doing my therapy with an extra vest right beside me and just making sure that I feel included in everything and attending different walks to benefit CF.

My biggest supporters are most definitely my family and friends. My doctors and the entire team at my hospital and the CF center are wonderful. And, I know that I can contact them and count on them if I need them. But, my biggest supporters that have been with me for the duration of my life and that I know are always there for me and care, not just about me as a patient, but as a human being, are my family and friends. And, the biggest supporter out of all of them, was my mother. I speak of her in past tense, because she has passed away. But, from the day I was diagnosed till the day she passed away, she did everything to protect me and keep me healthy, sometimes going overboard. Making me wear a winter coat in spring, and not going out after I showered, because she was so afraid I was going to get sick, because she knew as an adult and as a mother that if that happened to me, I could get really sick and possibly die. So at those times, I would resent her for it, but now, as an adult, I can look back and say, “I understand why she did that.” And, she was the one who when I was little, just gave me the medication. Now, as an adult, I do all my things myself. But, I didn’t even have to worry about it, and she just gave me my pills when I woke up, would arrange for my physical therapist to come, tell me when it was time to eat, count out how many pills I had to take, say, “Take these pills before you eat,” took me to the doctors consistently. If I was sick, I could go to her, and I know that she would make it better. Oh, God, I’m getting emotional thinking about this. I don’t think my mother, or talk about it to this extent that much. But, really, I think that I was fortunate to have her, because she really made sure that I was safe and healthy. And, if I had another mother, a mother who cared less, I don’t know if I’d still be alive. I mean, she really was on my back, and made sure I saw the best doctors and had the best treatments, and took care of me. And, I could not have asked for more. My father and my sister, too, and my friends. But no one went above and beyond or took as good of care of me as my mother did. I mean, some examples can be if I didn’t feel good, and I was sick, even before I felt sick enough to go to her and tell her, she could just tell by my demeanor. Or, if I was in the hospital … I remember one time when I had to have my first clean out which are IV antibiotics, so you’re in the hospital for at least a couple days, I remember the first time it was a big deal, because I had never had it done before. And, I was scared, blah, blah, blah. I talked to my friends who had had it done before, because I was nervous, and I wanted advice. And, I just made some silly reference to something like, “Oh, I want balloons and this and that in the hospital,” like all the stereotypical things that you see on television and in the movies. And I remember my mother took me. They put the PICC line in my arm to administer the medication, took me to my room. I don’t know if it was that night … I feel like I’m going to get emotional again. I don’t know if it was that night or the day after, but I remember my mother coming in my room holding balloons. Not like I seriously wanted balloons, but just like … It was funny, but also, it just showed how much she loved me and, “Here’s a joke, ha, ha.” But also, “I want you to have the balloons, because I want you to be happy, and I’d do anything for you.” I love that I had her in my life, and I’m very grateful for that.

Well, our biggest supporters are, first and foremost, our doctors and staff at the clinic. They have really strived to help us in any way they could and to explain things as explicitly as they could, and just make sure that her overall health is first and foremost. And there’s nothing greater than that. As far as family goes, we do have a couple of family members that are supporters, but not many. Most of my family doesn’t understand her illness and they all just try to tell me that she’s going to get better. And maybe with treatments, she might, but even trying to explain to them actual physical research, they still don’t quite grasp what her illness is. I mean, they’ve helped with just being there and being able for me to talk to them or for my daughter talk to them when things seem to be rough and we just need somebody to vent to, and maybe even get a distraction from the scenario. And the same goes with friends. We have some really close friends that have helped with emergency situations of our car being broke down, trying to get our daughter to appointments or hospitals or anything of that sort. They’re always there. Again, they’re the same basically as family would be as far as being able to talk and vent when we need distraction or just release from our current situation.

My family is my biggest supporter. Right now, my wife is. She’s always making sure I take my medication, doing my treatments, and make sure I feel good. The next one would be my mom. She’s always calling, or my dad. They’re calling both to check on me, make sure I’m doing well, and just always making sure I’m feeling good and make sure I’m taking my medicine. Obviously, the next one would probably be my doctors, the practice through doctor’s office. I see them. Supposed to seem them every three months. The pandemic, it’s virtual. But, those are my biggest supporters.

I’m very fortunate that I have a lot of very supportive friends and family, but my biggest supporters would probably my mom and my sister and my dad, and also my grandmother. I have, as I said, very supportive family and friends, and of course they’re all in my corner, but definitely my mom is number one.

My husband and I are the primary caregivers. Also have the help of an older sibling of my child and the support of extended family accommodating us for treatments if we are visiting. We have a great doctor and a great CF nurse coordinator who I can call when I have all sorts of weird questions. Always there for support.

My biggest supporter would be my parents through most of my childhood, adolescents and even young adulthood. They were able to support me emotionally, physically, but also financially with resources and a good upbringing. Aside from having CF, I never really was treated differently or experienced anything that made me think that I was different or handicapped or anything in that manner, so that was good growing up. They definitely were very well equipped to do this.

My biggest supporters through my health journey has been number one, my mother. She is always there for me. She is always at doctor’s appointments with me. She is at the hospital with me when I’m there and she’s always there for someone to talk to when I’m having a hard day or just not doing well. Secondly, it would be my husband who really is the driving force in my life to do everything I need to do to stay alive. He, I guess gives me a hard time if I don’t do things and makes sure I’m doing everything that I need to do to live.

From the very beginning, we had a lot of support from friends who would bring us baby clothes and toys when our daughter was hospitalized, and they brought things for our toddler son to do because they were afraid of him being neglected. So, lots of attention given in the early months of diagnosis. Since then, I would say still our family is our biggest support. My mother is always researching new medicines or natural treatments or diet that might be helpful for my daughter. The rest of our family is always willing to help take care of her and give us a break, and our church, members of our church, and friends there have been very supportive, always praying and asking how she is feeling. So, I would say those are our biggest supporters.

Our biggest supporters have been friends who are like family. In our immediate family we have had so many deaths, and so grandparents have not been available to help us through this journey. So, our friends who have come to know and love our son have been those supporters by sponsoring, donating to our cause to the walk, when we have had to be inpatient at the hospital, bringing us meals, gift cards, and just being there for us and for him. Yes, our CF team where we go in Alabama has been a huge family and support for us. We can call them at any time and know that they will call us back within the hour to answer our questions or just to give us support. Also, some of our supporters have been people that we haven’t met that we have formed relationships with on social media, have been a wealth of support and answered questions because some of them have been in the journey a little longer than we have and has already been through some of the experiences we have yet to experience. So, those have been great supporters as well.

I would say that my biggest supporter is my best friend who also has CF. She completely understands what I’m going through at times when I don’t feel well and she’s very good at if I’m starting to have some symptoms of a possible beginning of an exacerbation, I think she recognizes it before I do. And she’ll say, “Oh, you’re coughing a lot. You sound like you don’t feel good, you’re tired.” So sometimes she’ll prompt me to, to check in with myself and see how I’m feeling. Also, I can talk to her about anything and we talk about things CF-related that we wouldn’t tell anybody else in the world. My doctors also are very, very caring and very supportive and very good about letting me live my life. As you know, it’s important to not be the disease, but live with the disease, so they recognize that and try to let me be an individual and live my life. I have friends who are great. If I’m having a get-together and if they’re not feeling well, they’ll call me up and say, “I really want to come, but I’ve got a cold and I don’t want to be around you. You know I’d be there if I could.”

My biggest supporters are my friends and family. They are always there for me whenever I get bad results or I need to navigate a tough situation with insurance or with results from different blood tests, than just general medical procedures.

Biggest supporters are my medical team, my husband, and my parents. They’re there for me to help when I need extra help, they’re there for me when I need to talk, and they’re able to support me physically, mentally, and emotionally.