Two years later for this is a re-post
Life is greatly improved and infusions are so much easier. I had no idea how long it would take to be normal again. Life is sweet and I am grateful. I also had no idea how many souls are out there with the same issue just floating in a no mans land. Many have found solace here. Please forgive my lasting absence. It took a while to accept through things grieving process. Also within the last 18 months I had a total knee replacement and labial repairs on both shoulders. Life does continue and it is full of promise. It is a joy to me to hear from so many of you who walk dazed in the CVID diagnosis. I will be coming home here to the blog.
Original posted in June of 2010
Genetics are a huge part of our makeup we are a generational being...
The test have returned and this is the diagnosis faced in my life now. The most difficult thing is the sadness regarding the nieces and a nephew who are suffering in the dark as to why their bodies are self destruction. They have no medical intervention. This greatly effects life expectancy. I must inform my siblings, the generation of those there after and so on to be tested and to seek intervention. To do this while guarding the hearts of those who have no comforter.
I have an 8 year old and a 12 year old. The infusions can sorta wipe you out a bit for a few days. Best case only one every 4 weeks. But it sounds more likely that it will ramp up to that. I need courage. I need tenderness to strengthen my heart. Knowing that siblings are in a untreated state, know now what took my moms life. All these thing flood my mind a white wash of thoughts.
The general fatigue and lethargy is so progressive. This has gone un-diagnosed for some time now and many years of repeated resistant lung infections of bronchitis and pneumonia. You know I see the sweet mercy. I asked why? Why do i get all this freaky illness that have left me feeling humiliated, demised,demeaned and folks including medical and family acting as if this has all been in my head. YEARS OF THIS! IT LEFT ME DOUBTING MY OWN CHARACTER AND SANITY AT TIMES. SOMEONE i THINK IT WAS Marsha SENT ME A LITTLE BOOK ON MINISTERING TO THOSE WITH CHRONIC ILLNESS. well at THE HOSPITAL DURING THE INFUSIONS FOR MYSELF THERE i WILL BE...WITH A CHOICE OF THINKING AND BEING THERE FOR ME AND CONSUMED WITH "me" OR EXITING THIS VORTEX INTO THE COMPASSION NOT ONLY FOR MYSELF BUT FOR THOSE AROUND ME.
with THE SAME COMFORT WE HAVE BEEN COMFORTED WE SHALL COMFORT OTHERS.
Must be a lot of folk needed comfort cause here it comes. Please remember to comfort my heart my dear friends and family. I will need the bracing up as I go forward. I can not let this stop who I am within my heart.
Man, it has really been one thing health wise after another for so many years. Understanding is the beginning of knowledge it will be then that I can walk in wisdom once I exercise the knowledge there is for me to gain.
A Wonderful post gave me a nice dose of
God works all things to his Glory
Everything to harm us is turned to glorify Him
May this walk given me to undertake be done in such a way that i remain unfettered by fear, bitterness and the potential effects of treatment.Treatment usually consists of immunoglobulin therapy, which is an injection of human antibodies harvested from blood donations:
- intravenous immunoglobulin (IVIG, most common treatment in the US)
- subcutaneous immunoglobulin G (SCIG, relatively new treatment in the US and UK)
- intramuscular immunglobulin (IMIG, less effective, painful)
IG therapy can't be used if the patient has anti-IgA antibodies but in this case, products low in IgA can be used; subcutaneous delivery also is a means of permitting such patients to have adequate antibody replacement.
IVIG treatment can be received by patients with a complete IgA deficiency if the IgA is completely removed from the treatment.
Hypogammaglobulinemia - Overview
Hypogammaglobulinemia essentially means antibody deficiency, and includes numerous primary immune deficiency diseases such as Common Variable Immune Deficiency (CVID). Unlike AIDS or chemotherapy-induced immune deficiency, primary immune deficiencies are considered inherent, perhaps genetic.
One of the rarest forms of hypogammaglobulinemia, Severe Combined Immune Deficiency, is nicknamed the "boy-in-the-bubble" disease - a somewhat popular example known to movie viewers.
Both Common Variable Immune Deficiency (CVID) and IgA deficiency, whereas antibodies are decreased but not absent, are much more common. The approximate rate for CVID is 1:50,000 persons and the rate for IgA deficiency is as frequent as 1:750 individuals.
As the immune system is quite complex, CVID often involves additional defects in the immune system.
Common Variable Immune Deficiency (CVID) is mild to life-threatening: dependent on resistance to infection, treatment success, and if complications occur. Significant risk of developing certain cancers and autoimmune illness also exists for patients.
Inherited Immunodeficiencies: Common Variable Immunodeficiency (CVID)
Alternate Names: CVID
DefinitionCommon variable immunodeficiency (CVID) is an immune system disorder which typically affects males and females in the third or fourth decade of life. However, it may also be seen in children. It is characterized by low levels of antibodies (another name for immunoglobulins) in the blood stream and an increased susceptibility to infections.
The diagnosis of common variable immunodeficiency is suspected when the patient has low levels of antibodies in the blood stream, a poor immune response to vaccines, and a history of recurrent infections. Patients with CVID develop recurrent infections of the sinuses, ears, nose and lungs. They may also develop enlarged lymph nodes (palpable glands in the neck and groin) or an enlarged spleen. Infections of the gastrointestinal tract may also occur. Individuals with CVID have an increased incidence of malignant lymphomas and autoimmune disorders such as lupus, rheumatoid arthritis, inflammatory bowel disease and autoimmune hemolytic anemia.
Influencing FactorsPattern of Inheritance
Genetic factors do play a part in the development of common variable immunodeficiency. However, there is no single gene mutation (mistake) that can be identified. Environmental factors may also influence the development of CVID.
Treatment StrategiesTreatment for common variable immunodeficiency includes monthly infusions of gammaglobulin (IVIG) and oral antibiotics to prevent infections. Prognosis is variable and may depend on the severity of lung disease prior to diagnosis and the occurrence of autoimmune disease or malignancy. Patients are encouraged to lead a healthy lifestyle, which includes good nutrition and regular exercise.
More detailed information can be found here.http://emedicine.medscape.com/article/1051103-overview