YMMFI

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.

mysql> SELECT table_schema “Data Base Name”, sum( data_length + index_length ) / 1024 / 1024 “Data Base Size in MB”, sum( data_free )/ 1024 / 1024 “Free Space in MB” FROM information_schema.TABLES GROUP BY table_schema;

Always good to know.

Well another brick in the wall as it were in the mystery as to what is wrong with me. It is looking more an more likely that it is NOT Crohns but some type of blood or immune disorder.

I started googling what would cause intestinal inflammation and came across immunoglobulin deficiencies. So for grins I ask to be tested and the initial test was inconclusive and the second test did reveal IgG problems which could be from a whole host of things. So I’m waiting on Pill Cam #5 which insurance is holding up to see check my intestines again. After that it looks like a referral to a Hematologist to look for Bone Marrow problems. Yippee!?

Surviving Before Hell.