Okay, first, I'll try to keep it short, but I'm a little long winded, haha.
I was diagnosed by Dr. Mary Ellen Connelly at St Jude Children's Hospital in Memphis, TN, at the age of 12 after having been given my "death sentence" because no one knew what I had. I had recurrent ear infections my entire life that caused the doctors to want to put tubes in my ears (and still do at the age of 29), but the year I was diagnosed, I had every illness and infection you can think of, almost causing me to fail the seventh grade because of the number of days I missed. Thankfully, by a fluke, we were sent to an allergist because of irritations to pollens and what not, and working with the allergist, was a medical intern who had was also doing a rotation with Dr. Connelly. He immediately got her in touch with us and I was diagnosed at St. Jude. From there, I was put on IVIG: Gammaguard and Gammagobulin. (I was on one of them, but it was found to have Hepatitis that many patients contracted so we changed to the other.) My recollections on that part of my life is sketchy because it was so long ago and most of the diagnosis part, I was so sick and had such high fevers, I wasn't lucid for a lot of it.
If you know the disease, you know what the next six years entailed. However, when I was 18, I was frustrated with being "sick" and having to go through treatments so I refused any further treatments. I understood it was very likely it would kill me (as it had almost killed me before I was diagnosed), but I stopped taking treatments. To everyone's surprise, it seemed my CVID went away. I would occasionally get sick, and probably a little more frequently than most, but it wasn't anything too terribly alarming. I even went on to do things the doctors said I would probably never do. I have two very healthy children and went on to become a fire fighter/paramedic.
At the beginning of this year, though, I got a terrible ear infection, one of the worst cases my PCP has ever seen, according to him. I didn't think much about it. As the year has gone on, I have noticed a severe lack of energy. (As a fire fighter for one of the largest fire departments in the country, obviously that should have been noticed before had it been a problem... but it's just now manifesting.) I really thought I was going through some sort of depression because of a lot of things, but I'm beginning to question that.
About 5 weeks ago, I got what I thought was the flu (fever, nausea, vomiting, diarrhea... you know the symptoms), but it only lasted around 60 hours. Ten days later, I developed a cough that turned out to be bronchitis and ended up on antibiotics, steroids, and an inhaler. (No history of asthma.) Three weeks later, after caring for my kids who had the flu, I came down with the flu and have been battling it for seven days now.
The recurrent infections, combined with joint pain that sometimes inhibits me from walking and back pain that keeps me in bed at times, are obviously signaling my body isn't compensating like it used to. I honestly thought maybe this disease had gone into a remission of sorts or something, but I'm learning that's pretty much impossible.
But after coming to these conclusions, a new problem has begun. For about the past 5 months, I've noticed swelling in my hands and feet. Not like when my joints will swell (they've continued to do that with excessive exertion and strain on my extremities), but my lower legs, feet, and hands. And most recently, I have difficulty catching my breath. It can be with exersion or just sitting still. I was talking on the phone today to a friend, sitting in the chair, and got so winded, I had to call her back.
Now, I'm only 29 years old, but has anyone heard of Congestive Heart Failure (CHF) being a side effect? This has been the most alarming thing I've encountered. I've been putting off going to see an immunologist, but now realize I'm going to have to do so. But I'm concerned, especially because of my job, that I'm going into heart failure and there's absolutely no reason why I should be. As a paramedic, I recognize I have all the signs and symptoms that a normal CHF patient would exhibit.
I would greatly appreciate anyone's personal opinion or experience in this. Thank you!