Sometimes it seems you can’t win for losing. Once again, on the threshold of surgery to get my left hip replaced, the operation has been postponed. This time it was not my doing, though. We got a call from the office of the hip surgeon, Dr. Dayan, Wednesday morning, saying that due to a family emergency, all surgery had been cancelled. I hope the ‘emergency’ is the birth of Dr. Dayan’s fourth child. He warned us that it would be taking place “sometime in April”. *sigh* I’m happy for him, of course, but I suspect it will be another three weeks before I can get an OR (operating room) date.
The first delay, while not exactly my doing, had to do with me. After the surgery to replace my right shoulder, I found myself not exactly bouncing back. I had more pain to begin with, though Dr. Struhl thought the problem was due to the type of anesthesia that I had had this time. The first shoulder had been replaced under a nerve block, and that could not be done for the second shoulder because my blood work had not returned to normal following the right hip replacement. (Apparently it takes my body longer than normal to remove blood thinners which are required to prevent blood clots after hip surgery.) Hospital policy required that any surgery be done under general anesthesia when there are abnormal blood tests which don’t preclude the surgery completely. Since surgery done under nerve block typically has less pain post-operatively, that was the first assessment.
You may recall that subsequently, in BWA, May 2002, I reported: “I was recovering nicely from the surgery until two weeks ago when I started walking with crutches again. It seems to have put excessive strain on my arms, because, since then, there has been a marked increase in pain, making prolonged interaction with a keyboard unpleasant. The physical therapists agree, and have suggested that I go back to using a walker. Meantime, Gary is typing this for me to e-mail to Lucy.” These were doomed to become famous last words. The pain continued to be a problem. Additionally, I continued to not feel good. I generally had no energy, I was depressed, I had low-grade fevers and chills (never high enough to be really alarming or long enough to indicate a specific problem.) I kept going to the medical doctor, Dr. Hegazi, to treat things that seemed to be coming up...sinus infection, bladder infection, pneumonia. Meanwhile I kept worrying about going into septic shock from some low-grade infection like those. I began to think maybe I was scheduling these surgeries too close together to give myself time to really recover. I wondered if I was having a delayed emotional reaction to the episode of delirium after the first hip surgery (in reaction to the antibiotic then had given me). I just didn’t feel good. Nevertheless, we scheduled the left hip replacement surgery for September 10, 2002.
A couple-three weeks before then I had begun wearing a bra again since it seemed like the shoulder scar had healed completely. Within a few days I got an area of redness in the scar. I showed it to my physical therapist who suggested it was irritation from the bra strap, so I stopped wearing a bra again. However it didn’t go away; in fact it seemed to get larger. So I showed it to Dr. Hegazi when I was getting my clearance for the hip surgery. He diagnosed cellulitis and put me on an antibiotic. He also told me to go back to Dr. Struhl and have him look at it. Dr. Struhl did not like the looks of it, and he and my hip surgeon, Dr. Dayan, had a conference which resulted in putting the hip surgery on hold until it was clear what was going on. About a week later the area was still there and getting no smaller, so Dr. Struhl tried to get a culture from it. It didn’t exactly look like an infection, and my blood work also did not exactly look like I had an infection, but there was one test that had come out excessively high. (All the others were within normal limits.) Still, something wasn’t looking right, so he started doing a work-up for infection in the shoulder. This process, however, was hampered by the HMO’s delay required to approve all testing. In the meantime, the reddened area finally changed...for the worse. An area developed which was clearly a pus pocket, and then started “pointing” (basically coming to a head, like a pimple does, and getting ready to rupture). It was clear, then, that I had an infection going on and the question was where...in the bone or in the tissue. Dr. Struhl took more cultures and tried to arrange a particular kind of scan called an “indium scan” which he felt would be diagnostic. Well, it turned out that this test could not be done by the Hospital for Joint Diseases because, apparently, they had not paid their bill for the material necessary to do the test. So first, I went to have a special x-ray in which the shoulder would be fluoroscoped and a contrast media would be injected to see where it went in my joint. The media was injected into the rear of my shoulder and where it went was directly to the pus pocket. This did not look good, but nothing clear-cut was apparent either. So, Dr. Struhl arranged for me to go to St. Vincent’s in order to get the indium scan, which is a two-day test. They have to inject the stuff one day and then do the scans the next day. In the meantime, he continued to want more blood tests because nothing was showing anything definite. We were running around two or three times a week going to different places to get different tests done. (Partly this was because I had started having palpitations and showing an enlarged heart, which had to be cleared before any more surgery.) Everyone in Marc’s office was becoming very familiar with my problems; Dr. Struhl was not so lucky. Every test turned out negative except that first aberrant blood test. Finally there was nothing else to do but to open the shoulder up again and see exactly what was happening.
The exploratory was scheduled for October 3, 2002, but the adventures were not done yet. At Dr. Struhl’s office on October 2 we found out that my potassium was too low. This turned out to be the cause of the palpitations but raised a new problem for surgery. Dr. Struhl and Dr. Hegazi consulted, with the result that I was to be admitted immediately to the hospital in order to get my potassium levels up by the planned surgery. Thus I had to go from Dr. Struhl’s office directly to the hospital (do not pass Go; do not collect $200) with nothing packed or ready. Since it was past 5:00 by that time, I would be too late for supper once I got there, so we detoured on the way to get something to eat and then spent hours waiting in the Immediate Care office for the paperwork to get done. Another hurry-up-and-wait day down the tubes. Marc had his laptop (and was writing his zine about this) and Gary had a TV Guide to read, but I was going stir crazy. The friend (Paul Birnbaum) we had with us to help with the transportation had not been expecting to make a day of it, either, so he kindly went out to a nearby bookstore to get me something to read. It was a very long, very wide day.
Once they were done with the admitting procedures, they finally got me up to a room and I waited for someone to order the IV potassium I had been admitted to receive. The order had not been given by the time they took me to the OR the next morning and, in fact, it turned out that in reality no-one was really very concerned about my potassium level. It was not excessively low, and the anesthesiologist (who was the doctor in a position to cancel the surgery if he didn’t approve of my blood work) said that in a patient like me who was on diuretics for hypertension and fluid retention, he would rather have a potassium level that was too low than treat it and then get a level too high. So all the day before had not only been hurry-up-and-wait, but hurry-up-and-wait-for-nothing. *sigh*
While Dr. Struhl had not been sure what he would find once he opened the shoulder up, he had warned me that if they found infection they would have to remove the prosthesis completely. By now I was sure that was what would happen, so I was not surprised when I woke from anesthesia to discover that was the case. Dr. Struhl had reported to Marc, while waiting for me to wake up, that they had found and cleaned out a bunch of “grey slime”, removed the prosthesis, and packed my arm with an antibiotic-containing “spacer” material which would hold the area open.
The plan at that point was to begin treating me with IV antibiotics until the cultures grew out which would determine which antibiotics were specific to whichever bug I had. Once again the best-laid plans never quite worked out. Despite numerous cultures taken, pre-operatively in Dr. Struhl’s office and then, during the surgery, of the ‘grey slime’ and surrounding bone and tissues, no bacteria ever grew out. There were innumerable possible sources of infection because of the bladder infection, the pneumonia, the sinus infection as well as my gums and mouth (which are in very poor condition due to multiple root canals, post-root-canal infections, and generally bad mouth care on my part) and both normal and abnormal bacteria from the skin. (Poor mouth care was a particular concern because they had told me after the last surgery that I would need to be especially careful to brush my teeth well, since people with multiple joint replacements were more prone to infection in the joints coming from infection in the gums. I had thought at the time that they had just then pointed that out because they had gotten a good look at my teeth when they were giving me the general anesthesia required because of the abnormal blood work.)
Since I would be going home to an expected 4-6 week course of IV antibiotics, a permanent IV line (called a PICC line, for “peripherally inserted central catheter”) was put in, again under fluoroscopy in order to be sure of it’s position, the day after surgery. A home-care agency nurse would come in once a week to change the dressing on the IV site and provide physical therapy. Finally after a week of “no growth” there was no alternative but to send me home on the combination of various drugs they had been giving me since the operation. Dr. Wise, the specialist in infectious diseases who was assigned to me in the hospital, thought it was probably a staph infection with an uncommon variety of staph. He told me the name, but I can’t remember it (except that it started with an ‘f’ or an ‘h’). He characterized it as “indolent” given the very slow development of the infection to begin with and the lack of growth in the cultures everyone had taken. (Some types of bacteria will not grow in culture at all if, during the course of treatment, an antibiotic had been given, and I had been on Keflex for a month by the time of surgery. The antibiotic does not cure the infection because the bacteria grow a protective coating rather than succumb to the drug, and the coating then prevents any culture growth.)
Home-care came to the house the same day I was released from the hospital, and Gary and Marc learned how to give the IV drugs. Everyone involved was concerned that we all do the safest thing, so the antibiotics ended up being 7-8 weeks. Then we had to wait for 4-6 weeks to make sure no infection re-occurred. They kept in the PICC line in case there was any problem during that time. PT was almost a joke because there is very little you can do with one bad hip and no right shoulder. The missing shoulder was the one I would normally use to support my bad hip with a crutch. I learned to eat and do things left-handed, and I read a lot. Oddly though, by the time I was through with the treatment for the infection, I had developed more range of motion with no shoulder than I had had after the replacement was first put in.
December 27, 2002 I went back to the hospital for an uneventful replacement of the right shoulder prosthesis, and came home after one day for the final, probably unnecessary extra week of IV antibiotics. The home-care nurse removed the PICC line, and Gary nearly fainted when he learned that the catheter had gone into the vein in my upper arm, across my chest and into to the right atrium of my heart. (And he nearly faints again each time he learns that again.)
Lately (as I write it is 4-3-03 -- the day we had planned to finally get my left hip replaced) I have realized that I must have been feeling very bad for those weeks of infection because I feel so good now, and have not felt this good for a long time. There are times when I just can’t get over how good I feel. In retrospect, it is even possible that the pneumonia, sinus infection and bladder infection came from my arm and not the other way around. My first post-op (after the removal of the prosthesis) visit to Dr. Struhl, he asked if/how I was feeling better and I explained that I had been feeling sort of generically ill for a long time and that feeling was gone. PT is going very well and I have full passive range of motion and almost full active. Dr. Dayan, when he learned that I would not be able to have his surgery for several months, had suggested a steroid injection in my hip to help alleviate some of the pain. I had that done a couple of months ago and it has made a marked improvement. (It turned out that a lot of that pain was a bursitis caused by the arthritis.) I’m able to get around with crutches again and to get to the computer (and my computer games), and I’m even doing a zine again!
As I said earlier, I expect to be able to get the hip surgery re-scheduled in the next three weeks. It turns out that the delay is fortuitous for me too, because once again during pre-op clearance we discovered significant fluid retention. While Dr. Hegazi was not going to hold my pre-op clearance for it to resolve, he had talked to Dr. Dayan about possibly admitting me the evening before surgery again, in order to give me IV lasix to get rid of it. Now there is time for the oral medications to work. I’m wondering if it is possible to have psychogenic pre-op edema. My default position is to blame anything that happens to me on “my head”, as in maybe it’s all in your head. Maybe if I get hit in the head with that often enough I’ll finally begin to learn/believe maybe it’s NOT all in my head. :)
Some members of BWA include lists of the books they have read between disties, so I thought I would do something along those lines. The following is the list of books I read during the 6-7 weeks of IV antibiotics, when I couldn’t do anything but read or watch TV. Marc typed it in for me while we waited to see if the infection would re-appear.
THE EAGLE OF THE NINTH--Rosemary Sutcliff
THE SILVER CROWN--Robert C. O'Brien
THE MONK WHO VANISHED--Peter Tremayne
FIRE AND HEMLOCK--Diana Wynne Jones
THE MAGICIANS OF CAPRONA--Diana Wynne Jones
THE TIME OF THE GHOST--Diana Wynne Jones
THE HOMEWARD BOUNDERS--Diana Wynne Jones
CAT-A-LYST--Alan Dean Foster
MID-FLINX--Alan Dean Foster
PHYLOGENESIS--Alan Dean Foster
INTERLOPERS--Alan Dean Foster
REUNION--Alan Dean Foster
THE TAR-AIYM KRANG--Alan Dean Foster
CYBER WAY--Alan Dean Foster
WELL OF DARKNESS--Margaret Weiss & Tracy Hickman
GUARDIANS OF THE LOST--Margaret Weiss & Tracy Hickman
THE OUTLAWS OF SHERWOOD--Robin McKinley
ROSE DAUGHTER--Robin McKinley
[THE CIRCLE OPENS 1] MAGIC STEPS--Tamora Pierce
[THE CIRCLE OPENS 2] STREET MAGIC--Tamora Pierce
A HIDDEN MAGIC--Vivian Vande Velde
ACORNA'S PEOPLE--Anne McCaffrey & Elizabeth Anne Scarborough
ACORNA'S SEARCH--Anne McCaffrey & Elizabeth Anne Scarborough
TO RIDE PEGASUS--Anne McCaffrey
PEGASUS IN FLIGHT--Anne McCaffrey
PEGASUS IN SPACE--Anne McCaffrey
THE QUEEN OF ATTOILA--Megan Whalen Turner
THE THIEF--Megan Whalen Turner
GRAVITY DREAMS--L.E. Modesitt, Jr.
THE PARAFAITH WAR--L.E. Modesitt, Jr.
STAR OF GYPSIES--Robert Silverberg
HOT SKY AT MIDNIGHT--Robert Silverberg
AT WINTER'S END--Robert Silverberg
AN OLD FRIEND OF THE FAMILY--Fred Saberhagen
STEALING THE ELF-KING'S ROSES--Diane Duane
BRIGHTNESS FALLS FROM THE AIR--James Tiptree Jr.
GIDEON'S TRUMPET--Anthony Lewis
LIFE AMONG THE ASTEROIDS--Jerry Pournelle & John F. Carr, eds.
MAIRELON THE MAGICIAN--Patricia C. Wrede
A note on the title: As before, the concurrence of the APA NYU annish collation and the next BWA collation, as well as the (hopefully) interest from people in both apas seemed too good to pass up. Therefore I have combined the titles for the occasion. Mailing comments will not be included in the APA NYU zine.
This has been Hard Water... Becoming...
for BWA, APA NYU and Friends
from Donna Camp
1088 East 40th St.
Brooklyn NY, 11210
home page: nycadre.home.acedsl.com