Marina's condition

1/2/05 This has gotten awfully long. I am herewith switching to a more traditional 'blog' where I will continue to add information, and people can (I think) add comments. That site is: https://circledance.tripod.com/Marina/ (You can click on the following white line to go there.)

1/1/05, 2 pm
The spine continues to be fine. Marina had full body Xrays this morning. (Digital Xrays are fast and clear.) My, it is impressive. Two 16-inch titanium rods, about an inch apart, gently curving out at the base. Think 'Eiffel tower." About 20 2-inch horizontal gadgets (I don't know the name) connecting the rods to the vertebrae at all levels. Lots of screws and wires.

The other problems persist: high blood pressure, low sodium, and the neural pain and the weakness in the left leg. Marina is terrific at ignoring pain, as she always has been, and is standing, and walking (with a walker) up to about 30 feet so far. May try stairs on Sunday when the physical therapist returns. I get the feeling that everybody is ready for her to go home, and they may just do this on Monday or Tuesday, with the instruction to visit the primary care physician (who is also on UCSF faculty) soon and regularly.

And her tallness and straightness is constantly amazing, every time she stands. If she wore heels and a bouffant hairdo, she'd be 7 feet tall, I think.

Thanks for checking in.

John
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Dec. 31, 9 am

When I write "Pain is low" or "No pain," that really needs the qualification "as felt by Marina." The last tube, an arterial drip,was removed early this morning, and with it, the pain medication drip (dilautid), and now there is pain -- and will be for many months, says Dr. Hu, but it can be controlled to some extent. This means working with primary care physician, Dr. Rabow, who is also on the faculty of UC San Francisco. After a life of denying or ignoring pain, Marina says she will be better about talking about it, which is good.

Given that, she sits up and stands without help (although there is a walker in place for reassurance and/or emergency), and shuffles to the porta-potty. This afternoon will be the first real walk, in the hall, with brace (and probably walker), possibly trying stairs (they have a practice 7-steps device at the nursing station). "Assuming no problems with this, Dr. Hu says that discharge will probably be Monday, assuming no worsening of sodium, blood pressure, or heart rate situations -- all of which are not quite OK but apparently close enough for discharge, with possibility of nurse coming to the house 2 or 3 times a week to check.

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Thu. Dec. 30 8 am

"Two steps forward, one step back." --Dr. Kung, the 6 am ortho

Blood pressure much too high. 190 over something.

Sodium a bit too low.

And major pain where the "neurological event" occured in lower left leg, which the main pain med, Norco, is not helping. Neurontin is what is needed, but can't be used since it keeps blood sodium from increasing, which is more important.

Meanwhile, Marina just plows through the pain, and sits up, stands up, and moves 2 steps to potty without help. The brace arrived yesterday evening, and so today will be the first major session with the physical therapist: actual walking, leg pain permitting. Homecoming depends on controlling blood pressure and sodium, and getting more of a handle on leg pain. Things can change fast, but the possible Friday discharge is up in the air.

Meanwhile, everything connected with the spine is just fine. Incisions healing fast; no pain. Turns out that they "borrowed" one of her ribs to make the wedges that straightened the spine. It still feels uncanny, when Marina stands up, to be looking straight into her eyes, when it used to be looking over the top of her head.

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Wed. Dec. 29, 9 am

Best day yet. Marina was moved from intensive care at 2:30 am this morning, to a private room on the spine floor. No more "loopy" episodes. Pain level minimal. Down from 8 tubes to one. Sodium and potassium levels still too low, but being treated. Marina has been sitting up and lying down on her own, which involves swinging legs over the bed, and lifting them back up. The weakness in the left leg should get better with a combination of time, medication (Neurontin), and physical therapy.

So, the body brace fitting has been ordered, and as soon as the brace arrives (within 12 to 24 hours), walking can begin, and if that goes well, she is ready for discharge, possibly as early as Friday, in time to celebrate a wild and crazy New Year's Eve at home.

Dec. 28, 8 pm
The good news is that what Marina now calls her "loopy" period is entirely gone. Completely coherent and rational -- and, she said smiling at 6 pm, the first time in two weeks that her pain score was zero. A delightful aside about the loopy period -- where most of her rambling was related to Rigpa and Buddhist matters -- I"ve got to get a new wardrobe before I take the train to Chicago for the retreat" "If I can't figure out how to fill out this one and a half page form, Rinpoche won't let me into the Shrine Room," etc. As it happens, these episodes began around 7 this morning, which is when the day shift comes on. Marina's day nurse today, Alan, looks so much like Sogyal Rinpoche, it is uncanny. All visitors have noticed this. Can you imagine what it would be like to awaken from a very fitful night's sleep (ICU is not a quiet place) and seeing this cheery round Oriental face peering at you? He even has similar speech mannerisms -- "Do you understand what I am saying" -- and a very similar accent. And a green bead mala (just like Marina's) visible around his neck. Marina has mentioned the kings that walk among their people, ostensibly unnoticed. Can it be?

Marina stays in intensive care, because they can do blood tests all the time and analyze them on the spot, which doesn't happen in regular rooms. Allen Rinpoche says, "Don't you worry -- at $20,000 a day, your insurance company -- and they do come by every day to look at the charts -- will have you out of here as soon as possible." So if the sodium (and, we also add to the worry list, potassium) levels reach the normal range and stay there for a few hours, she could be back to the regular room -- and the physical therapy that will start at once.
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Dec. 28, 3 pm

Comes now low blood sodium, a troublesome condition that can affect the brain in various ways--such as the 4 or 5 hour episode of rapid and erratic talking starting at 7 this morning. The medicine men decided that the sodium-reducing medicine was interacting badly with the nausea-reducing medicine, stopped the latter, and coherency has returned. Troublesome time. Sodium level has improved slightly (123 to 126; 135 is normal), which (once again) could mean leaving intensive care this afternoon.

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Dec 27, 10 am

Pain lessened. Ketamine stopped. Neurontin increased. Norco added. Dilautid continued. Degree in pharmacology coming soon. Hope is to leave ICU later this Monday, but no word yet on when Marina will come home. Originally it was to have been a week after surgery #2, but the shin thing might cause a delay. Her spirits are very good, and she is eating reasonably well -- not hungry, but desperate to avoid another feeding tube situation.

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Dec. 26, 2 pm

The spine is fine. No problems whatever. But every silver lining may have a cloud. The annoying shin pain** is very painful, and no one knows what it is. Nine doctors have looked at it, including four from the pain center here. One hypothesis: when you have been lying essentially motionless for eleven hours, things can happen. Marina remains in Neuro Intensive Care, because it is the only place that 'super' pain medication ketamine can be used. They have been weaning her off it slowly, so perhaps a regular room on Monday. And she is getting a drug called Neurontin, for the shin, which is not for pain but apparently improves neural functioning. But physical therapy can't easily resume while the shin issue remains, and that could affect going home time, which is all quite annoying to her (and me).

**Isn't "shin pain" an Irish political organization?

7 am Christmas morning
Marina spent the night in NICU (neuro intensive care), had a reasonably comfortable night, and is very alert and interactive this morning. The only real discomfort, she says, is from her left shin. There is indeed a cut on it, that was not there yesterday. A mystery matter at this point. When I asked her last night, while still groggy from anesthetics, how she was, she replied, "I did it backwards and in high heels." [That, of course, is what Ginger Rogers said when asked to compare herself to Fred Astaire: "I did everything he did, and I did it backwards in high heels.] When I started telling her how well it went, she said, "Yes, I know." I asked if anyone had talked to her. "No, I know it internally." Private regular room likely later today, and life marches on, possibly backwards in high heels.

7:15 pm, Christmas eve
Total success!
Dr. Hu is very pleased with the result. The only scary part is that Marina will be 3 to 4 inches taller! She is resting comfortably in intensive care, not because it is needed, but because the usual post-op wing is closed (there were only two surgeries today). Should be in a regular room tomorrow, and home a week from tomorrow.

It really was a big deal today. 24 units of blood needed, which is just about the amount donated by and for her. (Thank you!). (Of course Dr. Hu did mention that it would have been done 20 minutes sooner, but for the fact that they stopped for pizza at the mid point.)

Happy Christmas to us all. Love from John

Friday 2 pm
First incision at 10 am. The reports from the OR at 11 and 1 were that everything is going well. Estimated time: nine hours, thus 7 pm
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Thursday evening
Surgery #2 is on for tomorrow morning, probably starting around 8 am, and tentatively scheduled for 8 hours.

Because it is not clear where I will find a telephone connection on Christmas eve day, I will first post any information on the telephone message line -- there are pay phones in the surgical waiting room -- (510) 594-4089 -- and then in more detail here when possible.

Marina is tremendously upbeat; we are all very eager for this to happen. Daughter Susannah arrived from Portland this afternoon, she who has finished about 1/3 of nursing school at OHSU -- and she is being very helpful here in Marina's room.

More, inevitably, soon. Thanks for checking in. --John

Later the same day (9 am, Wed the 23rd)
Mixed signals. The breakfast tray arrived, but the deliverer took it away, because there was an "NPO" (nothing by mouth) sign on the door. Today's nurse, Curry, said that was her instruction: because of surgery, no food after midnight, so she put up the sign. We gently pointed out that if this were correct, then Marina would be in surgery Right Now. Curry allowed as how the instruction might have been meant for tonight, not last night. If so, this is a clear signal that an operation might happen on Friday the 24th. But no word whatever from the Hu-Chu-Woo gang. (Curry is a nice lady, but also a walking reminder that at this time of year, the nurses with seniority are home or on the slopes.,)

Marina had no heart arhythmia at all last night, which is encouraging. And boy is she ever ready for stage two.
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Thu Dec 23, in the wee hours of the dawn
As Nero Wolfe says, "Pfui." We had been promised information from the Hu-

Chu-Woo conference "after 3 pm" yesterday. Well it is 12 hours after 3 pm, and no communication whatever. The three questions are whether Dr. Chu is OK to go ahead, from the anesthesia standpoint (Hu the surgeon and Woo the medicine man are with the program); whether the operating room will be available for a non-emergency; and, if so, whether the full compiment of staff can be found for Christmas Eve day. If it is to be Fri, then obviously we have to know on Thurs to adjust diet, etc. And if we hear nothing, it is probably safe to assume that it won't be until next Tuesday, Dr. Hu's regular surgery day. Pfui.

Under threat of having the dreaded feeding tube reinstalled, Marina has been eating reasonably well, albeit with no appetite whatsoever. They are now keeping a calorie chart on the door. She sits up, almost on her own (someone needs to swing her legs over the bed edge); stands up almost on her own (a rather pleasant hug during the process), and sits in a chair for up to 25 minutes to take her meals. No walking yet, but she does shuffle her feet while standing. Could probably dance "By the Quiet Stream" already.

The Lujan-Bears arrive from Portland later today, and I'll probably go home for a bit to greet them, unless the surgery is on Friday. Before we all get too much more cranky, we surely hope we will have news later today. Thanks for checking in.

PS: Members of Rigpa, Marina's Tibetan Buddhist sangha, have been coming to practice silently in the room; today, ane Drolma, a Tibetan Buddhist nun. And Marina was quite pleased with a phone call from Nena and Robert Thurman, he a close friend of the Dalai Lama, to assure that prayers are emanating in this direction from Tibet House in NY . . . and to 'prescribe' that we accompany them on a trip in Dec. 2005 to Angkor Wat and some Buddhist holy places in Sri Lanka. There's an incentive to get this all done with!

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Wed Dec 22, 9:30 am

Through the miracle of beta blockers, whatever they are, Marina's heart is under control and the operation can proceed. But Friday is an "emergency" day, which means nothing non-emergency can be scheduled until after 3 pm today. Dr. Hu has requested a 7:30 am start, but we won't know until after 3. Meanwhile, Marina is charmingly cranky, which is probably a really good thing. With the dreaded tube out she is eating real food (flank steak!) but having trouble with pain and keeping painkillers down. But she is happy.

What happens if it can't happen Friday? Well Saturday seems to be some sort of pagan holiday. Sunday is possible (same emergency till 3pm thing as Friday), and Monday is business as usual. More known after 3 pm.

Thanks for checking in. --John

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Tuesday Dec 21

Surgery postponed. The committee--surgeon, anesthesiologist, medicine doctor--are not comfortable with Marina's heart situation. Ventricular arhythmic tachycardia. It is beating too fast in general, and has periods of irregular rhythm. Last night, they moved her from the spine floor to the heart floor, to be able to do constant monitoring. There were two brief arhythmic incidents during the night. While it can apparently be controlled with medication, that is dealing with the symptom, not the cause, and they want to find the cause.

So for the next three days, that is what will be going on, with the second surgery tentatively scheduled for Friday the 24thj, the next time Dr. Hu has available. In the meantime, there will be reduced physical therapy -- brief standing and chair sitting -- the lots of heart stuff, PVCF was the other term they used; haven't checked that out yet.

Marina is excessively annoyed -- and also in much pain, now more around the 8incision than from anything gastric, and so this is a high priority for today as well.

I wish it were more cheery but that's how it is at 8 am Tuesday.

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Mon Dec 20, 8 am

Well, we have something new to fret about this Monday morning. Marina's heart rate has been creeping upwards slowly and steadily since the first surgery, and now it is a troublesome 140, twice normal. At this moment, they don't know why; her EKG and blood analysis are not irregular. They wonder if it could be a partial blockage, perhaps in the pelvic area, from the first surgery. Specialists are being called. A circulatory system MRI seems likely. No word yet on whether this would delay tomorrow's surgery. I'll add more later today if more is known.

3:30 pm. Painful day. Many tests, many hypotheses (water in lung; chest bruises from hours face down in first surgery, etc.), nothing conclusive. CAT scan will be done soon. If there is no evidence of a blood clot, then surgery will likely go ahead as scheduled tomorrow. More later.

7:45 pm -- The CAT scan shows fluid in and near the lung (not too dangerous) and no blood clots (good news). Sometime between now and tomorrow morning, the surgeon, the anesthetist, and the (why do I find this title amusing) medicine doctor (it is a man; does that make him a medicine man?) will confer and decide whether or not to operate tomorrow. (That would be Dr. Hu, Dr. Chu, and Dr. Woo, I kid you not.) Most signs point to going ahead. Marina is really ready for this; she is very tired of hurting.

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Sun Dec 19

Milestones: standing up (helped only by one person, me) for six minutes, including shuffling feet. Not quite dancing yet. And sitting in a chair for nearly half an hour.

The unexpected word from the PT (physical therapist) is that Marina probably will be using a walker for 6 to 8 weeks. We had believed that pushing or pulling with the arms was forbidden, but apparently not, just lifting. So we'll need to get an armchair with strong arms, and rails installed around the toilet.

Ethicist secretly refuses to take pill. Marina's gastric woes continued yesterday, and she believed that they began when she started taking calcium/iron pills, presumably to build up iron for surgery 2. But each of the first two, 2 hours apart, brought on severe gastric attacks. So when the third dose of the day was provided Saturday evening, she went through the motions but palmed the pill. She felt pretty good when she went to bed.

Another somewhat unsettling thing from the PT. He said that as discharge date is near, there is a meeting among the surgeon, the therapy people, and the head nurse, to decide whether Marina should go home, to a skilled nursing facility for a while, or to a rehabilitation therapy center. This had never been mentioned. Marina, olf course, vigorously wishes and intends to go home. But she mustn't do anything to cause alarm in the land of HealthNet Insurance, which is mostly paying for this caper. Probably a six-figure amount, not including the pennies, starting with a "3."

I'll be going home Sunday afternoon, TCB, returning to the hospital Monday afternoon, in time for the second big day. Some people have asked (thank you). I'm doing fine. This is my job right now, and I have no other expectations, deadlines, etc., and it feels right.

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Sat Dec 18

There are ups. And there are downs. Yesterday was great for the spine -- very little bother -- and terrible for the digestive system. Big pain all day long. The nurses are constantly asking for a pain reading, on a 1 to 10 scale, and Marina has mostly been 3 or 4. Yesterday it went to 8. But through some combination, whether carefully planned, or fortuitous, of Norco painkiller, a second pain killer, and old fashioned Maalox, she had a good night, and is down to a 2 this Saturday morning.

She is much more mobile than we had feared; there is a lot one can do without BLT, bending, lifting, twisting, from rolling over, sit, stand (no, wait, that's the dog), positioning apparatus, and so on. Bodes well for life at home.

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Fri Dec 17

Three good things. The feeding tube finally got into place on the 5th try, and concentrated nutrient is going straight into the intestine. The "pray for farts" mantra worked in spades and the digestive system has been jump started. And Marina had a scheduled 30-second standing up Thursday afternoon, to be followed later today by standing, then sitting in a chair.

One bad thing. Possibly due to the nutrients, Marina had the mother of all indigestion attacks this morning. They did an ECG (formerly known as EKG) just in case, but hope and believe that pain medicine, good old fashioned Maalox, and reducing the level of feed tube activity should work. Seems to be.

There is one of those old-fashioned one-day-to-a-page pad calendars on the wall. Huge. Every day, at the 2 am vital signs check, the nurse tears off a page. We are reminded of those old movie scenes signifying passage of time by those pages fluttering by. But Marina also sees it as a reminder that she is now less than four days from starting the process all over again.

Thanks for stopping by. -=John

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For information on visiting (in hospital or later at home), and ways to help , please make contact with our friend Fran Cooper (FranCooper3@aol.com or (510) 339-0532), who, thankfully, has taken on the job of Care Coordinator.

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Thu Dec 16

All continues to be generally good, but a discouraging time with regards to some tubes. The feeding tube has been inserted four times--a painful process-but has never ended up in the right place. Therre is strong evidence that putting nutrients right into the intestine is beneficial so they will keep trying. And there are catheter issues. But pain is tolerable (with pills, now, not morphine drip), and all is on track for surgery #2 on Tuesday.

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Wed. Dec. 15

All continues to go as well as could be hoped for. Marina is in a private room (L829) at UCSF Hospital, with all the mod cons: TV with 36 channels, desk, Christmas tree (well, we brought our own), four chairs, a Barcalounger (which enables me to stay overnight), and enough apparatus to start your own smalltown hospital. So there is much discomfort due to a feeding tube (nutritionally better than IV feeding), chest tube (removes fluid), 3 IV tubes, those wonderful pulsating electric stockings, etc., and the essential patient-controlled morphine drip.

Marina is very upbeat; is already getting fruit juice and consomme, two days earlier than the usual -- but only if she can handle it. The mantra from the surgeon is "Pray for farts."

Still too soon for visitors or even phone calls, but perhaps by Thu or Fri.

Thanks for checking in. John

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Written Tuesday, December 14, 2004, 2:45 pm

All is well. The first surgery is over, and was entirely successful. Marina is in the recovery section -- won't need to go to intensive care -- and should be in her own room by evening.

The surgeon did discover, unexpectedly, that there were three areas where the spinal bones were fused -- apparently long ago -- possibly even a birth defect, or possibly a result of untreated childhood polio (which Marina suspected she had at a time her mother was a Christian Scientist, thus untreated).

Because the fused portions are in the back, and today's operation was from the front, they will have to be dealt with in surgery #2 next week, and that will make it a more complex and longer operation, but not necessarily a more dangerous one.

So all is as well as could have been hoped for. Thanks for checking in.

Love to all, from John

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Written November 3, 2004.

Marina's surgeries are technically called Anterior-Posterior Spinal Fusion: Staged. The first operation is scheduled for December 14, 2004 at the University of California, San Francisco, Department of Orthopaedic Surgery. In this 8-hour operation, surgeon Dr. Serena Hu will operate from the front, cut into the spine at various locations, open up 'wedges' and fill the spaces with 'bone putty' made from either rib or hip bones.

Following a week of recovery in hospital, the second eight-hour operation, scheduled for December 21, consists of operating from the back, to install titanium rods, and other hardware, to hold the spine in place until the bones have fused: probably three to six months of wearing a full body brace.


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