Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?
My cystic fibrosis has effected my life pretty seriously. I mean, as a younger person, when I was young, I didn’t really have a lot of issues. I was hospitalized maybe three or four times in childhood, had a couple of surgeries on my sinuses. As I’ve gotten older, it’s gotten a lot worse. I had to stop going to college in person and switch to an online school. I was hospitalized every two or three months for at least a week. Recently, it’s done a lot better because of Tricassa and because I switched to a better clinic. So I’ve been able to hold a job pretty well over the last five years, but I still have spent a lot of time doing medications. So hopefully, we’ll be able to minimize the medications that I need to be on now that Tricassa is working for me. Yeah.
I do daily treatments and that can be a strain on time, especially if I get up early for an early morning appointment or go to bed or come home late and I need to do a treatment before I go to bed. I’ve had a lot of GI symptoms with my cystic fibrosis. So I take MiraLax every day and I was still having issues so I was put on LINZESS to help with that and it’s been helping with my GI symptoms so far.
So, CF impacts my day-to-day life by having me do extra therapies, and take extra medications. It’s challenging to get it all done on time, and frustrating to have to do extra, but I’m just so used to it. So, that’s how I’ve adjusted. I’ve just adjusted over time. I’m transitioning to taking care of myself only, not having anyone help me. And I’ve used my doctors to help me adjust to these challenges and have the support of them.
My child’s diagnosis has impacted my life in the respects of things have gotten busier, more hectic. And how I would describe that is if there’s more treatment time, the older she gets, the more she progresses in her lung. It has caused an increased treatment time and more hospital stays, more new medications added. And it’s been pretty tough sometimes, but we have a pretty good support system here. We have put into place a medical board, which we use for her medications. It’s magnetic and dry erase so that we can mark medications as they’re being done and add new medications when needed. And so we can better keep track of when things are being done. And basically just keep her on track, have a pretty solid schedule. Something I can appreciate because I’m kind of… I’m not sure what the word… OCD, I guess, is the word I would use. I like things in order and I like to keep things in place. And I also think it benefits her because then she has more structure for her daily routine in it. I think it will help her later on in life as well.
I’m going to answer this question based on the current situation because it’s most recent. With the outbreak of COVID-19, my life has very much been impacted day to day. I am considered high-risk because I have cystic fibrosis and therefore, even though we are currently in phase three where I live due to the advice of my doctors, I’m told that I still should remain indoors and away from people as much as possible, which means even though friends and family members are going out and socializing while adhering to the guidelines, I still have to stay inside and have no contact. This makes me angry because it just is a reminder of the limitations that cystic fibrosis has on my life. It makes me sad because I can’t have fun like other people are having fun that I see online, and when I talk to them and on television. It makes me depressed because I, although I know it’s for my safety, I hate having to stay indoors. I really resent having CF at times like this. I also have feelings that make me very nervous because COVID is highly contagious for me, and it can be very serious if not deadly, if I contract it. On the other hand, it’s like part of me wants to stay indoors and is glad that I’m doing so because it decreases the possibility that I will contract the virus. When I do go out, I am hesitant to be around people even if I’m six feet apart and we’re both wearing masks, you don’t know everything about it, and you’re always taking a risk every time you leave the safety of your house. This can be frustrating because it kind of decreases my quality of life. I can’t go out and have as much fun as I used to have. I’ve just been trying to adjust by doing things that make me happy within the realm that I can. Even though I have these limitations that I can’t go out, I can’t take public transportation, I can’t go to a restaurant, I’ll try to make up for it by doing things that I enjoy like okay, I can’t go to restaurants, so I’ll cook a good meal. I like to cook. I like to eat, so that’s something fun. I can’t go out and socialize with my friends so we can video chat, kind of do things in place to keep myself sane and kind of have the next best possible thing that I could do. That’s currently what’s going on with COVID. Having CF is a challenge and it affects my life on a day to day basis regardless, but I wanted to comment specifically on COVID because that’s the most recent thing going on and it has affected me.
It didn’t really impact my life too much. There’s not a lot going on, so it’s easy to do my treatment and take my medicine. To adjust to it, it’s just, I’m able to work with my treatments rather than just take time out to do them so I can do them as I’m doing my day-to-day chores or what I need to do to get done for that day. And there’s not really anything that’s really frustrating or challenging. It just takes time out of my day, which that’s the big thing. It’s time-consuming.
I take many medications, morning, middle of the day, night, and bedtime. It is a very disciplined schedule and sometimes, especially when I’m on IV antibiotics, it can get a little bit tricky to be able to do other things. But as I said very disciplined schedule and there is no skipping. You have to do it.
The frustration is fitting in all the daily treatments. We have to continually adjust our lifestyle, our functions to accommodate, but we make it all happen.
The frustrations I deal with are mostly time-related, time to do treatments, to order prescriptions and to practice proper self care. I do live alone, so a lot of the responsibility falls on me. Things I have done to remedy this would include flexible work schedules, telework and telemedicine.
My condition impacts me on a day to day by just having to remember to do my treatment and take time out of the day to do those, otherwise I don’t really let it affect me other than that. Just these challenges, I just set alarms and I make sure I have meds with me or I have to go home and do my meds and that’s it.
So my daughter has cystic fibrosis and she does a lot of treatments, takes a lot of medicines, and we have to adjust our schedule based on her regimen. So we have to set aside special time for her to do all of her things. Sometimes we have to adjust where we’re going and when, and when do we come home, and who she spent time with because she needs insulin shots and she needs to monitor her food intake and her breathing and things like that. So we just make adjustments so that she can get all of that accomplished. And it can be hard because she has disappointments as a teenager, things she’s not able to do sometimes because of her schedule, because of all the medical things that she has to accomplish.
The challenges that we face daily is just making sure to plan accordingly. If we are leaving to go on a trip or to go out of town, we just have to make sure to include time to do the treatments. The frustration is when we have to be somewhere at a certain time and we don’t have the time to do treatments, we’re having to rush to get that done. And so hopefully, in the future, with the new medication that’s coming out, that there will be some of these steps to these treatments that we can reduce.
What is the main way that my cystic fibrosis impacts my day to day life right now is with the Trikafta that I’m on and having to make sure I take that, that I eat fat with it. I also try to take it as close to 12 hours apart as possible. And that can be, I don’t always eat exactly the same time in the morning so then I try to be thoughtful about it in the evening. In the morning, it’s not so hard. It’s easier to make sure I have some fat. But the evening sometimes that’s a little, “Oh, okay, what am I going to eat?” Because sometimes it’s after dinner, if I can time to do it with dinner, it’s okay, but if I took it later in the morning and I take it later at night, and then I’m trying to say, “Okay,” that can be a little bit of it, it’s not a huge deal, but a little bit of a struggle just to, “Okay, I need to eat something that’s fat,” and I don’t really like to eat fat, quite honestly. But that’s a little bit of a struggle, and it’s more the night time. And when I’m doing with NEB treatments, just timing it. I’m a very busy person and just making sure that I allow time to do things or that I’m not too tired. Sometimes if I’m too tired, I’m like, “I just need to go to sleep.” One of the things I have tried to do to adjust to the challenges of particularly the night time treatment is to make sure that I have something. I pretty much always have milk 2%, which does have five milligrams of fat per cup. So I do, do that, but I always try to have a little something extra just to make sure I’m getting enough fat. Also, with the night time pills that I take for that drug, I don’t, especially with the COVID, go out in the evening that much, but before, making sure that I carry some with me so that if I am eating in a time frame that I can take it and I’m like, “Oh yeah, let me go ahead and take that.” So I’ve learned to keep some in my purse and two or three in there so if I am out and I am eating the right amount of mass of fat and it is within the timeframe that I can do that. Just a matter of being more mindful about it. The one time you forget it and then when you get home and then you have to take it and find something else to eat, just makes it a little easier to be mindful.
So, my condition affects me every day, from the morning, the day I wake up, to when I go to bed at the end of the day. And it’s frustrating because if I don’t do my treatments, I feel sick throughout the day, and I can end up in the hospital. But, at the same time, my treatments are very time-consuming and make it difficult to work a full-time job and have a social life as well.
Day-to-day isn’t necessarily a challenge because I’ve had this my whole life, and we have a routine. However, if I get sick or a complication arises, that can be frustrating. But, we have a great support system, a team of doctors, and we’re able to adjust fairly quickly with their help.