Back in the hospital

[Kathie28]

Hi everyone!

Well sadly I only managed to stay out of the hospital 5 days and I am back. For some reason I am having a lot of difficuly breathing. I take just a few steps and I am struggeling for air and coughing. I wasn't doing this a week ago when they diagnosed the pulmonary embolism. My cumadin is in therapeutic levels so one would think if anything I should be improving. I've also got lots of sinus drainage going on now. My creatnine levels are creeping back up. I was down to a 1.2 since having Rituxin in February now it's back up to a 1.5. I suspect the dye they use for the CT is part of the problem. The are weary about doing another CT on me at least with dye because of the kidney issues. I guess we will see, the pulmunologist is suppose to be in sometime today. I had been doing so well since the Rituxin so this is really a downer. I hope this finds the rest of you doing well and hopefully I'll have some better news to report soon.

[drz]

Hope they find out what is going on and some treatment to help you feel better soon. Those CT scans are hard on the kidneys so it is good to avoid them if possible.

[pberggren1]

I'm sorry to hear this Kathie. Hopefully the pulmunologist will have some answers.

[Sangye]

Kathie, so sorry to hear you're not doing well. Some thoughts: It's possible to get repeat clots while on coumadin. I did, though there were reasons for it (too long to explain). Coumadin doesn't work for everyone, even if it keeps your INR in range.

Dr Seo told me clots are usually only a problem with active Wegs. Since you have difficulty breathing, coughing and an elevated creatinine I suspect that the Wegs was increasing its activity and that's what caused the clots. I think the dye would only cause kidney problems, not lung. Your docs may be forced to do another CT with PE protocol (ie high-speed dye) to make sure you haven't formed new clots. There's really no other accurate test.

I hope they figure it out soon and get you home and feeling better.

[jkthomas56]

So sorry to hear that Kathie. Let's hope they figure it all out without having to subject you to another CT scan. Hopefully we will be hearing from you at home soon!

[renidrag]

Kathie: Sorry to hear you are struggling. I'm not sure what you mean by theraputic coumadin levels. I had just started coumadin when I had my embolism. My INR is supposed to be around 3.0 and everything you eat and drink affects those levels. There are other treatments out there if the coumadin doesn't work for you. Lovenox being one of them but I wouldn't recommend that to my worst enemy. I also had a filter put in my vena cava and have not had any problems since.
Dale

[Sangye]

Dale, therapeutic coumadin levels means the INR is in range (usually 2.0 to 3.0).

Lovenox is sheer hell. It's also unbelievably expensive. I was on 2 shots a day for 2.5 yrs, at a monthly cost of $7,000. They don't even allow you to leave the hospital until you can secure a way to pay for the shots. And worse than all that is the fact that Lovenox leeches bone at a much faster rate than pred or our other drugs. I came into this with great bone density, thank goodness.

[renidrag]

Thank you, it is nice to know I am at least therapeutically correct.

[LisaMarie]

Kathie
Hope they find some answers soon...I was hospitalized 1 month after my last Rituxan infusin for Respirtory distress...I almost died..so listen to the Doc and accept that they may not find a reason but hopefully they will find a way to make you feel better...I had a CT done prior to being hospitalized that showed ground glass mosaic opacities both lungs...but my bronch came back clean...i was placed on antiviral , antifungal and antibacterial antibiotics...nebulizer treatments including mucomyst (foul smelling yucky stuff)..bipap...it was the longest 14 days of my life...plan on not repeating it but who knows....will be praying you get better soon.

[Kathie28]

HI everyone!

Thanks for all of your kinds words. I'm still hanging in there. They haven't come up with a lot of answers but my O2 levels are improving a bit. It still drops a good bit when I walk but at least I'm not panting for air like I was before. The best guess it the way the clots are breaking up are somehow gathering in a way that is making it hard to breath so hopefully everything will continue to improve as they break up more.
They also feel the Wegners is flaring up due to my sinus and kidney issues coming back which is really a bummer. It's only been 2.5 months since I had the Rituxin. They have been giving me massive amounts of steroids. The plan is Methotrexate but they don't want to do it until the lungs are better due to some of the Methotrexate side effects are lung related. So right now I'm being fed massive amounts of steroids. Yuck!!
I'm still tyring to keep my sprits up but I so just wanted to be one of those individuals that went into remission with the Rituxin and stayed there. I know I'm preaching to the choir who doesn't want that.
I wonder if they ever give Rituxin again early or if they always wait at least 6 months.
I'll keep you posted as I learn more. Take care all!