Saturday, December 12, 2009

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.

What's Going On, Fred? (4)

It's 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.
The eosinophil count is still over the top.

I'm wanting to cut out most of the tests and doctor visits.
I'm putting this blog on hold and turning my energy to other things.

It changed my life to be this open about my life and have so many people respond with affection and love. Thank you.

Sunday, October 4, 2009

Last Week at the Lab

Last week. The lab.

The docs at UCSF who I don't plan to see again ordered a sputum test. Dr. Wendy reminded me that she's also ordered one months ago when this all began. I hadn't done it because we thought the bronchoscopy washings would be a better test of the same thing. Four weeks later the washing didn't tell us much but I never went back to the sputum test. So, after my 3 week birthday break, I focused to complete this test.

It involved tickling my lungs until I coughed up some phlegm from the deeper places and then spitting it into a sterile cup. Three cups, three days in a row, then drive it to the lab before the weekend would make it too old to use.

The lab is in a set of professional buildings that cluster around the Petaluma hospital and they all look alike. I'd been there several times, so I'd self-confidently & unthinkingly left the address at home. I couldn't find it. I wandered around for awhile and finally borrowed a phone book from the volunteers at the hospital reception desk, got the address and, eventually, there it was.

Dr. Peterson, who I am seeing again, ordered a blood test for a Galactomannan level*, so I asked if I could do that too. The only staff person who was in the lab had never heard of the test. He consulted his procedure books between phone calls and whatever else he was doing. Eventually, he called someone in another office and asked him. That person said he'd research it and call back. Did I want to wait?

It was a beautiful warm day, I was coasting on sweet birthday wishes, and I had a good book. I said I'd wait. Eventually, the lab guy found out that I'd need to get a special kit from the doctor in Berkeley. Listening, standing at the counter, I saw my sterile sputum cups sitting behind the desk rather than being in the refrigerator. When I pointed this out, the guy lazily assured me they were fine there, that he'd put it away in a minute. That was the end of my lazy warm birthday kind of a day.

It was not fine with me,
--waiting was not fine,
--not knowing that I needed a kit was not fine,
-- forgetting that I needed this test for three weeks was not fine,
--relying on someone I didn't know to take care of my test samples was not fine.
None of it was fine with me!

"I've gone to a lot of trouble to do this test and I'd like that to be in a refrigerator," I said.

He got up and put the samples in the back -- probably in the refrigerator, but who knows? The guy in the other office was going to FAX something more about the test kit. After ten minutes with no FAX, I left.

I left, ready to take charge of my life with Fred again, ready to make lists, plan ahead, make multiple commitments, stay on top of it, push for what I want and get though tasks efficiently.

I need this warm lazy birthday pleasure now and then and I love the people who gathered around me to give me such a memorable experience of it. I need to keep that available and visit it regularly. I would be an idiot to forget it in a trance of productivity.

I've never known anything like it in quality and quantity. It's like we built an island I can visit by simply turning around and taking a step to one side. It's a solid place that I've spent my life looking for through a veil of mist and fog. I've had magical moments when the mist cleared, I found a boat and, for a few hours or (once or twice) for a few days, I was able to visit. But I've never known how to recognize it from afar, where the boat is stowed and how easy it is to sail there.

As I walked through the sunshine to my car, the call of Fred and other projects were part of the warmth and pleasure of the day. I turned the key in my car and it blinked about an empty gas tank. I expect my sixties to be a decade with some physical and emotional energy. I want to spend it in service to myself and the world. It's time to refocus and take up the sprint.


*Detection of galactomannan in blood is used to diagnose invasive aspergillosis infections in humans. This is performed with monoclonal antibodies in a double-sandwich ELISA assay from Bio-Rad Laboratories was approved by the FDA in 2003 and is of moderate accuracy.

Saturday, October 3, 2009

In Sight of the End of the Blog

It's October and it feels like autumn. New month, new season. Yesterday I sat around the ole laboratory for a couple of hours and thought about Fred.

The justified fear part of me, that which has been holding out, seems satisfied for the moment. I believe that I don't have cancer, as all the western medical people say. Although, let me be precise, no one says for sure and no one knows for sure. They say the chance is small and, after a three week break to celebrate my 60th birthday, it seems that I'm ready to take my chances. I could get swine flu and die. I could find out Fred's nature is cancer and be very sad I didn't do more to take get rid of him. There could be a major earthquake tomorrow.

Fred is still with me, as strong as ever, but he's not a big mysterious death cloud. He's more like a rainy day I walk through with discomfort if I don't put on a rain coat and take my umbrella. I may still go to great trouble and some expense to get another opinion on the cancer question from a Chinese diagnostic expert that Dr. Iva knows, but I'm not making that appointment this week.

As many people with disabilities have pointed out, the drama of an able-bodied person with a sudden life-threatening diagnosis draws attention and support in the way a long term chronic illness rarely can. Sometimes that's pretty annoying. Our culture is addicted to drama and our culture of support is fractured. But sometimes it's right too. I lived with confusion and fear this summer and I needed more people to talk to me about what I was thinking and feeling. That, and writing this blog, has helped me mark out a path and keep myself at a steady sprint along that path.

As I've gotten to know Fred, he's assumed most of the aspects of a long term chronic problem. He takes a lot of focused attention; he affects my activities every day or two; he threatens me with a surgery and costs me too much money and time in medical offices. In many ways, he's like the asthma I've lived with for 30 years or so -- A related but separate problem in the same major organ. I know how to live with the trouble Fred is brings me and the path has become marked out.

-Continue to try for a diagnosis with sputum test and bronchosopy
-If no diagnosis appears, try antibiotics and anti-fungals
-Diagnose, if possible, by which treatment works.
-Monitor Fred's shape and size with X-rays.

Do any of us need a blog?

Sunday, September 27, 2009

The Rash is Better

I haven't written an update for over a week nor have I had anything much to do with doctors or health routines. Instead, I've celebrated my sixtieth birthday in high and fabulous style. Tomorrow I have an appointment with my primary care doctor, Dr. Wendy. I hope she will help me refocus and head into a renewed relationship with Fred.

In the meantime, there's the rash and some good news with that. I'm being able to wear the Duo Derm dressing/bandage on my leg rash for ten days or so at a time. It keeps me from scratching -- which is very good for my leg.

When I took off the last one a week ago, the area of rash had shrunk considerably, and the red bump spots were either gone or much smaller. In the past, the skin where the rash lives had become rough and thick, and it looked dry. Now, most of it was the same texture as the rest of my skin.

I wanted Iva, my acupuncturist, to see the improvement so I decided to leave the dressing off for a couple of days. Because it wasn't itching, I continued to leave it free after I saw Iva. Yesterday, after almost a week of no itching, the urge to scratch returned with a vengance and I put a new bandage on.

Iva says that there are many specialized bandages on the market; she gets many ads for them. But she doesn't get samples and hasn't been able to tell which ones might work in particular situations. The Duo Derm packets used to be available on ebay for pretty cheap but they don't seem cheap right now. Hopefully, I'll get the rash healed before I run out.

I'm excited because it seems the bandage is not only helping me control that horrible fingernail action. It also seems to be helping the skin heal so that it can resist whatever internal mechanism causes the itch in the first place.

Tuesday, September 15, 2009

Shower Head Bacteria

This is something I'm NOT worried about because I have a metal shower head and I never put my face into the first blast. I put it here because it lists some possible lung bacteria.

Showering may be bad for your health, say US scientists.
In fifty shower heads, 30% had levels of Mycobacterium avium 100 times higher than those found in typical household water supplies.

M. avium forms a biofilm that clings to the inside of the shower head and those who get a face full of water when they turn on the shower, can inhale the bacteria suspended in water droplets into the deepest part of the lungs. Showers are also linked with a type of pneumonia called Legionnaires' disease and chest infections with a bacterium called Pseudomonas aeruginosa.
Some of these bacteria belong to the same family as TB. Metal shower heads are less likely to be infectious. Those with weakened immune systems, like the elderly, pregnant women or those who are fighting off other diseases, can be susceptible to infection.

--Report from the National Academy of Science and University of Colorado at Boulder, lead researcher, Norman Pace, forwarded from a friend who saw a BBC news article.

Friday, September 11, 2009

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.