Symposium

Ever since I joined the Corneal Dystrophy Association, I receive an invitation to their annual Symposium, held  this year in Milwaukee.  Noted ophthalmologists from all over, the country and the world, as well as those afflicted, gather to share knowledge and  research of what is considered a rare disease.  The good news is that this disease has a cure and the process of  the cure is constantly improving, with less and less invasive procedures.  The bad news is that since the disease/ disorder is relatively rare that it is not a payoff for most doctors to invest time and finances into learning the skills necessary to treat it.  So those whose symptoms have accelerated into the need for treatment willingly travel to the comparatively few experts who have practices, notably in Indiana, Oregon,  Florida, Texas and Maryland.  I know of one area ophthalmologist who performs the surgery, and have heard of only one person I know who has had the surgery with him.  She was happy with her results, but the Association website has other members who regret having gone with him.  So if the Fickle Fuchs' ever intrudes significantly into my life, I'll be off to Baltimore for treatment.  Years ago, corneal dystrophy used to be a leading cause of blindness, but as is said, there is now a cure.   For a person  diagnosed, each of that person's children has a 50% chance of inheriting the disease.  Though the disease typically does not show up intil later in life, that is not always the case.  Upstate NY and even the Boston area are notably lagging in knowledge and treatment of the condition, primarily because their practices are devoted to more common and profitable treatments, like laser treatments, which, btw, are very important to avoid if a person has corneal dystrophy.  (But who ever listens to an old person?)

More Medics

     Not the knee this time, but regularly scheduled maintenance on the eyes.  There are  11 eye care professionals at the Ophthalmic Consultants, and I have had appointments with at least 9 of them over the years, plus 2 who have left to set up their own practice, and 2 others who are deceased.  I have been a patient at that practice since it was run by Dr. McCarthy, and that was a long time ago.  I remember that he was a Princeton graduate who rode in a parade with then student Brooke Shields, and that he used to parachute out of airplanes, until he crash landed and messed himself up pretty badly.
     My brother and sister wore eyeglasses since childhood, and while I didn't need corrective lenses until I was in my forties, that doesn't mean my eyes are problem free.  Cataract surgery is pretty much considered an inevitable part of aging, so the need for that didn't come as any great surprise.  But the examinations for that revealed a congenital eye disease that I was completely unaware of.  (It is heredity, so younger relatives should be aware of their risks, but naturally nobody takes that seriously.   I feel  a little like Snowden; he is awaiting September's  solar flares for his justification.)  Additionally, I have had laser surgery for 2 separate retinal tears.  Like applying wallpaper, says the esteemed doctor.  My latest diagnosis, or quasi-diagnosis is as a glaucoma suspect, in danger of what is called normal-tension glaucoma as eye pressure is only 10 and 12, where glaucoma usually has pressure over 20 or so.  Moreover, one of the doctors now tends to prescribe "eye vitamins" to lessen the effects of macular degeneration;  there is no clinical  evidence of that disease, but a lot of older people suffer from it, so taking precautions won't hurt is his philosophy, and he does have a Ph.D., so he should know. 
     The point is that what used to be routine appointments are no longer that exactly; they are follow ups to previous visits that are now problematic in some sense.  I have 3 such appointments in the next week, and none of the news can be really good; the best I can hope for is no further deterioration.  And I'd be the last to know.  At my last visit several months ago, to a new specialist at the practice, he asked how I was doing.  I said fine.  My distance vision is great, and I can read without glasses, all but the smallest print.  "Unfortunately," he said, "that doesn't matter."   I think I'll kill myself.
  

Winding Down, Knee-wise

   I'm finished with Physical Therapy/ Rehab, both 2-week home based and 4 weeks out-patient.  Everything went well, my progress is very good.  I've had 2 visits with the P.A. one at 13 days, and the last at 6 1/2 weeks.  Everything is fine, including the X-rays, and I will see the orthopedic surgeon in 3 months. 
  It's hard to remember when I knew I had a real knee problem. I tend to trace it back about 6 years when I heard a clunk when I was walking down the long entry to a school, and at first thought I must have a stone caught in my boot.  But there were a few warning signs considerably before that time; in 1976, I had a cortisone shot courtesy of the late Dr. Paish.  Nothing showed up then, and I had no more issues until my knee inexplicably swelled shortly before a planned trip to Disneyworld, and an orthopedist drained fluid from the knee, and issued a brace (which I didn't wear.) Again, X-rays showed no damage.  Ahh youth!  I can remember hurting my knee a few times, really painfully, once in an auto accident, once ice skating and another time tobogganing. But once the injury went away, all was forgotten.
     So the real problem sneaked up on me, and on Dorothy also.  I remember sympathizing with her about two-footing down stairs; she'd had arthroscopic surgery before my knee became a real problem.  Not too many years ago, I used to tutor at a school in Troy, for 3 different grade levels. The school had 3 levels, and my tutoring had me go up, down, then back up and down.  I remember getting winded, but had no specific knee problem.  Later, I remember letting students pass me on the stairs, so I could take my time, and still later I would wait until no one was in sight so I could "watch my step."  You know what this means, the dreaded old-lady two-footing each step.  Once in a while, I would have to climb stairs with a guidance counselor or teacher, and I would suck it up, and walk like a normal person, though I knew later, there would be pain.  Finally, I cried uncle and gave up any effort at normalcy, but it was such a gradual process I can't remember how long ago that was. 
  So now I no longer have knee pain.  It seems funny, but it seemed like they both ached, and maybe they did, but after surgery on the more severely afflicted, the other knee is pain-free.  I completed all the therapy with flying colors, but there is one issue that remains, and that is those infernal stairs.  I can ascend stairs like a normal person, but for some reason, I can't bring myself to step down with my "good" leg.  I can't even remember how that leg worked before the surgery, and nothing happened to it, but I am blocked from using it to step down.  The exercises are supposed to strengthen your quads, but it seems they are targeted to the operated leg, not the untouched one.  If I'd kept a record of how I walked before, I guess I might understand, but that's spilt milk.  There must be a lot of truth to the statement that you lose what you don't use.  So here I am, practicing how to walk down stairs like an adult.  Oh, the horror!

Karma in Retrospect

    I had a medical appointment this past Monday scheduled for 11:30.  The doctor walked into the room at exactly 12:30.  When I'd checked to see if  I was forgotten, the staff explained that "He is running a little late."  I was on the verge of being irritated enough to say I would reschedule, but then I remembered:   at my last visit with this doctor, he was concerned about my  scheduled surgery, and that perhaps it should be postponed. He made 3 telephone calls to the surgeon's offices while I was there, and waited each time until he received the information he was looking for.  I don't know if a patient had to wait during this time, but I felt I should extend  the benefit of the doubt.  ***I did  just read online that a patient was very indignant after waiting 3 hours at the Troy Eye Docs only to find that the doctors had all left, forgetting this patient.  So you gotta ask!

Collateral Compliments

In addition to my knee, the internal components anyway, I'm also racking up compliments on my sneakers, the first pair I've bought in at least 15 years.  I didn't think they were anything special----Nike Flex, bought at JCP's.   All physical therapists and Orthopedic Physician's Assistants admire them.  They are quite colorful, gray with turquoise on a white sole, a few discrete touches of chartreuse lettering, and the Nike Swoosh in rose pink.  Huzzah!

More on the Knee

    Today was my 6 week post surgical follow-up visit, a little late because of the holiday. I saw the P.A., Rich, who is very friendly and at the same time professional.  He ordered 3 X-Rays, and asked me if I wanted to view them, which of course I did. He explained each of the views, describing what had been done, and what and where all the titanium, chromium, and plastic pieces are.  Everything  looks great, I'm told.
   Today's  appointment was with him, the P.A., but he  asked me not to leave until Dr. C. stopped in. Though I'm not scheduled to see the surgeon for another 3 months, Rich said that it's Dr. C.'s preference to visit with his patients before that time, so we won't feel abandoned.  So he dropped in, all upbeat and positive, which I thought was a nice touch.  (I must say, he is kind of adorable.)






  

Never ceasing to amaze-----

  ----- No, not me, just my knee. Had return visit with Dr.G. today, last saw him  the day before TKR, when he'd called the surgeon questioning the wisdom of going through with the operation because of potential for infection.  His concerns were put to rest by the surgeon, who was no doubt by then in slice and cut mode.  Anyway, at today's visit,  Dr. G. was "Surprised as hell"  that I had no walker or cane.  He wanted to verify that I'd had a total knee replacement, and asked to see the scar.  He advised me to keep up the rehab.  I do, on my vintage 1980's Sears exercycle, rescued from the cellar where it's rested for many years.   I'm the daft lady pedaling away in  front of the house.

Talkin' It Over

"Have you always been so quick to make decisions?"  asked one of the intake nurses when she learned that I'd scheduled surgery at my initial visit to the orthopedist.  I can't remember just how I answered her question because in truth I can't remember making very many decisions, at least any that anyone would ask about.  At that first visit, the orthopedist did suggest, after he related his findings and the available options, that I go home and talk it over before making a decision.  I couldn't think of who I might discuss what with, so I said I'd forego that, and just schedule surgery, which I did.  I'm fresh out of discussions, discussors, and discussees for that matter. 

Cry in the Night

"Can you tell me what time it is?" I heard her ask from the curtained-off part of the room, where we were invisible to each other.  "It's 4 A.M.," I answered.  She thanked me.  It occurred to me, one aged person to another, to add some innocuous comment, about how that was the time we used to be arriving home, but I  didn't say anything else.  I didn't want to add to her distress or make the  presumption that she would care to relate to me.  She was born June 13, 1920, and her name was Katherine.  She was regularly visited by her involved and caring family, and it was obvious that she'd lived a full and adventurous life, far more interesting than  mine.  I didn't want to burden her with the obligation to respond to an anonymous voice who happened to share her room.  The nurses were invariably courteous and considerate of her needs, which at the time were substantial, her having had surgery after a fall at her home.  The last words I heard her say on the morning I was discharged were "Somebody please help me."  When I looked, she was sitting slumped over and appeared to be almost asleep.  The nurses arrived to help her, but I don't think that's what she meant.
 

The Cutting Edge

     What is it about surgeons that they tend to be either loved or hated?  I belong to a site, vision related, which deals with a specific eye disorder whose only cure is surgery. The people who sponsor the site are of the learned and erudite sort;  the eye disease is quite rare , and only those who pursue a solution to their symptoms are eventually diagnosed, a process which is costly, time-consuming, and not for the faint of heart.  The contributors to the site are in various stages of finding a solution to their eye disorder.  Although many will require surgery, the path to surgery can be distant, or in some cases, unnecessary. There is only a relative handful of qualified surgeons, and fewer still  who are top-rated. Those patients who have had successful transplants at the hands of these select surgeons sing their praises to the heights, lauding every aspect from surgical skills to compassion and caring.  But there are some posters who maintain the opposite about these same doctors; they found them to be dismissive, unconcerned, and downright rude. 
     How can there be such a wide disparity of views about medical care from the same doctor?  Bear in mind that the doctor is a SURGEON, not your ordinary doctor.  If a surgeon determines that you are a candidate for surgery, he will be there for you, ready and willing to share his expertise with you.  If, however, he thinks you are not a candidate for his type of surgery, either because it's too early in your condition, or for some other reason,  he has no interest in  discussing anything with you.  He is out the door, ready to put his skills to use on somebody his surgery will help.  Rude, dismissive, yes, especially considering the price you pay, but he does not want to spend his time talking; he wants to perform surgery.
   A nurse recently told me of a patient who had been scolded by an orthopedic surgeon for asking about advice on medication, saying don't ask him about that.  I personally was told by a urologist that he does not diagnose, that he does surgery.  I guess he prefers to work from the referrals of other doctors.  Out of all the young people I've been in contact with over the years, a few have indicated they wanted to become doctors, and several indeed have done so.  I don't know of any young person who has expressed an interest in becoming a surgeon.  I wish I did, though; it would be interesting to see how surgeons evolve. 

Irony, coincidence, or just plain Fate.....

   How does it happen that only professionals ask personal questions?

Now What?

  I am finished with all the Rehabilitation sessions that were prescribed, 2 weeks of home visits and 4 weeks of out-patient therapy.  My 6 week re-check with the P.A. has been delayed a week because of the holiday: on July 10 I will return to him for the second time.  I'm not sure why because on my first visit to him, which was 13 days post-surgery, he said all was well and he cleared me to drive.  He did say it would be a good idea to practice in a parking lot to get the feel for it, but I live in Valley Falls, which pretty much is a parking lot. 
    The only concern I mentioned to him  was  what I perceived as a discrepancy which I attributed to my now straight right leg.  Which, BTW, brings me to "How could they!"   Just before I went in for surgery, I had pictures taken of my legs:  sitting down where they appeared perfectly straight, and then standing.  I knew my legs were pretty crooked when I was standing up, to the degree that I would no longer consider wearing a skirt or a pair of shorts.  I'd disposed of any pants I owned that had stripes or any vertical seaming because of the distortion, and I tried to avoid looking at or thinking of it.  Not until just the other day did I feel I could look at the pictures taken pre-surgery, which brings me to, "How could they!"  How could my family and those close to me have allowed me to walk around with such a marked deformity without insisting or at least  encouraging me to do something about it?  To my recollection, only one person repeatedly and persistently said I should seek some kind of help, and that was partly because it made him shudder to watch me walk.  I guess there is such a thing as self-denial and just plain denial. 
     So now I will have a return visit to the P.A. who on the previous visit said my issue with the discrepancy in leg length was a natural after-effect of surgery and should work itself out, so we'll see if he's reconsidered that issue. 
     Though no appointment with the surgeon has been set up, I think I'm supposed to see him at some time in the future.  My first, and only, visit with him was last February. Originally the surgery was set for March, but I delayed it until May because I had been asked to tutor a senior who needed to write a term paper in order to graduate.  I'm happy to say he did get the paper written and was able to graduate. Yay.
     I'm having flashbacks to that long-ago visit to the orthopedist last February.  I know he used the term, "bilateral total knee replacement," (as did the first orthopedist I'd consulted 6 years earlier.)  I'm remembering he said he would do the right knee FIRST, because he wanted to straighten the leg.  I recall his saying that although full recovery from a TKR takes up to  a year, it is not necessary to wait that long to have the other knee done.  When I saw him briefly in the hospital after surgery and he asked how I felt, I said I thought my right leg now felt longer than my left, his immediate reply was "Fix the other knee." (Maybe he wasn't joking?)
     So here I sit, sleepless and wondering.  I think I'm doing pretty well as is, and am not anxious to alter my situation.  I have a wedding to go to, and then a new baby to see.  Even though TKR #1 went more smoothly and quickly than I'd expected, I can't assume the same for a repeat procedure.  On the other hand, I don't want to risk jeopardizing my gains by keeping the status quo if doing nothing more could have harmful effects.  
    Dr. C. ended the office visit by saying I would be really mad at him at my next visit to his office, because of all the rigors of rehab he'd prescribed.  While that hasn't happened, I'm not so sure about what lies in store for the future.  Who ever knows anyway.

How are you?

  You know how when you're asked this question, you just answer that you're fine, assuming it's a social phrase and not a query as to your actual state of health.  And you usually reciprocate the civility by turning the question back on the asker.  But how do you answer when the question is asked by a doctor entering the examination room: do you say fine or do you detail your health report?  I  think I usually choose the first option, but I'm not always sure because I tend to suffer from a type of physician's office amnesia: blacking out whole sections of say a physical exam.  Did the doctor look in my ears, or my throat, or palpate my abdomen?  Can't prove it by me---I lull  myself into  a trance-like state; in my mind I'm not really there.  That could be why physical therapy rehab was so uneventful; pain recedes if you're not present for it.  Mostly, I say I'm fine and wait for the doctor to ask more specific questions.  I figure the less said the better.
     But one time, when the doctor asked how I was as she entered the room, after I said I was fine, I asked the doctor how she was.  She answered that she was not doing so well, as she had had a very stressful day up to that point, was very worn out, and was glad to have had the little break that she considered my appointment to be.  I can't recall how I responded, but  am sure I was sympathetic, and maybe even expressed appreciation for her efforts and dedication.  I can only imagine how difficult it is to be a doctor who specializes in breast surgery.
   

P.T.Fini

    Today, July 2, was the final day of my Outpatient Rehabilitation Physical Therapy.  I had 12 sessions of post-surgical PT which started on June 5, after 2 weeks of home based PT which started May 28, on my 3rd day home from the hospital.  The home-based services are acknowledged to be not of a high stress level; they include a lot of education and instruction, and some gentle exercises.  The home visitors  warned  that the Outpatient Services are rigorous, and may bring me to tears. Even the woman who motivated me to seek out the surgeon advised me to avoid Outpatient PT in favor of home-based, saying Outpatient was brutal.   I knew I wouldn't cry; I may have cried  reading "Old Yeller" or "Black Beauty"  (poor Ginger), but that was not in public.  No PDA's for me. 
     Anyway, I didn't find the Rehabilitation difficult at all. At first, I entered a room, with individual cots partitioned off.  That was the place for preliminary exercises and those sessions often included moist heat packs to loosen muscles, very enjoyable, and helped with the leg lifts and stretching and other simple exercises. That didn't last for long, however; the majority of the sessions took place in 2 separate rooms.  I referred to one room  as the Toy Room, because it held all the props: steps, bars, balloon type things, stairs, ankle weights, elastic bands.  All these objects, and more, were aids in  balance exercises (which I stank at), lunges, stretches, sidestepping, and a host of  other devices intended to make you feel as if you belong back in the normal world. None of these exercises were painful in any way, though some were surprisingly tiring.
     The second room, the Machine Room, was my favorite.  There are about 20 pieces of major equipment in the room, a few  duplicates, and I worked out on 6 or so different exercise machines.  For some reason, my favorite was the leg press, even after the weight was increased to 45 pounds. That seemed like a lot, until I noticed the weight on the bottom of the stack was 280 lbs.  That must be some rehabilitation. I usually started or finished the session on the Exercycle, another favorite, even though I found that riding for 10 minutes  got me to just a mile and a half, and only burned 40 calories. That of course was at my speed and resistance.  Oh well, this wasn't intended to be a weight loss venture.  (BTW, part of the reason surgery with Dr. C. appealed to me was that he said my weight was not a factor in my arthritic knees or would be problematic post surgery.)
    Some of the Rehab was tiring, but nothing really painful or even uncomfortable-----except for the what my therapist referred to as "The Zone of Discomfort!"   I call that term the Euphemism of the Century.  The only exercise that I didn't control myself was the one that measured leg extension and degree of  flexion..  This measure involved lying on my back while the therapist assesses how far your knee will bend.  That can be painful.  I didn't mind the strain on the muscles or ligaments, but the pressure on the kneecap was considerable. I could picture a flying patella.  My final measurement was 0 to 124 degrees.  She said 90 degrees was acceptable, that it allows you to do most daily activities, but since mine was 105 degrees when I got there, she felt I could go a little further. She thinks I'm at my present limit because the  skin at my knee is unable to  stretch any further.  I agree--the kneecap could fly right off.
  Sandie, the PT, said Dr. C. is building a real reputation  as a surgeon, and is doing many surgeries, 6 hip and knees at Samaritan just the other day. Even so, she said I was her star patient, that in my case, everything just came together to give a near-perfect result. I know I didn't really have anything to do with it, but I'm glad it worked out that way. 
   Next Post---Now What?