And Home

Our adventure came to a safe conclusion this afternoon. We walked in the door and within ten minutes Dr. Lent (from NJC) called to see how Pam was doing. I can't recall a time when the doctor herself (not just a nurse) called directly to check on Pam. In addition, we had lengthy consultation reports waiting in the mail.

As soon as we unloaded the car, T'auna and I headed for the pharmacy - gulp. I think they are now looking to remodel and expand the store thanks to us . As we suspected, they didn't have all the medicines on hand - so Pam will have one more day to wait before starting the full therapy. T'auna and I counted up 16 prescriptions that Pam is now taking - plus a bunch of over-the-counter stuff. Drugs anyone?

I mentioned to my good friend Chip Kooi that the last two weeks are a complete blur - so many tests, instructions, and emotions - both moments of hope and of utter discouragment. Pam and I are weary tonight - but it is good to be home, even if we know this roller coaster is not yet at its end.

Speaking of home - my next job is to decarpet (thanks for the term Katie) a good part of the house. We'll call it "Revenge on the Killer Dust Mites" or "Not-so-Extreme Home Makeover" - but the carpet has to go (and maybe some of the stuffed fabric furniture too). So don't be surprised to find a call for strong-back volunteers in the next little while.

Time to rest.

Tuesday - And Headed Home

A typical day - and difficult to capture in words. Pam had a bad day today. By the time we got to the doctor's appointment this afternoon she was really struggling - blood pressure off the chart and breathing very poor. She alarmed the nurses and had a breathing treatment started almost the moment the doctor walked in the exam room. Not good, but at least I (and Pam) was able to point at Pam and say this is what it is like - one day out of three. And at least this episode came today instead of tomorrow. Now the doctor saw it for herself and yes, I think it made a big difference - not only for Pam's asthma but our discouragment.

The primary diagnosis is "Bad Steroid Dependant Asthma" plus a number of other contributing or resultant factors/diagnoses (I counted 7 on the doctor's notes we have with us). Not all of the tests results are back, nor have all the needed tests been done. When we get back home we will meet with Pam's primary care physician, go over the results from NJC, their recommendations, and schedule additional tests that we could not squeeze into the week here.

Meanwhile, Pam is now on a host of new medications (I counted 8 new prescriptions to fill) and following a lot of new instructions. We have hope for a turn-around, but are fully aware as we leave that this is not even close to over yet. At best, Dr. Lent has advised us that it will be a month before we know if the new approaches are working or beginning to work. Then if all goes well it is going to take time to get Pam off steroids, get her lungs healthy again, and start rehab. Dr. Lent believes Pam is going to get better and will be able to resume life. We have to admit it is hard to believe on days like today.

We will begin the drive home tomorrow and hope to arrive sometime on Thursday.

A final word before signing off - thanks. Thanks for the prayers, for your comments on the blog, for the notes sent here to the hotel.

Sunday - Day ?

Pam leaves for the sleep study in a few minutes, otherwise no health-related news to report today.

We did get to the Lakewood church this morning and saw many good friends from our years in Denver.

At this point we are on hold until Tuesday's exit visit with Pam's attending physician. Most test results should be back by that time (but not all) and hopefully we will be able to say that all this has provided answers and solutions that are helpful to Pam.

Saturday - Sabbath

Pam got the Ph probe taken out this morning. Otherwise, NJC is shut down for the day. It is Saturday - the sabbath - and despite its history NJC, like most institutions of its type, is thoroughly secular with few signs of its heritage remaining. Nonetheless, a rest day. Pam is tired and resting. I did a little Christmas shopping in the city (wouldn't you like to know what I bought for T'auna - ho, ho, ho).

Shalom.

Friday - Day Four

Not much to report today. The pharmakology/blood tests went as scheduled (3 blood draws through the day) and we had a mid-point visit with Pam's attending doctor (Lent). One additional test was added, a Ph probe - to determine the extent of acid-reflux and whether or not this acid might be getting into her lungs and keeping them inflamed. She "gets" to keep the probe in her esophagus until tomorrow morning.

Dr. Lent did resume Pam's medications today, albeit with a number of changes.

Thursday - Day Three

A long day today. Pam started this morning at 9:00 with an appointment with a pulmonologist, Dr. Beuther (aka Doogie Howser, M.D. - for those old enough to remember the show). Her last appointment with the Ear/Nose/Throat specialist concluded at 8:00 this evening (he was running a tad behind). Each consultation was helpful (lasted about an hour with each doctor); each primarily ruled out major issues while observing a variety of moderate to mild abnormalities or contributing factors to her illness.

Between the consultations we attended a medications course on what, why, and how to use the various medications associated with respiratory illness. Pam said it was helpful, learned some things no one had ever told her (some pretty important). We did notice that Pam has been or is currently taking most of the medications discussed. Otherwise, we met with a Pharmakologist to discuss the testing for tomorrow. Quite interesting actually, as long as you are not the person being tested. They'll draw blood, give Pam some drugs and then draw additional blood throughout the day to see how her body processes the chemicals. They'll also take blood and run some tests on it to see what drugs are most effective. Sort of like a cool science lab experiment.

Pam's pretty tired tonight - a long day and still without most of her medicines.

Wednesday - Day Two

Tests today, doctors tomorrow. Our morning was filled with consultations with a nutritionist (with special concern for oral steroids) and an occupational therapist (focused on energy conservation and breathing techniques). Pam thought both sessions were helpful, but especially the occupational therapist.

Tests filled the rest of the day. Blood draws, bone density tests, an echocardiogram, and CT scans of sinuses and lungs. No revelations today, but we didn't expect anything with a heavy fact-finding test schedule. Tomorrow we meet with a Pulmonologist and an Ear/Nose/Throat specialist, among other adventures. Depending on test results and their insights, they may schedule additional tests or rearrange others.

Nothing else to report tonight. We do appreciate your prayers and comments of concern.

Tuesday - Day One

As scheduled, Pam checked in for her first day of testing at 9:00 this morning. After obligitory waiting and paperwork, we were with the first of her doctors (Dr. Leong, an M.D. doing a postdoctoral fellowship) by 10:15. She spent 45 minutes with Pam taking a detailed case history, asking questions, and examining Pam before she left to present the case to the Allergist supervising Pam's treatment, Dr. Lent. After 15 minutes for them to confer, they both returned to the room and spent another 30 minutes with Pam, examined her, and explained the plan for the week. Essentially, they will start from ground zero to build a diagnosis and treatment plan.

First stop, a "Walk Ox" (Walking Oxygen) to make sure Pam was getting enough oxygen at a Mile High. She passed her first test. Second, speech therapy. Yep, you read right. Vocal cords are supposed to close up the airway to protect the lungs and throat from bad stuff, but sometimes they become hyper-vigilent when they have had long periods of irritation or steroid use (I think I'm getting all this right). As a result, they sometimes restrict the airway and mimic symptoms of asthma ("Paradoxical Vocal Fold Motion"). The test for this comes later in the week - but the exercises for correcting the problem began today. Finally, allergy testing. Pam's back looks something like a checkerboard with all red checkers and several kings protruding above the skin. The technician's reply, "Wow, you have a lot of allergies." But there is very good news today - the skin test denoted no allergic reaction to dogs. Beauregard and Bailey are safe tonight; they get to stay (yes, we had wondered about an advertisement for a matched set of Basset Hounds to a good home with comfortable recliners).

Tomorrow's line-up includes Bone Density studies, a nutritionist, a variety of radiology exams, and a promised visit in the evening from close friends from Buena Vista.

Favorite Desk Sign - appreciated by anyone who has ever been to an over-scheduled specialist: "Please let the receptionist know if you have been waiting more than 10 minutes past your appointment time." And yes, they mean it - this place is different.

Least Favorite Moment (for Glenn): Overheard cafeteria conversation among doctors/faculty of the medical college about incomprehensible faculty committee decisions. It was like being back...

Denver Arrival

We arrived in Denver this afternoon. The mountains are as beautiful as we remember and the city still has a familiar feel to it. Our hotel is only a few miles from the University of Denver/Iliff School of Theology where I attended from 1995-98.

Pam made the trip fairly well. She was pretty sick when we left on Saturday, better for the drive on Sunday, and better again today. She is worn out this afternoon, but at least able to lie down and rest. I have a great sense of relief and gratitude for our arrival - both to Denver and to this opportunuty.

We check in at National Jewish at 9:oo in the morning. We never received a testing schedule; I suppose we will see what the week looks like when we get there tomorrow.

Pre-date #3

Good news - we got two phone calls today and everything is set with scheduling and insurance. The supervisor also apologized for the way in which this has been handled.

Pam's on day two without the medicines and feeling pretty bad. I don't know if we will leave for NJH tomorrow or Sunday; I suspect it will be tomorrow.

Pre-date #2

In my last post I mentioned that the paperwork at NJH appeared to be lagging behind. Come to find out, that was a bit of an understatement: before yesterday morning they had done nothing. Yep, nothing - except schedule one consultation. True, the previous case manager had told us everything was in order for the full diagnostic work-up (apparently she has been dismissed) - and for nearly 4 weeks Pam has left message after message trying to get someone to return a phone call to confirm her appointment.

Well, the supervisor called yesterday to tell Pam they didn't have anything scheduled for her and didn't really think they could put anything together at this poinit. Besides the late date, all the allergists were going out of town to a conference. Pam was stunned (among other emotions). When Pam explained to her that she had already begun going off medications and that rescheduling was not an option, she agreed to try to work something out. Then yesterday evening she called back to say that things were coming together as originally planned - not every doctor was going to be gone (like we believed that in the first place). We talked for a while - I laid out a series of questions and she promised (explicitly, repeatedly) to call back today at 5:45 to give us a status report regarding scheduling, insurance, and most important - whether Pam should proceed with another medical procedure tomorrow morning.

It's now 9:30 and NJH has yet to call. NJH is, without doubt, the national leader for research and treatment of respiratory illness. Their administrative staff, however, is ______ (you fill in the blank). I'm not sure what the failed phone call means - if something else has fallen through, if almost everything is done and she didn't want to call until it was, if she just forgot, or if she just has no idea what it is like to be on this end of things. The plan for tomorrow is simple: NJH has until I am out of class at 11:00 (10:00 their time) to call us - or I begin to call until I get a real live person on the phone (another story for another time) and get some answers. Meanwhile, Pam went off almost all medications today (in hopes of all this coming together); she's doing about as good as one could hope tonight.