So, this 3-year chronology of my lymphoma treatment and remission is morphing into a CVID blog.... Hmmm.... Who knew? I suppose I need to change my "About Me" section and post another link on the CVID message boards. I confess that as I lay up for the weekend trying to stave off my first respiratory infection of this school year, I am buffeted by mixed feelings.
Relief: Hope exists for healthier living. My VCU immunologist phoned on Thursday with news that my vaccine challenge test dovetails with my second round of blood tests (showing miniscule and alarming levels of immunoglobulin). My blood has had a low response to both the tetanus and pneumonia (yikes!!) vaccines he administered on August 24. These slam dunk results mean that insurance should cover the expensive immunoglobulin infusions that I need (weekly? monthly? TBD) to restore my immune system to some level of function. With these infusions, the goal is to "avoid bronchitis, pneumonia, and most respiratory infections." He added that I should have colds at the rate of a person with a normal immune system. That sounds absolutely GRAND! I am flooded with relief. Won't it be magnificent to live most of the year without lung congestion! These many years of constant coughing have worn me down emotionally. Which leads me to ...
Worry: I may have already damaged my lungs. 54 is relatively late for a CVID diagnosis. My father, Joe, and my sisters have always maintained that I have a "weak immune system." My father told me that for years and he passed away in 1995 so this issue has been long-standing. I believe I was relatively healthy through college but certainly remember coughing like a fiend when I was working as a management consultant in the mid 80s. Coming down with shingles at age 25 in 1986 is consistent with the decline in my immunoglobulin. I have a consult with a pulmonologist when I return to see the immunologist at VCU on Oct. 19. Before my lymphoma, I used to joke that my lungs would be the death of me. After cancer, my thoughts about my ultimate demise obviously shifted to the insidious specter that permeated my lymphatic system - a relatively unappreciated and unnoticed part of our bodies! Now my lungs have reasserted their need for medical attention. With treatment, CVID is completely manageable. I am hanging my hat on THAT!
Guilt-free: My wracking coughs are indeed NOT a cause for concern to the public, no matter how horrid I sound. Whatever virus or bacteria is afflicting me will probably not impact others because the vast majority of the world has the protection of those handy immunoglobulins which will efficiently summon up an immune response and protect against infection. I get sick. YOU don't. The immunologist emphasized that I may sound wretched but I am generally harmless. "Patients with common variable immunodeficiency are subject to recurrent infections, especially those caused by microbes that don't normally cause disease in normal persons." Good to know. Maybe I should wear a sandwich board to reassure everyone? I know I sound horrible, gross, scary ....
Squeamish: I am NOT looking forward to a regimen of subcutaneous infusions for the rest of my life. I spent too much time on message boards last night and this morning. TMI, folks! Too many photos! Maybe I can gratefully digest this detailed information later. At this point, I can't read any more horror stories about side effects (migraines! NOT wanting to return to that!) and administration problems (broken needles? Oh Lord ...) so I am returning to my self-imposed internet-surfing ban. Megan can be my surrogate :)
Supported: A community of zebras is already giving me valuable advise on finding a CVID specialist in the DC area. Thank you, internet! Thank you, Facebook! The 2 referrals I received from VCU have been outed as rude and rushed by multiple sources online. Excellent physicians, for sure, but I have been spoiled by compassionate, professional, courteous, and engaged medical professionals in 4 hospitals since 2012. As a consumer and client, I have a choice. I choose professional, polite, and approachable medical practitioners. A third referral is reaping praise from multiple references with plaudits for manner, demeanor, and engagement. Guess who I will call first?
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| "People with CVID are called Zebras because doctors are taught in medical school, “If it looks like a horse and sounds like a horse then think horse–not zebra” (as in a rare disease). CVID patients are the exception! We are Zebras! Because CVID is very rare, some doctors overlook it and misdiagnose it as something else because the symptoms are identical to other diseases." |
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