 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Lupus / June 2004update.
Okay, so I was in the hospital about 10 days.... Anyhow, I'm doing much better. I'm off oxygen, and my coughing and cold symptoms are almost gone. My lungs still have fluid in them, and I get short of breath, but it's much much improved! I seem to improve a bit on a daily basis. I had something like pneumonia, but that's pretty much cleared up, according to the most recent chest xray. I had a special IV line in, which they left in while I wait for some results from Edmonton -- a bug sample that could be relatively harmless or might need pill antibiotics or could need IV antibiotics. Also, they found I was low in a part of the blood called immunogobulins, so they gave me some and will probably give me an infusion every month or so for awhile. The doctor said that might be part of the problem. It seems to me they don't really know, but are happy I'm improving! I guess it will be important to see how much I improve when I finish the antibiotics, and then to get the results next Friday from Edmonton. My little son seems to have missed me. He's following me around and hugging me a lot around the knees. Persevering, Grace, p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and chronic sinusitus ?? We'll see what they say next week....At least symptomatically, I am doing better.... Wow. You've been through the ringer! I am happy to hear that you are feeling better - that seems like an awful lot to deal with. Good to have you back with us! Stephanie > Okay, so I was in the hospital about 10 days.... > [quoted text clipped - 27 lines] > chronic sinusitus ?? We'll see what they say next week....At least > symptomatically, I am doing better.... I hope you are feeling better now and had good results. Maria > Wow. You've been through the ringer! I am happy to hear that you are feeling > better - that seems like an awful lot to deal with. Good to have you back [quoted text clipped - 33 lines] > > chronic sinusitus ?? We'll see what they say next week....At least > > symptomatically, I am doing better.... Just a reminder to you... Take it one day at a time.. You really have been through allot. Remember that everything can wait but just take care of yourself and spend time with the little one. These are the times when we really can see what is most important in life. > Okay, so I was in the hospital about 10 days.... > [quoted text clipped - 27 lines] > chronic sinusitus ?? We'll see what they say next week....At least > symptomatically, I am doing better.... Good to hear this, Grace. This sounds like they have at least found the causes for the chronic lung problems. My question(s) is/are: Is this something that can flare up from time to time? When you said "chronic," that was my thought. Or, are they hoping the treatment (whichever one's decided upon) will put an end to it altogether? Hugs, Maggie > My question(s) is/are: Is this > something that can flare up from time to time? When you said "chronic," > that was my thought. Yeah, how things stand right now is I have lungs with damage and diminished capacity that are susceptible to infections -- which will mean jumping over anything new with anibiotics right away. Right now, I'm still coughing some stuff up and I see a physiotherapist Tuesday to learn chest-clearing methods. But I don't think anyone really knows what the state of my lungs will be after this infection is cleared up; but everyone seems to think there will be some damage. G. > Okay, so I was in the hospital about 10 days.... > [quoted text clipped - 13 lines] > so they gave me some and will probably give me an infusion every month > or so for awhile. First I've heard of this really (in specifics), but apparently the treatments (you had) can affect them. http://www.lymphomation.org/tests-immunoglobulins.htm Immunoglobulin A (IgA) is a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract. IgG, immunoglobulin G - the major antibody found in the blood that can enter tissues. It coats germs, helping other cells to seek and destroy them. IgM, immunoglobulin M - an antibody that remains in the bloodstream where it can kill bacteria that enter the blood stream. " So hopefully with each infusion, and the antibiotics, you'll soon start to see improvement. > The doctor said that might be part of the problem. It > seems to me they don't really know, but are happy I'm improving! [quoted text clipped - 4 lines] > My little son seems to have missed me. He's following me around and > hugging me a lot around the knees. Yes, your absences must be affecting him. On the other hand, I recall riding my son on my knee after he'd do that. That made him giggle.. H's too tall for that now. In fact, I remember one day when I turned to him and thought "what happened? now I have to look up" (he grew so fast in one spurt. Hopefully he'll have a huge growth spurt, and end up next hugging your waist ! ;-) No more, knocked off your knees for you, fine lady...please. > Persevering, > > Grace, > p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and > chronic sinusitus ?? We'll see what they say next week....At least > symptomatically, I am doing better.... Perhaps the above explains because brocnchio and brochie say "airway" to me. Hugs and with time, may you regain strength. Hey Grace, did you ever get the invite ? I emailed them (the web page that you'd posted way back when) but they never replied. I think that's rude ! J Does that mean she doesn't have these - as they were killed when they killed everything else? Will her body make them eventually? Bev > > Okay, so I was in the hospital about 10 days.... > > [quoted text clipped - 61 lines] > you'd posted way back when) but they never replied. I think that's rude ! > J Oh, I'm making them, just not enough. But yeah, who knows? > Does that mean she doesn't have these - as they were killed when they killed > everything else? Will her body make them eventually? > Bev > J: Thanks for the immunogobulin info. Yes, I hope it will help! No, I didn't get any invite... oh well, I'm not up to it, so this makes it easier! G. Hi Grace, Glad to hear that you are seeing improvement. I had IVIG too. It can work wonders for some people. It helped to bring my platelets up from a dangerously low level. It seems they use it in a number of situations. Keep us posted. BJ-Sk. Canada > Okay, so I was in the hospital about 10 days.... > [quoted text clipped - 27 lines] > chronic sinusitus ?? We'll see what they say next week....At least > symptomatically, I am doing better.... > Hi Grace, > Glad to hear that you are seeing improvement. I had IVIG too. It can work > wonders for some people. It helped to bring my platelets up from a > dangerously low level. It seems they use it in a number of situations. Keep > us posted. > BJ-Sk. Canada BJ the enigma, Was that for your anemia? There's one type mentioned here when I follow some of the links on the list there. http://www.healthcentral.com/mhc/top/003545.cfm J No J. It was for my immune thrombocytopenia. That along with a honking big dosage of pred brought my platelets up from 6 to 23 within a couple of days. > > Hi Grace, > > Glad to hear that you are seeing improvement. I had IVIG too. It can work [quoted text clipped - 9 lines] > http://www.healthcentral.com/mhc/top/003545.cfm > J Wow....mine got low during the transplant. They gave me blood several times... Actually, I was encouraging my friends and family to give blood to replace the bags I used...but I eventually lost count. Maybe 12 or so....? G. > No J. It was for my immune thrombocytopenia. That along with a honking big > dosage of pred brought my platelets up from 6 to 23 within a couple of days. [quoted text clipped - 15 lines] > > http://www.healthcentral.com/mhc/top/003545.cfm > > J Grace, Next time you or anyone else on the group needs blood can't we ( the group) or a relative of ours donate blood for whoever is gonna be needing it? Does the Red Cross or whatever blood banks there are do United States to Canada or other countries? Just a thought. Hugs, Sherry > Wow....mine got low during the transplant. They gave me blood several times... > [quoted text clipped - 22 lines] > > > http://www.healthcentral.com/mhc/top/003545.cfm > > > J >Grace, >Next time you or anyone else on the group needs blood can't we ( the group) >or a relative of ours donate blood for whoever is gonna be needing it? Does >the Red Cross or whatever blood banks there are do United States to Canada >or other countries? There was a correspondence here maybe a year ago on the question "are lupies eligible to donate blood". I think the answer was that many blood-handlers said "absolutely not", and you would need to formally declare your diagnosis and not be put out if they say "thanks, but no thanks".  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Makes me wonder if a lupie can donate to another lupie? For instance today it is common if someone knows they are going to have surgery that they will donate their own blood to be saved for them. But you'd probably have to be in the same area because that blood does not go through the Red Cross. Bev > >Grace, > >Next time you or anyone else on the group needs blood can't we ( the group) [quoted text clipped - 7 lines] > declare your diagnosis and not be put out if they say "thanks, but no > thanks". I was just curious as years ago when a friends daughter was in and accident a bunch of us went and donated blood (before SLE dx) in her name. Then when she used blood there was plenty of donated blood to cover what she needed. Like a credit account. <g> If something like that is possible today. Then we could get our non SLE relatives and friends to donate in someones name if and when they ever need blood. Hugs, Sherry > Makes me wonder if a lupie can donate to another lupie? For instance today > it is common if someone knows they are going to have surgery that they will [quoted text clipped - 16 lines] > > declare your diagnosis and not be put out if they say "thanks, but no > > thanks". Yeah, when I first started getting blood, I felt quite indebted. "Go give blood," I'd tell my sisters. "I've used up 5 bags!" G. > I was just curious as years ago when a friends daughter was in and accident > a bunch of us went and donated blood (before SLE dx) in her name. Then when [quoted text clipped - 31 lines] > > > Andy Taylor [Chair, N E Lupus Group] > > > See http://www.northeastlupus.org.uk for more! I don't think people can 'target' blood like that; but I don't know for sure. You can 'bank' blood ahead of time for an operation, though... I just like to put a 'face' on giving blood, so my friends, etc. know how it helped me... G. > Grace, > Next time you or anyone else on the group needs blood can't we ( the group) [quoted text clipped - 38 lines] > > > > http://www.healthcentral.com/mhc/top/003545.cfm > > > > J > It seems they use it in a number of situations. Right. I used to get IVIG for my polymyositis, something for my immune system to attack, to leave my muscles alone. (Remember, bananas for the Lupus gorilla?) I told the lung doctor that... "No, this time, these bananas are all for you...") G. Grace, I am glad that you are feeling better. Sending hugs and Prayers.. Cindy |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.