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Hello All- I am in the 6th week and was admitted again. I was on 2nd week of IVs when I started. I was having trouble clearing the upper lobes and not feeling well. I had a bronch yesterday and they got some stuff out. Actually the lidocain loosened up so much before the bronch took place I...

I was told the Ball could not be used with Meropenem... How do you keep it stable? Once mixed it has to be used within a short time. Just curious because I will be asking questions if I go on it again.

Hello benthyr Had you ever cultured the Xylosoxidans? I guess they are cousins... This was my first bout with this and we used Merrem and I will be doing Bethkis. I will let you know. I am hoping it does not stick around. It seems that bugs have been dissappearing from my lungs lately. Excuse...

Congratulations!

Hello Above all- I was in the shower the other day and noticed that the "aquagenetic" wrinkling was worse! I am in my 4th week and my hands wrinkled up so fast (faster than usual). I have been so dehydrated lately too... I cannot get enough water and gatorade. Hopefully it all gets better soon!

I would let them know, now that you have the job. You don't want your supervisor to find out when you are really sick. You can and should wear a mask/protective wear anyway... if they know why then they can support it. You might find that your supervisor can be your best advocate. I know the...

Saint, I think we are on the same pattern! I take the 1st of day 7 tonight... I also feel pretty good right now. I have more energy and can take a deep breath. MMMMM....

Hello, Amen carisabo! KG- It really depends on where you live because there are food banks ect. to take care of at least that. Foodstamps are not paid if you are on state disability only then have your tried for SSI/SSDI? There is also GHPP for medical expenses. SSI I think pays a little more if...

I had the headache on day 2... I also get the pressure when I am coughing and it does not let up when I am done! I was doing that before Orkambi at times as well... I thought I must be a good cougher, I have all the muscles working! I just took the last dose for the 6th day...dose 12. I have...

Hello Group I was just in the hospital for the first time in 5 years. I use to culture Pseudo but it has been gone for about 5 years. I have also cultured Achromobacter Xylosoxidans since 1992 or so. This time i cultured Achromobacter denitrificans. After some research it seems this is not a...

I was diagnosed with asthma at 13 years old or so- later reclassified as "exercise induced", I was a runner. I use my inhaler quite a bit off and on and I am on Advair now. All that to say I have absolutely no change with Albuterol and never have. I do have reactive air ways so I wonder if the...

I have been on Orkambi 3 days (6 doses- I started at night). I also just got out of the hospital after 1 week of antibiotics and I am continuing IVs at home for 5 more days (Meropenum adn oral Cipro). I also have some liver problems: fatty liver and I get gallstones in my duct that backs bile up...

Tacoma Washington Hello Who is the doctor? If it is Dr. Larson... He is awesome! I believe I was his first CF patient in 1980... He diagnosed me when others turned me away saying I was okay. He has a special place in my heart. Amy Long 36 wcf mother of 3.

Beth Sufian and CF Legal Team The CF Lawyer team is awesome! Beth is great. She helped me get SSi/SSDI years ago. I was denied so many times and I was pregnant at the time. She worked hard and was able to get me approved even though my FEV 1 was high. I reccomend the CF lawyers group/Beth...

Nausea remedy Hello I use to have nausea all the time... I discovered Ginger. I drank ginger ale all the time and it was the only thing that helped. I now drink ginger tea with honey when I feel nauseated. I hope this helps Amy Long 36 wcf DDF508 Homozygous.

Social Security Hello Jessy We fight so hard to get it and then cant get out from under it! I would make sure to fill out the back of the notice--- usually on the back of the paperwork there is something where you can request to not pay and give reason. I had used several TWP (trial work...

Crazy Bob! I was one of the Campers that had the privilege to know Bob. I had no idea he lived that life style until years later, after he had passed away. He was an entertainer and so much fun! His personality provided a much needed break from the day to days. I remember waking up one morning...