living with immune deficiency, & general poor health

Parent Cafe
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<p>hey everyone,</p>

<p>as you may remember, i was sick most of last fall term. i thought i’d be fine this term, but evidently not.</p>

<p>since october 31, i’ve had a fever, vomiting, sore throat, severe congestion, diarrhea, coughing up fluid, urinary tract infection, pinkeye, bad reaction to medication (phenylephrine, found in over-the-counter tylenol sinus that i was taking for congestion), and pneumonia or something else wrong with my lungs (fluid, low blood oxygen, shallow breaths, chest pain…). the phenylephrine made my heart race and my normally-low blood pressure go through the roof. it also kept me from sleep: i slept a combined total of something like sixteen hours between monday morning and saturday morning, when i finally crashed and slept all day. i have no appetite (this isn’t an exaggeration: none), and i’ve lost weight.</p>

<p>because it’s the weekend, i haven’t been able to see a real doctor, but i am going to the hospital tomorrow. i don’t think the college health center knows what it’s doing; i’ve only seen a nurse and a physician’s assistant, but i need an m.d., and they prescribed an antibiotic for my lungs when they don’t even know if whatever i have is bacterial or viral.</p>

<p>a family member who is a nurse spoke to the doctors he works with, and they suspect i have some sort of immune deficiency. after some reading, i’ve found that the symptoms of common variable immunodeficiency are consistent with what i’ve been experiencing:

[eMedicine</a> - Common Variable Immunodeficiency : Article by Robert A Schwartz](<a href=“http://www.emedicine.com/DERM/topic870.htm]eMedicine”>Common Variable Immunodeficiency: Practice Essentials, Background, Pathophysiology)</p>

<p>obviously i don’t know yet whether that’s what i have, but everything i’ve read so far is spot on.</p>

<p>it would also explain why i was so incredibly ill last fall. then i didn’t bypass the college health center and never saw a real doctor, only nurses, and i ended up dropping one class, underachieving in two others, and not establishing any real friendships my first term in college because i was physically unable to do it all. this time i’ve made arrangements with deans and professors; i’ve had straight a’s so far this term, and i’m not going to screw it up.</p>

<p>i’m going to the hospital tomorrow to be tested and receive a conclusive diagnosis. until then, though, i was wondering if anyone here has experience with immune deficiency, whether personally or a family member or acquaintance? anything would be helpful; until friday i thought i just had an ordinary virus, so this has all been a bit overwhelming for me.</p>

<p>thanks in advance,
e.</p>

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<p>cameliasinensis, hopefully, you don’t have CVID, but are just getting sick due to stress and being around so many people with bugs of their own.</p>

<p>All these illnesses you listed are not uncommon in college students. My daughter had many of these illnesses and a couple not listed. She is fine now. </p>

<p>So good luck to you and try to get some rest.</p>

<p>Healthy people can become unhealthy pretty quick with the amount of sleep you’re getting.</p>

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<p>actually, before i got sick, i was sleeping 8-9 hours a night. i’ve had trouble sleeping after i had an extreme reaction to medication on tuesday and wednesday, but never before that. compared to most college students, i have an incredibly healthy lifestyle (eating well, exercising, sleeping a lot, etc.).</p>

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<p>Don’t be so quick to diagnose yourself. My S has been sick more times than not since starting college this fall. He’s been on antibiotics twice all ready (only needed them 3 times for the first 18 years of his life). He’s been in and out of the health center with a bad cold similar to the flu (took two weeks to get over it, fever, cough, congestion, etc.). Just as he started getting better, he was hit with a sinus infection and needed antibiotics. Three days after finishing the antibiotics, he came down with a wicked sore throat–just wicked with a fever. He was given another round of antibiotics. Although he just finished the last round of antibiotics, he’s still not feeling great. </p>

<p>It’s great that you have a healthy lifestyle. Remember that everything you touch has been touched by a bunch of other infected college students–doorknobs, bathroom sinks, desks, etc. Combine that with noise in the dorms, not always the greatest food choice available, a less than perfect sleep and exercise schedule and sickness is going to happen. My only advice is wash your hands more often, take vitamins, eat the best you can, sleep when you can, etc. Hopefully your illnesses are just the typical freshman year yuk. Kind of like when kids in preschool get sick all the time because it’s their first time being around so many kids.</p>

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<p>i’m not a freshman; i’m a sophomore. i was sick nine of ten weeks my freshman fall (colds, sinus infections, something that seemed like mono but wasn’t quite, vomiting, extreme fatigue, etc.). i take a daily multivitamin, and until i got sick, my sleep, eating, and exercise patterns were impeccable.</p>

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<p>Hang in there. Hope you feel better soon. :)</p>

<p>It’s not necessarily Freshman only. All college students get sick. Everyone is coughing on everyone else–sickness spreads around like crazy. While your healthy lifestyle is great, it’s not going to protect you from the constant spreading of germs.</p>

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<p>My older daughter was also sick with recurring sinus and chest infection for 2 months this fall. It took a few rounds of antibiotic and some healthy living before she started feeling better.</p>

<p>I hope you get some good news tomorrow.</p>

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<p>Physician here. dstark had some realistic info. Do ask questions of your physician, including your concerns about your immune system and how all of your symptoms relate to any diagnoses. They should be able to explain to you why you do or don’t need all the tests possible since it can be very expensive for you, even with good health insurance, to have every test imaginable. If you remain frustrated you can get a second opinion in your hometown over a break. It is very possible you are getting sick secondary to a stressed lifestyle with exposure to many opportune germs in the college environment and have a normal immune system. Sometimes the most miserable person can be suffering from a bad upper respiratory virus that just needs time and the usual rest, good diet et al. It can happen that two common illnesses occur at the same time, and that a drug reaction can compound your misery without an overwhelming illness being present. The campus area medical staff will know which “bugs” are going around. Hope you get better soon. Crossposted with other parents’ good advice.</p>

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<p>This has been a bad fall for illnesses. My kids have reported this in their schools and I’ve seen it at work.</p>

<p>That said, I have a niece that has an immune problem. She had heart surgeries as an infant up until her teenage years. She had to be homeschooled for a while. She looked for a college with low students per class numbers along with a relatively small campus. She has a private dorm room with special equipment and weekly medication deliveries.</p>

<p>She’s having a great time at college and is a great kid with great parents that have been through a really tough time.</p>

<p>I know the feeling that you describe with the sinus medication. I can’t take more than small childrens doses. Anything stronger and I have some pretty strange symptoms.</p>

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<p>The only advice I can offer is to have maintenance check all the filters where you live and sleep. Maybe buy a HEPA filter clean air machine. That much upper respiratory trouble could be pollen, mold, dust mites, etc. induced. Maybe see an allergist and get tested?</p>

<p>In any case, I certainly hope you get to the bottom of your problems and start to feel better. Good job keeping up in your classes and building solid grades. Good luck to you!</p>

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<p>That’s why “student health” centers are often referred to as “student death”. I have many stories that would curl your hair …</p>

<p>It’s a good thing that you’re going to see a doctor elsewhere. I hope they’re able to diagnose you quickly and get you back to feeling well so you can concentrate on school, your social life, and all the stuff a college sophomore should be spending time on.</p>

<p>Let us know what happens.</p>

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<p>Good luck Camelia, I do feel for you. I agree that allergies might be something to look into. Also what was your health like this summer when you were off campus?</p>

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<p>Is there a chance you could have had mono in the past? </p>

<p>S1 had it earlier this fall, and has been sick with various lesser maladies ever since-- chesty, mucousy coughs, sinus issues, loss of weight and condition-- probably as a result of NOT taking it easy and getting enough rest. Very frustrating to a parent!</p>

<p>If he hadn’t been nagged into going to the health center when his initial symptoms were bad, he never would have even known he HAD mono, as it never would have been diagnosed. Am just wondering if these sorts of lingering ills might apply in your case as well(?) I would be concerned about the possibility of pneumonia too. Good luck, and keep us posted-</p>

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<p>My husband had a very bad case of the flu that turned into pneumonia (this was many years ago, when our oldest was a baby). He rarely got sick up to that time, but for almost a year after recovering from pneumonia, he was sick more often than not. My son’s pediatrician (also an internist) was our next door neighbor, and one day we were talking to him about my h’s recurrent viral infections. He said told us that very often the body’s immune system takes up to a year to build back up after a serious illness. I don’t know if that was just his personal opinion or not, but that held true from my h. Within a year, he was back to normal, and to this day, has extraordinarily good health. I hope you start feeling better soon, camelia.</p>

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<p>i was tested for mono last fall, and it came back negative. </p>

<p>i’m calling the hospital now. i’ll keep you posted.</p>

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<p>Camelia, seconding the crowd that recommends waiting for what some real doctors have to say. Bring up your concerns, but do let the doctors take care of you.</p>

<p>I got about as sick as you are when I was in grad school, and with the delightful help of the internet, diagnosed myself with everything from COPD to congestive heart failure. It turned out to just be a bad case of pneumonia that I couldn’t quite kick, exacerbated by allergies and an infection of basically every system along my respiratory path. (Better yet, I had a terrible reaction to the antibiotics the health center gave me, and they chewed up everything along my digestive tract! Two months and a colonoscopy later, I was about where I’d started before I took the antibiotics.)</p>

<p>I’d had a weakened immune system from an earlier illness that I tried to kick for several months, and the pneumonia just kicked me while I was down. But really, everything seemed horrendously wrong with me, I couldn’t take more than a few steps without having to rest, and it dragged on for a very long time. I thought <em>surely</em> something very bad and chronic was wrong with me, to have been so terribly sick, but when I finally found doctors that I trusted (that chest x-ray and blood draw that my pulmonologist did was FAR more than the student health center had done…) and they finally convinced me that it was just pneumonia and post-nasal drip, I was a combination of relieved and pretty ticked off (“I blitzed a whole semester of grad school for something that’s just a cold-gone-wrong?? You’ve gotta be kidding me!!”).</p>

<p>After a while, when I actually started to get better and could trust that it wasn’t something chronic, the ticked-offedness faded and I realized how incredibly glad I was that it was just a bad bout of pneumonia. Colds still knock me off my feet for longer than any of my colleagues, and I still have to really be careful to not let it progress to something worse, but I don’t go to the internet for diagnoses anymore. I’ll get <em>ideas</em>, sure, like you’re doing now, but I’ll take them with a huge grain of salt, and I refuse to let them worry me until I hear from a doctor I trust.</p>

<p>So, don’t worry yet…! Find the best doctor you can afford, see if they’re someone you feel you can trust, and then listen to what they have to say. The internet (much like friends of friends) hasn’t examined you, hasn’t run tests on you, and you may luck out yet. Don’t start living with chronic poor health until you have to.</p>

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<p>Camelia: Whether you have an official immuno Dx or not, you can still have immune system issues. My DH and D2 get no illness, they are so great in terms of health, and when they occasionally get something wrong, they recover incredibly quickly. D2 got mono and was barely ill, just sleepy. I swear they could lick the doorknobs in public buildings and not get ill.</p>

<p>D1 and I get everything and anything going around and get it worse than any one else. I have been teaching her for years, she just has to be that much more careful than any one else; she CANNOT get over tired, she must carry sanitizer at school; she must get enough sleep/exercise/proper foods.</p>

<p>Official or not, you may just be one of those people that must baby themselves and avoid all potential illnesses. D1 got mono and was miserable for 6 weeks, whilst her sister was sleep for about one week.</p>

<p>A century ago it would have been a weak constitution and the vapors, but basically we have to fight not to get sick and if we get sick, don’t power through it, take care of yourself and take it easy.</p>

<p>I know that stinks when you are at a top school surrounded by movers & shakers, you don’t want to be the boring sick one, you want to have fun. But then when you are sick, that is even worse, add to that the stress of classes!</p>

<p>If you have a lowered immune system, you must learn your body, your cues, your weaknesses and avoidavoidavoid!!</p>

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<p>cameliasinensis, how are you doing?</p>

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<p>i wasn’t able to get a doctor’s appointment until tomorrow (wednesday), but i went to the college health center again yesterday and received an inhaler to clear out my airways. that and the antibiotics seem to be helping, as i am feeling a little better, though i’m still coughing a lot. the good news is that i don’t seem to have pneumonia, “just” a bad case of bronchitis.</p>

<p>so i seem to be over the worst of my infections for now, though i’m still tired and generally weak, but at my doctor’s appointment tomorrow i will ask to be tested for any underlying condition that might explain why i’m abnormally susceptible to infection in the first place.</p>

<p>i’ve spent most of today in bed planning for an on-campus group/initiative that i am starting up. i’ve been in contact with professors, administrators, and possible partners who might help me get this idea off the ground, and it seems as though the college is interested in funding me, so i’ve had a lot of good news and promising conversations. it’s a pretty ambitious project and will be a lot of hard work, so i’ll need to be healthy enough to run that and maintain my academic performance, which is still somewhat uncertain – but i’m excited about it and it’s taken my mind off how awful i feel, which is obviously positive.</p>

<p>i’ll let you know what i find out at my doctor’s appointment tomorrow.</p>

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<p>Glad to hear that you’re feeling better. Good luck with your project.</p>