Cystic Fibrosis Forum (EXP)

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  1. K

    Heart

    Can someone please explain to me how CF causes the heart to fail and transplant may be needed? When I was sick in the hospital coughing up blood, they saw heart failure on the CT scan and told me I have a "leaky valve." Now that I am learning about the heart in one of my classes, the leaky valve...
  2. K

    Safest Way to Make Pets Part of Our Lives

    I say live life! I was dx at 15 so I never worried as a kid about these sorts of things. I grew up around animals and horses. Rode horses, showed, and competed. Even got thrown in the horse manure. I wouldn't have had it any other way. I believe its not what we expose our selves to because germs...
  3. K

    Coughing up blood

    http://cfnaturalhealth.weebly.com/blog/hemoptysis-coughing-up-blood Another CFer on this forum wrote this! Very helpful!
  4. K

    Coffee

    Epona, have you ever coughed up blood for days on end? I had 7 days of coughing up blood. I wasn't coughing up blood the whole day but I would have 1-2 episodes every day for those 7 days. I have done this another time also . I believe it lasted 6 days. It wasn't as bad as this time though. I...
  5. K

    Coffee

    What you said does all make sense. I wash I was able to tell when the infection comes besides the yeast infection. I otherwise feel normal and bam, blood! I quit the coffee. It also throws off my blood sugar levels. I love it and am addicted to it, but it is not worth it. I am addicted more to...
  6. K

    Coffee

    Its so funny. I had a craving last night for something. It took me a couple mins to figure out what I was craving. I had a taste in my mouth and that's what I wanted. It was lemonade. I went to the store and bought some lemons and put them in my water. I felt better after. I am going to keep...
  7. K

    hospitalized

    At first it was just pure blood. The last 3 days it has been bright red blood with mucus. They did do a culture and the doc said it was staph. He said it was "the good staph" and that ment no picc line. I asked him if he saw my MAC in the culture and he said "no we didn't test for that." This...
  8. K

    hospitalized

    I take back the no blood. Just coughed up some now. Im so frustrated, its been a week now of coughing up blood. Something has to be super wrong!
  9. K

    Coffee

    It was very weird because I never have high blood pressure. The blood pressure went down as I got admitted and started on meds. I am getting cramps in my les now and a little worried because I am dismissed now from the hospital. Does CF and low potassium go hand and hand? I don't know if im...
  10. K

    hospitalized

    Just got out this evening. Felling a lot better and so far no blood tonight! Yay! My only worry now is that when I came to the ER, my potassium was at 2.2. I guess that is life threatening. I am getting some muscle cramps now in my calfs. I bought some over the counter potassium, coconut water...
  11. K

    hospitalized

    Yes, Ive been taking the ADEKs and they work really well. My skin also cleared up from them which is an added bonus. They only thing I don't like is the sugar. Its a little too sweet for me on a daily basis but that's not a deal breaker for me.
  12. K

    Coffee

    Awesome!! I am going to get this! I see it has a beet on the front of the bottle. Ive been craving beets like crazy. Is this something that I can take just when the bleeding starts and not everyday? Im not sure if I can afford to take it everyday. I am excited about this though!
  13. K

    Pulmonary Edema Causes

    I believe this is what I have and being hospitalized for right now. Any thoughts? I wanted to bump this
  14. K

    hospitalized

    They are working with my doctor. Its a big hospital, they just don't have CF center. I guess they saw some heart failure on the ray. All the tests they have done have come out fine though. They are going to do a ultrasound next and release me if they goes well. I didn't know heart problems could...
  15. K

    hospitalized

    Hello, sat night I started coughing up blood after working a 7 hour shift on my feet. Earlier that day, I jogged a mile. I have been feeling fine besides the blood. The blood on sat night was a lot. Enough to fill two hands full. It stopped and I was fine sunday. Monday night I coughed up a...
  16. K

    Coffee

    I ended up getting hospitalized. I am here now. I feel fine, I just keep coughing up blood. Smaller amounts now. When I got in, they said my potassium level was very low, it was 2.2. My magnesium level was also low, unsure of the number. My blood pressure was high and I believe they said my...
  17. K

    Coffee

    I also am finding that I will get a yeast infection first, then cough up blood about week later. This is now the second time it has happened to me. I am wondering what the correlation between the yeast infection and coughing up blood. Any thoughts?
  18. K

    Coffee

    Has anyone given up coffee in order to reduce inflammation? I read on a couple websites that coffee is not good for those who have inflammation. I cultured Mac about two years ago and have had more episodes of coughing up blood. The other day after work, I went to sit down in my car and the...
  19. K

    MAC is back!

    I cultured Mac about 2 years ago. My CF doctor told me that they do not have evidence to prove weather it is more beneficial to treat or not treat. He said things are pointing towards treating but still not fully sure. For not I have chosen, not to treat. My lung function has still been steady...
  20. K

    lip cuts

    I spoke to my doctor today. He said his patients have had good luck with vitamin B3 and vitamin B6 to treat the lip slits.
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