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Thread: 20 year old son

  1. #161
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    Quote Originally Posted by Aneinu View Post
    *After analyzing the cat scan again, they think it might be blood, which is indicator of diffuse alvrolar hemorrhage, which is what he had last time.

    They are scheduling bronchoscopy for tomorrow morning.


    This will determine if blood is from the lung.


    If it is, they might need to change treatment, for it might be an indicator that the rituximab did not work.



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    Praying for the best. Please update us.
    If not rtx I guess it might be ctx, and I think that it works much faster. So I hope things will turn out for good eventually.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #162
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    Firstly, thank you again.
    The bronchoscopy was cancelled, for they see no reason to think there's an outside infection.
    Except that they just walked in and said they will be doing it.
    And now they reversed again.
    We need to make a decision shortly.
    The doctors are kinda leaning against rtx because of his aversion history and because he had a recent dose and it did not seemingly hold, and that it takes several weeks to kick in.
    The alternative would be cytoxan, with it's scary side effects lurking. It would require to bring in andrology department, and that will take a fragile, beaten, broken young man over the edge.

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  3. #163
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    They will be administering the rituximab today.

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  4. #164
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    My heart is going out to your son and to you... there are times in which we need to give it all to God and trust in him .... עננו ....we keep on praying. Good luck with the rtx today.
    Last edited by Alysia; 02-16-2017 at 03:39 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #165
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    Quick update:
    They started rtx very late.
    About 4:00.
    Increasing at half the speed of normal.
    Thank God he is handling it well.
    Should be finished by 2:00 am.
    He was short of breath a bit in afternoon, but otherwise feeling good.
    Thank you
    I once again cannot say how fortunate we are to have dr langford as his doctor and Dr villa-forte as his hands on doctor.
    They are so caring and patient.


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  6. #166
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    Glad to hear he's hanging tough and that you're feeling better about the situation.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  7. #167
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    Quote Originally Posted by Aneinu View Post
    I once again cannot say how fortunate we are to have dr langford as his doctor and Dr villa-forte as his hands on doctor.
    You've said volumes with this sentence! If you are comfortable with the doctors, that is half the battle with this stupid disease!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  8. #168
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    Quote Originally Posted by Aneinu View Post
    The alternative would be cytoxan, with it's scary side effects lurking. It would require to bring in andrology department, and that will take a fragile, beaten, broken young man over the edge.

    Sent from my SM-G920V using Tapatalk
    It breaks my heart that young people are dealing with this. There are many young people in a Facebook group if he'd like to connect with them. People in their teens and twenties. His age. Maybe it would help. Many are doing well. I hope the rituxan and pred helps him soon.
    God bless him!
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  9. #169
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    We were very pleased with the doctors in UH as well.

    The rtx was completed and he took it well thank God. The main thing they are watching now is the lung/breathing issue. Baseline is 14. He came in at 12, dropped to 11.8 and now 11.2. Pulse ox is continually in mid 90's, so that is good, although he has shortness of breath at times (which he wants to disguise, for he knows that is the key to discharge). They will probably need another CT scan on lungs for ultimate discharge. Actually, scratch that. Rheumy fellow just came in and said that they wanna see hemoglobin stable before discharge. CT scan probably only if things get worse. His breathing is good, but not perfect (whose is?). Coughing is still there. Interesting that his joints are feeling better, which we assume is result of steroids.


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  10. #170
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    Quote Originally Posted by Aneinu View Post
    We were very pleased with the doctors in UH as well.

    The rtx was completed and he took it well thank God. The main thing they are watching now is the lung/breathing issue. Baseline is 14. He came in at 12, dropped to 11.8 and now 11.2. Pulse ox is continually in mid 90's, so that is good, although he has shortness of breath at times (which he wants to disguise, for he knows that is the key to discharge). They will probably need another CT scan on lungs for ultimate discharge. Actually, scratch that. Rheumy fellow just came in and said that they wanna see hemoglobin stable before discharge. CT scan probably only if things get worse. His breathing is good, but not perfect (whose is?). Coughing is still there. Interesting that his joints are feeling better, which we assume is result of steroids.


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    Sounds all so similar. I just wanted to come here to wish you guys well and that this can be beat. I am 27 now, was diagnosed at 22. First two years were rough. After my final round of Rituxan it took me about a year to get my breathing and coughing under control. I run up 3 flights of stairs now about 15 times a day. Doesn't wind me in the slightest. I still cough more than the average person. However I do very well, work full time... no complaints. He's got this!

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