Chronic Illness and my journey with CVID

Welcome to my blog.  My name is John, I am thankfully divorced, and happily remarried with 2 amazing children, and this, is my story.

Blog:

For years I have been sick way too many times more than I can tell.  Unbeknownst to me, I have had a Primary Immune Deficiency this entire time.  Sometimes it takes the right doctor to listen, ask the right questions, look in the right places, and above all else, treat you like a human being.  The myriad of the American healthcare system in the United States is ridiculous.  I have seen COUNTLESS doctors in my lifetime, but I can only count on 1 hand how many have been exponentially beneficial to my diagnosis, and treatment.  Just being handed antibiotics and sent on my way has been "the norm" for me.

Nobody ever likes to be sick.  This blog was started as I was diagnosed with CVID (Common Variable Immunodeficiency Disorder) in October of 2018.  CVID is a genetic disorder where your immune system has a certain malfunction with how your B cells work to which my body cannot create enough antibodies via immuglobulins to ward off and fight common opportunistic infections that most people have no idea what their body is doing for them automatically.  I also have no ability to form antibodies from most immunizations, which leaves me vulnerable to more serious diseases.

The proper diagnosis of my CVID was started at Mayo Clinic in Rochester, MN, however, finding an immunologist to work with in Denver has been a challenge.  Luckily, I found IMMUNOe.  Their staff is amazing, and the most caring people that I have ever met.  Should you need a great team of Immunologists, or an ENT, I cannot say enough good things about this place.  They are located here in Denver, CO:

http://www.immunoehealth.com/

As this blog progresses, the hope is to share my experience and a part of my life, and leave it for someone whom may be going through the same thing, looking for help on their path to chronic illness, or just starting to figure out what the next step is.  Most of my life this genetic disorder has been silently hiding behind an iron curtain.  Understanding any problem is the key to moving forward in the right direction, and solving that problem.

My current plan of treatment:
IVIg Octagam 10% with a dosage of 40g / 400mL every 3 weeks

As my blog description says:

"This blog will be an ongoing, online, full disclosure of my journey to healing. Finding the right doctor makes all the difference. In this blog, no names will be named. Just places, what I’m going through, and the path to healing. Hopefully this well help others with CVID and sharing my experiences."

I welcome anyone to ask questions, share their experience as this goes.  I am by no means an expert at Immunology, or a doctor.  I am someone who has gone to great lengths to understand my condition.

Please DO NOT use my blog as an "internet diagnosis", please advocate yourself to your healthcare providers, fight for the help, and care you deserve to get.

Resources for Primary Immune Deficiencies:
https://primaryimmune.org/
https://www.jacionline.org/
https://www.mayo.edu/research/departments-divisions/department-immunology/about/overview
https://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease
https://www.myigsource.com/about/primary-immunodeficiency-educational-resources
http://www.igliving.com/resources/ig-disorder-primary-immune-deficiency-disease-pidd.html

What can I do to help?
Please donate blood.  It takes anywhere between 3,000 to 15,000 blood donors required to create my IVIg therapy.  Without my treatment, my life wouldn't be possible.  Some local/private blood banks will even pay for blood so hey that works out for everyone!

Where do I go to donate?
https://www.redcrossblood.org/donate-blood/blood-donation-process/donation-process-overview.html

My contact info:
Email
Instagram
Twitter
GoFundMe

This blog is being published and is protected under my First Amendment Rights of Freedom of Speech to the United States Constitution. Any content found within my domain digitallychallenged.net are my own thoughts, opinions, and viewpoints.  If you don't agree with what I have to say, you can always go here.

Thanks for reading and stopping by.

John

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