Good Bye For Now

I've been trying to figure out endings for most of my life.

I'm not a person who breaks up with girlfriends, leaves jobs or even says good bye to a geographic locale. Many of my major life decisions were motivated by some combination of beautiful vision, peer behavior and desperation.

But I'm getting better at it. I sometimes almost know that the time has come to close a chapter and open something new. And this is one of them.

Here's the medical update: I got another X-Ray and went to the pulmonologist, Doc Peterson. I got another CAT scan and talked to Dr. Wendy.

Fred is no better and no worse. Doc Peterson said that this is evidence for his theory that Fred is a collapsed lung lobe. In this theory Fred began when my right middle lobe lost its air vacuum at some point and the walls of the lobe got stuck together by the juices that live in the lungs. It has never re-inflated. The doc says I could live my life in this condition and it might be just fine. He doesn't see evidence for a more active intervention - which have their own danger and side effects. I have to keep watching it because I'm more at risk for big-time infections and over-growths of fungus with a collapsed lobe.

I also did more lab tests, both blood and poop. They all look good except the eosinophil count. Normal is around 500 and mine are 1100. Eosinophils are one of five major white blood cells, the kind of cell that fights disease. This probably means there's an undiagnosed infection somewhere which my body has rallied to fight.

So, here I am, a good six months since I got very serious about getting a diagnosis for fevers, lung density, and a high eosinophil count. The fevers are basically gone. It's possible the lung problem is just another physical problem I can manage like my asthma. And, I'm not very interested in more tests and doctor visits.

So, while I'd like to write you about surfactants and their role in the lungs, I'm going to restrain myself. I'm not going to take this blog down but I'm ending these regular updates for... awhile. I'm making an ending and leaving this option open.

Thank you for reading.

It changed my life to be this open about my life and have so many people respond with affection and love. Who knows? Maybe it was just that which pushed the fevers away. Thank you.

Two Cities, Three Pulmonalogists-----------------------------------------------No Capital A Answer (2)

We left Dr. Peterson, ran into a friend in the lobby of Alta Bates; heard that the bay bridge had reopened after an extended weekend when it was closed for upgrades; went out for coffee to celebrate; ran into another friend... and felt great synchronicity and joy.

Then we drove over a still nearly-empty bridge for an consultation at the Chest Clinic at UC Medical Center. We arrived at the front desk at 2 pm and didn't leave the building 5:30. I lost my focus pretty completely as the institutional trance set in. By the time we left, any useful incidental comments and information had passed down the memory hole and have yet to be retrieved. I managed three sentences of notes.

Still--we saw a resident, Dr. Zutler, and then he brought in the faculty guy, Dr. David Clamen. I liked them both, Clamen especially.

They seemed to settle on a theory that Fred is most likely a long-term infection. They talked about hitting it with an antibiotic to see if that would make a difference, then repeating the bronchoscopy. But, when I pressed them on when -- and what-- they might learn from a repeat bronchoscopy, they stepped back into a let's take it one step at a time... get the results and then decide... stance.

Then they talked about another diagnostic test and decided to try that before the antibiotic. If we knew it was a fungus or virus there's no point in antibiotics, right? Right. So they ordered a sputum test where I cough up gunk from my lungs and collect it for three days in a row. Then it goes out to a lab where it takes 2-3 weeks for preliminary analysis and 5-6 weeks for conclusions on the fungal cultures.

I started the sputum test the next day but I'm not coughing deeply enough, not bringing up enough crud, to make it worthwhile. When I went to my appointment with Dr. Iva on Thursday, she suggested taking the mucous thinners that Dr. Peterson prescribed first. If I start coughing up something, then I can do the sputum test. That idea was worth everything I paid Dr. Iva that day, if only because it relieved my anxiety about not being able to do the test as I'd promised.

Before I left UC Med. I got a blood test which, I think, is in preparation for the bronchoscopy. I'm going on an off-hand comment that institutional tranced-out Adrienne didn't try to clarify. Maybe Shelley will remember some other useful details of the afternoon that I can post later. I can't remember if I asked directly about cancer. Surely I did. Surely they brushed the idea aside as unlikely.

They told me to come back in a month and I set it up without making the internal commitment to actually go. I did get the direct phone number of the nurse who, potentially, can reach the doctors with a phone call. And, I know these two docs come to this clinic once a week on Tuesday afternoon. These are very valuable bits of information if I continue as their patient.

Shelley said the day was basically about interviewing a couple of pulmonologists. If we hadn't seen four old friends in planned and unplanned encounters, Wednesday's fatigue might have unhinged me. But I managed a pretty good imitation of a pip pip cheerio, have a good attitude, stiff upper lip, take the next step, get on with it state of mind.

Still with the Fevers, Second Opinion

The daily fevers continue. Yesterday was particularly bad. I was sick from late afternoon until 3 a.m. I laid on the couch and watched "Shark Tail", a 1994 animated movie, on T.V. (Not my favorite way to spend Saturday night.) Shelley was a constant support, tucking me under a blanket, making me a bowl of melon chunks with a toothpick to eat them, and giving me lots of hugs. She's been my reality check, my arm to lean on, my provider of good food, and the voice in my ear telling me to take time to rest.

I've been frustrated by the lack of a clear diagnosis. Dr. Dilisio referred me to UCSF Pulmonary Department but his assistant told me it would take a month before they even call to set up an appointment. I bashed my head against their voice mail systems without any success.

But then Jan Santos suggested I find a pulmonologist in the greater bay area. Her kind voice in my ear cleared the fog of the magical teaching institution. Of course, there are many specialists in this area. How can I find one that can help me? Again, Jan had an easy and practical idea, post a request to "Berkeley Disabled." That's a large and varied long-time e-group of people with disabilities and, of course, many of them have years of lung involvement. Someone who lives with a ventilator would surely have searched and auditioned pulmonologists to find a good one.

And, sure enough, within 2 days of the request, I have 5-6 recommendations.

I need to remember that the times I feel stuck and my head is sore from bashing against some institutional or other kind of wall, that this is a temporary state. If I keep working on it, keep talking to people, keep trying, these walls will dissolve and I'll find what I need. Eventually, I'll find out what is going on with these lungs, the true nature of Fred, and then I'll deal with the truth of what is.