what to do next

OK so recovering from blood clots in lungs. Can't return to work until I see my pulmonary Dr on the 21st. Now on Xeralto blood thinner. I have a bad case of shingles so had to skip my Humira and methotrexate this week. Not sure yet how long I will have stay off of it. Of course I was already continuing my year long flare so that has gotten worse. I'm trying to schedule my iron infusion this week. Thing is I am so weak. I mean I can barely function without getting out if breath. I left the house for the first time in days to get some groceries. Thank goodness for the grocery cart because half way through the store I needed it to support me as I was so tired. Several time a day I feel as if I may faint. So here is the question. Is it my anemia? I mean even if my pulmonary Dr gives me the ok to go back to work I don't think I could. I just don't know where to turn. Each Dr deals with one thing but no one sees the big picture really.

Yes, severe anaemia would make you breathless and tired, but it's also everything else you've been through which is making you so debilitated. It's not remotely surprising: but as you say, doctors don't seem to see the big picture.

I've had that same exhaustion in shops that you've described. And when I came home after a 2-week hospital stay, I struggled to walk up the stairs for a few days, I was so weak. Medical crises are absolutely exhausting and you have been through more than your fair share of them.

Hopefully the iron transfusions will help, but your body will still need some time to recuperate from its ordeal.

There's no point in going back to ER unless it's an emergency. Hospital is the least restful place on earth, and half the time people seem to come out worse than when they went in, eg picking up c. diff infections, being put on strong antibiotics which make their symptoms worse, etc.

Just rest up at home. Don't go back to work for a while, if you can help it.

Na they would probably pump me full of flagyl and prednisone. They always give you flagyl before even finding out if you actually have c diff.

I'm still in the dark. I'm on Xeralto as a thinner. I have an appointment to see a pulmonary doc on the 21st so I hope to get more info from him. I also have an appointment with a hematologist in march. My leg swelling has gone down some. Really no one has told me much and its kind of frustrating. I just been tired and short of breath. Not sure if its the clots or my many other problems

Been on humira a few months along with methotrexate. So far it has not worked. Remicade did not work for me either. Humira is easier since at least you can do it yourself.

My UC would absolutely murder my energy. I could sleep 15 hours a day for days on end. I would try to "exercise" and be absolutely wiped. Anemia would cause me breathlessness.

The only thing that concerns me is that breathlessness can also be an indication of a bloodclot in the lungs. Now I know you have them, but I would be worried about one getting worse or the one from your leg moving up :(

I need help - Your body will start to absorb the blood clot on it's own. It will take a few months. The blood thinners will stop things being added to the clot or the creation of new clots. Whatever symptoms you experienced should slowly go away.

Are you having to give yourself shots?  I'm having to to daily finger pricks(INR) to check my blood clotting. Are you having to do that? My level is taking a long time to go up.

Greg