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. :hug2:

[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.:biggrin1:

[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!

[Sangye]

Kathie, did you have 2 rtx infusions or 4 when you were treated?

I had done 2 rounds with 4 infusions before and responded well. This last time we did the 2-infusion protocol and it hasn't worked as well. I'm having several issues, and today Dr Seo said that if everything else is ruled out then we will redo rtx this month using the 4-infusion protocol. It's only been 3 months since I had rtx. So yes, sometimes they need to do it more frequently.

[elephant]

Good luck to you guys!

[Kathie28]

I only had the 2 infusion protocol. The last one was February 14th such a lovely Valentine's Day. Everyone seems so confused as to whether or not I have an infection, a flare or both on top of the blood clot. What a confusing disease this is. I don't know how to tell it all apart myself either. Maybe repeating the Rituxin with the 4 infusions is the way to go. I know they are afraid to put me on the Methotrexate right now because of the lung side effects. I wonder if getting the blood clot could have caused the flare? It just seems so strange to be doing really well and suddenly everything falls apart. On the up side I am now home from the hospital and resting at home. It's killing me though I feel the need though lack of ability to be at work. My doctor's thnk it is time to look at disability for a while but that is so hard for me to mentally accept.

[Sangye]

Kathie, I think there's a good chance that you were starting to flare and that caused the clots.If you're having both sinus and kidney signs/symptoms, that sounds like Wegs and not infection. It can be very hard to tell the difference. I've been in that situation a few times and it's awful.

Maybe taking a break from work is what you need. I understand how hard it is to consider doing that. It's like all of a sudden you're in another category. I didn't have a choice because I couldn't even stand in those early days, but it definitely took me a long time to accept it. I had to grieve the fact that I wasn't going to just sail through the initial treatment and get back to my life. You're still early on and things can take a turn for the better. Don't lose hope. Hugs to you. :hug2:

[Tippon]

On the up side I am now home from the hospital and resting at home. It's killing me though I feel the need though lack of ability to be at work. My doctor's think it is time to look at disability for a while but that is so hard for me to mentally accept.

Hi Kathie. Glad to hear you're on the mend and back at home :thumbsup:

I know how you feel with not being able to work. I've been signed on to disability, and you're right, it's hard to accept. I went from working a part time job and starting to set up my own business, to sitting around the house doing nothing, because I couldn't physically do a job. What you have to remember though is that it may be what's best for you at the moment. I tried to push myself more than I should have, and landed myself back in hospital.

It's frustrating and depressing - if you let it get to you. Get yourself a hobby that doesn't take much energy. I was lucky in that I bought a new camera just before Xmas, so I've been teaching myself how to use it, just taking pictures in the house and garden. On a good day, I've walked to the end of my street to take photos of the trees. It doesn't sound like much, but it's a distraction and makes the day go quicker :smile1:

I hope this is some help to you :thumbup:

[Kathie28]

Thanks for the encouragement guys! My doctor asked me if I needed an antidepressent the other day because this was a lot to deal with and at first I thought who me no way but this is in fact very depressing. I did have it in my head I would be one of those who instantly went into remission and never looked back. I guess we all start out with tht hope. The hardest part is I just want to be able to care for my child he is only 18 months old and I feel like I am cheating him right now. He has been with his grandparents this week and it is killing me. Anyways, I hate to sound down in the dumps with every post because I know many of you are suffering far more than I am so I am going to try and get a bit more positive here. Thanks for being so supportive and it is good to be home and not in the yucky ole hospital where they probe you to death.

[Sangye]

I can't imagine how you guys with little kids deal with it--and especially an infant! What heartache. :sad:

Please do not apologize for "sounding down in the dumps." This forum is not about suppressing what you feel. You can't talk yourself out of depression or paste a fake smile on. You will come across people out in the world who say "Just snap out of it" and I guarantee you they've never experienced true depression themselves.

If you consider an antidepressant, I suggest you get a psychiatrist to evaluate you and prescribe. It's tricky business. Most garden-variety antidepressants cannot be taken with coumadin. Hugs to you, Kathie. You deserve to feel better. :hug2:

[elephant]

Katie, I remember when I was admitted to GHS and I was really sick. They were also confused with my symtoms? Is it sepsis? Wegeners flare? Meningitis? That is why I'm glad I have a Weg specialist. You will get better, don't beat yourself up about work. Work will be there when your back to feeling better. Work can wait, your health can't. Your 18 month won't remember that he was at Grandmas for a week or two. You can sit and read to your son, that is spending precious time with him. Or even watch Clifford the big Red Dog cartoon. My son loved that when he was around 18 months. Hang in there, you will get better! Really!