Search results

  1. J

    Special needs trust funds vs lump sum of money left to them?

    Does anyone have experience with this or no where I can get info?
  2. J

    Money left to you vs Special need trust funds

    I am currently on Medicare with special assistance. Should I outlive my mom, I will be left a decent amount of money but I would lose all my special assistance and go through my money willed to me quickly. Does anyone know anything about special needs trust funds? Do any of you have one?
  3. J

    Daptomycin Help"

    I am on week three of a six to eight week treatment of Daptomycin for sepsis and bactermemia. Has anyone on here been on this drug before? I am concerned with a few things. One in the PDR it says the stability of the Daptomyacin is on 48 hours once it is reconstituted which means the drug is...
  4. J

    CF Pharmacy or Medicare Part B

    I have been put back on Pulmozyme, hypertonic saline and Source CF vitamins and enzymes. The last time I was on any of these I was working and had insurance. I now have Medicare Part A, B, and D. with special medication assistance and then Medicaid as my secondary..or at least that is how I...
  5. J

    Hearing Loss

    As you know I have been asking about hearing loss. Last week after six months of being on Amikacian.. among other medications I became profoundly dizzy, ringing in my ears, felt sea sick and like there was water in my ears. Today I had my hearing checked and I have moderate hearing loss. but...
  6. J


    Hey I have been on Amikacian now for close to six months, One gram IV daily. In the past few days I have noticed I was dizzy, then I noticed a pressure in my ear and now I have ringing.... I have been a total slacker and have not had my labs drawn in a few weeks.. I did today, I called my nurse...
  7. J

    Cold medications

    I caught a nasty cold..Runny nose, sneezing and tons more secretions and coughing. I am already covered with IV antibiotics and have been for a while now but since I know this is viral and the post nasal drip is making me choke so hard I am throwing up which is sending me into Bronchospasm... it...
  8. J

    Muscle and Joint Pain/severe exhaustion

    I am at a loss, and truth be told a bit overwhelmed. I have been on IVs since October something but just started a more rigorous IV schedule a little over a week ago. Before I started treatment for the MAC and the other NTM and now the MRSA. I was feeling very, very tired. I seriously felt like...
  9. J

    Need Advice Please

    I so hope this does not come out like I am a whiner.. I am just totally at my wits end. I found out several months ago I am culturing MAC and another type of Mycobacteria. I have been doing treatment for several weeks. Today I found out my cultures are even stronger and the counts are even...
  10. J

    Trying to change signuature.

    I am trying to go into my profile and change a few things.. It says my password is not right but I know it is.. Any ideas how to change it?
  11. J

    Those who have done tratment for MAC or NTM

    I am as you know culturing MAC and Mycobacteria fortuitum. I don't know how long I have been culturing it we found it a few months ago... but we had to do three other cultures and then wait for the results and sensitivities to come back.... Anyway, I started my cocktail of meds on Friday...
  12. J

    Port Accessed and Shower questions

    In the past I have never done things by the book when it came to port dressing changes and taking a shower.. I always took my dressing off, took a shower with the needle in and then cleaned the area with the prep kit and reapplied a clean dressing. As a nurse and someone with common sense, I...
  13. J

    Culturing MAC

    Well, I have no idea where else in the world to post this or get feed back, I posted it on my facebook but I took it down as I was not thinking clearly when I posted it, and I sent my family and friends into turmoil. <br><br>My story is so confusing to everyone... I have been seen by a local...
  14. J

    Nasal Cannula Relief

    My nose is bleeding, is dry, and hurts from my nasal cannula. At home I have it run through the humidifier but when I am out, I have no choice but to use the green tanks.. It is so uncomfortable, I am only on 2 L so it should not be so bad . Even at home my nose is so sore, that I keep taking...
  15. J

    Chance for CFers in Philly and or sourrunding area to make $$

    Research Study Regarding Cystic Fibrosis around Bala Cynwyd/Philadelphia area We are currently conducting a market research study with PATIENTS (and CAREGIVERS) that are suffering from Cystic Fibrosis. We want to learn how they cope with their disease and how they manage their daily life...
  16. J

    CF Care

    A new friend of mine named Kelly has formed a great new organization called CF Care. She is a CFer herself and her vision is to get care packages for adult and children CFers who are in the hospital who do not have the personal items they may need. Though I am not a CFer, I sure do know what...
  17. J

    CF Chefs...

    <A HREF=""></A><br><br><br>I found this on the Boomer Esiason Foundation, Facebook page and I instantly thought of all of you CF moms and CFers who are constantly fattening up recipes for yourself or you child. It is a cool chance to add your recipe...
  18. J

    Shamless plug for Jerry Cahill

    Hey Guys, As you know last night I did a podcast with Jerry Cahill on "Overcoming Obstacles with a Chronic Disease"<br><br>Obstacles?? Do people with chronic diseases have obstacles? Certainly not their families either.. HA<br><br>I will tell you right now that you will never meet a more kick...
  19. J

    Podcast with Jerry Cahill Please give me input!!!

    Hey Guys,<br><br>Sorry I have not posted in a while but I still read on here every day or so. I keep tabs on all of you.<br><br>I was asked by Jerry Cahill to do a Podcast. He is going to be in my town next week. I am super excited to get to meet such an awesome guy. <br><br> Since some of you...
  20. J

    Pod Cast with Jerry Cahill

    Hey Guys,<br><br>Sorry I have not posted in a while but I still read on here every day or so. I keep tabs on all of you.<br><br>I was asked by Jerry Cahill to do a Podcast. He is going to be in my town next week. Since some of you have been with me from the beginning of being diagnosed with CF...