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Thread: Latest CT Scan Results

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    Default Latest CT Scan Results

    Let me start by saying this will probably be more of a rant than anything else as I'm furious.

    My right lower and middle lobes are collapsed. In addition, the right lower lobe bronch and the bronch intermedius are not seen which is consistent with collapse or encasement.

    I've had serious shortness of breath since the procedure (bronch) was done Nov7th. The only imaging the pulm did was an X-ray on 11/14 which showed what appeared to be a large pleural effusion extending to the right hilum. It further said to consider a CT, but he made me wait until it had been 6 months since my last CT. I saw him the end of Nov, in Jan, and Feb. That's it. He listened to my chest and said normal breath sounds. How can that be with 2/3 of my lung not working on the left side? He did send me to have a needle aspiration of the pleural effusion, but when they did the ultrasound there was no fluid. Red flag anyone.

    Okay so I'm guessing what happened is that the bronchs didn't stay open without a stent thus causing no air flow to the the lower and middle lobe. From reading i think they can be reinflated, which is good news. The bad news is that it will require some kind of surgery.

    This doc is an interventional pulmonologist and is suppose to know what he's doing, but I feel like I fell between some pretty wide cracks. He even told my Rheumy that some of my breathing problems were due to anxiety. Please, yes I was anxious I COULDN'T BREATH.

    So what to do. I have an appointment with another pulmonologist at Mayo next week on the 17th. I saw him last week, but for some reason they didn't get my CT images and I didn't have the latest one to give him. He did a new pulm funct tests and a bunch of blood work. So it will be interesting to get his take on this mess too. If that isn't enough it appears that the CTX hasn't done a thing.

    Some of the blood results are: PR3 <.2 no scale, sed rate 25, ANCA must not be back yet as I didn't see it online. I don't know what other ones to look for.

    Okay I think I'll close the rant for now. But if anyone has any good advice please feel free to chime in.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Dear Cindy,
    I dont understand enough to tell anything about your lungs. it is good that you are going to Mayo for another doc. you need to have one who will give you whatever he can.
    what meds are you on ? did you get rtx ?
    I wish I can say more. thanks for sharing. we love you and want the best for you
    I am sendng to you lots of hugs and prayers, please update us
    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.

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    somthing to cheer you:

    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.

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    so sorry that this is happening to you I just fired one rheumy because I had a crp of 14 and a sed rate of 35 and I was on enbrel this went on for a year before the nodes showed up they do not isten As far as your breathing I hate when they say anxiety they have no clue what its like to not be able to breatheand you appear to be having serious problems and glad you are ranting it helps

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    Hi Cindy, I am very sorry to hear about your breathing problems.I lost my left lung to WG because docs did not have a clue.I live in Gainesville Florida,and go to Shands.The Mayo Clinic in Jacksonville is great.You are in good hands there.Shortness of breath causes a great deal of anxiety.Good luck.
    "You can tame anything,except the human tongue"

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    Quote Originally Posted by windchime View Post
    So what to do. I have an appointment with another pulmonologist at Mayo next week on the 17th. I saw him last week, but for some reason they didn't get my CT images and I didn't have the latest one to give him. He did a new pulm funct tests and a bunch of blood work. So it will be interesting to get his take on this mess too. If that isn't enough it appears that the CTX hasn't done a thing.

    Some of the blood results are: PR3 <.2 no scale, sed rate 25, ANCA must not be back yet as I didn't see it online. I don't know what other ones to look for.

    Okay I think I'll close the rant for now. But if anyone has any good advice please feel free to chime in.
    I can understand that you needed to rant, and that you are anxious and furious at the same time. Very good to write it all down, because stress is absolutely no good in this situation, but I guess you are aware of that too. Nevertheless you have to get the best treatment you can with this lung-problem.
    I think a PR3 lower than 2 is considered negative. At least I had that too, the last time my blood was checked, and so I am ANCA-negative now.
    Your appointment at Mayo sounds good, as everyone on this forum says Mayo is a very good clinic/hospital for GPA/Wegeners.
    Can you handle to wait another four days? If not maybe you should go to First Aid/Emergency Room in the nearest hospital.
    I sure hope everything will be solved soon.
    Please keep us posted. Keeping my fingers croossed for you.
    Living with WG/GPA since june 2010...

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    Oh wow, this sounds like a nightmare. I can't imagine that your breath sounds were normal if you have bronchial stenosis. As for correcting the stenosis, don't stress about it, it's actually really simple! They just put you under local anesthesia and use a balloon dilation catheter (guided with either a bronchoscope or fluoroscopy) to correct the stricture. I've seen a few of them done in our interventional suites; they usually are pretty quick procedures.

    But yeah, it's so hard to find doctors that (1) know what they're doing, (2) actually listen to you when you tell them something is wrong and (3) genuinely care about working with you to achieve the best outcome. I think seeing the pulmonologist at Mayo is a good call. I hope they can find some answers for you and get you back on the road to good health.

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    Cindy,OMG...get rid of that dr.I hate when I go to the dr. and the FIRST thing they say is you have anxiety. NO S*** !!! They should try living with this disease. And for your lungs to be collasped for soooo long and him to say everything is normal.You should put a pillow over his nose and mouth and ask if what its like not to breath and if he has anxiety !! I think I would report him to the medical board.What would have happened if you didn't have that ct scan done ?? With all the things that go bad after having those broncial things done ( like all the problems Phil has had after every one ) I don't think I would get one done. Why don't you call the Mayo clinic and tell them what is going on and maybe they can get u in sooner, better than waiting 4 days.
    Your new cat picture tells the story...scarry !!!!
    Life isn't about how you survive the storm, but how to dance in the rain !

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    My breathing is fine so there is no need to rush the appointment.

    Debra, you ranted almost as much as I did. Thanks for all the emotion expended on my behalf. I'm not sure what I'm going to do with him yet. I was going over some notes and he said my lungs were fully inflated on 11/27. I have to get the X-ray report to be sure if they were or not. My breathing has been bad since the bronch. I know I had a partially collapsed lung then (11/14). I can't imagine it reinflated just to deflate again. That doesn't make sense to me.

    Melly, I already had a balloon dilation and laser ablation which is why I'm in the situation I'm in. My lungs bleed a lot when they are messed with. I lost 50cc's of blood during the last procedure which the doc said is a lot for the lungs. He couldn't/wouldn't do the stents at that time because of the state my bronchs were in.

    ChrisTIn, Thank for your kind words I'll be able to make it until Thursday. My breathing has actually improved although I still have significant SOB when walking and my pulse ox drops.

    Keegan, I think he's sooo fired, but I will keep my appt with him at the end of the month because I want to hear his explanation of this mess.

    Titus3:2, Hi neighbor. I was very impressed on my first visit last week. They are very organized and try to work with the fact you are not from the area. I got all the tests done and saw two doctors in two days. It was great.

    Alysia: Thank you sweetie. I've been on CTX, but it appears to not be doing a damn thing for my lungs so I've taken it upon myself to stop it. It really made me feel bad at 200 mg and I had already decreased it to 100 mg. I'll see what Mayo wants to do.

    Thanks everyone for your replies I appreciate your love and support.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  10. #10
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    It seems that all these ballon dillation are only causing more troubles, are they ?
    Cindy, you are always the strong and supportive around here and your caring is heart warming. it is ok also to let us embrace you
    I read in another thread that you have fever. I am worried about you. please consider the options seriously. we love you and can't bear to see you like that
    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.

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