FYI - (The updates to this original message are below if you continue scrolling down)
Hello:
I am new to this forum. I am a 26 year old male. I seemed to be fairly healthy my entire life. However, I always had enlarged lymph nodes. Doctors performed a biopsy 3 times within a 10 year period on my lymph nodes, and they never found cancer. So, I continued on with my life thinking nothing was wrong. Last month, however, I started feeling ill. It began with a sore throat, and then one day I just had the worst shaking chills that I've experienced in my life, for about 40 minutes. A couple of days later, I began feeling chest pain in my left side when I was breathing and coughing. I let it go though. Some 10 days later, I decide to go to the doctor, and after an Xray and CT scan, it was determined that 95% of my left lung was clogged with pneumonia, and furthermore, I had an empyema forming around the lung. (Bacterial fluid that began to harden outside the lung, making the lung not able to expand even if there was no pneumonia.)
I had emergency surgery, had chest tubes put in place, and stayed in the hospital for 7 days. During this time, blood tests were conducted and it was determined that I had low IgG levels. I also have a problem absorbing proteins. They diagnosed me with Common Variable Immune Deficiency.
Now, I feel at a loss. I have a fiance, and I am worried about both our futures. I don't know if I will have a normal life expectancy. I don't know about health insurance even covering these IgG treatments. I guess, simply, I don't know what to expect of my future.
I was hoping that there are people on this forum, who have what I have, and could share their experiences with me, and perhaps give me some guidence.
Thank you all for your time, and I look forward to hearing from you.
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UPDATE: 1/19/2010
Thank you all for your recent comments, as they are most helpful, and it is good to know that others share the same type of experiences as I am currently facing.
This has been a very depressing time in my life. Apparently I was closer to death than I realized. I think that part of the reason it got so bad is that I went to the Dominican Republic for 8 days, basically suffered there without any kind of treatment, while this terrible bacterial disease was taking over my organ. When I finally got to the hospital, the pulmonologist showed me the CT scan and the Xray, which showed my left lung was just a complete white out. He said that he was amazed I was up walking and conversing as much as I was. One doctor said that I was lucky to have been on the z-pack, as though it didn't fight my lung problem, it could have prevented the bacteria from spreading into my bloodstream and infecting my other organs.
It didn't get much better when the surgeon told me that in his 30 years of practice, he hasn't seen many lungs worse than mine.
Those 7 days in the hospital really get you thinking when you are sitting there alone, with a chest tube coming out of you, IV's running through you. I'm a 26 year old guy, and I couldn't even get myself up to use the bathroom. It was pathetic. It makes you think about your own mortality. It makes you think about the things you got to do in your life, and the things you will never get to do, never get to see.
Most of all, it makes you think about your own end. How I left my apartment, my home, thinking I would have a simple procedure, and next thing I know I'm admitted into a hospital, with the fear of serious complications. Then flash forward to sitting in a hospital bed, thinking that this could eventually be the last thing that I see, the last thing I know. How the visitors I have come and go with their own lives, and I am the temporary pity story.
It's quite depressing to have such an outlook, and I pray that is not how I meet my end.
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UPDATE : 5/24/2011
I wrote the above posts over 1 1/2 years ago. I would like to give you all an update. First, I did indeed get married in October. Everything went off without a hitch. As far as my medical condition is concerned, I seem to have two pressing problems:
1. I reviewed medical records from 10 years ago, and it appears that even when I was 15 I had total IgG serum counts that hovered between 300 - 400. Currently, my IgG serum continues to fluctuate in this range. I have been told by doctors that I should be getting IVIG every 4 weeks. I deal primarily with a Hemo/Oncologist, and (although I do not mean to I tend to "fight" with him on getting IVIG treatment.) I am hesitant because (a) It's costly (b) after reviewing the numbers, it appeared I had low IgG for the past 10 years of my life, and only had one serious infection. I reluctantly give in and get IVIG if my total serum is around 275. I am at risk when fighting off polysacharid bacteria (the same bacteria that caused my pneumonia 1 1/2 years ago.) All my I have IgA and IgM levels that are below range, but are still existant. (Usually both are around 30 - 40). My subclass 1, 2, and 4 are below range.
At this point in my life I constantly fight with myself on what to do. I do not want to risk my life and health (and be in the position that I wrote about 1 1/2 years ago.) However, the IVIG treatments are an emotional and financial burden. (I really cannot stand getting IV's in my veins).
2. The second "health issue" that has popped up is my platelet levels. I have always had platelet levels that hovered around 100,000 - 120,000. A couple times this past year, however, they have dropped significantly (sometimes 15,000 . . . . at some points, even to 1,000). It was quite scary. Prednisone doses got my levels back up... and seem to "reset" my system... but it's like I'm just waiting for the month or the day I go in for a blood test, that the platelets will just be back in "dangerous" levels. It certainly isn't fun.
At first, I'm wondering if the platelet issue was related to the administration of IVIG. The proof remains to be seen. Though I will say that I had not gotten IVIG for 90 days, and my platelets have been normalized. I just got an infusion yesterday, so if the platelets drop, I think it would be more than a coincidence, and rather, a correlation.
Currently, I just am trying to figure out the "right" thing to do. I struggle mentality with this diagnosis, almost like I just do not want to accept it. Perhaps it is because when I read many of your stories on this board, I do not have any of the other severe infections or issues... but maybe those will come in the future as I age? I just don't know. Perhaps I think to myself that maybe I can get another 10 years or so "free of IVIG" and these issues, and then accept this diagnosis later in life and deal with the IVIG and what not. Maybe there will be a cure (in the form of gene therapy or DNA alteration) that will rid us of this problem?
I just don't know. Previously I ended my correspondence struggling physically to survive and battling pneumonia. Now, it's more of an emotional toll and trying to find the "right" thing to do.