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Thread: Coronavirus and GPA

  1. #31
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    Default Re: Coronavirus and GPA

    I read that the USA has now more confirmed Covid-19 patients then China. Most contaminations are in New York city.

    https://gisanddata.maps.arcgis.com/a...23467b48e9ecf6

    I sure hope everybody on this forum was able to take precautions, and to talk through with the doctor in charge, what is best in your specific case.
    Stay strong, everybody!
    Last edited by [email protected]; 03-27-2020 at 10:46 AM.
    Living with WG/GPA since june 2010...

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  3. #32
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    Default Re: Coronavirus and GPA

    Nurses with GPA who are immune suppressed - are any of you working in acute care?

  4. #33
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    Default Re: Coronavirus and GPA

    I've got my labs scheduled for Monday and I'm terrified. My rheumy is following extreme protocol. No one is allowed in the waiting room (people wait in the car). They text when you can come in: only one patient allowed in the lab at a time. Most appointments are now virtual (including one I had this week), so apart from people getting infusions, the staff, the office is empty. Can't do labs virtual though. I don't know what to do. I know we are supposed to have our labs every 4-6 weeks. I haven't had mine since mid-Jan. Doc thinks it would be smart to get labs done now. Wife thinks I should go now before this virus peaks in 2 weeks. I'm thinking I feel well and monitor my urine from home, so why bother.

    Has anyone else had lab work during the zombie apocalypse?

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  6. #34
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    Default Re: Coronavirus and GPA

    It's a tough call. Your wife has a good point, but as symptoms don't appear for 5 days, the people who are contagious now won't even know it. But this isn't going to go away any time soon, so how long realistically would you chance going without blood tests??
    If I was in your position, I would go Monday as it's probably going to be the "safest" period for a long time. Then if everything seems stable, I'd try and leave my next blood tests as long as possible.

    I was fortunate with my blood tests as all clinics have switched to telephone (except for the most recent transplant patients), so the blood test room was empty with nobody waiting.
    Diagnosed April 1995

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    Default Re: Coronavirus and GPA

    Quote Originally Posted by richard052018 View Post
    I've got my labs scheduled for Monday and I'm terrified. My rheumy is following extreme protocol. No one is allowed in the waiting room (people wait in the car). They text when you can come in: only one patient allowed in the lab at a time. Most appointments are now virtual (including one I had this week), so apart from people getting infusions, the staff, the office is empty. Can't do labs virtual though. I don't know what to do. I know we are supposed to have our labs every 4-6 weeks. I haven't had mine since mid-Jan. Doc thinks it would be smart to get labs done now. Wife thinks I should go now before this virus peaks in 2 weeks. I'm thinking I feel well and monitor my urine from home, so why bother.

    Has anyone else had lab work during the zombie apocalypse?
    The lab seems to follow a good protocol: patient waiting in the car till asked to come in by textmessage, no one in the waiting room. My only concern is the staff. Are they tested, do they take strict hygienic precautions, do they have protecting masks on their faces, do they follow hand cleaning procedure?
    If you hestitate to go to the lab and still have questions, in your case I would call the lab and ask what precautions the staff takes to minimize the risk any further. People (also healthcare workers) can be contagious even if they don't have symptoms yet.
    Living with WG/GPA since june 2010...

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  9. #36
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    Default Re: Coronavirus and GPA

    The lab is at the rheumy office, and they are all aware of the vulnerable population they service. The protocol is very strict. My appointment is at opening time. I guess all I can do is go for it and hope for the best or skip the labs and hope the GPA stays at bay.

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    Default Re: Coronavirus and GPA

    I don't get on the forum that much anymore. That doesn't mean I'm totally well or terribly sick, but rather I'm just overwhelmed by doctor appointments and trying to keep my drugs in stock. I'm pretty tired of all things wegs. I'm glad there are super members who are keeping the forum going. I stop in once in a while to just look things over and read some of the posts, but I have little to add to what you guys have already said. Good job guys/gals! Its appreciated by a many, many people....
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  12. #38
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    Default Re: Coronavirus and GPA

    I went in two days early for my Pentamadine treatment for same reason. We had no confirmed cases in town yet or suspected cases being treated in the hospital so this was as safe a time as it is likely to be for next few weeks. Not sure how things will look in a month or what i will do or can do then. But i am fearful about having to go to the ER for any reason or any other medical clinic. Most are closed here so not too likely to happen very soon.
    Knowledge is power! Wisdom is using it to make good decisions!

  13. #39
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    Default Re: Coronavirus and GPA

    Thank you for being here, my beautiful friends, and for your encouragement, kindness and wisdom. I love you. Sorry for not writing earlier. I've been so scared in the last month that even reading and writing is an effort.


    It is going to be a very long post. Sorry.


    Things are getting worse too fast in Israel too. This morning 3035 cases and 12 deaths and the numbers are up every few hours. We are tiny and crowded country and the health system is overloaded on a regular basis, so things are rough.


    I work from home and my kids also learn and work from home. I am grateful for that and I tell them that we are in our own Noah's Ark, but with cats (5 cats).


    I have not been to a public place since March 12 and it was only for a fast shopping. Since then I do online or phone delieveries. On March 9 I had a lazer procedure to fix my secondary cataract which went well. There were too many people in the eye hospital and I was scared like hell to be there. I hope I didn't contracted the virus there.


    My colitis is reacting to the stress and I have diarreah waking me up very early every morning.


    My WG is also reacting. My dry cough is getting worse. It was so bad a week ago with shortness of breath (but no fever) so I asked for a video consultation with a dr. She was great and prescribed all nebulizing meds she could and told me to try and see which one works the best.


    The problem with covid19 is that it has few symptoms similar to WG: coughing, shortness of breath, fatigue, aching body and even loss of smell and taste.


    So I was scared like hell that my coughing and shortness of breath might be covid19. I don't mind being sick as much as I dread infecting my kids or my parents. My parents are old and live near and need me to be there for them every few days.


    The dr. On the video said that it is probably WG. She prescribed also Azenil which helped although not all the way. The shortness of breath has almost gone. Intersting thing is that at that night they said on the news that Azenil might be helpful for covid19.


    After finishing the Azenil I elavated my pred from 5mg to 10 mg. Today is day 5 with 10mg pred. It helps but still not all the way. My dry iritating cough is still here. Last time it went away only after the rtx.


    I need to get rtx at the end of April. But I am not going anywhere public until the plague is over. Just thinking about it makes me run again to the toilet. No way.


    I wrote an email to my wg dr. And asked if I can get rtx at home. He wrote back kind of angry, saying that I need to get it in a hospital setting because of possible side effects. I've become angry too, thinking (but not writing to him), "Come on, you trust the health system. I DO NOT ! The virus is every where." The risk to be infected is bigger then the risk of rtx side effects at home. I will have to set a video meeting with him to discuss my options and risks. They worked in a foolish way and in almost all the hospitals they got medical teams isolated or sick because of an exposure to the virus.


    My coughing makes me more stressed. Might be Wg flare or smoldering. Sometimes I am still afraid it might be covid19. Although my family is healthy, Thank God, so I guess it is not. Also, They will not check me, I guess, and I don't want to be checked. I can get infected from the one who checks.

    I have all meds for nebulizing but I dont know which one to use, how much and when. I sent a fax to my lungs dr. But he didn't phone me back. (Yet ?)
    I guess docs are overwhelmed.


    The meds that I have are :
    Saline bottles 5ml
    Aerovent 0.25ml
    Terbulin 10ml
    Budesonide 1mg


    Does any one here use any of those ?
    I don't like the idea that the video dr. gave of just trying. But if my lungs dr. will not call me back, I guess I will have to try. I am tired from coughing.



    Through all those stressful days, at least, I am glad that my beautiful Phil is not at risk anymore and is safe with Jesus.


    I also find comfort in reading psalm 91, I quote few powerful verses to lift us up:


    "Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
    I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”


    Surely he will save you
    from the fowler’s snare
    and from the deadly pestilence.


    He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart.


    You will not fear the terror of night,
    nor the arrow that flies by day,
    nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.


    A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.


    If you say, “The Lord is my refuge,”
    and you make the Most High your dwelling,
    no harm will overtake you,
    no disaster will come near your tent.


    For he will command his angels concerning you
    to guard you in all your ways;
    they will lift you up in their hands,
    so that you will not strike your foot against a stone.


    “Because he loves me,” says the Lord, “I will rescue him;
    I will protect him, for he acknowledges my name.
    He will call on me, and I will answer him;
    I will be with him in trouble,
    I will deliver him and honor him.
    With long life I will satisfy him
    and show him my salvation.”

    Amen.

    Stay safe, my friends. May Our Lord protect you and bless you.

    P.s. I've found my old post about my dry cough here https://www.wegeners-granulomatosis....5918-Dry-cough
    Last edited by Alysia; 03-28-2020 at 06:52 PM. Reason: Adding p.s.
    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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  15. #40
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    Default Re: Coronavirus and GPA

    Quote Originally Posted by Alysia View Post
    I will have to set a video meeting with him to discuss my options and risks.
    Hi Alysia. Good to know that you and your family are safe right now.
    I sure hope you will succeed soon to set up a video meeting with your Wegs-doc.
    It must be a relief for you that the shortness of breath has gone.
    I hope the cough can also be treated soon, and that you can talk it over with your doctor.
    Living with WG/GPA since june 2010...

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