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  1. M

    Experience with IV antibiotic Meropenem

    I am currently finishing up a run of meropenum and I too get those symptoms. Eat ALOT of yogurt; I buy the chewable acidophilus and pop 2 everytime i pass the bottle (about 4 or 5 times a day); and I drink a TON of water. My symptoms are way down and easily manageable now.
  2. M

    Old folks: how did you do it?

    I'll be 53 this year; FEV 1 is 21% and I am NOT on oxygen :) I do everything I am supposed to do - wake up and do the meds, vest, acapello - START THE DAY. Then same routine at night. But I never let it stop me from doing anything. Up until 40 I would snow ski all the time - coughing...
  3. M

    Husband with CF, declining health,lungs functioning at less than 20%,what can be done

    Like the others, I too have pseudo and not a problem - the difference could very well be that the pseudo is resistant to the available meds.
  4. M

    Portable O2 Question

    Same thing here and I have pretty good insurance. If I want a portable one - buy it myself.
  5. M

    Paying for Pulmozyme

    I do the pulmonzyme - nothing replaces it. I can tell when I have been off 3 days - everything gets really thick and hard to move again. The cost my pharmacy tab shows is somewhere around 5k per month. I pay $35 co-pay. I have GREAT insurance through CIGNA. Couldn't be happier with the way...
  6. M

    Tips for keeping energy up during IV's?

    REST. I am on 2 week course right now. Went to Renn Fest with honey on Saturday; left feeling AWFUL! Went to bed when I got home that night and pretty much stayed in bed until Wednesday morning. Felt much better. Your body heals while you sleep. Cannot stress the importance of good sleep...
  7. M

    Your sputum colours...

    my understanding is that Tobi is primarily affective against pseudomonas and the drug is not prescribed until you grow pseudo because if that happens, you don't want a resistance to be there.
  8. M

    joint pain

    CF related arthritis can flare up when you have an infection flare up. I take Naproxen twice a day always - it helps some. But the joint pain itself is not uncommon in CF patients. 10 - 20% of CF patients suffer from CF related arthritis. When mine flares up and is so painful I can't function...
  9. M

    Medicare as primary and home IV's

    Wow!! What a crazy mess. I have the large health plan - my husband is employed by Visa. We are not even mentioning the medicare (I am disabled) so we don't end up with a mess - bills going back and forth with no one wanting to pay. HOWEVER - would the medicare as secondary pick up some of...
  10. M

    Medicare as primary and home IV's

    Wow!! What a crazy mess. I have the large health plan - my husband is employed by Visa. We are not even mentioning the medicare (I am disabled) so we don't end up with a mess - bills going back and forth with no one wanting to pay. HOWEVER - would the medicare as secondary pick up some of...
  11. M

    Medicare as primary and home IV's

    Wow!! What a crazy mess. I have the large health plan - my husband is employed by Visa. We are not even mentioning the medicare (I am disabled) so we don't end up with a mess - bills going back and forth with no one wanting to pay. HOWEVER - would the medicare as secondary pick up some of...
  12. M

    Medicare as primary and home IV's

    Wow!! What a crazy mess. I have the large health plan - my husband is employed by Visa. We are not even mentioning the medicare (I am disabled) so we don't end up with a mess - bills going back and forth with no one wanting to pay. HOWEVER - would the medicare as secondary pick up some of...
  13. M

    Husband is not sure he can handle the stresses of CF life...

    My husband is a dream husband. I was diagnosed with CF - then married the most amazing man I've ever met. He supports me - he sets up my meds every morning on my nightstand as he steps out at 5:30 am to go to work. He calls and wakes me when it's time. He does the vacuuming (the dust...
  14. M

    Husband is not sure he can handle the stresses of CF life...

    My husband is a dream husband. I was diagnosed with CF - then married the most amazing man I've ever met. He supports me - he sets up my meds every morning on my nightstand as he steps out at 5:30 am to go to work. He calls and wakes me when it's time. He does the vacuuming (the dust...
  15. M

    Medicare & CFRD

    My husband has GREAT insurance through his company - so I have been lucky. However, he is hitting his 26th year there and can't retire because of my medical costs - would eat up everything we have saved. So just started looking into medicare - I don't even use it as secondary because I don't...
  16. M

    Medicare & CFRD

    My husband has GREAT insurance through his company - so I have been lucky. However, he is hitting his 26th year there and can't retire because of my medical costs - would eat up everything we have saved. So just started looking into medicare - I don't even use it as secondary because I don't...
  17. M

    Question for those who are knowledgable with working and ssdi !

    OK - I just went through this with SSA. Here it is - the first tier limit is $742.00 per month. You have 9 instances that you can go over that. After you have had 9 months that you made over $742, you go to the next tier. You then have 9 instances that you can make over $1000 per month...
  18. M

    Question for those who are knowledgable with working and ssdi !

    OK - I just went through this with SSA. Here it is - the first tier limit is $742.00 per month. You have 9 instances that you can go over that. After you have had 9 months that you made over $742, you go to the next tier. You then have 9 instances that you can make over $1000 per month...
  19. M

    Question for those who are knowledgable with working and ssdi !

    OK - I just went through this with SSA. Here it is - the first tier limit is $742.00 per month. You have 9 instances that you can go over that. After you have had 9 months that you made over $742, you go to the next tier. You then have 9 instances that you can make over $1000 per month...
  20. M

    I NEED YOUR INPUT PLEASE

    Ok. I have had PA for years. There is no getting rid of it. It does not go away. My CF specialist explained the culture/growth/antibiotic to me like this. I cough up mucus. It is cultured and shows sensitive to tobi. He uses tobi to treat it. Next culture shows a resistance to tobi -...
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