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.
Complete Vent Ahead.
I am heading to India in less than 2 weeks for a 2 week trip so I am getting a lot of immunizations. When I went to my travel clinic they were running about 20 mins late and I went off the deep end when the nurse showed up. I started crying I was so upset. She obviously was thrown as was my husband. I realized I now assume all nurses are not to be trusted and I assume they all lie to me and do bad things to me if I am not right on top of them.
I have had one nurse flat ignore the fact I was having a reaction to the infusion (my first) and continued to increase the rate. My next one would increase the rate without telling me so he would know for sure if my headache was real when he increased the rate. The next nurse told me we did not need a pole for the infusion but did not prepare the bag properly for that and my line was completely filled with air and I had to catch it. My current nurse is reluctant to use a pump because she does not like technology but before the pump, her recorded infusion rates and the actual time I took to do the infusion did not add up and I was having bad reactions. She does use the pump now but it telling me that my blood pressure is too low and I need to eat more salt. She does get the needle in on the first try usually, keeps a close watch that everything is going smoothly, and will not increase my rate while I am asleep anymore, so i will keep her. I just hate that I now mistrust nurses so much. To top it off, when we went back to the travel clinic nurse she was about to give my DH and myself both the HepA/HepB combo shot and my DH was only suppose to be getting HepB. I called my first doctors office to try to get antibiotics while I was on a trip, like he told me to if I had problems, and the nurse did not want to give him the message. She told me it was nothing he could do and I had to see a doctor where I was at. I asked her to humor me and he did call in a prescription for me in the end but getting to him was difficult. I have changed doctors to someone whose staff understands better what CVID entails. All this in less than a year. Now we may need to move to India for 2 years and I have to find new doctors to trust. I think I am feeling a little overwhelmed.
Not really needing advice just wanted to vent.
I am heading to India in less than 2 weeks for a 2 week trip so I am getting a lot of immunizations. When I went to my travel clinic they were running about 20 mins late and I went off the deep end when the nurse showed up. I started crying I was so upset. She obviously was thrown as was my husband. I realized I now assume all nurses are not to be trusted and I assume they all lie to me and do bad things to me if I am not right on top of them.
I have had one nurse flat ignore the fact I was having a reaction to the infusion (my first) and continued to increase the rate. My next one would increase the rate without telling me so he would know for sure if my headache was real when he increased the rate. The next nurse told me we did not need a pole for the infusion but did not prepare the bag properly for that and my line was completely filled with air and I had to catch it. My current nurse is reluctant to use a pump because she does not like technology but before the pump, her recorded infusion rates and the actual time I took to do the infusion did not add up and I was having bad reactions. She does use the pump now but it telling me that my blood pressure is too low and I need to eat more salt. She does get the needle in on the first try usually, keeps a close watch that everything is going smoothly, and will not increase my rate while I am asleep anymore, so i will keep her. I just hate that I now mistrust nurses so much. To top it off, when we went back to the travel clinic nurse she was about to give my DH and myself both the HepA/HepB combo shot and my DH was only suppose to be getting HepB. I called my first doctors office to try to get antibiotics while I was on a trip, like he told me to if I had problems, and the nurse did not want to give him the message. She told me it was nothing he could do and I had to see a doctor where I was at. I asked her to humor me and he did call in a prescription for me in the end but getting to him was difficult. I have changed doctors to someone whose staff understands better what CVID entails. All this in less than a year. Now we may need to move to India for 2 years and I have to find new doctors to trust. I think I am feeling a little overwhelmed.
Not really needing advice just wanted to vent.
Right now I want to VENT!! My infustion was scheduled for August 25th and the day before the nurses called to cancelled it because one is going on vacation (thanks for telling me the day before) and the other one has meetings the whole day and the next day) and I AM SO FRICKING FATIGUED!!! I dont say anything to any of the nurses, dont want to piss anybody off. ALWAYS try to stay on good terms with EVERYONE OF THE NURSES. I mean they are nice and good to me, its just that I wish they would have let me know, because I was counting down the hours to get my infusion, because of the fatigue.
So YEAH, go ahead and VENT!