New member questions

[majolica]

Join DateDec 2010Posts1

new 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.

Edited December 2, 2010 by majolica

[Liz]

Majolica, welcome and sorry to hear about your medical ordeal. However, I must say you seem to be very strong. My sincere advice to you, and I hope that you follow it, is to have a proper medical follow up. It has been 4 years, you really should be followed on site by a Haematologist-Oncologist.

What you have is treatable, do not worry but do see a doctor for his advice on treatment.

Sincerely,

Liz

[majolica]

Hello,

Thank you so much for taking the time to respond. However, there is not a treatment for my blood diseases. Thats why the IVIG was given to me to clot just for any major surgeries. I been told there is nothing to be done for me. Just not to get hurt. I've done so much research on my own that I could probably get some kind of degree..LOL Desmopressin does not work for me like it does for people born with the von willebrand. My ACQUIRED von willebrand is so rare most doctors in there whole career will never see a patient like me. I came to this forum to get some answers on the antibody that I got during the treatment. Can you provide me with any of these answers? I had such a severe reaction and I am trying to determine what the cause was....IVIG, VIRUS, STERIODS. Do the antibodies stay with you forever? I thought all of you bloodbank specialist could help me figure this out. I am sure this info is very important if something serious happens in the furture. What is....ANTIBODY ID RESULT 1...ANTIGEN TYPE RES 1?

Thanks again...I am extremley grateful!

[bduff]

The best thing you can do with those results is call the lab that reported them. They do not make sense to anyone outside of that lab because they look like "canned" results. If you have a copy of the reports then your Dr. approved you to have them and they should be able to help you interpret what was meant by that.

[Liz]

Deleted.

Edited December 4, 2010 by Liz
change of mind

[ziya]

what kind of antibody you have?If it is against your red cell antigens its called auto, if it is not, we call it as alloantibody, there are mix cases also,keep in mind in IVIG transfusion you can get it passively,if this is the case its a temporary but ifnot its always permanent.

[majolica]

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.

Edited December 4, 2010 by majolica

[majolica]

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?