majolica

Very Interesting... Thanks

Everyone here has been so helpful explaining my antibodies. So, any additional info...send me email!

I was not asking for a diagnoses!!!!!!!!!!! Boy this is so typical of the medical industry......the gift that keeps giving! Not!

w to the forum..have several questions Hello, I just joined this site and have several complicated medical questions. I will start with a brief history....Four years ago I was diagnosed with (AVWS) Acquired von willebrand syndrome and monoclonal gammopathy (pre-cancerous condition for Multiple Myeloma and a few other blood cancers. I had to have hysterectomy, so I had to receive 7 days of IVIG (immunoglobulins) with steriods to get my blood to clot enough to get through the surgery. They also pre-treated me with IV benadryl. I became very ill, but I guess fooled everyone because of the steriods and I did not know any better. The hematologist who was treating me had never met me before this. I have not been back to a hematologist since. According to my blood tests.. my RBC where getting detroyed and I was getting anemic and going into renal failure. (I still bleed in the surgery) My labs stated that a tested positive for a antibody. (had a transfusion in 2001 for a un-diagnosed internal bleeding) My questions are...Do I still have the antibody? Was the reaction from a virus, steriods, IVIG? Here is what my labs stated.....I will start will the CBC..High WBC..low RBC, low HGB, low HCT. Also it said present in my blood smear...macrocytosis, microcytosis, ovalocyte, toxic granulation. On another page it also said moderate hemolyzed specimen. I was not treated for the complications. Was the antibody temporary? Will I ever be able to use IVIG if I ever need any dental or surgeries? Thanks so much for any input! I forgot to mention my labs also said...antibody ID result 1, antigen type res 1, patient types FYA/(DUFFY A) antigen negative. I am 0+.. RH Postive. Hello, I am the complicated person back for more of your thoughts. Its about my bone marrow biopsy from 2006! I went to another doctor and they did a skeletal survey and they looked at my BMB from 2006...no labs $$$. Well, I have alot more questions that the new doc could not answer...like the others! Ug. My blood smear was done by a different person that did the BMB. I have stated how bad my blood smear was listed above. So, I read the report about the 200 BMB. Now I am really confused. Of course the new doc had no clue either! Well anyway..its says 30% hypocellular marrow/should be 50%/ mild plasmacytosis and increased reticulin fibrosis. Now, I have never been told why I had all the blood smear abnormalaties. But, does this have any reflect of my BMB? Would this explain why I was so sick when I was getting IVIG treatments? I am still chasing my tail to get to the bottom of why I feel so darn bad all the time but my labs fool everyone. Thanks for any help!

Thank you, I understood all that, but there has not been a reason for the severe IVIG reaction. I was not any med at the time, very confusing to say the least. The doctor could or would not answer these questions. But, the doctor won't even allow me to get my teeth cleaned or have fillings without the IVIG....I will never have that posion in me again!! I can't believe they would try that crap on me again!! Thanks again for taking your time to try to help sort this out, but I guess if I am lucky...I hope I will never need that stuff again.

Thank you as well! The doctor did mention the reaction could of been from immunglobulin overload. I know IVIG has known to contain viruses. They did give me very high doses for 5 days straight. So, Anna said the anti-fya is not a blood antibody? Did not understand what she meant by that. I did not have a transfusion at the surgery, just the IVIG. They gave me 10 years ago 5 units packed red cells. So, is that where someone developes the antibody? The antibody screen was negative then. When I was in the ICU 10 years ago, rbc was 2.75 and Hg 5.1... Bounced right back and never thought of it again till 5 years ago. Went to doctor becasue I felt bad and the last 5 years have been a nighmare.

Hi Anna, Thanks for all your info. I did ask if I had that anti-fya antibody and the Hemo doctor said yes.. So, yes I assume I got it from my transfusion 10 years ago. But, the big mystery is, why did I have a severe reaction to the IVIG/steriods . There has to be something in the immunglobulins. Any thoughts!

Also, The hematologist said that I have a inhibitor. I have IgG lambda monoclonal antibody. But, I asked if the mgus caused the bleeding disorder, he said..don't know! What I have read...there is a connection! http://www.slm-hematology.com/uploads/media/Management_of_Acquired_Hemophilia_A_Literature_Review.pdf

I have ANTI-FYA NEGATIVE. I had 5 units of blood 10 years ago for upper GI bleeding from a unknown source. I also have a monoclonal antibody, but I ACQUIRED it with (AWVD) acquired von willebrand disease 5 years after the transfusion. Is it possible to get these from the transfusion? Why would the hematologist say the antibodies mean nothing when i had a severe reaction to IVIG immunglobulins? Thats where the lab stated the antibody when I was screened for a surgery. Is it normal to not mention these antibodies to patients? Or , does it not matter because the screening is preformed for every surgery in case of a transfusion?

I have developed some antibodies from a previous transfusion. My question is...Do I need that information on my ID bracelet? My hematologist said that I only need to mention my bleeding disorder that I acquired 5 years ago. I thought such info is important if a bleeder ever needs a transfusion. The doctor said that you all get the antibody info anyway!

Hello , I am sorry to ask for more help answering questions, but I did not get any answers from my JAN 5 appointment. The doctor may have just not remembered the events from 4 years ago. He skimmed right over my questions that I gave everyone here. He acted like I had no complications from the IVIG...WRONG! Sure I made it through the surgery without bleeding to death, but I was sick as a dog. He said, no virus? ATYPICAL LYMPHOCYTES....thats some kind of virus. The only thing he said..maybe high doses of protein, causing protein overload. So, why did my mannual blood smear have these abnormal findings then? Does a hemolyzed specimen just mean lab error? Any thoughts ? I have IgG mgus, would that effect IVIG treatments?

Hello Again, I just wanted to add a few things I discovered. I am the one with acquired von willebrand. I have a appointment with the hemo doctor in jan, but I read some interesting things lately. I am now thinking the antibodies that I produced from cold agglutinin disease. I think this could be from a virus from the IVIG, or from the mgus. My labs did say atypical lymphocytes=reactive, benign, viral lymphocytes. Moderate hemolyzed specimen. My blood hurts alot in cold temps. The only worry I have is it is possible to have myeloma, lymphoma connection too. Now, would this be passive too? Anyone have a simular case?

Hello Ziya, I too thought it was passive. So, its possible that I don't still have the antibody? I did make a appointment with the hemo doctor that treated me on JAN 5. He is probably going to retire soon. I hope he can answer these questions after 4 years. I also wanted to add that if things weren't complicated enough...My CBC gives off false negatives by compenstating for the lack of clotting factors. My blood is producing xtra White cells, red cells, and platelets to confuse things even more.

Wow Everyone!!! You all are so wonderful to help me sort all this out. I am so grateful!! I forgot to add another issue that was stated on my labs. It also said on the blood smear atypical lymphocte (s)= reactive, benign, viral lymphocyte (s). When I looked that up it suggests Mono... I am I correct? I have also read mono can cause a temporary antibody? Would my IgG lambda monoclonal gammopathy have anything to do with the reaction from the IVIG? I was a sick as a dog...drove myself in a blizzard everyday for 7 days to the hospital to get the IVIG treatments for the surgery. Get this...if things weren't bad enough the gyno doctor that the hemo doctor recommmened. The gyno only seen me once before I was SUPPOSE to get a hysterectomy. The gyno doctor FORGOT who I was and did not perform the hysterectomy. He only removed the benign tumors on my ovaries. When I woke up....I was not a very happy patient, and made it very clear how mad I was. Maybe that is why no one said anything about the antibodies....Geeze , It wasn't my darn fault! Sorry for long story..but I am very symptomatic...bone pain, night sweats, bruising , fatique, weakness and I have had to deal with this on my own and its been a nighmare. Heck, my factors are so low.. (6% factor VIII norm 60-150) (VWF 22 norm 42-200) (VWF, AG 30 norm 49>)

Hello Malcom, Hope I did not post this twice...So did I get the antibody from my 2001 blood transfusion? I did not have a blood transfusion for the 2006 surgery, just Immunoglobulins. I know IVIG is pooled form 1000's of donors which can contain viruses. My blood smear stated toxic granulation...so I must of had some kind virus also. I know the hemolysis anemia went along with the other blood smear abnormancies. So, what exactly does the anti-FYA mean to someone with a bleeding condition? Does it have any effect on my pre-canerous condition. Does this mean if I ever need blood again this could complicate things? Sorry for all the questions....Its been a very lonely road these past 4 years and I have not had anyone in my corner. Thanks