My whole life has been plagued by various infections, weird viruses and assorted “stuff.” There was the twice yearly pneumonia battles, various skin “things”, and constant chest and/or sinus infections. No one thought much of it, but it caused a lot of missed school and that of course made everything more difficult. Other issues like constant episodes of passing out, high heart rates, and asthma symptoms masked the constant infections. It was a parade of doctors visits, antibiotics, and lots of naps.
Fast forward to adulthood and taking charge of my own healthcare and I found myself wanting some answers. I found an incredible asthma/allergy/sinus specialist in Baltimore who helped me partially sort out some of this mystery. I was placed on lots of asthma meds (even Xolair) and for the first time someone was tracking the oddities of my infections. There were more antibiotics, but my asthma was under better control and I was even going to start allergy shots (if I ever got “better.”) I still managed to get pneumonia at least annually, which usually meant at least an ER visit, but overall things seemed to be improving. Again, other health issues got in the way and took priority.
When it became time to leave Baltimore and move to Myrtle Beach, I was a hot mess-(more on that in a separate post). I landed in Myrtle Beach and quickly tried to situate medical providers. Through a series of failures and dismissals, I found myself at MUSC in Charleston. I navigated this new health care system and found Dr. Cox- a dual trained and certified immunologist/pulmonologist. I shared my medical history and besides having an awesome plan for my asthma, he had a hunch about something and wanted to run some bloodwork. After a few more appointments, a vaccine challenge and some more tests, I had a new diagnosis- I had a Primary Immune Deficiency, and he suspected that it was CVID (later this was changed to a general PI). I was to start on infusions that I would learn to do myself (subq) of immunoglobulin. These weekly infusions would act as a booster to my immune system since it was essentially a piece of junk and I struggle to make antibodies to protect me from infections. I failed the vaccine challenge, which meant when I was given the pneumonia vaccine, I failed to mount an immunity to any of it. Essentially my immune system said “No Way!” Infusions would provide me, temporarily with antibodies that “normal” adults have. These infusions are made from plasma donations and are very expensive.
I went to an infusion center and a nurse showed me how to give myself the medication in either my thighs or abdomen. I believe I started with six needles (lines) and used Hizentra as the first medication. It also required use of a pump that I turned to activate and took about an hour total. The nurse told me I was good to go and to repeat the infusion every week. I took home my giant bag of medical supplies and little did I know that my life would forever be changed. I appreciated the freedom that I could not only do my own infusion when I was able to fit it in my busy principal/family life, but quickly become inundated with medical supplies and the “pressure” to schedule my infusion. Some weeks it was easy and didn’t interfere with my “life,” other weeks, when it leaked or caused bruising or something didn’t work right, it stressed me out, but I persisted because I was getting less infections and my IGG level was finally going up and reaching towards my goal of over 1000.
Overtime, my dosage was adjusted a few times, but I fell into a rhythm with the infusions, I had what I thought was a ridiculous amount of medical “stuff” (little did I know what was to come!) and it became my new normal until I had a bad infusion and developed aseptic meningitis for the first time. I had a terrible headache, neck stiffness and felt really “bad.” I went to the ER and they did a spinal tap (in the ER by a ER Doctor and not a specialist- OWCH!).
After recovery from meningitis and having my infusions on hold, I developed several infections. Dr. Cox to the rescue and adjusted my infusions. I was finally back in business but still a medical mess with other symptoms and conditions to be treated. I will chronicle these adventures in a different post, but long story short, I was forced to first leave the principal job and step back into the classroom (while I truly mourned this loss, I LOVED being in classroom as a 4th grade teacher!) After a while, my health guided me to a place where I had a serious conversation with Dr. Cox and he helped me realize that I was no longer able to work and needed to take, what could be a permanent leave, and begin the process of filing for disability. I was at a complete loss and didn’t know what to do. I could not afford to live on my own, had my dog Sofi, and was so sick, I could barely take care of myself. I remember making a difficult call to my mom- I held back tears when I simply asked if Sofi and I could move in with them in Florida. Of course they said yes, and within a month, I packed up my RAV-4 and Sofi and I made our way to Punta Gorda!
I found an immunologist in Naples (about 2 hours away) and he changed my immunoglobulin to Cuvitru and I was still infusing weekly. After two rounds of meningitis, more spinal taps, and hospital stays, it was decided that I needed to infuse smaller amounts more frequently. We together decided to infuse a small amount every day. In total it took about 30 minutes and I of course was delivered even more medical stuff. I found ways to organize it, but daily infusions took their toll on my overall mental health, I felt like I couldn’t escape the reality of always being sick.
Then chaos struck, I was super sick in the hospital and no one could figure out what was going on- my neurosurgeon (by this point had a vp shunt) decided to do another spinal tap and doing extensive testing on the spinal fluid. I remember him coming to my hospital room with the news that I had viral meningitis and needed to be put on strong IV antivirals among other things (lots of other things popped up from the spinal fluid- but were tabled for now).
After successful, but difficult treatment for viral meningitis, my immunologist had to figure out what would be next for my PI. We made the decision to change to IVIG (which meant getting a port since my veins are junk!) and he chose Acentiv as the drug of choice. After a long insurance approval process, I began receiving this new product at home with a great nursing team. This is what I still receive every 14 days and the whole process takes about 7 and 1/2 hours total.
I absolutely love my nurses that spend the day with me- we talk, order yummy lunches, and I finally feel less burdened by my Primary Immune Deficiency. It’s funny to me that when I was in control of the process, I struggled, but now that I have to depend on others to help, I finally feel better abut it.
I skipped a lot of trials and tribulations including needed 3 different ports, being septic and in the ICU (not once but at least twice), GI issues that some believe can be attributed to PI, more PICC lines than I can count, and most crazy- my year long adventure to get a fistula for IVIG. I am so grateful for my new MUSC immunologist, Dr. Williams, who has been an advocate for me and helped right the ship on this crazy journey.
So that was my day. This time I had a substitute nurse, but we talked the day away and with the exception of a needy pump (it likes to beep), it was a successful infusion. Tomorrow I may wake up and feel great and ready to take on the world, or I may fell like I got run over by a Mack truck- I never know how that will go.
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