Inherited Common variable immunodeficiency (CVID) first visit
What an afternoon! Being an American is the most prized gifts in life.
I have health care and the best technology to help me.
Steve met us there and Dash and I had allergy shots and Dash had his asthma check up. He is doing great!
God is so Good to see my boy so wonderfully healthy.
Dash went to lobby with Dove and Steve stayed with me.
Indeed I have CVID the moderate in degree. At my age I will need a 4 week interval of Infusions.
Each infusion is a 6 hour process for the administration must be given very slowly as to avoid side effects as much as possible. The first to be done at the clinic then I will be given a homehealth care nurse. She is there to moniter the anifalatic concerns and the reactions I might have. My IgG is half of a normal person. There are a couple worse than me in the practice. This is a rare disorder Genetic in nature. In the large practice there are 5 of us. My case is not severe however I will have to have the infusions the rest of my life every four weeks. Because of my age it is very unlikely to ever rebuild my own immunity so I will be dependent upon infusion to guard me from infections for the rest of my days here. This to protect me from life threatening respitory things as well.
As it stands...
The coverage is being confirmed, the infusions will be ordered as too my specific need.
There are two cells types as I understand it. The "T" cell protects against virus, mine is intack. Thank God! Then there is the "B" cell this is where my big problem is. The "B" cells (that I do not have or have a very little of) are to attack the bacterial infection.
I need to use great care as to not get exposed as much as possible until after the first infusion. Each infusion will provide a varied type of immune cells. This will give a broader range of protection.
The risks very minamal as for the new techniques used = hep C, AIDS. VERY RARE
I will have to set up a CAT scan with contrast (injected die) for a base line on my lungs. To be repeated every two years. I will need to keep up on collonoscopy, mammo and other rutien cancer screening. That should be done by all of us anyway. With this there is a bit higher chance of "C" then in the common of society.
Watch there might even just be some kind of mirical some day that somehow my immun system will show us all! There will always be hope. Even so 6 hours and possible yucky every 4 weeks and I have a healthy normal life that is good news!
2 comments:
I am lifting you up, and praying for miracles in your life sis. I am glad that Dash is doing well. I love you.
I was diagnosed with CVID over 25 years ago and have had over 350 infusions. May I offer some advice?
First and foremost, the IDF's, Immune Deficiency Foundation, latest study showed that over 54% of CVID of patients rated their health as good, very good or excellent. The vast majority of patients who were diagnosed before infections had permanently damaged the do great with IVIG.
With that said, I recommend you get some of the free publications from the IDF; your explanation of the role of T-cells and B-cells is not accurate. To be honest it really doesn't make much difference to your treatment, it's just comforting to understand it better.
I'm not sure where you got the information that IVIG needs to be given slowly. It is definitely better to start of slowly, but many of us take it relatively quickly. I get 80 grams, probably double what you get, (the initial dosage is by weight) and it takes less that 3 hours. My advice is to make sure you are getting the right product, most patients who have reaction do much better on one of the other IG drugs, there are 8 approved in the US. If your IgA is still intact make sure he uses a low IgA product, That is a most common reason for bad reactions.
My other major / strong advice is to look into getting your infusions at home. I've found that having to go to a physician's office or hospital is a real pain. Going to a hospital to be around sick people just doesn't make sense to me. Home infusions are so much more comfortable. Also the home infusion companies are much easier to deal with and most have program to absorb your out of pocket deductible and coinsurance charges.
The is a very active CVID forum on the IDF website. If you like to "meet" other CVID patients it's a great place. The IDF also has a peer volunteer program where you can benefit from the experience of a "seasoned" patient.
Lastly, you may want to consider consulting with a physician who treat a large PIDD population. There are some. My doc treats over 75. The IDF can offer some help there too.
Good luck, this illness is not a death sentence or a life changer. Just an inconvenience.
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