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  1. Thank you cam and Hail2pitt. You both have made...

    Thank you cam and Hail2pitt. You both have made me feel much better about this whole situation. It's tough, we have been going to CHP for 21 years, he sees 6 specialists, so it's kinda our home...
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    Pleuredesis side effects?

    H guys. I was wondering if any of you have had a Pleuredesis procedure. My son recently had one, and unfortunately struggles with communication. He keeps saying when he breathes it feels like when...
  3. Thank you Beautifulsoul for responding. I spoke...

    Thank you Beautifulsoul for responding. I spoke with one of the nurses who has been there forever and was given this info. I was also told clinic is at Faulk and admissions are at shadyside. I...
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    Shay, maybe I'm confused but is your daughter...

    Shay, maybe I'm confused but is your daughter currently a patient at children's hospital Pittsburgh or Philli? I thought you meant philly when you said CHOP.
  5. Transitioning from children's hospital Pittsburgh to falk clinic

    It so funny that someone asked a similar question in a separate thread. Just curious if anyone out here sees their cf doc at the falk clinic in Pittsburgh, PA. My son is 21, turning 22 soon and his...
  6. Thread: Pleuredesis

    by Jshet22
    Replies
    4
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    1,936

    Thank you so much. Today is a much better day.

    Thank you so much. Today is a much better day.
  7. Thread: Pleuredesis

    by Jshet22
    Replies
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    1,936

    Thank you so much. I'm so glad you have done...

    Thank you so much. I'm so glad you have done well with yours. They performed the mechanical Pleuredesis and removed a portion of the top of his lung and a smaller portion in another area. He is on...
  8. Thread: Pleuredesis

    by Jshet22
    Replies
    4
    Views
    1,936

    Pleuredesis

    Hi guys. My son is n the hospital with his second spontaneous pneumothorax n the left side. He woke up with chest pain and tightness. After a chest x Ray at a satellite place he was taken by...
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    Thank you so much for replying. The doc called...

    Thank you so much for replying. The doc called this morning and said he's gonna put him on tobi for 28 days to see if that rids it. He will make a further decision based on the results of the next...
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    Pseudomonas fluorescens

    Hi guys. Been awhile since I posted but was Just wondering if there is any need for concern when child cultures pseudomonas fluorescens? It's the first time and I called the clinic but sometimes...
  11. Thread: Got new lungs

    by Jshet22
    Replies
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    3,619

    Amazing news! Wishing you all the best.

    Amazing news! Wishing you all the best.
  12. Thread: Tune up

    by Jshet22
    Replies
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    8,651

    Just wanted to add a quick update. After 4 days...

    Just wanted to add a quick update. After 4 days inpatient with no improvement on pft's , they let us come home to finish up his antibiotics. I feel completely comfortable giving his Meds and...
  13. Thread: Tune up

    by Jshet22
    Replies
    31
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    8,651

    mom2two, thanks for the YouTube idea. We do...

    mom2two, thanks for the YouTube idea. We do have an amazing visiting nurse that I'm sure will be quite helpful
  14. Thread: Tune up

    by Jshet22
    Replies
    31
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    8,651

    Thank you for the encouragement Aboveallislove. ...

    Thank you for the encouragement Aboveallislove. I appreciate it. I'm sure i'll get the hang of it. I'm just glad he only has to stay 48 hours. He gets stressed when out of his environment and...
  15. Thread: Tune up

    by Jshet22
    Replies
    31
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    8,651

    Thank you LL, I appreciate the info. I'm sure...

    Thank you LL, I appreciate the info. I'm sure I'll learn everything i need to know. I know keeping things sterile is number one priority. I'm just nervous, lol. Thanks again.
  16. Thread: Mucus in urine

    by Jshet22
    Replies
    12
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    6,181

    Just wanted to share an update. We saw my sons...

    Just wanted to share an update. We saw my sons GI and asked about the mucus in his urine. He said that typically means he has a uti. But since he tested negative for bacteria and is not having...
  17. Thread: Tune up

    by Jshet22
    Replies
    31
    Views
    8,651

    Tune up

    Hi guys. Well after having pft drops since December and finishing a two month round of bactruim, my son is going in on Monday to start IV antibiotics. He has a port and the plan is for him to stay...
  18. Thread: Osteoporosis

    by Jshet22
    Replies
    4
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    1,992

    Thank you so much everyone. I spoke to his...

    Thank you so much everyone. I spoke to his endocrinologist, and he feels that If an x Ray is done, and there is no sign of disease in his jaw, then he has a low chance of developing it after the...
  19. Thread: Osteoporosis

    by Jshet22
    Replies
    4
    Views
    1,992

    Osteoporosis

    Anyone getting IV Pamidronate for osteoporosis or low bone density? If so, have you needed a tooth extraction or do you know how risky it is to have one? My son is having severe pain from a wisdom...
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    Thank you everyone for the great advice. Between...

    Thank you everyone for the great advice. Between the cf doc and GI doc we have decided when he is going to be out for awhile and it's hot that we will run pedialyte through his g tube to give him as...
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    Your drawing is incredible. I just voted and...

    Your drawing is incredible. I just voted and shared on my FB page. I hope you win, good luck.
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    Hey, thanks for the reply. I'm hoping this...

    Hey, thanks for the reply. I'm hoping this improves as summer wears on. He is not due back at clinic until the end of July, but if this continues I'm going to atleast make them aware of it. Thanks...
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    Now that summer is here

    Hi guys, quick question. Any of you or your children become extremely exhausted after spending an afternoon outside when it's warm? My son seems to get this way after we come in and it continues...
  24. Thread: Mucus in urine

    by Jshet22
    Replies
    12
    Views
    6,181

    Thank you everyone for the replies. I did put a...

    Thank you everyone for the replies. I did put a call into gi doc and have heard nothing back so I am taking it as it isn't anything too worrisome. If I get any further feedback, I'll let you know.
  25. I am so glad it's working for you. My son tried...

    I am so glad it's working for you. My son tried them about 6 months ago, and unfortunately they did not help. Our clinic has said they are seeing about a 50/50 chance with patients. Half it is...
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