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    Who will join me in supporting Sarah Murnaghan?

    I have an idea though because I am not yet on a transplant list I will need support from the adult CF community. If you are on a transplant waiting list would you list your name among others who, in protest and solidarity of Sarah Murnaghan circumstance, would/will put-off your transplant...
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    Beyond the first year of a transplant ...

    Knowing that immediately post-tx a patient is to stay away from fruit/vegetables and flowers, or things that can carry mold or bacteria. However, what about well beyond the transplant, beyond the first year? If I live on a farm/ranch would I have to move to the city? Or would I just have to...
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    Beyond the first year of a transplant ...

    Knowing that immediately post-tx a patient is to stay away from fruit/vegetables and flowers, or things that can carry mold or bacteria. However, what about well beyond the transplant, beyond the first year? If I live on a farm/ranch would I have to move to the city? Or would I just have to be...
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    ADD Medications

    I am taking an Attention Deficit Disorder med and I find that it give me cotton mouth. This is uncomfortable as I don't like the sensation, but more so it makes me feel as though I am dehydrated, which as you all know in CF is not a good thing. If you are taking ADD meds which one(s) are you...
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    Lung & Pancreas Transplant

    I've not been able to find much information on receiving a double lung tx and a pancreas as well. Is it common? I have CFRD and i expected there would be a degree of frequency for such a procedure, but I have only been able to find one occurrence in my searches. Does anyone have know about...
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    Walking the fine line between spouse/partner/lover and caregiver.

    How do you be a partner without morphing into a caregiver or parental type roll? As a CF patient I know this is a tough question if you have been in a relationship that has suffered from it evolving from loving equals to patient and caregiver. I am in a curious roll as a CFer, such that my...
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    CF Flatulence or Gas

    I was wondering how much grief you all receive from either you friends, loved ones or spouses about your CF related flatulence or gas. By virtue of our condition we put out a particularly strong odor in our gas, and I've been given constant grief about how 'stinky' I am or 'are you farting...
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    The Transplant Decision ... (to be or not to be?)

    Hey Everyone, So I am going to have my first transplant (tx) meeting with a tx team in two weeks, to become better educated on a tx and consider getting listed. I am told that my Lung Allocation Score is about 37-38. Anyway, I keep going over in my head ... "Is it all worth it?" I am 37...
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    Lung Allocation Score

    If you are on a TX list or approaching one, what is you LAS? If you've had a TX at what score did you get TXed? Thanks. Grendel
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    Lung Allocation Score

    If you are on a TX list or approaching one, what is you LAS? If you've had a TX at what score did you get TXed?
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    Morbid question ...

    With FEV1 of 40%, and doing nothing to manage CF, no albuterol, pulmozyme, zithromycian, or digestive enzymes, how long would it take to expire? How long would it take you to expire if you just stopped fighting or trying? Grendel
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    Longevity of Lung Tx

    How long are lung-txs lasting these days? What is the average and what are some of the longer exceptions? Thanks Grendel
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    Loving and and being a Caregiver to a CFer

    Hello, Grendel (Lance) here. I am in love with Talia, and we were talking about getting engaged, and well it didn't quite go as planned. Talia has personal concerns she must address first, but beyond her own obstacles Talia loves me very much but is concerned about my CF -she says she is...
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    Transplant and FEV1

    My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to be...
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    Statistically at what FEV1 level is transplant observed?

    My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to...
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    V-Tach Adventure ...

    So on Friday morning I was very dizzy with high respiration and not feeling well. I went to the ER and I was in V-Tach. MY heart rate was 300 and they were freaking out. I was nervous as I am not use to heart issues. After an ambulance ride to the nearest heart hospital 60 miles away and 5...
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    Gaining weight

    Hello, To all those interested, I am 5 feet 6.25 inches tall (that quarter inch makes all the difference <img src="i/expressions/face-icon-small-wink.gif" border="0">), and I weighed in August approximately 122-125 lbs. I had hovered at that weight for approximately 4-5 years, going up and...
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    Divorce update ...

    Hello All, So Kate, my ex, tells me our divorce papers are processing and I should receive a letter officiating the divorce, which feels significant, but more in an 'ending chapter' kind of way. I am well now, well and on my own. Exercising regularly, except for the 2 weeks where I dodged the...
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    CF and Divorce

    I am 35 w/CF and recently divorced. I never saw it coming, but my wife cheated on me with her rich married boss (with children), and decided to stay with the rich guy. Her claim was that she couldn't take the stress of my CF, the financial challenges it poses, and the overwhelming idea that...
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    Divorce update

    (UPDATE) Well, my wife has been more than struggling with the difficulties of CF and the idea of divorce and the complexity of being a lover and or a caretaker, she has been attempting to manage her time over the past 30-40 days to commit adultery. YES! She has been dating and sleeping with...
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