A question for the Cystic Fibrosis Community

What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?

Answers from the Community

I have a therapist through the CF clinic now. That has been extremely helpful with my mental health, but at my old clinic in Missouri in the CF adult program at my old hospital, we actually didn’t have a psychologist on staff and I was transitioning into adult care and I did not have the mental health support that I needed. And I actually didn’t even really know how much I needed it. I think that just looking back, providing a psychologist on staff at every adult CF center to help with the transition and just the aging issues with CF would be, I think it’s extremely important, because as soon as my mental health started to improve, everything else improved. I can’t stress how much I think that is absolutely needed. No matter what the cost is.

Well, I tend to keep to myself a lot. I don’t know if there’s a resource specifically that would help. They were kind of looking into an app at my CF center, to be able to contact my team easier. And I think that that’s something that would be a great resource.

Some resources that I wish I had to help was a health app dedicated for CF so you could personalize it and a calorie counter as well for your goal BMI, because we definitely don’t fit the 2000 calories per day region. And I noticed they don’t have that, because I just want a health-oriented app or a exercise-oriented app specifically for CF so it can be more personalized. It would help me because I’m always into exercise and health, and I definitely would like something more personal like if it gives me tips for the future and also connect how much weight I need to gain or how much more I need to exercise to keep my lungs healthy.

At this time, I don’t feel like I do have any resource issues that I have not been able to find. Like I said, our clinic and the CF Foundation have been very beneficial in those areas. We’ve never really had to not get something taken care of or learn about something with those two resources at hand. They’re great.

This is a really difficult question. I honestly don’t know how to answer it. I tried to think of something that would help me manage my condition other than some type of medical breakthrough. I don’t know if that’s allowed as an answer, so I’m trying to think aside of that. Aside of a cure, or aside of a medical breakthrough that isn’t a transplant or something, I really can’t think of something that I’m looking for but I’ve been able to find. So I guess that, then, I would have to go with the default of what I said, some type of big medical breakthrough. I don’t think I’ll live to see a cure, but I had mentioned in the answer to one of the other questions that they came out with this triple drug therapy called Trikafta for people with CF, and it showed wonderful results. Everyone wanted to get on it, and it came out like the end of last year, 2019. I started on 1/1/2020, and, I mean, I haven’t had any drug that has had this positive of an effect on me. It has made me feel so much better and given me more energy. I feel better, less coughing, less sputum production, more quality of life. I haven’t really been able to test out the medical benefits yet too much, because I haven’t been able to go to the doctor because of COVID. So I don’t know about my pulmonary function tests and all of that, but I imagine that they’re higher and better than what they were, just based on the fact that I feel better. But to try to really answer the question, in case that’s not what you’re looking for, if … Aside from medical breakthroughs, something that could manage my health would be maybe like a service that specifically is for people with CF, where they can help you get around. For instance, this whole situation with COVID. I can’t go out. I don’t drive. Even if I did, I wouldn’t have a car. I can’t take public transportation right now, because I’m too high-risk. It’s even kind of dangerous for me to be in the car with somebody, like a friend or a family member, because they don’t live with me. So I don’t know what they’ve been exposed to and vice versa. I live by myself. So ideally, I guess, well, not ideally, but I mean, the most logical thing to do would probably be to have a family or friend take me to my appointment when the clinic opens up and when I’m able to go, as opposed to taking public transportation. But even then, it’s not 100% safe. So if there was some type of service, like Uber or Lyft, but specifically for people with CF so that I could go to clinic and know that I was safe in the Uber or in the Lyft, that it was sterilized from top to bottom after each patient went, and there was plexiglass between you and the driver. I guess not too much of a stretch considering COVID, but something like that, that was primarily for people with CF and understood our needs, because yeah. I could go in an Uber, wearing a mask and gloves, and they can have a partition, but it’s still like that’s general. That’s for everybody. I can wear a mask and go on the train if I absolutely had to, but again, that’s what everyone would be doing. Something specific that’s catering to that, because another thing is, when they do open my CF clinic, they’re going to have you wait in your car and then send you a text message or call you when you’re ready to come into the hospital so you’re not exposed for any prolonged period of time. Now, if I had a service like that, I’m just, what, going to sit in someone’s car and be exposed for a long amount of time as opposed to the security of knowing that you’re in some type of vehicle that is going to help. Also, I would have no way of doing that without this, because I can’t take the train. I can’t take the bus to get there. So if this service existed, I could just take whatever the service is and go for my appointment and do what I need to have done. So that’s something that would be very helpful.

I wish there was just a specific app for cystic fibrosis that will remind you. You could put all your treatments into the app and put reminders for each one to, “Hey, don’t forget to do this with this.” Or, “Take your medicine at this time.” Well, usually you have to take your medicine with food, so you have to eat. But when you eat, it’d be a good reminder. Or to be able to track your PFTs, your blood pressure, your sugar, all that other stuff, be able to track your stuff, as it goes to make sure to see your ups and downs and be able to print out graphs and stuff like that from the app. I think that would be really useful and helpful for CF patients, just a specific CF app, all your medications, your treatments, and reminders.

I don’t know that there’s anything that I wish we had but I believe that aside from like as I mentioned on Facebook, I would love for there to be a tool of just an exercise platform to be able to have all cystic fibrosis people being able to join that. But it’s kind of hard to make that a reality when you include everyone because a lot of the under age, of course, don’t have access to internet.

I feel like I have a lot of resources available to me, and I’m not seeking any extras at this time. I feel pretty satisfied.

One resource that would have been helpful would have been a patient group to have with folks who are also in my situation, to express our feelings, concerns, frustrations, successes. And that was not available due to social distancing requirements for people with CF. However, here, recently they are beginning to do this in a Zoom or electronic platform. I think those would have been very helpful, especially in adolescents.

I think it’d be cool to have a resource to have all of my pills packed. A lot of mine are specialties so I can’t do any of those packaged pills. That would be nice. Also, an app where I could put all my statistics in every single day. Like my lung function I do every night, my blood pressure, my temperature. Everything I keep I write down in a book, but it’d be nice to just have it on my app to be able to download it and print it when I go to the doctor.

I’m not sure what resources are out there. The things I would like may already be out there. I just don’t have the time necessarily to search real hard to find it. I think I would like be have a group of, to be able to connect with a group of parents who have a child who’s female, my age, has a lot of the same issues that my daughter does. For example, she has CF-related diabetes and I am part of a CF-related diabetes social media group, but there’s so many people out there. I feel like it wouldn’t be possible to have a group of people that have a very similar situation with their child and we could share very specific things about their needs and what they’re going through. Sometimes you have to really weed through a lot on social media to find what’s relevant to you and your child’s situation, whether it’s their age, their specific medical needs that they have, or even their lifestyle. My daughter’s extremely active and she’s a dancer, and sometimes I can’t relate to other families that might have children that aren’t, that don’t do those things. And so I don’t know, maybe a better way to connect with other families and for my daughter to connect. At some point, I feel like she’s really going to need to be able to connect with other teenagers who are going through the same things she is, that understand what it’s like to have this disease and to have to do all the maintenance and not necessarily to be able to do everything else that everybody else does. We’re not really to that point yet, but I feel like at some point it will be important for her to be able to connect with others in that regard. Take financially, I wish there was just a simpler way to help families know what resources are out there. There are a lot of good resources to help you pay for medicines and treatments and supplements and things like that. But it’s, it’s kind of a web of complicated information. And so I think some way to simplify that would be very helpful.

The only thing that I can think of for an ideal resource is when a parent is first given the diagnosis for their child, is if there were some sort of a booklet, some sort of resources that listed different websites, different avenues for prescriptions and for medical coverage, because this disease is very expensive, and sometimes the insurance alone, what we have found out, is not enough to cover. There are resources out there that are available, like the HealthWell Foundation. If was a one sheet or one booklet that listed all of these different resources, if it’s nationwide, then that can be put upfront. But even if it could be listed by states, here is where you could go in your state, a contact person that can put you in touch with your resources. Resources have changed since my son was first diagnosed. There were things that were available then that are not now, and so we have had to find new ways to compensate for supplements, for vitamins, for copay assistant programs, all of those things, if there was just one area. Sometimes our social workers have that available at our clinic, but there are still things that they do not know that we have found out, and again, one of those resources has been other mothers that have been through this and that have the experience to share with others.

I wish that there were a resource to make it more obvious when there is a clinical trial that you do qualify for and how to qualify for it. I’ve spent most of my life really trying to get into clinical trials, but they just are very hard to get into, to be recruited into, despite how clinical trials really need to also recruit people. I also wish that there were a resource for the comorbidities and the side complications that come from your diagnosis. So with diagnoses and chronic illness, you have all these other diseases that show up on the side as a result to them, which may not be considered or treated like the actual disease you’re diagnosed with. So how to handle these other diseases that pop up as a result of your primary disease.

One resource I wish I had as I have aged and as the Trikafta has corrected some of my messed up DNA, I now don’t lose as much salt, and that means that I now have a little high blood pressure and edema. So I’m having to be very cautious with salt intake. And I wish there was … you know at the same time I have also nutritional needs that we’re low on, ADE and K, we have to eat a lot of protein. I wish someone would help me come up with some information about low salt, but high protein and things that help both aspects, both my EPI and enable me to have less salt.

I really can’t think of any resources that I would like that I haven’t been able-