I was diagnosed about 2 1/2 years ago and started IVIG 2 years ago. Mine is done via IV and I have a Hickman which is a type of central line. I’ve had 13 central lines over the past several years and I’ve had a central line for the last 7 years straight. I also have POTS so I’m on IV fluids, Benadryl and zofran at home. I get pneumonia a lot as well as GI infections. I’ve also had sepsis 4 or possibly 5 times with the first nearly killing me and a month in the hospital right through Christmas and New Years. I have had pneumonia every year since 2016 and all have resulted in hospital stays for at least one night but mostly a week or even more. I can’t work anymore because I’m such a high risk of getting sick. Usually a cold turns into pneumonia now. I thought I was going to not have pneumonia this year but I got it in August and it was septic pneumonia in both lungs. That was after 1 round of oral antibiotics, 2 different week long IV antibiotics and IV Decadron. This was due to green mucus I was coughing up. I even went to the ER the week before and got 1 bag of IV antibiotics, pain meds, and nausea meds. Bloodwork looked great as did my chest x ray. A week later I had to go to the ER again but I almost didn’t go because I was sent home the week before. I went this time because I gained so much weight in water I couldn’t lay down. I was a paramedic and a respiratory therapist and I knew the warning signs. My white count was 16,000, lactic acid was 3, and my at scan showed pulmonary edema in both lungs due to pneumonia. My ECHO showed changes and I’m waiting for my cardiology appointment. I’m pretty nervous. It showed mild pulmonary hypertension. My mom has it. It showed other mild issues plus atherosclerosis of the aorta. That has me scared more than anything. Even with IVIG I still get sick but it’s not as bad.
Wow I'm 17 and I'm just like her. I wish I had more resources for university next year because I want to go out of state but I'm on tenncare and can't rely on my parents insurance.
Hello Ruth, The IDF website has many resources on transitioning to college, jobs, questions on insurance, etc. You can go to www.primaryimmune.org and browse all of the information we have to offer. If you have a specific question you would like answered, you can use the 'Ask IDF' feature (the purple icon) at the top of the page. Thanks and be well!
