browser life

Sorry for the prolonged absence. I actually got home Friday, but was so wiped out that I slept 15 of the first 24 hours after I left Rochester. I am trying to return to what passes as normal activity for me today but fell asleep for a couple of hours on the couch anyway.

Dan and I left for Rochester around 11am on New Year's Day. No snow falling, but the wind was about 30 miles an hour, so the snow that was already on the ground got whipped up into near white out conditions at times. Thank goodness the sun was out so visibility wasn't further reduced.

When we headed to the shuttle for Mayo Wednesday morning, the wind chill was -45! The impact of that frigid air hitting my lungs was literally breathtaking. I coughed most of the way to Mayo.

First up was the ENT consultation. Talked to him about various things, and he took a peek at my sinuses and throat inside and out. The lymph nodes had gone back down to minor swelling, and I had the usual salivary gland swelling. The sinuses were rather dry, but the inflammation and infection weren't as bad as they sometimes get.

Asked whether I should do sinus cleansing with a neti pot. He said I wouldn't need it if I were healthy, but because I am so dry and I am unable to naturally wash away impurities that I should use a gentle rinse twice a day. He told me to add a spray containing sesame oil to keep things moist so I shouldn't get as many infections and/or nosebleeds. I was warned to spray GENTLY with a mist sprayer, not to use a pump or inhale it sharply as I want to avoid the chance of aspiration into the lungs. My sinuses are so dry that right now I'm catching any little bug that comes my way, so I am willing to give it a shot.

He said I probably won't need another lymph node biopsy unless the swelling becomes dramatic or remains unchanged for more than six weeks or so following an infection. He said that it's common for them to remain swollen whenever I get bronchitis, which has happened three times this year. Each time it has happened, the lymph nodes remained enlarged for about two months.

He told me that the best way to prevent reactive bronchitis is to keep the sinuses hydrated. And stay away from cigarette smoke and people with colds, of course. He added that I should talk to the pulmonologist about the chronic chest congestion and see if I should do anything about that.

We talked about tinnitus for awhile. Mine is particularly nasty, compromising my hearing, and seems to be connected to autoimmune disease. He said that any sort of stress to the body, including noise, headaches, infections, etc. can aggravate tinnitus for as long as three days after a particular trigger.

Next up was the pulmonary consult. I was surprised to discover I needed some more tests. The pulmonary function test was normal or only slightly less than normal in all but one area: the part where you exhale deeply and forcefully. That came out at only 60 percent capacity. Two possible causes in a patient with Sjogren's are asthma or obstruction from heavy mucus plugs.

I got to see the slides from my CAT scan on a computer screen. That was AWESOME, looking at slides like slices of bread in succession like an animation of my innards. Everything there looks good.

So the main question was whether I have asthma or just chronic chest congestion. I was scheduled for a spirometry with methacholine. Basically, they try to give you an asthma attack in a controlled enivronment that they can measure.

I was totally shocked, but I did have a reaction to the methacholine. I got an increased sensation of heaviness in the chest, it was noticeably more difficult to exhale forcefully, and I had to catch my breath between measurements. My results were indicative of mild asthma, so not terribly worrisome, but there was a measurable difference nonetheless.

The next test wasn't until the next morning, so we headed back to the hotel. With no new network programming on tv except reality shows and only one pay channel available (Showtime), we ended up watching stuff that was new to us: "Monk" and "The L Word". Would much rather watch a lesbian soap opera and a detective with OCD than cheesy dance competitions anytime. I did attempt to watch "Bruce Almighty" on the portable DVD player we borrowed, but I dozed off of course.

Thursday, I did another breathing test: exhaled Nitric Oxide. They measure the levels of it in what you breathe out. I didn't quite understand it, but a certain amount of eosonophils or something like that indicates asthma??

Had a fairly long wait between the test and the final consultation with the pulmonologist, so I managed to finally finish my book by Neil Peart of Rush. The view of Rochester from the pulmonary department is pretty cool as it's on the 18th floor. They also have computers in the waiting area; I thought of sneaking in a blog entry but decided my time would be more wisely used researching asthma.

Talked with the pulmonologist Thursday afternoon. He said that my breathing problem could be best characterized as bronchial hyperreactivity rather than typical asthma, but no matter what it's called, the treatment is the same. While asthma is not typically caused by Sjogren's, there is a fairly significant number of Sjogren's patients with bronchial hyperreactivity, so who knows?

I asked how I could suddenly develop asthma as an adult. The pulmonologist replied that it was probably a vicious cycle of extreme dryness in the airway leading to mucus plugs and aggravated by infections, inflammation and reactions to irritants like cigarette smoke and cold air. So the chronic bronchitis was actually more insidious than I ever suspected. Those Sioux Falls docs who blamed my shortness of breath on deconditioning were definitely off base.

The best things I can do at this point are to keep my sinuses hydrated, avoid cigarette smoke and people with active infections who might be contagious, and start using inhalers. I am going to be on Advair for regular use and albuterol for emergencies. As if I wasn't high maintenance enough already.

Since I've never used inhalers except during the pulmonary function tests, a nice lady came in and showed me how they work. She also gave me a whole notebook of materials on asthma. So I've got some studying to do.

Then it was time to return to where I started: the rheumatology department. The basic consensus was that since all these tests failed to reveal anything that would point to a different cause, the Sjogren's syndrome and celiac disease diagnoses are likely correct. The lip biopsy slides from 2003 were reviewed, and Mayo was in complete agreement that they were positive for Sjogren's.

We went over the bloodwork. I am still negative for Sjogren's antibodies, my sed rate is still within range, and ANA is still unremarkable. But in addition to my usual elevated c-reactive protein, I have elevated alpha-1 and alpha-2 globulins, which is new.

Dr. Osborn decided that my illness is progressing and that it is time for me to try a new immuno-suppressant. I am going to try Immuran to start with. If I cannot tolerate it due to digestive issues, I will switch to injectable methotrexate.

He also referred me to a rheumatologist in Sioux Falls that studied at Mayo. She's the only one that my insurance will cover that I hadn't tried yet. Basically, she'll have her work cut out for her as I'll just be going to her for maintenance.

We celebrated the end of our Mayo adventure with a tasty dinner in our hotel room. Rochester has a city-wide delivery service for 28 restaurants, two of which serve Indian food. We split an order of tandoori mixed grill: three varieties of marinated chicken, prawns and lamb baked in a clay oven with grilled veggies and jasmine rice on the side.

After a few more episodes of "The L Word", I tried again to watch a DVD. I maybe got a half hour into "My Big Fat Greek Wedding" before I zonked out. Next thing I know, Dan's telling me the movie's over.

The fatigue didn't improve any on the way home on Friday. Even after drinking a Starbuck's, I drifted in and out of sleep for most of the four hour trip. And once home, two more hours catching zzzzz's on the couch.

I came home with a copy of all of Mayo's December test results, and I'll get January's plus the consultation notes sent to me in a few weeks. From what I can see, some mild abnormalities, but no major smoking gun that I can point to and say, 'AHA! this alone proves I am disabled'. So I suspect I will still be battling my LTD company as they base their definition of disability on the severity of a single condition as opposed to considering that multiple less severe ailments taken as a whole can also be disabling.

For those of you actually interested in technical stuff, a few miscellaneous notes from my test results:
ECG: marked sinus bradycardia
MRI: multiple tiny foci of increased T2 signal in the subcortical and deep white matter of the frontal lobes bilaterally, likely secondary to early small vessel ischemic disease or migrainous disorder. Prominent right PCOM.
AUTONOMIC REFLEX SCREEN: postganglionic sympathetic sudomotor impairment localized to the distal leg. QSART responses normal except distal leg over which it was relatively reduced.
EMG: needle electromyographic examination showed non-specific increased insertional activity in distal leg muscles which may indicate an increased tendency for muscle cramps.
ECHO: aortic valve sclerosis. Aortic, mitral and tricuspid valve regurgitation.

I'll probably look some of this stuff up when I am less brain dead. Basically all it means to me right now is that Mayo says nothing scary is going on. These tests if nothing else will serve as baselines should I develop worsening problems that need monitoring.

For those of you keeping score, here is my new tally of ailments: Sjogren's syndrome, celiac disease, asthma, peripheral neuropathy, Raynaud's phenomenon, gastroparesis, diabetes, hypothyroidism, periodic limb movement disorder, GERD, fibromyalgia, IBS, chronic myofascial pain, adenomyosis. Did I forget anything? The list is too damned long for me to keep track of it all.

After this long strange trip, I have one piece of advice: if you have a systemic disorder that can potentially cause damage to various organs, it is a good idea to have each organ system checked out at least once. If you encounter even one new problem requiring treatment, it is worth it. I wonder how bad my asthma might have gotten had I not stumbled upon it at Mayo?

If I come across anything of interest in subsequent reports (or anything that may only be interesting to me, heh heh), I'll post about it. For now, though, I've got new meds to research and a desk buried in medical paperwork to uncover before I start filing taxes.

I hereby crown myself the queen of annoying multiple ailments. God save the queen.