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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 is easier on us financially if you choose the online subscription option, but we are offering the...

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 friends with CF, caregivers, and medical professionals to "LIKE" our page. Thanks so much for all...

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 with all of this :) Peace, Steph

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 had similar issues? Is there any effective treatment? I know I've asked some of this before but...

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 called yesterday to say I'm not a candidate due to esophageal motility issues due to my reflux. Has...

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 physician mentioned he had another CFer that was post transplant with some form of colorectal cancer. He...

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 for transplant I started exercising at home. This was back in the days before they had pulmonary...

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 been eligible to be listed again until now. The evaluation process is quite hectic. By the end...

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: http://www.medsystems.com/ They are really wonderful people too. Sharon handles their sales/customer service and she...

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 was cured I had a two year waiting period before being able to be re-evaluated. Now that 2 years...

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 possibilities. It's much easier to get evaluated early rather than late in the game. Peace, Steph P.S...

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 often you will need to visit the center pre and post transplant. Steph

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

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 It appears that Houston does a large volume of transplants so they might be worth looking into as...

<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 recently I am experiencing a headache after waking up from sleeping. </end quote> Hey Julie, Your...

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 dichotomy thing. Today was a "bad" day and I took a nap and was pretty lazy after going to...

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 dichotomy thing. Today was a "bad" day and I took a nap and was pretty lazy after going to...

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 calm down. I took ibuprofen to help with the pain & inflammation as well. When I've gotten...

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 calm down. I took ibuprofen to help with the pain & inflammation as well. When I've gotten...

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 long as you get an extension on the IV line when it's accessed. I've only found one negative so...