Two Cities, Three Pulmonalogists -------------------- No capital "A" Answers (1)

Yesterday, Shelley and I went to Dr. Glen Peterson at Alta Bates Hospital in Berkeley. I briefed him on my history and the trouble of the last six months.

He looked at LAB test results and radiology reports. Then, he looked at and compared the two CT Scans as we watched and he gave us a lot of information about what we were seeing. He did the same with my August x-ray, comparing it with one done in 2005. Fred smiles for the camera in an x-ray almost as well as in the CT. so we can do the next follow-ups with x-rays. There's a lot less radiation in an x-ray so I'm happy about this.

Fred seems to have grown, but not greatly. He thinks Fred is atelectasis, which simply means that part of the lungs are not inflated and begs the question of what is causing this collapse.

I asked him if Fred could be caused by a cancer tumor pushing into one of the major bronchial tubes, obstructing the easy flow of air. He said it was possible but not very likely, that other scenarios offer more probable explanations. He said we couldn't rule out cancer but it's a minor eventuality.

Then he gave us a visual image. Think of an accordion, he said, which is compressed and collapsed with very little air inside. This is your lungs when you breathe out. Imagine that something sticky, like partly-dried mucous, is inside the folds of the accordion when it is folded together. Then, you breathe in. Part of the accordion opens but other segments of it are stuck together with mucous. Maybe some of these folded sections open a bit, others don't open at all. The air does not get into those areas and when the scanner takes a picture of it, that area shows up as a feathery white cloud. This is Fred.

He did a very thorough physical exam and gave me prescriptions for a mucous thinner, guaifenesin, the ingredient in cough syrup that helps you cough up mucous. If there is no change when I see him again in 4-6 weeks, he'll likely try another, more-targeted bronchoscopy to get more samples and perhaps some better visual information.

I'm not sure whether he talked about a long needle into the right middle lobe of my lung in the context of doing a biopsy or as a way to re-inflate the lung. But he said we wouldn't take that option lightly because the entire lung could collapse. If that happened, I'd have to be hospitalized and/or it could lead to a serious infection.

He spent an hour with me and only became time-anxious toward the end. He was smart and very present in the room, asked me good questions and treated us respectfully.

(To be Continued)

Doctors and Hospitals

I'm in the slow time between western medical events. The 3-month follow-up CT Scan was inconclusive. Tomorrow, I consult with two different pulmonalogists and I've been gathering a file of all my lab and other test results to take to each of them. I continue to feel very good, emotionally and physically. As always, I've had many thoughts and feelings about Fred.

I have a long-distance teenage friend named Jessica. Eleven years ago, she was diagnosed with the progressive disease, Niemann Pick Type C. Four years ago, after a series of seizures, she lost a lot of mobility and her ability to speak. She has been hospitalized twice since August 10. Her dad keeps a web-based journal and I wanted to share a couple of his entries about doctors and hospitals.

September 4
"All [hospital] admits are tedious, with the same questions being asked a number of times, usually by doctors and nurses who are seeing Jessica for the first time. The challenge is to answer all the questions patiently and completely, establishing credibility as a parent but not encroaching on the doctor being "the boss." You lose ground if territorial boundaries have to be drawn. It is also clear that all (doctors, nurses, therapists and caregivers) are like (master) chefs. They are usually very good and each has their own way of doing things. They cook with their own twists on recipes and techniques. We like to think that we have established a hybrid of what works best for Jess, when we get her home and have to deliver her care under our own roof. After settling in, Jess had a good night. . . "

September 7
". . . we are still scheduled for the PICC line tomorrow and we are discerning whether we want to have a new G-J tube put in at the same time. The doctors feel it will give Jess a better chance to avoid pneumonia. Since it is different, and new to us, it is a challenge to separate the zeal of those encouraging it from the considerations of its implications. We are looking to get a consult with the Doctor who knows Jessica best, her GI doctor from UCLA. The 3 day Holiday weekend seems to be a stumbling block to that end.

Today, while we continue our most important job as parents, we will also have to don a bright red or yellow reflective vest and play traffic cop, trying to stay off of “double secret probation” for visiting violations, while managing the comings and goings of caregivers, therapists and visitors who would like to say hello to their favorite patient. Remember only 2 people per room, unless it is convenient for that moment for the doctor to be able to speak with mom or dad while 2 caregivers feverishly tend to the moment to moment needs of Jessica. If I sound bitter--"

Jessica has had many hospitalizations and her family provides and coordinates 24 hour care-taking when she is at home. "Care-taking" is a euphemism. They keep Jess alive with constant attention and procedures that most of us would think could only be done in a hospital. She lives as a family and community-member in an integrated way that constantly inspires me. When Jess is in the hospital, their expert, individualized care-taking goes with her.

It makes me furious that they have to struggle to be seen as equals with medical folks, most of whom have never even met Jessica. The hospital has a new stricter visitors policy which actually makes their work with her there harder. That some administrator, and his or her managers, are enforcing it in this situation also makes me furious.

Jessica's dad says this: "... we are discerning whether we want to have a new G-J tube put in at the same time. The doctors feel it will give Jess a better chance to avoid pneumonia. Since it is different, and new to us, it is a challenge to separate the zeal of those encouraging it from the considerations of its implications."

He is talking about my challenge in considering lung surgery. I hope I get my elusive diagnosis after I see the pulmonalogists tomorrow. But, even that may not tell me definitively whether or not surgery is in my near future. The consequences of medical procedures land in a very personal individual body. Given that this body is my own, I'm very interested in it working as well as possible for as long as possible.

The Big Questions

How much time, money and energy should I expend on this on a day-to-day basis?

When should I stop doing everything else in my life and concentrate on finding answers and healing?

What's the balance between the western medicine and other approaches?

How much research and study should I do?

What the CT Scan said

Dr. Wendy called me this morning with the report from the radiologist. After three months, my lungs are not significantly worse. Nor are they better.

She faxed me the technical notes which I'll get later today.

So, still looking for a diagnosis. She warned me yesterday that the pulmonalogists are likely to give me a lot of information and no clear answer.

It's an anti-climax. I suspect I'll have more to say about it later.

CT Scan

Tomorrow morning I'll go in for my second CT scan. We'll get a report mid-week, and then I'll know if Fred has grown or receded in the three months since the last test. Some part of my brain is cold and shuddering. I'm afraid.

It's odd to have such a fear of bad news mixed with a non-frightening medical procedure. I'll be getting 14 times the amount of radiation than I'd have with an X-ray, but there's no pain or awareness of the radiation. I've already had the contrast chemical dropped into my blood, so I know I'm not allergic. It's nothing too hard. I'll get up, get over there and go through the paperwork, the shuffle from office to office, and the strangeness of having people I've never met take me through a process while I'm dressed in a flimsy hospital gown.

My life and death question doesn't fit into this impersonal medical world. So, I want a chorus of wailers with me. I want their voices to rise and fall in discordant cacophony then steady to a soothing it's all gonna be okay hum. I want them to alternate one state for another from the moment my alarm goes off and through several days of waiting until I get off the phone with the results of the preliminary radiologist's report. Then I want them to stop.

What My Lungs Look Like

Fred makes its home in the right middle lobe.
That's the part the surgeon wants to cut out.

Rash

About the leg rash that sent me to Iva Jones initially: I'm trying a "super bandage" called Duo Derm. It comes in a 3x4 inch sheet and is a skin dressing for the treatment of leg ulcers or areas of the skin which are healing slowly. It's very expensive although you can get it on E-Bay for much cheaper. My friend Ruthanne gave me a box.

I had used one for a week, last week. It kept me from scratching and the itch seemed to go away after the first few days.

Right now the rash is about 2 x 4 inches on my leg and extends into my ankle for another 1" x 2" patch. There's three bumps under the skin on the right side of the larger area.

The skin looked much better when I first took it off, but it doesn't look so great now, 24 hours later. I haven't scratched it. Maybe it healed because I wasn't scratching for a week but the underlying internal inflammation is still there. Maybe it just wants more time.

I'm going to put another one on.