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  1. Replies
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    CF Roundtable Newsletter is now free!

    Hi everyone! USACFA, the group who publishes the quarterly newsletter for adults with CF, CF Roundtable, has an exciting announcement to make: subscribing to CF Roundtable is now FREE! Of course, it...
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    CF Roundtable LIKEAPALOOZA

    This week officially kicks off LIKEAPALOOZA!!! Our goal at CF Roundtable is to provide support, information, and communication within the CF community. Please help us to spread the word by getting...
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    Hi Dave, Yep I'm on Dexilant which is similar...

    Hi Dave,

    Yep I'm on Dexilant which is similar to Prilosec. It has helped but must not be enough. The motility test was a pain but I did get through it. Hope things go well for you on your journey...
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    Esophageal motility issues and transplant

    Hey all, I need some input/advice etc. My transplant evaluation at Duke was last week. They called yesterday to say I'm not a candidate due to esophageal motility issues due to my reflux. Has anyone...
  5. Esophageal motility issues and transplant

    This is a repeat post of one in the tranplant section but figured not everybody goes to that section.


    Hey all, I need some input/advice etc. My transplant evaluation at Duke was last week. They...
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    Hi Ana, I was diagnosed with rectal cancer...

    Hi Ana,

    I was diagnosed with rectal cancer over two years ago. I'm almost two years cancer free and am being evaluated for transplant at the end of this month. At the time of my diagnosis my...
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    Hey Lena, I was in my early 20s when I got a...

    Hey Lena,

    I was in my early 20s when I got a massive infection and went into right heart failure. My FEV1 was a little less than 40%. I was also on O2 24/7 and listed for transplant. To get ready...
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    Hi Martha. I will be at Duke this November too....

    Hi Martha. I will be at Duke this November too. My evaluation is Nov 26-30. This is my second time to be evaluated by Duke. After my first evaluation I was diagnosed with rectal cancer and have not...
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    I have tried both the G5 and the ElectroFlo 5000....

    I have tried both the G5 and the ElectroFlo 5000. The ElectroFlo is much better in my opinion. Also, the free trial is great. You can find all the information on their website:...
  10. Hey All, I'm in somewhat of a similar boat. I...

    Hey All,

    I'm in somewhat of a similar boat. I was evaluated 2 years ago and at the time FEV1 26% and O2 1L with sleep only. During the tx evaluation they found out I had rectal cancer. So after it...
  11. Hi Mallory, That is certainly a tough spot to...

    Hi Mallory,

    That is certainly a tough spot to be in. Have your doctors discussed with you the possibility of transplant? I don't want to freak you out but just want you to consider all the...
  12. Pre and post surgery most centers require that...

    Pre and post surgery most centers require that you attend their pulmonary rehab program. At Duke rehab is five days a week. So it might make sense to relocate closer for a few months depending on how...
  13. Hi there. Another statistics website that may be...

    Hi there. Another statistics website that may be a little easier to navigate is found here: http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LU

    Hope this helps.
    Steph
  14. Thread: Centers in TX

    by PinkPigg
    Replies
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    1,359

    Centers in TX

    The SRTR site has all the current statistics for centers doing lungs across the US. Here is the link to access the data:

    http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LU...
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    I need a change ...

    <div class="FTQUOTE"><begin quote>The last three weeks I am getting out of breath quicklier. I took part in a photography workshop ( my passion) this weekend and afterwards felt like fainting. And...
  16. What's your lung function and what can you do with it?

    I've been around 26% for the past three years. I stopped working three years ago to focus on my health. I'm still pretty active and try to work out at least five days a week. I totally agree on the...
  17. What's your lung function and what can you do with it?

    I've been around 26% for the past three years. I stopped working three years ago to focus on my health. I'm still pretty active and try to work out at least five days a week. I totally agree on the...
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    1,351

    Pleurisy or lung inflammation

    Hey Mamerth. I've had pleurisy a couple of times. It hurts on inhalation which is a real "pain" since you inhale so freaking often. The predinisone will help but some of it will just take time to...
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    11
    Views
    1,351

    Pleurisy or lung inflammation

    Hey Mamerth. I've had pleurisy a couple of times. It hurts on inhalation which is a real "pain" since you inhale so freaking often. The predinisone will help but some of it will just take time to...
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    2,696

    arm vs chest port

    Similar to breatheforher's daughter, I also have an underarm port. I love it because it can't really be seen unless you have a really low cut tank on and also have your arms lifted. Access is easy as...
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    31
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    2,696

    arm vs chest port

    Similar to breatheforher's daughter, I also have an underarm port. I love it because it can't really be seen unless you have a really low cut tank on and also have your arms lifted. Access is easy as...
  22. Replies
    31
    Views
    2,696

    arm vs chest port

    Similar to breatheforher's daughter, I also have an underarm port. I love it because it can't really be seen unless you have a really low cut tank on and also have your arms lifted. Access is easy as...
  23. Replies
    31
    Views
    2,696

    arm vs chest port

    Similar to breatheforher's daughter, I also have an underarm port. I love it because it can't really be seen unless you have a really low cut tank on and also have your arms lifted. Access is easy as...
  24. What is the best type of oxygen for portable use

    Here are the different sources of oxygen:

    Compressed gas cylinders - the green and silver cylinders
    Liquid oxygen - comes in big tall containers that look like R2D2
    Oxygen concentrators - a...
  25. What is the best type of oxygen for portable use

    Here are the different sources of oxygen:

    Compressed gas cylinders - the green and silver cylinders
    Liquid oxygen - comes in big tall containers that look like R2D2
    Oxygen concentrators - a...
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