[luisa-palazola]

Hi Nino, I apologize for the late reply.

In terms of better quality of life, the biggest things are ensuring that mucus in the lungs is the absolute minimum (which is hard) and that it done through chest physical therapy, inhaled medications, and antibiotics. However, exercise is also incredibly important for a person with CF. As it helps clear mucus, and strengthen and maintain lung function. The second thing that is vital is nutrition and receiving the vital nutrients. Diet that is enriched with ADEK vitamins, proteins, fats, and calories is crucial.

[luisa-palazola]

Hi Nino,

I hate to hear that access to proper medicines isn’t well supported in Georgia. Do you know of any organizations that donate these medicines to the CF Community in Georgia? What would it take to start an CF Organization there?

[luisa-palazola]

Hey Lizzy —

I’m Luisa and I am 25 and I have CF, like Issac. I just finished reading your latest blog, and am also in awe of him as well.

To answer your question — we do have a forum for Patients and Caregivers that we are in the works of developing a thriving discussion! I’ll link it here.

https://cysticfibrosisnewstoday.com/forums/forums/forum/a%E2%80%8B-%E2%80%8Bforum%E2%80%8B-%E2%80%8Bfor%E2%80%8B-%E2%80%8Bcystic-fibrosis-%E2%80%8Bparents%E2%80%8B-%E2%80%8Band%E2%80%8B-%E2%80%8Bcaregivers%E2%80%8B/

[luisa-palazola]

Hi Joy, thanks for joining us. I’m Luisa and I’m 25 years old with CF. I don’t quite have the perception of a parent, but I know what it’s like having CF. I’m more than happy to chat or answer questions. If you feel more comfortable you are more than welcome to send me a direct message or add me on social media, Luisa Palazola. <3

[luisa-palazola]

Ok yes to all of this. I’ve always had pets growing up, and in middle school my mom thought it would be perfect for me to have my own hypo-allergenic, pedigree, lap dog as a companion, especially for when I got sick.

This month Leo turns 14 years old, and he’s been affectionately named demon by nearly all of my friends, family, and passerby’s. Despite his terrible attitude, that little dog has provided me with so much laughter and stories that everyone knows who he is. And, honestly, I don’t know what life would be like without him.

[luisa-palazola]

For me and the issues I’ve had with cf, I think mental health is a HUGE and frequent discussion that we need to have with our care teams. Honestly, I think mental health within chronic illness in general has been overlooked for the longest time. And from my experience, I don’t think it’s a topic/issue many therapists are even trained on dealing with. I wish the CFF would put more funding into developing perhaps a protocol/tools for therapy in CF or chronic illness.

What would that look like? I honestly don’t know. I think a huge influence on me and reason why I’ve gone through bouts of depression and severe anxiety, is because I have an idea (granted, purely false) of what life is “supposed to look like.” But, CF or not, this normalized idea of the right path, is garbage. There are going to be hurdles, and having CF they’re way more apparent. But, that doesn’t quite diminish your quality of life, it just hurls you onto a different path, I guess your path.

[luisa-palazola]

Hi Nino, I’m glad you’re here. May I ask where you’re from?

Here’s a list of therapies, medicines, and equipment that are standard in CF care in the United States. Keep in mind, this is just a list I came up with, and often times medicines and therapies are catered to the needs of the person. If anyone has anything to add, please don’t hesitate to add.

Breathing treatments:
– xopenex or albuteral as bronchodilators
– pulmozyme (most patients are prescribed if they can tolerate it, it acts to thin mucus secretions)
– hypertonic saline
– inhaled antibiotic depending on what bacteria is cultured (the most common are: Tobi, Cayston, and Colymycin)

Airway clearance:
– the Vest (I think the US is the only country that has this as a standard CPT method)
– the flutter & acapella
– manual chest physical therapy using hands/clapping on chest and back
– PEP
– exercise

Medicines:
– Enzymes (depending on what brand works for the person, we have Zenpep, Creon, Pertzye, etc)
– AQUADEKS (vitamin supplements)

Often times, we are admitted and treated with IV antibiotics for a minimum of two weeks. The antibiotic chosen depends on bacterial sensitivity. There’s quite a range of IV antibiotics, but I’ll list big names often used here. However, it’s incredibly important to remember that these medicines are chosen based on bacterial sensitivity.

– Ceftaz
– Tobramycin
– meropenem
– Vancomycin

To administer IV’s, most people have either a semi permanent catheter called a PICC line or they have a surgically placed apparatus called a Port a Cath.

I am not too well versed in GI medications and surgeries. However I know when people have difficulty gaining weight, there are various food supplementations given like scandi shakes, or a g-tube or mickey button is placed, to deliver formula.