look where you were before and ask doc

i sat down last week with my hemo/cvid doc and we talked levels.... at 3 wks they are low but better than where they were when i started we decided they were acceptable levels since i would not even consider sub-q

I just got my blood work results and they went from 600 to 950 after 6 infusions. I was so excited but, unfortunately, I had a throat and gland infection. I think these references ranges are a joke. It all depends on the person. I am doing Hizentra subQ - 50ML. I was hoping that I wouldnt' get sick or take anymore anitbiotics. What were your levels before you started infusions? Is it normal to still get infections? It's all very confusing.

I guess I should consider myself lucky, I mean without any infusions, I have zero immunoglobulins in any of the categories, and I havent been sick in years so I guess I won't think about things. Who knows, I guess as long as I am not getting sick I won't worry about anything, I guess I want to blame my tiredness of cvids when in all actuality it is probably just "me". because I don't get sick anymore, I am for lack of a better term in "remission" although I know there is no such thing as that with this disorder. I would so like to get a job and work, because I am on SSI so I can receive medi/medi (medicare/medical) so I get everything covered. But man I cannot live on what the state gives me, I need to earn money, but I also need health insurance. I am so willing to risk going without infusions just so I can go back to work and earn some money. Do you think this is wize?

you are kidding of course

i look over the years and have noticed i have gone in and out of flares my whole life some so bad i can barely function and other times i can live a "normal" life.

no amount of money or the lack thereof is worth sending myself into a flare.

i recently went to disability i bring home about 1,000 mth less than i did working.... i learned long ago... it is not money that makes me happy or sad it is my friends and family and the outlook i have in life...

look at tiger woods, lyndsey lohan, and brittany spears the have all the money you could ever want and it hasnt made them happy people.

money doesnt make you a happy person you do.....

i dont know my numbers nor will i ever know aht my numbers are so i can in a conversion talk to you about my IGg numbers are such and such.... if i need info i go talk to my doc and we decide what to do from there.

i worry about what i can control and leave the rest up to the experts that is what i pay them for......i educate myself...but i am know i will never know enough to manage my illness on my own... and since i dont feel up to med school.... i will that to the experts and am a well informed patient.

After a few months of infusions, my low level is just over 1000 (3 weeks after an infusion), yet even at that I still get infections and feel exhausted a lot of the time.

Speaking of happiness, I've started listening to self-hypnosis recordings to help me deal with different aspects of this disease...I got them as apps on my phone (Droid), but they're also available on itunes and the iphone.
I have:
1 to help me be more positive,
1 for weight loss,
1 for letting go of stress,
1 for deep sleep (which seems to work really well and is the one I've used most so far),
1 for visualizing healing
1 for confidence (hope this helps me with facing going in to work ever day)

There are others that I'm interested in, but I want to give these a shot before I add more. Each recording takes about 10 - 15 minutes and can be set to repeat up to 9 times. The man who walks you through the self-hypnosis has a very pleasant voice with a Scottish accent that reminds me a lot of Sean Connery. If you Google "Hivebrain software Andrew Johnson" you will find these apps, and they run around $3.00 each.

:)

Ok, I have personally ready about 100 posts about levels. I have found that most people feel their personal best when their levels are around 1000. That is my goal as well. Most docs & some people have said "do you get sick anymore". No, but I am so FREAKING tired that I couldn't form the word "decorate" today. RIDICULOUS! My levels are currently at around 700. For 2 years almost of infusions I don't think thats a huge improvement lol. And for Kaiser, anything over 500 is normal. Whatever.

I cannot recommend you stop your ivig ever ever ever. Do you remember how you were before? GAWD I sure do. All my stinking credit cards are maxed out due to not having insurance and having to got to urgent care every dam month for one infection or another just so I COULD work. No way jose would I ever go back to that. My family calling me a hypochondriac drama queen because I have a 103 fever and feel like I have swallowed glass, eardrums have blown..Ok you get the picture lol

Oh and just to add? I haven't known any docs to draw after. I mean, your levels are great right after but then drop every day until its IV time again. I've only ever had mine run the day before my IVIG. Hope that helps :)

Everybody your so right. I just needed to hear that. I don't want to repeat the past. I just feel so trapped. No money to do anything. I am so bored. Oh well better to be bored and not sick, then sick and laying down at the county hospital. LOL

My level was run 7 days after my subq infusion. I'm still tired and I'm hoping that it eventually gets better. I'd be interested in seeing what my levels are right after my subq.

Well when I had Kaiser insurance, they always did a blood level check the day of the infusion, and then again about 4-5 days AFTER infusion, thats how my doctor always gaged me. But this doctor doesn't do it. This whole cvids thing is a mystery. 15 years ago, when I was in my middle to late thirties before I was diagnosed I was sick all the time, then after receiving ivig, yeah I got sick, but not as chronically, but now being in my early 50's I do not get sick anymore, in fact maybe at the worst MAYBE once a year during the winter with maybe a slight sinus infection, nothing out of the ordinary. I guess thats why they call in "variable" I am hoping that most of you will end up doing the same. Maybe after some years under your belt, you will get to be the same. HERES HOPING. But I agree, I don't think the level count has much to do about anything.

Oh god Kelli: Man you hit the head on the nail with the description of having glass shards in your ears of throat, God I remember going on vacation with my now EX-husband and our kids to South Dakota, we were all happy and excited, and I got the WORST THROAT INFECTION!!!!! It was like having broken glass ripping down my throat, when I swallowed. I couldn't help but cry. And I had this Type A husband that NEVER got sick, and I was soooooo scared to say anything so as not to ruin things. The pain was so bad, I had to break, HE WAS PISSED. We had to go way out of our way to find a Walgreens and get a prescription for antibiotics. My whole fricking time was ruined as I watched him and the kids swimming and having fun in the hot springs. That is the BEST CHOICE of words to describe the pain, like broken shards of glass!! And yes, people start thinking your a hypochondriac. He is remarried now to a healthy, wealthy woman with no kids. My secret revenge thought is that either he gets really sick and she walks, or vice versa. I know those are not godly thoughts, but I can't help it. I have to forgive him. I guess I just wish he had had some compassion for me, that being the mother of his children. Anyways there is a lot of baggage that goes along with this disorder, it tests peoples committments to you and also their endurance. So I know how you feel. Kelli I think YOU ARE AN EXCEPTIONAL woman with all that you do and endure. HOORAY for you. AND ALL OF YOU!!!!!

OMG Stimpy that is HORRIBLE ewwwwwwwww GOOD riddance grrrrrrrrr It sounds like you had strep throat which is horrible. I told the doctor I couldn't even swallow my own spit haha. Got it the first time at 36 yrs old and had it 5 or 7 times in the same year. Once, just a 103 fever no sore throat and it was strep. I'm so sorry you had to go through that especially with someone who was supposed to be your partner in LIFE, all of it, not bits and pieces. Rest assured, that kind of behavior he portrayed, WILL COME AROUND and karma is a BIT**!!! ((hugs))) I am a baby compared to how strong you are to continue your trip. I was crying and shaking I was so sick lol and felt like a total doofus when I found out once it was strep even with no sore throat lol

Strep is scary too, it can turn into rheumatic fever...either that or scarlet fever...I forget which one.

Stimpy, the "compassion" of your ex reminds me a bit of mine at times...sorry you went through that.

scarlet fever my daughter (cvid daughter) got it in her freshmen yr of college it was a nightmare she was hospitalized

stimpy i know having no money is miserable but you have your health that counts for more than anything.

you know my sister and her three kids live here she moved in when her husband got addicted to drugs and she lost EVERYTHING he was a normal person that got messed up with meth it was a nightmare all their savings her house everything. she found out one day when she got a bounced check went to the bank and he had cleaned out their life savings. he had hidden it well. she had just had their 3rd child they moved in when the baby was 3 mths, the others were 2yrs and 4 yrs. she has her masters in education but the babies were so little i worked a second job ( i was still teaching then) waiting tables at cracker barrel. my husband was still working then and worked 7 days a week. our youngest had just gone off to college. i worked for a yr until the baby was old enough and she started waiting tables and i stopped. she worked thursday, friday, and saturday night and me and my husbnad watched the kids.

she went back to teaching when the second went to kindergarten and my husband retired and watched the youngest for 2 yrs. they are all in school this yr so it is me and the hubby all day by ourselves (me retired since april) we have 3 incomes so when i retired and lost about 1,000 a mth it was not impossible to do. i think multiple families living together just makes sense. she couldnt afford to live on her own and it would be rough to do it all herself. we decided to make the arrangement permenant it works for all of us esp now when i am sick her and my husband take care of me and do the house and doc appts. it is a win win for us all.

find some roommates it just makes sense to share the expenses. find a big house and find others with health problems you could help each other out.... make sense instead of everyone struggling alone to work together to help each other and share the costs.

just my thoughts....

You guys are AWESOME!!! We ALL ARE AWESOME!!! To come through what we have, not knowing what we had, dealing with illness and pain and fighting for our health and learning about this illness and managing it and overcoming obstacles to deal with infections and pain and relationships. In all of your stories I see my life. Same scenarios, same pain, same not knowing. The same frustrations. I commend you all for your struggles to get help for medical help that is not always there. Your stories are helping people new to this site, and validates my past struggles. I now know that I WAS NOT GOING CRAZY. Thanks for all your kind words and ideas.