I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: celtic warrior on June 01, 2008, 08:26:46 AM
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Maria was in centre again today, (2nd time with Fistula) everything went ok, though she said the needles hurt when being taken out.
What IS of concern is that around 3 weeks ago, her Antibody level was at 225. Today, the results of last Tuesdays tests came back.
Bearing in mind that the levels should be 15 or below, we found out that they have RISEN by another 116 points to 341. She is gonna have a chest x-ray on Tuesday
(her next visit to centre) this is just to make sure that the goodpastures is not attacking her lungs, seems they are gettin a bit worried as to if she is
coughing up blood or not. Only another 87 points to go, and she will have the same reading as when she was in I.C.U. (it measured 428 at the time) and we nearly lost her.
She is now feeling nauseous most of the time when she is awake, although at the present time she is sleeping more than 16 hours a day.
I am gonna be tried for murder if anything happens to her!
Sorry for going on but I am one worried Husband.
Tony.
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Im sorry to hear how worried you are and hope you get some good results on Tuesday ..fingers crossed .. :grouphug;
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Tony,
I hope things improve and Maria feels better. It sounds very frightening!
I know you've probably read everything on the internet but I found this at http://www.unckidneycenter.org/kidneyhealthlibrary/antigbm.html
for what it's worth:
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Once the diagnosis is confirmed (with the detection of the antibodies in serum and biopsy proven evidence of disease), there are essentially three components to treatment.
REMOVAL OF ANTI-GBM ANTIBODY FROM CIRCULATION BY PLASMAPHERESIS
Plasmapheresis is a procedure that takes the patient’s blood out of the body in small volumes, removes the antibody carrying component, and then the remainder of the blood is returned to the patient. Sometimes a fluid replacement is given back to the patient to replace the component that has been removed.
The number of plasmapharesis treatments can be quite variable depending on patient response. In general, most patients receive between 5-14 treatments – either daily or at some presecribed spacing over 14 to 21 days.
PREVENTION OF FURTHER ANTIBODY PRODUCTION BY IMMUNOSUPPRESSION
Most patients are given “pulse” large dose methylprednisolone by intravenous infusion each day for 3 days. This is a steroid that is quick acting and is used to quickly alter the immune system function and therefore decrease the production of new antibody. This is then followed by daily oral steroid therapy that may go for as long as 3 months (more or less based on disease response to therapy). Cyclophosphamide (Cytoxan®) is the other agent that is most often used with steroid therapy to suppress the production of Anti-GBM antibodies. This can be given orally or by intravenous infusion, but is in general given intravenously in single monthly dose.
AVOIDING OR PREVENTING FUTURE EXPOSURES
Avoiding potential chemical exposures/inhalations that may have caused the disease is important. Immunizations to prevent lung infections may also be useful.
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Please give her our best wishes and let us know how you're doing. :cuddle;
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hugs and prayers from all of us.
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My thoughts are with you and your wife Celtic Warrior. Hope the antibody levels come down. :grouphug;
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Tony don't apologise for caring, we all care too - sending positive thoughts your way :grouphug;
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It's lovely how much you care for Maria and I'm glad she has you to go to bat for her with the docs. You can go on and on and on and on and it'll still be just fine. :grouphug;
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Tony, my thoughts and prayers are with you and Maria. :grouphug; I know what you mean about being tried for murder, I feel the same way about hubby. take care of yourself also and keep us posted. :cuddle;
EDITED: Fixed smiley icon - okarol/admin
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It is quite a ride when you have to watch your spouse be ill and recover from something! :grouphug; all around to you and your wife!
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I really feel for you and your wife.
I myself had Goodpastures Disease 7 years ago and was able to beat it with prednisone and cytoxin.
It sounds to me like you have already been that route once before and she may be having a relapse.
She must be having a very difficult time, but she is lucky to have you by her side. Get those doctors
to do everything they can for her, you are her best advocate.