Search results

  1. J

    sinus problems - did anything help?

    Hey, I have the same issue. My rhinologist did reconstructive surgery in my nose to make it more accessible so that he can clean them out during an office visit, it is great. Granted I am chillin' in the ED right now for sinus issues :(. That said I think that surgery is good given the ease and...
  2. J

    new clinic-I do not like-anyone else go to UW Seattle?

    With the exception of my current exile to St. Louis for grad school I have always been at UW. Sounds like normal new patient frustration, most new patients have it when going to a new place,, I had it when I move out here. It will get better. Do feel free to tell them your concerns, they will...
  3. J

    Any smart storage solutions?

    I personally have no experience keeping things organized, the one thing I do do is keep a dorm fridge specifically for meds and beer. I think that if I were pressed to I would make an armoire to fit all my stuff in with shelves for pill bottles, space for rt stuff and cloth baskets for neb...
  4. J

    Hoseless CPT vest

    I got the Afflo through SSI and my student health insurance plan. It was covered because I have not gotten a new vest in over 5 years and the tech is new so mine was covered. It is a lot more comfortable for me because the old vests used air compression and oscillation which hurt my port...
  5. J

    Ellipticals vs running ... Question about swimming

    I swam for years and am trying to get back into it. It was wonderful. Way more comfortable than other aerobics. The only problem I had was with APBA getting exacerbated because the warm & moist conditions in a pool house have a high risk of having mold, so you should exercise due diligence in...
  6. J

    Hoseless CPT vest

    Funny, I was just talking to the Afflo rep in St. Louis today about how they can reach us outside doctor's offices.
  7. J

    Existential Crisis

    Sounds like some professional counseling would be a good idea, your CF center should have established relationships with clinicians whom they can refer you to. I would also recommend talking to your human resources representative about preparing for the impact CF might have on your ability to...
  8. J

    Passing out while coughing

    So I have noticed lately that when I get coughing spasms then I black out for a few seconds anyone else have this problem? B
  9. J

    Seriously Check your meds

    One time they sent me home with a TPA vial of dilaudid.... had to report that one to the feds lol.
  10. J

    Feeding Tube Question???

    Keep in mind that they could be unrelated, a lot of us get obstruction, obstopation, or intersusseption (small intestine slipping into the large intestine) as a normal result of CF. So it could very well be the case that you just have to see a GI doc and get a regimen to keep your bowels moving...
  11. J

    Just moved to St.Louis and it's hot!

    Hey everybody, So I just moved to StLouis from Seattle for Grad School at Washington University. My doctors said I would be ok living out here, but so far the heat and humidity are doing everything in their power to send me to the hospital. I just started some more dietary supplements, but I...
  12. J

    Advice wanted

    Thanks for the advice you two, I will take it. B
  13. J

    Advice wanted

    Hey all, So I was wondering if anyone has had a family member who seals their pain meds from them? I am currently having that problem and I don't know what to do about it. My brother 38 is stealing my pain meds that I use for my chronic belly pain he has done this at least once before and I...
  14. J

    DIOS/partial blockage & admission

    I had this keep happening to me and it turned out to be alot of scar tissue around my intestines. So if you have had abdominal surgery it might be good to ask about that. Best wishes, B.
  15. J

    Seattle Washington

    It is the best place. I love it here. The hospitals are great too. We have a good healthcare infrastructure, UWMC and Seattle Children's are two of the best hospitals in the country where alot of research is being done. Plus the local hospitals in Tacoma, Everett, & Bellingham are also pretty good.
  16. J

    Anyone with CFRD who is pancreatic sufficient?

    I would ask about getting continuous glucose monitoring for cf related diabetes, as well as an assessment of your digestive enzymes. It would probably be wise to ask what the warning signs for complications like pancreatitis would look like if that were to come up down the road. Let us know...
  17. J

    Body Ache

    So far as I have heard it depends upon the person, some of us have body pain from the CF, some don't. However swelling of joints and back pain is in CF's list of possible symptoms.
  18. J

    Body Ache

    Yep, I take extra vitamins and magnesium for it and it helps a lot. I guess it has to do with the swelling CF can cause and the different salts that it messes with. I had this and really bad muscle cramps, but the magnesium really helped me. They offer me anti-inflammatories, but I don't want to...
  19. J

    CF Services Pharmacy FYI

    A couple thoughts, Most of the Kroger/Fred Meyer/QFC Pharmacies are good, I would question their access to Kayston, but they have really good service if you are a regular and they have gone out of their way to get me my meds before... I live in Washington though and I can get any of my scrips...
  20. J

    Just found out I have MRSA

    Honestly we all have it. I had it, many of the doctors and nurses I know have had it. All i can say id to just do what they tell you and not to worry about it too much, stressing will hamper your immune system. Best of luck. B