This topic contains 7 replies, has 3 voices, and was last updated by  Luisa Palazola 7 months ago.

  • Author
  • #11029
     Tré LaRosa 

    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

    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 

      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

      – 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

    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 

    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

    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

    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 

    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.

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