Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I think a LOT of new people find us here on DS when first getting diagnosed. I always try to tell people to be open minded when seeking online support because people are usually: newly diagnosed, not yet on treatment and very ill, or having a specific issue and are looking for help. RARELY do we post about our positive experiences with treatment. Maybe its because we have a lot of new people? I want people to know there is hope. Will we be normal? No. But we do find a new normal. So most of you know my sitch so plug your ears, I'll start:
Single mama, 2 cats & a dog, own my own home and work 2 jobs. I was on IVIG for 3 years, had some issues but my health DRAMATICALLY improved. I noticed a difference probably on month 4 and it was very gradual. My IGG was about 700-900 on IVIG and I was still getting sick, but couldn't complain, it was WAY better than before treatment. Now, been on subq almost 3 years, IGG last month was 1660...my arthritis is now manageable most days, brain fog & memory recall have both improved (not typical btw). I developed a very rare lung disease because of CVID but live like any normal person. I don't mask, ever, as a seasoned immuno told me the masks are worthless, after about 10 seconds they are wet from breathing and useless. I grocery shop, go to Walmart, fly all over the US, even spoke to 200 people in September. I go to my childs functions...heck, I can't think of anything I DONT do.
It takes a bit of tinkering with your dose, speed, pre-meds and advocating for yourself...but it does get better :)
Single mama, 2 cats & a dog, own my own home and work 2 jobs. I was on IVIG for 3 years, had some issues but my health DRAMATICALLY improved. I noticed a difference probably on month 4 and it was very gradual. My IGG was about 700-900 on IVIG and I was still getting sick, but couldn't complain, it was WAY better than before treatment. Now, been on subq almost 3 years, IGG last month was 1660...my arthritis is now manageable most days, brain fog & memory recall have both improved (not typical btw). I developed a very rare lung disease because of CVID but live like any normal person. I don't mask, ever, as a seasoned immuno told me the masks are worthless, after about 10 seconds they are wet from breathing and useless. I grocery shop, go to Walmart, fly all over the US, even spoke to 200 people in September. I go to my childs functions...heck, I can't think of anything I DONT do.
It takes a bit of tinkering with your dose, speed, pre-meds and advocating for yourself...but it does get better :)
So...are you sure about the dose you are on? So just assuming your syringes are 60 mls like most...you are infusing nearly 13 full syringes every week under your skin in your tummy or thighs? Please forgive me...this is a SHOCKING amount for subq weekly...heck even on IVIG that would be alot for one month. I am on 12 grams/120 mls (or 2 syringes full) weekly which is a healthy dose and when I was on IVIG I was on 27 grams per month, kinda low but not crazy low....I do amazing on 12 grams per week of subq
Three years ago a dear and kind woman entered our lives. She had just given birth to a son. Now he is a cute toddler.
We met at the doc office, that first ivig she held my hair as I vomited she wiped my face with gentle hand. Her support of my present husband gave him courage as I rode the wave.
Sense then we have doubled the fluids in the ivig. No more vomiting. She taught me through the grief of accepting this new life.
On the third ivig a different nurse came, it was not good. she finally after several sticks gave me a 8 hour infusion in my thumb!
Ashley was incensed that she p0ut me through that.
The next week I did all the research to find a radiologist that placed a power port in my right chest. Ashley was the first to access it so carefully as it was yet healing.
I won a scholarship to the immune foundation conference that year. I was only a few months into the ivig's. Ashley came on the Saturday and we used a wheelchair to get around the center as I infused and listened to all the info I could. She got in free and it was a 300$ savings for her. I had a hotel room the middle class could only dream of and a holiday from parenthood for two days.
The children and my husband attended the evening events. This was fine fair. I got to see the international and national community together. So many of us. I had affiliation and saw that I was far from alone in this.
In my area I have not really met another with cvid I I got to know that we were all out there thriving and suffering together.
Ashley studied about the effects of folks like me who manage PTSD. We have valves that hinder iv in our arms, the cortisol flush of the stress hormones were causing the ivig to go badly. She read a medical paper on the effects and took the advice. She just made no hessidencey and just accessed port . It startled me for before I got to tell her when I was ready. That habit was allowing my stress hormone to build. The less stress hormone the side effects stopped!
that is my dear Ashley She is always finding ways to make it better.
As a survivor of torture she made ivig normal,
Every month she brings doughnuts for the children.
We now go out during ivig and do nails or pedicure. She taught me how to not allow my nails to be bitten, not allow my feet to get cracks.
She taught me to go through the grieving process and that 6 hours a month is not time to grieve it takes a year or so to process the diog.
CVID was always a part of my life, even though no diog. until I was 49. Ashley as a part of my life has changed the cvid into something manageable.
Sorry, Kelli, typo on my part, wrote this late in the evening. My weekly subq dosage is 7.5gms/75ml. I fill one syringe up to 50ml and the other with the remaining 25ml.
I would love to be 1300+, I haven't seen that since before 2009. I transfuse in my stomach, I haven't tried my thighs yet as it would seem like it is weird to walk and I'll usually work/play on my laptop, which is on my lap. Do you have a site preference? If you do your thighs, do you do both legs? I hate doing 3 sites, so I tip my hat off to you for doing 5 sites weekly. But, I am glad that I am able to do the transfusion myself in my home vs. going to a transfusion clinic.
May I ask when were you diagnosed? Also, my list of food and contact allergies is enormous, has CVID brought on a lot of allergies for you?
As much as this sucks, I know that there are many, many ppl that are far worse than me, so I am grateful and feel blessed.
Sending you warm thoughts and prayers as you battle your lung disease. A girlfriend of mine, who was like a sister to me passed on from Lam's Disease (lymphangioleiomyomatosis).
Thanks, I never thought of pushing for an increase, I just accepted that I haven't been able to get my IgG levels above the 880's. I have my next appt with my Immunologist the day after Christmas and will make the suggestion.
I am just coming off of the PCIP program and will beginning a new insurance the 1st of year and as usual, no one from the insurance company has any clue what the coverage for this treatment will be. I had one guy tell me it fell under contraceptives and it was 100% covered.... Ha, Ha.... my reply, I hope no one is depending on this working as a birth control......
Kelli- if you find yourself making it to somewhere in LA, let me know, I would be happy to meet up with you. And if you make it down my way in Hermosa Beach, I'd love to show you this little community. The South Bay: Manhattan Beach, Hermosa Beach and Redondo Beach is just south of LAX.
To all- again, I am so thankful for your wisdom and support. I've only told a few friends and although they are sympathetic and supportive, they are not able to empathize or fully understand. Even my OBGYN looks at me "With the Deer in the Headlights" look with no understanding what I am saying.
Live...Laugh...Love...