Search results

  1. S

    Cayston's Horrible Packaging

    If you look straight down on the top you can see the raised edge to flip up. I have not had any problems. Good luck.
  2. S

    Cayston's Horrible Packaging

    It has a raised edge about 3/8 inch. long, run your fingers around the top outside edge. There is writeing saying "flip up" on top. Where it is written flip up, that is where you flip up and peel back a little rocking side to side and pull off.
  3. S

    Cayston's Horrible Packaging

    For me it is easier. You have to flip the correct side of the blue cap.
  4. S

    For people taking Orkambi

    I am trying something a little different. I am doing a albuterol Neb RX before and after the Orkambi dosing and Colistin Neb. It seems to help today because I was able to go to the gym for 1&1/2 hrs. after the Colistin Neb Rx this A.M. Just trying to get through the bronchospasm with the...
  5. S

    For people taking Orkambi

    DJ, good for you! As you know exercise is very important for us Cfers. I go to the gym 3 times a wk. doing 11/2 hr. Or more Work out each time. I am not able to do treadmill any more because of arthritis in ankle from old football injury. I now do 6 miles on supine bike with work load of 6...
  6. S

    For people taking Orkambi

    I have taking Neb Colistin for several yrs. with out any issues until yesterday. I started Orkambi 23 days ago and have been on Cayston until yesterday and switched to Colistin. Had increasing sob all day yesterday to the point I used O2 last night. This A.M seems much improved with the SOB...
  7. S

    For people taking Orkambi

    I changed from Neb. Cayston to Colistin yesterday and experienced significant increase SOB with taking Orkambi, never had this before when not on Orkambi. This am the SOB was gone. Anyone else experience this?
  8. S

    For people taking Orkambi

    Yep in my 55 yrs. of doing Neb rx I have never tasted salt in my green mucus when I cough it up. Interesting
  9. S

    For people taking Orkambi

    Day 15, with Okambi no problems with it except maybe a little wended when I lay flat in bed sleeping with my usual one thin pillow with no O2. Had my 1 1/2 hour work out at gym today with no issues. Six mile bike ride setting with work load of 6 might be a little easier? Wait and see. As a side...
  10. S

    Nebulized Colistin & Join Pain?

    I have been nebing Colistin for 2 yrs. and no problems.
  11. S

    For people taking Orkambi

    Day 13, back to my normal self, I have been on the full dose of Orkambi for 3 days now with NO tightness in chest back to my normal as far as being winded when exercising. NO O2 needed for sleeping. My mucous is definitely thinner. Wait and see!! Have a great weekend!!
  12. S

    I'm 36!

    Happy birthday young lady.
  13. S

    For people taking Orkambi

    Day 11 Had a good night sleep without O2. Took 3 Orkambi yesterday, this is 2 days on the 3 a day regiment. I had a little increase in SOB about 11/2 after taking the 2 last night. Resting sats this am was 97. I took 2 Orkambi at breakfast this am so I am now up to the full dose of Orkambi. No...
  14. S

    For people taking Orkambi

    Totally agree Saint, I hate some of the folks have dropped Orkambi because I "think" like you, it will be a big help for some them if they are able to weather the storm to get there. The 6 is work load units, amount of resistance. I use to do the treadmill but the arthritis from a old football...
  15. S

    For people taking Orkambi

    Thanks Saint, just trying to inform folks about how I am taking Orkambi. Not that it is the correct way but it appears to be working for me. Just got back from gym. Interesting note at the end of my 6 mile ride, work load of 6, on recumbent bike for 30 min., after more than doubling resting HR...
  16. S

    For people taking Orkambi

    Day 10. Took 2 Orkambi last night, had lite night sweats with SOB which I normally do not have when in bed lying flat. Still had SOB when I woke up this am but that has gone away about a hour. I took one Orkambi this AM with breakfast so I am now up to 3 a day. The symptoms that I am...
  17. S

    New Orleans Adult CF Center

    I live south of Jackson and go Adult CF clinic at UMC located in Jackson. They have a great group of personnel there. The Dr. and Nurse Pracitioner are very thorough.
  18. S

    For people taking Orkambi

    Thanks Bill, just trying this Orkambi. Or maybe the Orkambi is trying me? Hope you are doing well. Bundle up and stay warm winter is almost here. Take care.
  19. S

    For people taking Orkambi

    This is day 9 for me on 1/2 dose Orkambi. Feel great with no issues with Orkambi, plan on starting 2 Orkambi tonight. Chest seems clear at this time. Mucous is definitely thinner than normal. I get great results when doing neb Rx with mucous being thinner. Lets see what the next few days bring...
  20. S

    For people taking Orkambi

    Good Sunday morning!! This is day 7 on 1/2 doses of Orkambi. Spit up some dark mucus, looked old with bright blood last night, none today with neb Rx.. I have not spit blood up in many yrs. like 25. Still having some night sweats. NO TGHTNESS OF CHEST. Still some what winded as compared to...
Top