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Dorothea
07-04-2020, 10:48 PM
I'm in the hospital, Thursday morning I coughed up blood. Dr. sent me in for blood work and a cat scan. I was admitted and had another procedure where they inject ink into your lungs and scan them front and back. I was swabbed in the emergency room for Covid and again yesterday, they did it twice because you could have a false negative. I'm ok the second one came back negative. It's Saturday and they're trying to figure out if it's an infection or Wegeners.
I spent the Fourth of July in the hospital 4 years ago with Kidney failure. This time it's not affecting them, thank God! And by the way I got bit by a cat last year on the Fourth, spent 5 days here for that.. lol. Anyway has anyone experienced lung issues, and can you please share what happened? Thank you for letting me vent!! Happy Fourth of July everyone!

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me2
07-05-2020, 04:44 AM
A lot of people like to get away for the holidays- but not like this! It sounds like they are giving you a good work up and hopefully get things figured out for you soon. Cat scan information should help decide what is what. It's been too long ago that I had lung issues so I'm not much help. I hope you can get treatment and go home soon and start to mend.

Dorothea
07-05-2020, 05:01 AM
Thank you for your response! Have a Happy 4Th!!

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drz
07-05-2020, 05:05 AM
If the Wagner's attacks your lungs then coughing up blood can occur. It can make breathing very difficult too. There are other medical issues that can cause you to cough up blood which your doctors will undoubtedly rule out.

When I was initially diagnosed I had damage in my lungs and my kidneys from the Wagner's attacking those organs.

Best wishes for a quick diagnosis and effective treatment so you can recover soon.

Dorothea
07-05-2020, 05:13 AM
This time Wegeners didn't go after my kidneys, they do believe it is Wegeners. I was supposed to start Retuxin treatments before this happened, that will be the next step!! Thank you for your input!! Have a nice holiday!

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me2
07-05-2020, 07:00 AM
When I first had WG it was over 40 years ago. Joints, sinus , kidneys etc- but NO lung involvement. I was in the hospital for several weeks waiting for CTX to kick in as I was in very bad shape.
After twenty years of drug free remission the WG returned. This time NO kidney involvement and lots in the airways- lungs and trachea. lt is a mysterious disease.

The usual protocol , I think , is to have Rituxan every six months. This does not work for some people as they relapse ahead of schedule. Some people, like myself, do it on a 4 or 5 month schedule.

Dorothea
07-05-2020, 07:03 AM
Good luck to you too!! I will be getting Retuxin every 6 months. I hope all is fine with you now! Be safe!!

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me2
07-06-2020, 01:25 AM
What is your treatment plan for the next month? I'm curious. If I would guess I would say increased prednisone maybe 40 or 50 mg- or possibly more for the next month as you wait for the Rituxan to kick in.
Then , after a month goes by you start reducing the prednisone as you are able to. -- How did I do?
I hope you've made it back home now. Hospital food these days is pretty good but I doubt they will have 4th of July food- hamburgers, corn on the cob, corn bread, bbq beans. Prednisone will have you thinking about food more than usual- like it is for me.

Masha
07-06-2020, 06:18 AM
Dorothea,
I am thinking positive thoughts and sending prayers your way.
Sounds like you are handling this very well. Comes with experience.
Is your family allowed to visit you? I know with the pandemic hospital visits have been limited. Glad to hear you are getting your Rituxin soon. Like me2 said once that kicks in you should be getting better.
I was just thinking everyone seems to be going a little crazy with lockdown and social unrest, but when an individual health crisis hits us, nothing else seems relevant. :ohmy:
This is a darn crazy disease. At least Andrew has provided us with this site where we can vent and find support.
I don’t know if you have your appetite, but I am sending you some ‘virtual’ BBQ spare ribs and a coconut cream pie. So I know it’s not health food, but occasionally we need a little comfort.
Hope you are home soon.
Keep us posted.
Masha

Alysia
07-07-2020, 04:08 AM
Hi Dorothea,

Are you still in the hospital ? How are you doing ?

During my first lungs flare, I was addmited to the hospital with bad coughing, non stop fever, night sweats. I never coughed up blood but I know other weggies do. I did coughed up white staff which looked like cottage cheeze. Soon after my nose started to bleed. Blood tests showed anemia, highly elavated ESR and CRP, positive C-anca and pr3.

At another lungs flare I had more abnormalities in my blood tests. At another lung flare the labs were normal.
Such a weired disease.

At the last flare which started with the pandemic, I have started buduzon inhalations daily, which help me greatly to stop coughing and to breath better.

Rtx works great although only after about 1-2 months.

Sending you prayers.

richard052018
07-13-2020, 03:18 AM
My disease presented with joint pain, fatigue, loss of appetite, night sweats, and alveolar hemorrhage revealed via coughing up blood and bronchoscopy and ground glass opacity in the CT (the same crap they talk about with COVID). I had blood in urine but a negative kidney biopsy. My creatinine is high normal now so I assume there was also some kidney damage. High dose pred cleared everything up and I was back to work before starting RTX infusions, but the doctors went with RTX therapy anyhow considering all of my symptoms. I've been OK, but then I went and bragged about it in another post on this forum (just stupid) and now I've picked up a little congestion/cough (no fever, SPO2 normal, so far). I've gone to a few kid softball games so who knows if I picked something up. The way this is going it seems we are all going to get COVID at some point.

Anyhow, if this is your first lung involvement yes, it is terrifying, but the drugs work well on the lungs (at least that is what is advertised), and given you have gotten into treatment hopefully long term damage will be minimal.

Have they increased your prednisone? When I started the RTX treatment, I got the 2 1G blasts of Pred. I'm still on 6mg of pred. Sadly, I'm starting to see some bone loss around the teeth. My guess is they will be gone before long. Nonetheless the pred does work and hopefully it will keep you in good shape until the RTX can perform its magic.

Sorry you've had to spend so much time in the hopsital. Hopefully you are home or you'll be home soon.

seied
07-19-2020, 04:06 AM
I hope they got you some weekly alendronate/fosamax to prevent more bone loss.