View Full Version : A jmail updated

07-03-2012, 06:39 PM
Hey guys. Sorry I haven't been around so much lately. Going by a "search", it looks like it'd been December since I was on here. I don't remember what I may have updated anybody then, but life is good in spite of it all. I've missed getting into some of the conversations here and getting to say "Hi!" to you all. Anyway:

Our boys are doing fine, though maybe getting a pinch hypochondriacical (is that a word??) from hanging around an older mom and especially an older dad... They're enjoying their summer off of school, tho next year, they'll do that "flex" scheduling stuff where you go to school for like 6 weeks, then you're off for two, etc. That will definintely be different for me, since I can't hardly get used to this August to June stuff as it is. It's too *hot* in August for school... Anyway, the wife is also doing well, and her surgery definitely helped her. She acts like she's 20 years younger than me now... 'Course, I act like an 50 year old man in an 80 year old man's body (not implying anything *wrong* with being an 80 year old man, of course... tic), so laugh at which ever end of that one you'd like... tic

As for me, I've missed quite a bit of work lately, and I've gotten more definite news, or diagnoses (es, for plural, I think... hmmm). I'm not sure I like the hand dealt, but I can't complain about any dealing from the bottom of the deck... tic - the dealer is infallible. What I can do is highly recommend my rheumatologist. I'm not sure if it's appropriate to mention names, but I will if I can. He's on the Northeast side of Indianapolis here, near Community Hospital North. Let me know if it's OK to name names. He does NOT mess around with it, and is also very up on CVID and the IVIG treatment for it. He's also familiar with all the facets of auto-immune "discipline", from the folks that focus on diet, to the folks who focus on nothing but drugs. The *BIG* thing for him is that he *listens* to what you say, is concerned, and is *interested* (I emphasize that "interested") in your case. My last appointment, he said "I'm excited to dig further into this. Your case is *very* interesting." It's very refreshing to have another doctor like that (my PCP is the same way). Right now, besides all the other stuff I'm taking, for the SLE I'm just on 10mg pred twice a day, and 200mg plaq twice a day. My next scheduled appointment is October 1st to adjust again, if necessary, but that's if my recent bloodwork is "normal". We've tried to drop the pred, but I seem to flare everytime we do, so. He likes to refer to "keeping the lupus in a box, and not letting it out"... Doc has no "predjudice" toward men with SLE, nor with a CVID patient. What I've learned the last few months, is that most SLE patients will find that their hemoglobulin levels will be elevated. Most CVID patients will find their levels depressed (the "Immuno Deficiency" part of the name), therefore a lot of rheumatogists don't think that a CVID patient can have "classic" SLE... velly intellesting.

In the meantime, I think I've mentioned being on vacation last spring in Virginia and ending up in the hospital with pneumonia. What an adventure that was. My hematologist prior to his retirement had put Levaquin at the top of my antibiotic list for whenever I got sick, as a first-line response for when I got sick. Never noticed any issues with it, so we used it. Time and time again. They used it on me when I was in the hospital. But I didn't respond that time until they gave me my IVIG treatment a week early while there. Anyway, I kept getting upper respiratory infections every few weeks or so, and they kept feeding me Levaquin and I'd get better, but each time, my respiratory system was suffering, and I wasn't really coming out of it. That came to a head back this past spring, over a year after being in the hospital. I was sick again, but was tired of going to the doctor. I'd been diagnosed with asthma some time ago, but had basically been ignoring it. It didn't ignore me. I now know what an asthma exascerbation is. My wife twisted my arm enough, and I finally went to the doctor. She looks at me and goes "why aren't you at the ER instead of here, mister?" They treated me with a nebulizer and I didn't respond, and actually went the other way. There's a name for that, but I can't remember. I turned blue though, and they put me on oxygen, and then had my wife take me to the ER, where they did absolutely *nothing* to me for over an hour and a half.

I couldn't hardly get my lungs to expand in order to inhale, and at that, when I inhaled, I wasn't "translating" (or whatever they call it) the oxygen to the blood, and wasn't getting rid of the carbon dioxide. My lungs were swelling shut, and my body was doing some "emergency response" to the situation, and shutting down the body, trying to protect the brain. It's actually a very interesting phenomenon, so long as it's not happening to you, but your body starts "stealing" nutrients and minerals from what's in your body, such as calcium is leached from your bones, etc. 'Course, for me, that had apparently been going on for months as I was slowly deteriorating. They sent me to a pulmonologist after I got out of the hospital that time, and he's "educated" me. I already *knew* what I should have been doing, but clarified if for me, and also gave me a "plan" for the future. I'm supposed to measure my lung capacity with my new "Peak Flow Meter" anytime I feel the least bit "strained" by my breathing, and If I get below 90% capacity, I'm supposed to take measures, and any further deterioration, or failure to respond, I'm supposed to do the ER again. They say a person can die all too easily from exascerbations, and that I would have probably have been dead if I'd waited a few more hours on mine. Scary. Anyway, Doc says that my lungs are most likely the most recent target of opportunity for the SLE. However, now my legs are swelling, and they're doing more blood work on me, check the kidneys again, and my next appointment will be based upon what the blood work shows.

My "new favorite" med is the diuretic they've given me now for the leg swelling. I def don't like the stuff nor the running to the little room everytime you turn around... I still have neuropathy issues from the levaquin reaction, but Doc is wondering about the lupus with that also. I show signs of myesthenia gravis, though all blood work is negative, as were the EMG tests, etc (ever had one of *those* on the ~face~?? !!!), so they've called my levaquin "reaction" a "drug-induced myesthenic-like reaction", which includes the "asthma exascerbation". It's interesting the way the body responds to all this "stimuli", if you will, even though it's very frustrating to be the target... It's even more difficult to type now (it's taken me quite a while to do this, I mean, besides the verbosity - lol), and I've practically quit playing my guitars. I've got to lower my expectations of what I can do on the guitar, and not compare to what I used to be able to do. Overall though, I'm blessed. I've got a wife with fibromyalgia who completely understands my situation, and the kids are *very* patient (they're patient, I'm a patient... tic), and though it can be difficult at times, I'm still breathing... Hope you all are doing OK. Sorry 'bout the verbosity, and believe it or not, this is "concise"... now I'm *really* laughing. lol

Edit: Wow, my brain anymore. I've left out some important details in this, so it probably sounds just a pinch dis-jointed. Sorry 'bout that... lol

07-03-2012, 08:46 PM
thanks for the update.

you have definetely been missed around here.

there is a thread called "who and where is your doctor"
this thread is where we have placed info about our doctors, and there names.

07-04-2012, 03:16 PM
Kuhl, thanks Steve.

07-04-2012, 07:17 PM
Its good to see you again!

07-05-2012, 04:21 AM
Welcome home! You have been missed

07-05-2012, 01:25 PM
Thanks guys. I'll type until I kain't type no more... Wait, I already can't type... never could. I'll type until I can't think straight... better not do that, too late... never mind. I'll hang around again until I end up sick again... |;^) wink:

07-05-2012, 09:40 PM
Hi jmail,
Welcome back - we missed you.
I'm glad that you've found yourself a great rheumy. That makes all the difference. Lung problems are nothing to be fooled with. My two youngest daughters dealt with asthma, and that can get really scary very quickly.
Take care of yourself - I hope that the meds that you are on now get it under control.