I added intravenous immunoglobulin to my health routine around October of 2012. I go to the hospital once every four weeks for about 5 or 6 hours (depending on the nurse) and get IVIG. This treatment is something that I could have done a few years ago, but decided not to because of the fact that I would be getting plasma (which is a part of the blood products) from about 50 donors. I finally caved and tried this when I got sick with pneumonia and ended up with a hernia, in an attempt to keep myself from getting hospitalized. IVIG is given to patients who have immune deficiency issues. My immune deficiency issue is called common variable immunity disorder. It basically means that I don't have a working immune system. This means that when someone is sick and comes into contact with me I am more likely to get sick because I don't have the defenses to fight off illnesses. IVIG gives me other peoples immune systems (not technically, but sort of) so that I can fight off diseases. Since I started IVIG I have not been hospitalized and I have not gotten sick with colds or flus, or any of the other illnesses I would usually get. It has been two years now and I am grateful for this unexpected pleasant consequence of IVIG. IVIG has been a blessing in my life and I am grateful for the healing effects of this treatment. Also IVIG is an off label treatment for Scleroderma, so hopefully this treatment is helping that disease as well. Since we last talked I have started a doctorate program in nursing, hoping that I can graduate and be an advocate for people going through difficult health scares. I have been a patient and I know that the health care profession needs some serious work. Compassion needs to be brought back into health care and so does trust and respect for the patient. I really want to be a change agent and help people who have been through or are going through health crises. I have been there and I know how you feel. I also want to try and find a way to help the healthcare field think outside the box. I know that the only reason I am still alive is because I researched my diseases and the treatments myself and didn't follow the common path. Mostly because the common path made no sense to me. Here are two examples: 1. You have Scleroderma and we give all patients with your type of Scleroderma chemotherapy. (Me) Does it work? (Dr.) Well not really but we don't have anything else to offer you (Me) I'm not doing chemo if you can't show me research showing this will work. There has got to be a better way.....(and there was) though it's a very off label treatment and most doctors won't prescribe it even though its as simple as taking an oral antibiotic. Example 2 You have cancer and we want to give you 5 chemotherapy drugs that are very toxic and then radiation. (Me) Will this work? (Dr.) well your cancer is considered incurable in conventional medicine. (Me) then why would I do this treatment if you can't cure me? (Dr.) well we can probably put you in remission but the cancer will come back (Me) there has got to be a better way....(and there was). I feel like I am still here despite all the odds becasue I have things that I have to do. I haven't been given good prognosis about any of my health issues, however I am still here and fighting for my health.
The biggest occurance since I last wrote, is that exactly two weeks ago my husband and I, and our youngest child Noah, moved to Silver Spring, Maryland from Virginia Beach, Virginia. At first I was a little concerned about the move, but now I look at it as a blessing. I am closer to D.C and closer to being able to help people. I am currently getting my doctorate in nursing, hoping to be able to teach and be an advocate for patients in hospitals. Who could be a better advocate for patients than someone who is not only a patient, but also a health care worker. I am a little nervous about the cold weather out here, as I tend to feel better in warmer weather, but if there is anywhere that I could make a difference and help people it would be here. I know that we all have stories that need to be told, and I very much want to tell them. I want to help people who have been suffering with health issues. Please post in the comments your journey with help. I would love to hear from you!
I would like to end this post by telling you all that I am in remission from NHL follicular lymphoma (two years in remission) and that my other health issues either have improved or are stable at this time. I am so appreciative of this precious life that we have been given and I want to spend each moment meaningfully.