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    • #11029
      Tré LaRosa
      Keymaster

      Healthcare for CF is complicated. There are many medications that we’re on that cost unbelievably large amounts of money.

      1. What are some ways that healthcare for CF has presented problems for you?
      2. How do you think healthcare could be simplified for people in the community?
      3. Does your clinic help you with accessing care and ensuring you get your medication? How or how not?
      4. How do you think your clinic could help better?
    • #11157
      Nino
      Participant

      Hello 🖐️
      My son has cf, he is 10. We have some program of care in our country. In my opinion this program does not provide necessary care for cf children. Could you write the list of all drugs and procedures which you get from your clinics. Thank you

      • #11160
        Luisa Palazola
        Keymaster

        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.

    • #11194
      Nino
      Participant

      Dear Luisa

      Thank you for your answer. We are from Georgia (not USA). This country is in the Caucasus region of Eurasia. For breathing therapy we use nebuliser with Sodium chloride(NaCl 0.9%). He has Staphylococcus bacteria. We don’t use inhaled antibiotic, only pills. He gets Enzymes three times in a day, sometimes A,D,E vitamins and Cough serups. Unfortunately pulmozyme and many other medicins and analysis are not avaliable in our coyntry :((( We don’t have any CF centers or association. We have some program, but it doesn’t include everything.

    • #11196
      Luisa Palazola
      Keymaster

      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?

    • #11201
      Nino
      Participant

      I try to find some group of people to start an association and create the plan. Ask our government for better support. But it is log process and time is very important.

    • #11221
      Nino
      Participant

      Hi Luisa,

      could you give us some advice, what should we do for our children to extend their lives and make for them better conditions.

    • #11246
      Luisa Palazola
      Keymaster

      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.

    • #13947
      Paul met Debbie
      Participant

      Not standard, but in my opinion important next to antibiotic therapy, is anti-inflammatory treatment. For instance I use every day 2 x 50 milligram Diclofenac, 2.5 milligram prednison and every other day 5 milligram Levocetirizine. Since starting Diclofenac 5 years ago I had no exacerbations, in the years before I had 5 severe exacerbations every year that required iv anitibiotics every time. I had to up my omeprazol to 2x 20 milligram to prevent stomach problems (reflux) after starting Diclofenac. With less inflammation there is much more energy and well being, no more fever and infection is not able to rise above a low level that is manageable with common antibiotics like doxycycline, while before I needed all the heavy stuff and never became stable. Inflammation is what plagues cf patients most, damages the lungs long term and enables infection to gain momentum. If you prevent inflammation, infection will have a much harder time getting to you. Sadly, cf protocol treatment is focussed on infection much more and has a blind spot for inflammation control. Talk to your doctor.

      For me inhaled antibiotics did not do much good, but increased inflammation in the end.

      For airway clearance (next to light exercise) I use a breathing technique called autogenous drainage. Basically slow and deep belly breathing lying on my back and sides trying not to cough for as long as possible, which slowly transports mucus upwards. I do it while and after nebulizing. It takes time (1.5 hours in the morning,1 hour in the evening) but is very effective and smooth. Horizontal exercise does not have to fight gravity but uses it. Wu wei.

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