Mary is a former registered nurse, a mother to four daughters, a wife, and a grandmother to one grandson as well as several “grandpets”. She’s an avid gardener; growing cherry tomatoes that have gotten up to nine feet tall! If all that seems like a lot to juggle, you’ll wonder how she does it all while dealing with everything else on her plate. Mary is living with both CVID and RA. After speaking with her at length about this incredible balancing act, we concluded she should probably run for president (she’s got my vote). Here’s what she had to say about her experiences;
Mary:- “Mom had rheumatic heart disease and RA maybe she had an immune deficiency, I don’t know I don’t think they knew to check for it. As a child I had strep throat and meningitis, a lot of infections, and was always really fatigued and tired. As I got older it didn’t get better, it got worse. Infections would settle into my lungs, I’d get bronchitis every six to eight weeks. The day before I was diagnosed I had these great big bullseye lesions all over my skin and I couldn’t get rid of them. I had chicken pox three times. I was sick with chicken pox for about 4 months and then I got varicella pneumonia. After that subsided I started getting joint pain and swelling. That’s when I went to the rheumatologist and got sent to the immunologist.
I worked so much when the girls were younger. I would just get treated when I got really sick and didn’t really take care of myself. Maybe I could have gotten diagnosed sooner, but I don’t think most doctors look for it [CVID]. With my history of becoming sick after receiving vaccines and not forming antibodies and because biologics for RA could wipe out the rest of my immune system if there was a problem, my immunoglobulin levels were checked. I started on immunoglobulin right away but I still get infections. That was about three years ago.”
Patient Worthy: – “I would have thought that patients would feel better after treatments but I’m learning that you can feel pretty terrible right after an infusion, do you experience that?”
Mary:- “Yes I get headaches and really tired afterwards. I get infusions on Mondays and I don’t plan anything, I sleep a lot afterwards sometimes ten to twelve hours. I feel kinda crummy. On Tuesday I feel pretty good but I start feeling run down again on Thursdays. It’s difficult because the biologics for arthritis knocks out immunity so I’m already more susceptible and then with CVID it’s like I feel like I’m playing catch up. I take immunoglobulin to counteract CVID and then these caustic drugs for RA. I space them out, infusions on Monday, biologics on Wednesdays.
I haven’t taken biologics recently because I started on antibiotics and I can’t take them with the biologics when I have an active infection. So it’s silly to take them and then get an infection and not be able to take them for months. It’s hard to not have my RA not get worse and not have infections too. I’ve tried multiple drugs and they don’t work or I can’t try it long enough to see because it’s limited by immunodeficiency, but I try to look at thing positively. I have my sad days but my family has a good sense of humor so we laugh a lot and it’s not at the forefront of our lives. It’s a hiccup but we stay active and live our lives.”
Patient Worthy:-“Wow so it’s like you have to choose between consequences of RA or of CVID, it’s a catch 22. Is one worse than the other for you?”
Mary:– “I do have to choose between being sick and RA pain. I can deal with pain and stiffness, the physical limitations of RA and it’s not fun… but it doesn’t make me feel like when I have an infection and a fever every day. That feels like an entire body reaction… I’ll sleep for 24 hours, my whole body aches. I’d rather just deal with RA, I think it would be easier so I would lean more towards treating the immune disorder and just treat RA symptoms. It’d be easier to deal with. “
I asked Mary if she had seen noticeable improvements since starting treatment. She does say she gets infections less frequently but that both her CVID and RA seem to have gotten progressively worse over the years. She’s gotten much better at deciding when she needs to go to a doctor but feels she’s become less responsive to antibiotics.
Patient Worthy:- “Had you heard of CVID before you were diagnosed? Does your background in nursing help you at all?”
Mary:- “No I think it doesn’t because when doctors or nurses see that you’re in their profession they don’t explain things as deeply as they would if you weren’t. I try not to let them know so I get much more information and support than if I say something. You’d think it’d be the opposite, you’d think they’d explain it more, but they don’t if you say ‘I’m a nurse and don’t understand.’ It’s an interesting phenomenon.”
The doctor didn’t really explain it in detail and I hadn’t heard of it I didn’t know that anything like this existed until I did my own research and some of the research is pretty technical, it’s not easy to tread it’d be nice if there was more information about it. I did a lot of google searches but it didn’t really help with what to expect as time goes on. I just felt like I had been handed my diagnoses and immunoglobulin and been told “’Here you go don’t get sick, don’t get any vaccines.’ I know there’s more than that but there’s not a lot of information for patients, more for providers.”
Patient Worthy:-“Yes I think that is a big issue, that’s a big part of what Patient Worthy is trying to do, provide information specifically for patients.”
