Wednesday, January 27, 2016

2016 Started With a Bang -- to My Tibia , Cast Over My Knee, Bed Bound-- Forced to Sit Still for Three Months





It started with a box that came from Target.  It contained a 3-tier metal trolley that I could load things on, things that have been sitting on top of my dresser and causing ugly clutter; things like creams and cosmetics and nutritional supplements.  But I couldn’t find anyone willing and/or able to put the trolley together.  My building porter agreed, and I planned to give him an extra $20 to do so.  But then Juan was promoted to building super and found out what a busy job that was, and just didn’t have the time to do it.  So, in the meantime, my aide Cheryl found a cheap plastic trolley for $10, which I used for my BiPaP ventilator and there wasn’t any room for anything else.  So I would still find use for the Target trolley, but decided I would return it.  But when I checked the website for the receipt, I learned that the trolley was an “unreturnable item”.
So the box sat on the floor, where it still sits now.  And I went to get something off the top of the cluttered dresser and didn’t realize how fast the wheelchair was going and banged my foot on the box.  My knee bent and I heard what I thought was a crunch, but figured I just twisted my ankle and it would get better.

On Saturday January 16, I had some pain when I did my usual “stand and transfer”  but I assumed it would get better and it seemed to.  By Saturday night my aide was using a “u-sling” for transfers because it doesn’t require me to stand.  My leg was so painful I couldn’t sleep that night.  Because I am taking the blood-thinner Xeralto, I cannot take any NSAIDS [like Advil, Aleve, aspirin or Motrin], so that leaves Tylenol, of which two extra-strength caplets barely took the edge off.

By Sunday afternoon, I knew I had to go to the local ER [North Shore/Long Island Jewish Hospital in Forest Hills] about six blocks away from my apartment.  But I couldn’t drive there myself because I had to tilt the wheelchair back to raise the painful leg, and that’s not a good driving position.  So we called one of the volunteer ambulance corps and they referred me to another team because they thought I was going to Cornell.http://nyp.org/facilities/weillcornell.html  The second team brought me to the basement and we waited for one of the EMTs to come around with the ambulance.  Two hours later, after the ambulance wouldn’t start, we were ready to go six blocks.  We made the initial call at 2:00pm and reached the ER door at 4:30pm.  I was done by 6:30.  I had x-rays and the doctor [Dr. Rachel Morris, who was wonderful] told me I “broke a bone in the foot” and gave me the option of staying there overnight to be seen by an orthopedist the next day, or go home with painkillers and see an orthopedist of my own choosing.  Now I knew that the next day was Martin Luther King Day and there was no way I was going to be seen at that hospital by any kind of decent specialist on MLK Day.  I chose to take the painkillers and go home and call my doctor at Cornell on Tuesday morning.

My friend Debbie Wolfe called my primary care doctor -- Dr. Susana Morales -- at Cornell and I was referred to Dr. Craig Radnay,  an orthopedic surgeon on East 66th Street that Thursday.  Dr. Radnay’s office took their own set of x-rays and they showed I broke my TIBIA [pictured above]!!  As it is risky for an ALS patient to go under general anesthesia, he wants to see if the bone will heal without surgery.  So I have a hard cast up to just past my knee.  I am to be in bed as much as possible, and keep transfers with the lift to a minimum.  So here I write this with my limited time out of bed at my laptop.  I spend about half of my waking time in bed.  Those who know me, know that’s not my style.  I am learning how to watch TV on my mobile devices.  Truth be told, I am most comfortable in my bed covered by my warm comforter and with my legs elevated.  

I am scheduled to see Dr. Radnay again on February 11, and I am hoping and praying that the  bone is healing with the cast, which I am predicted to wear for three months. I am also in less pain while in bed.  Starting today, I reduced myself to ½ Oxycodone every 4-5 hours.  Oxycodone makes me very sleepy and one of it’s fun side effects is constipation.  So I will give regular updates; in the meantime, please keep me in your thoughts and prayers for a quick recovery without the need for surgery.

By the way, Chelsea is staying in a wonderful home while I am recuperating….More on that next time.  But so far, she has met a bunny couple and a very inquisitive cockatiel…….pics next time too.

Sunday, January 10, 2016

Checking Back In -- Autumn Brings DVT Blood Clot Again [or still?], Weill-Cornell Stay and "Dr. Jeopardy"

I checked out for a while -- I needed to.  I was mourning the loss of a Dad as I knew him, dealt with another DVT [deep vein thrombosis] and also absorbing some deep criticism of me and the blog, the importance [or not] of honesty, and the sudden appearance of new angels and great "random acts of kindness" which took me out of a rock-bottom feeling that I was beyond unloved [hated in some cases] and I had to look at myself and my motivations and not just wave off some hurtful truths with an arrogant "it's her/his shit, not mine".  

Someone who plays a very big part in my life said this blog was nothing but an angry rant at everybody who had ever done me wrong.  Maybe it is, at times, but only to try to inform others about life as a person who was living  very actively and now finds herself with limited independence.  Dealing with this disability for almost 12 years, I fall into a sort of complacency at the way things have turned out. We, as people with disabilities, are the last marginalized group to suffer discrimination, and have to fight for justice and equality.  If anyone thinks I have no right to get angry when I encounter humiliations and bad treatment, let them live one day in my wheelchair and try to get to an appointment and depend on Access-a-Ride; see how people treat them out in the world, and how much they cannot do and places they cannot go;  even after 25 years of the Americans with Disabilities Act, there is still so much to be done.

In late September I went for a followup with my local cardiologist and this was a very timely appointment.  My left leg, where I had the blood clot in November, 2014, was still swollen.  He had told me in June when I went for my six-month appointment that the clot was gone and I could go off the blood thinner [Xeralto].  This was a big relief because using blood-thinners causes me to bruise more easily, and a simple knock or bang could cause a serious bruise and even internal bleeding.  So I was relieved.

So by the time my late-September followup appointment came around, I was concerned because my left leg was swollen again and red and shiny; these are all symptoms of a clot.  So I asked the cardiologist to check it out.  He seemed reluctant but -- with five minutes to go before my scheduled Access-a-Ride pickup, he got the technician to do a sonogram in the hallway.  Yes -- you guessed it -- his exam rooms are tiny and I am out in the hallway.  As a matter of fact, my EKG had to be done earlier with my shirt up to my neck and my bare back in the hallway -- bra strap and all. Anyway, the sonogram seemed to indicate that the clot was gone. My vehicle was outside so I ran out and quickly asked the doctor why he thought my leg was so swollen, and he shrugged his shoulders.  About 10 days later, one of my aides begged me to go to the local [N. Shore/LIJ] ER and I told her I had an appointment with my Primary Doc at Cornell in 4 days and I would have her look at the leg.  By now the leg was redder, shinier and even more swollen. I asked my Primary doc Dr. M to look at it, and I mentioned that the cardiologist had said there was no clot.  When she lifted up my pants leg, she was concerned and said "It's probably just a 'post-thrombotic syndrome' but just to ease our minds, let's send you for another sonogram."

When my aide and I glanced at the screen while the tech was passing the wand over my leg, and saw a huge white area, we both looked at each other like "this can't be good".  When the tech was gone for what seemed like an eternity and came back into the exam room with the radiologist, I knew something was up, but I said "Access-a-Ride is coming in five minutes, so we have to make this fast."  Ha ha ha!! He told me I would not need transportation because I wasn't going home so fast-- at least not today.  We were escorted to the Weill-Cornell [NY Presbyterian Hospital] ER where I got a little private room in the corner and watched TV until I got into a semi-private room upstairs at about midnight. I really thought the nursing care was very good at North Shore/LIJ [Long Island Jewish] in Forest Hills] last year but compared to the care at Cornell, NSLIJ was Motel 6 and Cornell was the Hilton.  Since my roommate was prepping for a colonoscopy and running between bed and bathroom all night, [and past my bed] I sat up and watched TV literally all night until a respiratory therapist brought me a bi-pap vent at 4am, without which I can never sleep, especially with the lights on.  

They had originally promised I could go home early the next morning, but of course that was a big joke.  The night before in my private room in the ER, a young resident came in to check on me, and I said "please don't disturb me during Jeopardy" so he kept coming in periodically and throwing trivia questions at me all night.  The next morning "Dr. Jeopardy" was on duty upstairs on 5North and kept coming by and throwing trivia at me, and I threw questions at him.  I stumped him with "name 8 countries with 4 letters"[can YOU?]..and we had a lot of fun.  Anyway, Cornell's idea of "early in the morning" was 6:00 that evening.  I have to say the food was restaurant quality and I'm not kidding.  I ate till I was busting and still had food left over.  I had pancakes and turkey sausage for breakfast [that was only part of it] and my favorite -- salmon-- for lunch and even the broccoli and potatoes were perfectly seasoned!  I thought the food at NSLIJ was good but this was delicious.  And in case you question my culinary judgement, anyone who knows me, knows I am a foodie, so I know good food.  

Cornell did something NSLIJ didn't -- they gave me an injection to disperse the clot.  The bad news -- I am going to be on Xeralto permanently.  Now, Xeralto [along with Eliquis and a few others] is part of a new generation of blood-thinners.  The old generation [Coumadin, Heperin etc]  require weekly blood testing and dietary restrictions cutting out vitamin-K foods, such as spinach, kale and Brussels sprouts [all dark leafy and healthy greens that I love].  The new generation of blood-thinners does not require frequent blood testing nor dietary restrictions.  Another reason I am happy to be living in these modern times.