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 just joined the group and I wanted to say thank you. It is a great feeling to be able to relate to a group of people and know exactly how they feel and what they are experiencing.
I began showing symptoms of CVID when I was 12. My spleen and lymph nodes were enlarged. My blood counts were off and the doctor was 99.9% sure I had lymphoma. I had a major lung biopsy, which came back cancer free. My doctors could not figure out what I had. I had tons of tests done, bone marrow, spinal tap, CAT scans, any scan you could think of and the list goes on and on. It took them six years to finally diagnose me with CVID. At this point my doc believed that I didn't need any treatment and just needed to come in to the oncology clinic every six months. I always had a chronic cough that would last the entire winter. My spleen has always been enlarged and I have had scans that have showed major scaring on my lungs from infections. However, everytime I went in they would give me antibiotics and send me on my way. I was not what they called a typical CVID paitent. I didn't end up in the hospital from infections, only had pneumonia three times and I put on a good front, go to work and learned to deal with the cough.
When I was 31 I was pregnant with my son. I had an amazing obgyn who didn't know much about CVID, she knew she was in over her head so she sent me to a hematologist for further testing and to see if I needed to do any special treatments to boost my igG levels. I was also sent to a pulmonlogist for updated PFT's. I was given two treatments of IVIG while I was pregnant. They did not go well. I had joint pain, vomiting and the shakes. This is scary enough when you are not pregnant but I was petrified for my baby. The first treatment took 8 hours and the second one was about the same time. I went into labor early so I was unable to have the third treatment of IVIG before he was born.
The first three months were normal first baby issues. Lack of sleep, not knowing what you are doing, enjoying your new little bundle. I started to feel really terrible. The one thing I noticed was that my spleen (I was hoping it was my spleen) was huge. Down past my belly button. It was also much harder and I began to have pain when I laid on that side. I called my primary doctor and I had an ultrasound. Which did show that my spleen was huge (thank god I was thinking it was a tumor). My IgG was in the low 300's. My white and red blood cells were low and my platelets. They started testing again. I went a couple more months. Could hardly function. Take care of the baby and then sleep whenever he did. By April I had lost 25 pounds, my lungs were in terrible shape. I was just a mess. I didn't go to the docs because I was nursing and didn't think they could do anything for me. One morning I woke up and started coughing up blood. I was admitted to the hospital and finally I started to get IVIG once every four weeks. I also had a new ID doctor who has been amazing. I did IVIG every four weeks for about 8 months. I am on steroids, benadryl and tylenol. I was still not improving. They moved it up to every three weeks. The group of doctors (hematology, pulmonology and infectious disease) decided enough was enough. They didn't know what to do for me. They decided to send me to Mount Sinai in NYC to see a specialist in CVID.
That was my turning point. The doctor in NYC was great. I was there for almost three hours going over everything. She came to the conclusion that I was grossly undertreated for years and my lung disease could of been avoided if I had started IVIG when I was first diagnosed. She put me on Subq IVIG (Hizentra) and after fighting with the insurance company for two months I finally started. I have seen a major improvement since I have started. I do 10 grams once a week. I am also on azithromycin every five days and symbicort two puffs twice a day. I am feeling better then I have in years. My IGg in now in the 800's. They do not think my spleen will go down. She said once it goes past a certain size they don't bounce back. But I can breath, I can play with my son, I can go to work and not have to take a nap during the middle of the day. I can lead a fairly normal life. I am still trying to get over putting needles in once a week. But if it works I will do anything.
Thanks for being here and for all of the inspiration!!
I began showing symptoms of CVID when I was 12. My spleen and lymph nodes were enlarged. My blood counts were off and the doctor was 99.9% sure I had lymphoma. I had a major lung biopsy, which came back cancer free. My doctors could not figure out what I had. I had tons of tests done, bone marrow, spinal tap, CAT scans, any scan you could think of and the list goes on and on. It took them six years to finally diagnose me with CVID. At this point my doc believed that I didn't need any treatment and just needed to come in to the oncology clinic every six months. I always had a chronic cough that would last the entire winter. My spleen has always been enlarged and I have had scans that have showed major scaring on my lungs from infections. However, everytime I went in they would give me antibiotics and send me on my way. I was not what they called a typical CVID paitent. I didn't end up in the hospital from infections, only had pneumonia three times and I put on a good front, go to work and learned to deal with the cough.
When I was 31 I was pregnant with my son. I had an amazing obgyn who didn't know much about CVID, she knew she was in over her head so she sent me to a hematologist for further testing and to see if I needed to do any special treatments to boost my igG levels. I was also sent to a pulmonlogist for updated PFT's. I was given two treatments of IVIG while I was pregnant. They did not go well. I had joint pain, vomiting and the shakes. This is scary enough when you are not pregnant but I was petrified for my baby. The first treatment took 8 hours and the second one was about the same time. I went into labor early so I was unable to have the third treatment of IVIG before he was born.
The first three months were normal first baby issues. Lack of sleep, not knowing what you are doing, enjoying your new little bundle. I started to feel really terrible. The one thing I noticed was that my spleen (I was hoping it was my spleen) was huge. Down past my belly button. It was also much harder and I began to have pain when I laid on that side. I called my primary doctor and I had an ultrasound. Which did show that my spleen was huge (thank god I was thinking it was a tumor). My IgG was in the low 300's. My white and red blood cells were low and my platelets. They started testing again. I went a couple more months. Could hardly function. Take care of the baby and then sleep whenever he did. By April I had lost 25 pounds, my lungs were in terrible shape. I was just a mess. I didn't go to the docs because I was nursing and didn't think they could do anything for me. One morning I woke up and started coughing up blood. I was admitted to the hospital and finally I started to get IVIG once every four weeks. I also had a new ID doctor who has been amazing. I did IVIG every four weeks for about 8 months. I am on steroids, benadryl and tylenol. I was still not improving. They moved it up to every three weeks. The group of doctors (hematology, pulmonology and infectious disease) decided enough was enough. They didn't know what to do for me. They decided to send me to Mount Sinai in NYC to see a specialist in CVID.
That was my turning point. The doctor in NYC was great. I was there for almost three hours going over everything. She came to the conclusion that I was grossly undertreated for years and my lung disease could of been avoided if I had started IVIG when I was first diagnosed. She put me on Subq IVIG (Hizentra) and after fighting with the insurance company for two months I finally started. I have seen a major improvement since I have started. I do 10 grams once a week. I am also on azithromycin every five days and symbicort two puffs twice a day. I am feeling better then I have in years. My IGg in now in the 800's. They do not think my spleen will go down. She said once it goes past a certain size they don't bounce back. But I can breath, I can play with my son, I can go to work and not have to take a nap during the middle of the day. I can lead a fairly normal life. I am still trying to get over putting needles in once a week. But if it works I will do anything.
Thanks for being here and for all of the inspiration!!
Thank you so much for sharing your story and welcome. People on this board are amazing :)
BTW , I have major "mom" guilt. My daughter has known nothing but me being ill, exhausted, etc. My work? Well I'm trying to work as long as my body will let me but I fear I will end up on disability eventually. If my lungs flare again, my employer will not allow me to come back as I have been out so many times before (on disability not reg sick time).
Guilt is a terrible thing. I feel guilty about not spending enough quality time with my son, about how much work I miss, that I don't spend quality alone time with my husband, about how much we spend on my health bills, and the list goes on and on. My son is being followed by an immunologist just in case he is part of that small percentage. Once a year blood work and he goes and sees him every six months. Dr. Cunningham Rundles said he most likely will not get CVID, but I rather him be followed then not. Talk about Mommy guilt then...it never ends!