• Jennifer Loflin became a registered member 1 month, 3 weeks ago

    • Hi Jennifer,
      Welcome to the forums. I just read through a little of your profile and it sounds like you have quite the stories and battles that you have won so far in your life. I can’t even begin to imagine going through radiation and therapy for lymphoma and then receiving a diagnosis like this. There must be so many questions going through your mind. I am really glad that you found these forums and please let us know how we can be of the best support to you. Feel free to post on here any time with updates or a forum topic. Our members are really great, caring people. I am one of the forum moderators along with Colleen Steele. I also use oxygen with activity and I am 28 years old. Looking forward to chatting with you more here and getting to know you.
        • Did you have to use oxygen 24/7 at first? I was just diagnosed in mid April after being hospitalized for pneumonia. I also went into Afib. Then on top of everything else I developed lower limb, left hand/arm and abdominal edema. I was up 15lbs at my worst. Now I’ve lost the fluid, on lasix, and have lymphedema treatments for my arm. I’m also on 2L o2 and I take Sildelafil 20mg three times day for lungs. I also have a PleurX catheter in and am drained every other day. Take off about 300cc each time, which is down from 800-1000cc 6 weeks ago. I’m trying to see how long I can go without oxygen and it seems at rest at 30 mins I sat at 88, if I have any exertion it drops to 78. I’ve also developed both of my ears filled with fluid and I can’t hear! I feel like I’m under water. I think it’s from oxygen drying out my sinuses. Whew that’s all for now!!
        • Welcome Jennifer to the PH Forums! Adjusting to the new normal is not easy but in time you will get there. I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany, know if you have any trouble using our site. I look forward to learning more about your personal journey.
            • Stupid question, how do I put my picture on my profile?
                • Not a stupid question at all. I had to go in and remind myself how to do it. On the right hand side you will see your shadow person under who is online. Click on your shadow and it should take you to your profile. Once there click on profile then select change profile picture. Select your file to add the picture that you want. I hope this makes sense. Let me know if it works or if you have more questions.
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