I Have an Immune Deficiency

When I was a kid, I was always getting sick. If something was going around at school, I'd definitely catch it. I had pneumonia, strep throat, and stomach viruses multiple times. It was awful.

Finally, in high school, I saw an immunologist. He tested my Immunoglobulin levels and saw that I was IgG deficient. He gave me some sort of shot, and I felt immensely better and went a few months without getting sick. It was life changing!

Me, circa 2012

The immunologist said that I wouldn't need it again - which seemed odd to me. I was just a teenager and obviously hadn't gone to medical school, so he probably knew a lot more than I did about it; I trusted him.

Fast forward to when I was 26 - I've had so many infections, many were serious. Despite preventative treatments by my urologist, I started having UTIs at least once a month. I went in weekly for bladder instillations, took prophylactic antibiotics, drank a lot of water, took cranberry supplements, and did everything I possibly could to prevent them; they just kept happening. I started swelling and was absolutely miserable.

My urologist looked inside my bladder, but didn't find anything wrong. I asked her to see an immunologist to look for deficiency (I mentioned my prior deficiency) and a nephrologist to check my kidneys. “You don't need that,” she responded, “you just have a bad bladder.” Yet, she didn't find anything wrong with my bladder?

Bladder cystoscopy (scope)

I didn't stop having recurring UTIs until I went to a nephrologist after struggling with it for about two and a half years. By that time, I had about 28 UTIs in a row - 2 put me in the hospital, several put me in the ER, and I wasn't able to do much at all. Treating the kidney condition helped considerably, but I still got sick a lot, was swollen with inflammation, and felt awful most days. It was suspected that I had some sort of autoimmune condition, probably lupus.

Finding a rheumatologist was a struggle. The local rheumatologist was notorious for refusing most cases, and he refused mine after I mentioned my swelling. I called rheumatologists in Arkansas, Oklahoma, Texas, and Missouri, until I was able to find one that would see me in a few months; most were booked for a year or even five! It would require a six hour trip there and another six back, but at least I could be seen soon!

I was constantly ill, eating 700 - 1,000 calories a day, yet gaining weight from the swelling. My pain and fatigue were constantly worsening and I had sky high inflammatory markers in my blood, to the point of a leukemia scare. Thankfully, it wasn't leukemia, but I still didn't know what it was! Autoimmune conditions were looking more and more likely.

Inflammation

Traveling wasn't easy, but I pushed through everything and arrived at the rheumatology clinic. I broke down crying as I described my hellacious three year long battle with UTIs, swelling, and the even longer battle with inflammation and recurring illnesses. She did several tests and a thorough examination and medical history, but didn't think that autoimmune conditions were the culprit. However, I felt so bad that she sent me down to the hospital's emergency room.

In the emergency room, they were unable to draw blood due to the severity of the swelling. My ER doctor looked worried and ran several tests. After a CT scan of my abdomen and thorough examinations (again), he located a severe infection around my PEG tube with a lot of pus in channels in my abdomen. They promptly put me in the hospital.

It wasn't the first time I'd had an infection of my PEG tube. Though I cared for it properly, it'd been infected about five times since I'd gotten it in 2016. I'd been hospitalized for one infection, but this one was the worst. It was dislodged, somehow, and had to be replaced, then I received IV antibiotics. I stayed in the hospital a couple of nights before being discharged with oral antibiotics.

After returning home, the pus started draining out from a blister near the PEG. There was so much pus and blood that I resorted to taking hand towels to soak it up. I think I went through three towels before switching to gauze and tissues - but there was still a lot. My skin was very irritated by the drainage and then small amounts of my stomach contents started draining from the hole too. It was very painful and I debated going to my local hospital, but I was too scared of getting another asshole doctor that would just dismiss me, so I fought it at home.

I didn't start to feel better until after two weeks of antibiotics and another one spent catching up on sleep. The relief was short lived, and I caught a stomach virus that was spreading through my area. It lasted a couple of days for most people, but I had it for three weeks. During that time, I received news that I didn't have an autoimmune condition. I had an IgG deficiency.

I was so ill from the stomach virus that I got severely dehydrated and had to go to the emergency room. They put me in the hospital for a night to treat me for dehydration and check a few things. A resident physician came in and told me multiple times that I shouldn't be in the hospital and should go home; he spoke as if I forced them to put me in the hospital and was refusing to leave. When the attending physician came in with him, the resident repeated it again. The attending rubbed his forehead and said, “no, there is definitely something wrong and she's dehydrated.” The resident was undeterred and continued to lecture me for being hospitalized. He lectured me once more when he told me that I was being discharged.

Once I was coherent again, I called to make an appointment with a different immunologist, but my appointment wasn't for another two months. I continued to suffer and swell and feel miserable, and called the hematologist and hoped he could treat the deficiency. I cried with joy when he agreed to treat me and would see me the following week.

He listened to me thoroughly and went through my records from the rheumatologist before putting in a request for IVIG (IV immunoglobulin to supplement the deficiency). Instead of over two months, I'd receive treatment in an additional week.

Two bottles of IVIG

The infusion itself was easy: a small bottle of immunoglobulin was pumped into a vein over a 90 minute period. The swelling started to decrease immediately and I lost about 15lbs of water weight in a week and my overall condition started improving.

I had a second infusion in May and continue to lose the swelling and I'm gradually improving, but still require a lot of rest. Still, it's improving.

I've missed writing and just living. I'm excited to get back to it!