Saturday, January 04, 2014

Mrs Thorney has heart valve trouble, early 2014
  Last note at bottom, Jan 3 about 7 PM

We drove from Memphis to Kansas City to visit daughter  and family around Christmas 2013. Late on Dec 27 Mrs. Thorney (hereafter She or she for brevity) was unusually tired; when she was still tired the next morning I took vital signs and we went to the nearest emergency room. The initial diagnosis was severe congestive heart failure, with a great deal of fluid in the lungs.

January 2, 2014  report:

We've known for some years that She had severe aortic stenosis (stiffening and narrowing of the aortic valve, the main valve leaving the heart.)  Whenever we've asked about replacing that valve, her cardiologist has said "she is not complaining of shortness of breath or chest pain; she is up and about and active mentally and socially; let's not do elective surgery. It will let us know when it needs replacing. Now, it seems, it has let us know.  Luckily Kansas City has one of the major heart hospitals (St. Luke's) and She was transferred there by ambulance.

Her attitude toward this, as to a few previous incidents, has been "I've had a wonderful, full, life. Life doesn't owe me anything. But I'm having much too much fun to leave. What are you (doctors) going to try next?"

She is comfortable, in no pain, fluid out of lungs, on oxygen but able to walk around with a long oxygen cord. There are plenty of phone calls and family around.

The doctors have been spending a great deal of time testing, discussing alternatives, explaining things to us. They say this is not an emergency situation, they want to work out the best procedure and best surgical team.  They don't want to open her chest, preferring to go in through a small hole and replace the valve that way.  (She feels she's an old hand at this, having had a stent placed in her abdomen, in the superior mesenteric artery, in 2011.) They don't think they can go up her aorta from her leg due to the prior aortic dissection.  They could enter between ribs or by cutting a small hole in the sternum.  But they prefer to use instruments placed down the esophagus to get a good look at what they are doing, and She has had a constricted esophagus for years (causing her to eat slowly, but  it has not been enough of a problem to justify surgery in the past.) So we are now awaiting an angiogram to see what the arteries around the heart look like and an upper endoscopy and possible biopsies and balloon stretch of the esophagus to see if it can take the instruments the cardiologists want to put down there. As of January 1, it sounds to me as if the surgery itself may be one to three weeks in the future, assuming they work out a method.

January 2 PM:  Today we had high precision CT scans, pulmonary function test, got more prior reports from other hospitals, discussions to plan work for tomorrow (upper endoscopy down to the duodenum, biopsies if indicated, possible balloon stretch of the esophagus. Instructions on what she can and can't eat have been changing every two hours, sometime before she can open the ice cream they just delivered. We cannot complain of any lack of medical attention, and have lovely discussions with the chaplain. They are still exploring the possibility that the presenting cause was a form of pneumonia, although that does not negate that the aortic valve is getting worse and, by any usual standard, needs replacing.  One problem is that the muscles that push things down the esophagus are weak or uncoordinated, so when she eats in a hospital bed (not fully upright) things she eats or drinks don't go down properly and she may get them into her lungs.
        .It's after 5 PM and we've been told to expect more doctors this evening.

January 2  at 7 PM - they did more pulmonary function tests, no one has told us results. (later - lungs working at about 50 percent of optimal) More past test results have arrived. They have cancelled the Friday angiogram [but later reinstated] and scheduled a major endoscopy to look over the throat, esophagus, and duodenum, biopsying and stretching as possible, then a swallowing test.  So she's on nothing-by-mouth for the next 18 hours or so, and back on an intravenous. If they decide they still need the angiogram that can't be done before Monday.[wrong again]

Jan 3 PM. It has been a very very busy day.  An upper endoscopy in the morning showed the esophagus sufficiently clear that they will be able to put a doppler sonogram probe down the esophagus to image the heart from that direction during surgery.  No narrowing of the esophagus was found but they have considerable questions about her swallowing ability - perhaps malfunction of the swallowing muscles (peristalsis?).  They hope to do a swallowing study Saturday morning.  Reading of x-rays showed a very fuzzy area near the heart and they don't understand it - pneumonia? inflammation? aspiration? something related to heart? So the pulmunologists want to do more before letting her out of the hospital.  Afternoon they did a coronary angiogram since they had found no record of a recent one elsewhere. No arteries are blocked, in fact they were in unusually good shape. The lower part of the aortic dissection has healed remarkably, according to a cat scan. But there is a substantial aneurysm (7 to 8 cm) in the aorta just below the left subclavian artery  (where the arch turns down.) Cardiologist believes the odd appearance in the lung may be something associated with that large aneurysm.  So they need to replace the aortic valve and stent the aortic aneurysm. They hope they can assemble the rather large surgical team to do that on Monday morning.
      They cannot go up through the aorta because one end of the stent in the superior mesenteric artery extends out just enough into the aorta that equipment headed up the aorta might snag on it. (It may not have projected out when it was placed but the aorta has changed shape considerably since then as the dissection has healed.)  So they propose to go in between the ribs under the left breast, run equipment into the bottom tip of the heart into the left ventricle (if I understood correctly) then run their tube through the heart and push the existing valve flaps aside and install a new aortic valve (bovine pericardial valve in cobalt-nickel?), then continue to move their equipment through the new valve to stent the aorta. The man says he has done this quite a few times, most recently last week. (Dr Allen is the one talking with us and is one of the surgeons who will be there.)
         Risk estimates?  10 percent risk of serious side effects or death from the surgery;  over 50% risk of death within a year if the surgery is not done, given probable failure of the aortic valve or probable bursting of the aneurysm.
        She came through both major procedures today fine, recovered quickly, the anesthesiologist was extremely nervous about the endoscopy and did terminate it a few minutes before the gastroenterologist would have liked but the gastroenterologist says he is happy with the results and saw nothing that would require biopsies or a balloon stretch.
      They are letting her have ice cream and some other stuff this evening - "full liquids but no actual liquid", in other words soft foods, after about 28 hours of nothing-by-mouth.  She is a bit confused by all the goings on but speaks loudly and demands explanations appropriately.  She helped convince the reluctant anesthesiologist that yes, she really wanted this done.

(end of Jan 3 notes)

Jan 4 morning
The swallowing tests went well, they are letting her eat again. She is delighted!
The hospital web filter has now blocked our usual social website as being too explicit,so I'll have to put a note there with this address when I am at the daughter's house.

Apparently she'll get to rest Saturday afternoon and Sunday and they hope to do the major surgery on Monday late morning, assuming she is still stable and the surgery scheduled before her that morning goes as planned.

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