YMMFI

So I’ve been playing with Moblin which is a niche Linux distro from Intel that is geared towards Netbooks. I was finally able to get the 2.0 final release to boot on my Sony Vaio Laptop (the only time I have been happy that I have an Intel graphics accelerator). Unfortunately it’s pretty buggy but the issue isn’t an issue with Moblin itself but with the ath5k module used for the Atheros Wifi Radio that’s built into this laptop. It’s not just ath5k AFAIK as wpa_supplicant seems to have a role in it too. The laptop will boot and run but when it attempts to associate with my AP (an ancient Linksys 54G that until last night was running the 54GL firmware) it receive the keys and associate then the machine locks up. I can’t see to get to another X session or drop to a shell or re-start X at all but it’s not a hard lock as I can use ctrl+alt+delete to force it to reboot. Since it’s not getting far enough to get an IP address I can’t ssh into it to see what, if anything is showing up in the logs. As mentioned earlier though it’s not an issue specifically with Moblin as using Fedora 10/11 this same laptop will continually drop it’s association with the AP and I never took the time to troubleshoot it since it didn’t cause a lock up. I just had to reboot the machine and it would work again fine for a day or two.

I have tried the 2.1 dev images and it seems to be a little better (newer kernel) but I have read via Google searches that there appears to be some regression with ath5k. Also, if it doesn’t lock prior to getting fully into the desktop and grab a shell session, I can turn of wpa_supplicant via /etc/rc.d/init.d/wpa_supplicant stop and just use the wireless tools package [iwconfig] as well as ifconfig to get a working network connection and it seems to work fine without locking nearly as often as when using wpa_supplicant.  I tried to roll my own custom kernel using the vanilla sources from kernel.org and a branch of the Mad Wifi modules from www.madwifi-project.org but for some reason X barfs when I boot that kernel. It also isn’t really a proper work around since it violates the spirit of the Moblin Project as this branch not only taints the kernel it violates the “if it’s not in Linus’ kernel then it can’t be submitted as a patch) rule I was reading in the dev docs.

Stay tuned for more updates as I continuing fiddling.

I’m not really surprised that Blue Cross denied paying for IVIG. I am, however surprised that they denied it as “medically unnecessary”. So, let me get this straight, I’m sick, 5 Doctors, all of which are heads of their respective departments and in various specialties agree that IVIG is the treatment I need yet it’s not medically necessary? Given the time of the year and my condition, it’s possible I could end up hospitalized again for something, it seems like a bi-annual thing (2005 then 2007) so we’ll see. I can’t imagine it’s going to be cheaper for a 5 day hospital stay than it is for IVIG. I saw the bill that they paid for 2007, $25,000 bucks for 5 days.

What is frustrating is that it’s not as if the doctors are suggesting the newest medication out there or some new treatment that is expensive because it’s new. This is the only treatment available for CVID. Am I supposed to simply go on antibiotics forever and ever until they stop working and hope for the best? Hell, maybe I should just not be around people at all, that’d be cheaper then antibiotics wouldn’t it? Not that it makes any difference but neither Crohns nor CVID is something I did to myself, it’s not as if I was taking risks and doing things that put me in this position. I’m not asking for the world here Blue Cross, I’m asking for the treatment that a well regarded research hospital has said will make me feel better.

Finished the scopes on Thursday along with another test which I won’t mention cause well it’s gross and I wouldn’t want to upset anyone’s delicate sensibilities.

As I think I mentioned, there is a shortage of IVIG, I’m one of those people who doesn’t really get behind causes because being as bitter as I tend to be, I notice people don’t support something until it happens to them, that said, If you are able to donate blood plasma please do so as that is how IVIG is made and you could be saving someone’s life =) What better Karma can you get than that?

As an adjunct to the above, I want to point out that as much as I appreciate people offering to donate their blood to me, that’s not how this works unfortunately. IVIG requires tons of plasma from specific donors and then it is refined and cleaned up and tested for anything that could be harmful before it’s put on the market. The very thought that people are willing to do this for me though means a ton so I want to say (uh write) THANK YOU :)

Yup Yup so IVIG is a go. Just waiting on insurance to approve it. By the way, I noticed in the post below …. the comment about the infectious disease, I would like to point out it was a JOKE =) just a little FYI.

So I’ll start posting more updates as I start the process and it’s an 8 hour infusion so I’ll have plenty of things to write about I’m sure.

Those crickets you’ve been reading, yeah that’s because that’s been what I was hearing until recently from OHSU. Last week I saw in the span of 2 days an; Immunologist/Rheumatologist and an Infectious Disease Expert.

I am proud to report despite bad past choices I do not have an Infectious Disease. I had some lab work done by the Rheumatology folks and I have am negative for Rheumatoid Arthritis which is good. The also did an x-ray of my hand and found progressive shortening of my fingers (wtf?) which apparently has to do with Reynaud’s Syndrome which they diagnosed on the spot due to the fact that my hands were ice cold in a 75 degree room.

The news is that the Immunology guys think that CVID is back on the table and the Infectious Disease guy may have lent some credence to this belief as he referred to my CVID tests indicating at minimum an IgG subclass deficiency, I never heard back from the Hematology guy on the Pneumococcal titers so I assume that was the issue that popped up, a quick googling says it would be an IgG Subclass 2 deficiency. Snazzy.

So, the Immunology guys want to potentially put me on IVIG therapy and see what happens (works for me, nothing like filling me with drugs/meds/blood and seeing what happens).

I have another colonoscopy on Sept 24th (this will make 3 if you’re counting at home). I am going to wager a decision about what to do next will be made after that procedure.

Cheers.

I emailed my specialist to see if she’d put me back on the immune suppressing drugs as doing nothing isn’t helping. It seems as if I’m getting pretty bad again so we’ll see what happens.

I received half of the results back from the CVID test and I responded to the DPT vaccine which makes CVID unlikely. It is not a matter of wanting to have one of these rare exotic problems but rather that I would like to know what is continuing to make me sick. I am certainly bummed. I am waiting on the pneumonia vaccine titers but I suspect they’ll be similar to the DPT ones so I’m not holding out hope. It appears to be another dead at this point.

I completed the first half of the testing procedure yesterday for CVID. Originally, when I spoke to the nurse last week she told me I would do labs, get the vaccine then do a second set of labs immediately afterward, this isn’t the case. I did my first set of labs then went to the Hematology Clinic and got the TDP and Pneumonia vaccines. In 2-3 weeks I will go back and have labs drawn again to see if I’ve made any antibodies in response to the vaccines.

If I don’t, then we’ll have the answer.

If I do, well then I’m out of ideas.

As an aside, I was treated in the infusion section at the Hematology Clinic and I have to say I was a little bit saddened being there. The TDP vaccine hadn’t arrived from the pharmacy yet so they had to send someone up the hill to the main campus to get it, so while I waited I went to get some coffee and next to the coffee machine in infusion area is a pegboard upon which there were more than a dozen knit caps despite it being in the mid 70’s today in Portland, there were also a couple wigs as well. As I sat back down in the reclining chair they have you use when you’re getting infusions I could see patients getting their PICC lines cleaned and some who were obviously getting Chemotherapy. Yet not a single one of them looked sad or upset. They were all smiling. Why was I sad then? I felt sad that I was there for a simple vaccine while these people were battling for their lives and somehow it felt unfair of me to be there. I don’t know how else to explain it. Their smiles however, show the endurance of the human spirit and faith.

The blood tests came back last week. Probably to the disappointment of at least 2 people the Leukemia tests were negative. However, the Immunoglobulin tests showed something really wrong which is funny because until I basically demanded the Hematologist run them again he wasn’t going to.

IgA has dropped from 89 to 83 with 70 being baseline low

IgM is less than 10 with baseline normal being 40 so I basically have none

IgG was at 493 with baseline low being 700.

The only reason these tests were even considered was because I googled what could cause intestinal inflammation and there isn’t much but low Ig levels are one of them. Given that things have improved in some areas but not others I forced the issue and asked for them to test for this. This just proves to me that you really have to be your own advocate when it comes to medical care.

So, next week (Monday) .. I will be back at OHSU to get a test to confirm the diagnosis clinically called CVID/PID. They will draw labs to check the antibody (Ig) counts again, then I’ll immediately get a Tetnus shot to attempt to stimulate my immune system to do something and if the Hematologist and I are right, it won’t do anything and we’ll have our answer after some 3+ years of trying to figure this out.

Since the previous pill cam came back negative, this would be #5 for those who are counting. I was referred to a hematologist whom I saw last week.

He does what one would figure a hematologist would do, he took tons of blood to run tests. My permanent record (sounds like something from school doesn’t it?) currently says Crohns. So the hematologist is going with that as the current working theory.

He ran all the standard tests like CBC, Chem Panel and such along with testing for CML (Chronic Myelogenic Leukemia), an Immunoglobulin panel (basically at my insistence) as well as C-Reactice Protein. I’m not sure what else he ordered but it was 12 tubes of blood worth =)

I’m still having my good days and bad days. My weight seems to have leveled off although I’ve said that before and have it go all bonkers. I’m currently weighing in at 165. So I’ve lost 75 pounds from a year ago along with 50% of my body fat from 34% to 17%. I’m mostly working addressing the nutritional deficincies that I have which include protein, B12, B6 and Folic Acid (I though that was for pregnant women?!). It’s hard because I can’t seem to tolerate large amounts of dairy and I can’t handle nuts of any sort except popcorn (how weird is that?).

I forgot to ask the Hematologist but I’m wondering if the protein issue is part of the cysts they found on my kidneys. I knew of one that has been there forever and ever, well at least I’ve known about since my Gall Bladder removal surgery in 2002. They found another, much larger one during a recent CAT scan but they believe both are benign, which I’m sure they are otherwise I think I’d be in much worse shape. Although my cousin brought up polycystic kidney disorder so who knows?

I wish I had more to write about but unfortunately I lead a very boring life right now. It’s sort of like sleep, read, Doctors appointments and that’s about it.

I do have a lot of faith in the current group of doctors that I am seeing now though, which hasn’t always been the case. I think we’re on the downside of whatever my diagnosis is and I’ll be in a phase where I can manage it rather than trying to find out what’s wrong and I can receive appropriate treatment and get back on my feet physically and also in terms of work and what have you. I went to lunch last week with some former co-workers and I really miss the camraderie and also the feeling of worth you get from working. Money aside, work and the ability to feel as though you’re doing something worthwhile is very important, well to me it is at least.

Blue Cross denied the pill cam even after an appeal by OHSU, so my doctor appealed to the maker of the device, Given Imaging and they provided one for me at no cost! OHSU is donating the doctor time to read the results once this new study is completed and hopefully there will be more information and possibly an answer finally after 2 1/2 years of living sick without a diagnosis.

I just wanted to thank both Given Imaging and OHSU for working together and getting this done for me. I don’t know anyan answer finally after 2 1/2 years of living sick without a diagnosis. I just wanted to thank both Given Imaging and OHSU for getting this put together for me. I go in Monday to ingest the camera, this makes number 5(!) that I have done. I am praying that it will give my doctors enough information to move forward with a viable and working treatment solution for whatever is wrong with me.

I want to specifically thank Dr. Kandice Knigge, Heather Walz RN and Eryn (I don’t know her last name) they have been incredibly kind, caring and willing to work to get things done like this pillcam and never treat me like a “dumb patient” when I ask dumb questions.