I have been at the height of frustration, anger and depression for more than a month. I have had a faulty PEG tube that needed to be removed due to leakage and I had to keep putting off its removal over roughly an eighteen-month period. My gastroenterologist and I made the determination that the leaky and clogged tube needed to come out. Not only could I no longer use it if I ever arrived tothe point where I could no longer swallow, but the site wasleaking t
A PEG tube [Percutaneous Endoscopic Gastrostomy] is urged by doctors for ALS patients to get early in the disease. Risks from anesthesia increase as the disease progresses, and especially as respiration deteriorates. Eventually, an ALS patient has problems swallowing and the PEG is often placed earlier rather than later as a precaution, whether or not it is needed at that time. The patient can eat by mouth even when the tube is there. In my case, I had a tube placed in 2005, a year after diagnosis. At the time, I was totally able to eat by mouth. But it was suggested to me by the ALS clinic, that it was a good idea for me to tube-feed as a way to conserve energy. So I put cans of formula in my tube, only to find that the whole pleasure of eating was missing from my life. Furthermore, the more I became knowledgeable about nutrition, the more uncomfortable I felt about a substance that was full of chemicals, and over which I had no control. Yes, it uses up energy to eat solid food -- using utensils, chewing, swallowing, etc. -- but I made that choice. At that point also, my disease seemed to be progressing so rapidly that I wasn't ready to give up food before I absolutely had to.
My progression slowed down and 2010 rolled around. At that point, the PEG had been in for five years and was getting old and weak. I had changed ALS clinics and they referred me to a different gastroenterologist from the original one. Although I had heard that this PEG could be removed and another one placed in the same opening, the replacement wasn't a success and I was told I would need to go through a second endoscopic procedure. Now, this is IMPORTANT: if a PEG tube falls out, the patient MUST GO to an emergency room IMMEDIATELY [if not sooner] because the hole starts to close up IN A FEW HOURS!! So one morning, the tube that the doctor had replaced for my old tube, fell out as I was getting dressed. This was not a surprise because the gastroenterologist already said he would most likely have to make another hole because the original one was "not good anymore" [whatever that meant]. So, while I was sitting at the edge of my bed looking at my fallen-out tube, I knew in my case, that I wouldn't go to the ER and so I let the hole close up. But I will repeat this: when a tube falls out and you have any intention of having another PEG placed in the same hole, YOU MUST GO TO THE CLOSEST EMERGENCY ROOM IMMEDIATELY because the hole will close up starting in a FEW HOURS and will usually be TOTALLY CLOSED WITHIN A DAY. This previously-stated information is going to figure into my telling below of what is happening to me in the present moment.
Fast-forward to the year 2014. My tube that was placed in a whole new opening via endoscopy in the fall of 2010 [the year the replaced first tube fell out] had been giving me problems for a long time. It was so clogged that water flushes were unsuccessful. Moreover, the skin on my abdomen around the tube [called the "stoma"] was constantly irritated and inflamed by a leakage of stomach acid. And even worse, the stomach acid emanated an odor that no perfume or body spray could cover. And --if that weren't bad enough-- the gauze around the tube was no longer absorbing the ever-increasing amount of acid leaking out of the tube and onto the stoma, was now seeping onto my shirts and tops. Soon, my aides were dividing my tops into two distinct categories -- "house" shirts and "going-out" shirts. As you can imagine, with time, the "going-out" shirts eventually made their way one-by-one to the "house" shirts collection. And after a while, I would have nothing clean and unstained enough to wear for going out. When I went to the annual Wings Over Wall Street fundraiser in October, of 2015], I sent one of my aides [Ellita -- whom I call my "stylist"] to the local Dress Barn, where she managed to pick out a lovely outfit of skirt and top fit for a "dressy after-work attire" function. Needless to say, I came home with a stomach acid leak on the blouse. As I write this, I am wearing an old ALS Walk tee-shirt with no bra. My bras I have reserved for rare times when I leave the apartment for medical appointments in the last few days when I don't want my "girls" to bounce with no support [not a good look]. Yes, my second stoma is high enough to wet and stain my bras.
Fast-forward to Summer of 2014 when I see my gastroenterologist [GI Doctor] and we both agree that this faulty tube has to come out. In the fall of that year, I was hospitalized for a DVT blood clot in my left leg [see my blog entry of December 8, 2014] , followed by six months of having to take a blood thinner called Xeralto. In order to remove the faulty tube, I would need to stop the Xeralto. So, there goes a six-month period where I had bigger fish to fry than this tube site. Then, after going off the Xeralto in the summer of 2015, it was a few months later that I ended up in the hospital again in October, 2015 for a recurrence of a DVT blood clot. [see blog entries for To this day, we don't know if the cardiologist was mistaken when he cleared me in June, 2015 free of blood clots and able to stop taking Xeralto. So when I got out of the hospital, we were coming on the holiday season of 2015 and I knew I needed to stay on Xeralo for several months. Then, at the beginning of 2016, I was laid up in bed for three months with a broken tibia and my faulty tube was once again relegated to a back burner. Now, finally on May 11, thet ube was removed and as of a full month later, itis still gushing out food and stomach acid, ruining all my shirts and bras.
Two weeks after the tube was removed and still gushing, one of my aides told me this was all ridiculous, and was getting out of hand. She told me that not only did I reek of a sour odor, but my entire apartment reeked and when she walked in from the outside, it hit her like a lead balloon. We went to the local emergency room of Northwell Health Forest Hills. I texted my friend Nancy and she came to the ER to meet me. There was a really nice [and cute!] doctor there who consulted with another doctor. He concluded that this stoma was never going to close by itself. And this is not something you can just put a few stitches at the top because it goes deep into the gut. A surgeon has to stitch it up from inside; so I freaked out at the thought that I might need surgery! My breathing is bad enough that anesthesia presents a terrible risk.
A desperate email to my GI doc and his PA [Physician's Assistant]. I was panicky. My GI doc said there were less invasive procedures we could try and he gave me an appointment the following week to talk about it. At the appointment he explained that I probably wasn't healing because the stoma [hole] was forming scar tissue and so wasn't closing up the way it should. So we scheduled a procedure that involved putting an abrasive substance inside the hole to open it up again and form new raw skin that could then heal and form scar tissue where it needed to form and close up the stoma. In order to do this, I would have to be off my Xeralto [blood thinner] for four days before the procedure and a few days after. So I went back for the procedure a week later and stopped the Xeralto four days before and stayed off it several days after.
Where am I now? Well, I haven't been out of the house -- except for doctor appointments -- since the tube was removed on May 11. I have been in the apartment with frequent dressing change, no bra because the bras have been badly messed up. I could smell the odor around me so -- along with my bralessness -- I was not really fit to go out. My birthday was June 7, and I was supposed to go out that evening for dinner with my friend Louise and I had to take a raincheck. When my friend Nancy heard that I would be sitting home, she brought me sushi from one of my favorite restaurants. She made an otherwise depressing birthday very festive. Two nights later, Louise brought Asian food over from a very good neighborhood restaurant, and banana pudding from the famous Magnolia Bakery in Manhattan. I have dinner plans with two other friends at the end of the month and wonder if I will have to delay those outings too. I don't know if this latest procedure will work. If it doesn't, I will have the endoscopic procedure to stitch the stoma from inside my stomach. That will have to be scheduled soon because with my winter and spring relegating me to stay cooped up, I refuse to ruin my favorite season of the year -- summer. In the meantime, I am breaking the bank with purchases of 4x4 gauze pads, tape and other supplies for my dressings, which need to be changed a few times a day. Not to mention that all my tee-shirts are forever ruined. along with some nicer shirts. I can't go shopping for new clothing until the hole closes up, either by nature or surgery. Until then, I remain frustrated and angry, with a serious case of cabin fever.
Thursday, June 16, 2016
Tuesday, May 10, 2016
Tibia mostly healed, Physical Therapy, out of bed, foot blister slowing up recovery, sadness and loneiness
Well I am out of bed and I would like to stay out of bed, except for sleep time, that is. I am reading that it takes up to a full year for a tibia to fully heal, but three months to be able to bear weight. After two months, my orthopedist gave me a boot to put on, but I couldn't stand with it. Something was going on with the bottom of my right foot [the side of the fractured tibia], but I didn't know what it was. Well, I was distraught thinking that I still couldn't stand and in the back of my mind I thought maybe I would never be able to stand again.
The next morning, the aide on duty went to clean the bottom of my foot and noticed a blister, right in the spot where the cast ended. So it seems that the rough edge of the cast was apparently rubbing against the skin. I had an appointment already planned that week with my primary doctor and she looked at it, told me to see a podiatrist, and gave me a light antibiotic in case it was infected. The day I finished the antibiotic, I saw the podiatrist who said the blister was not infected despite th pain and there was nothing serious doing under the blister. But it would take a few weeks to heal. He lanced and drained it and I had weekly visits for the next month until it totally healed. Needless to say, I was in bed an additional month.
Finally, I am standing almost as well as I did before the injury but I have home physical therapy to exercise the leg to strengthen the joints around the tibia like the ankle and knee. When you're in bed for more than three months, the muscles atrophy and have to be "woken up" again. All in all, I was lucky that this happened during the cold winter and apart from doctor visits, I didn't have to go outside. Going outside for the doctor was difficult, since my toes were exposed and sticking out of the cast. One time, we missed Access-a-Ride because we were fighting with a too-small elevator coming out of the orthopedist's office. There was no courtesy phone call; she just pulled away right in front of my aide. And when the aide ran after and caught up to her at a red light, she [the driver] refused to come back around or wait. So we walked from 66th and Second Avenue to 60th Street to catch the Q60 MTA bus and my toes froze. Luckily we were near the Q60 that goes from Manhattan to Queens. But then we had to walk/roll from the bus stop to my apartment, toes exposed again.
There's nothing that gets you thinking and reflecting more on your life than being stuck on your back in bed. And there is nothing lonelier. I really found out who my friends were and they were few, but I consider myself lucky. More on that later. I also have certain emotional addictions [more like obsessions] that reared their ugly heads during this time, and I had to pull myself off social media in order to not feed into those addictions. Social media can be very dangerous for me, especially when I can see the wonderful fun other people have and how they are surrounded by loving friends and family. Not that I wasn't lonely in my healthy able-bodied days, but I could get out and do something about it.
Tuesday, April 12, 2016
Month three of broken tibia and blister woes and wheelchair cushion problems
So it's coming in on the home stretch of the three months of recuperation from my tibia fracture. I enter to my two month follow up at the orthopedist and he removed the shorter cast? Which went below the knee. This was an improvement on the first cast, which went well above the knee so imagine my delight when they cut off the second cast and gave me a boot thing aka soft cast -- and told mr I could stand using this new improvement. I couldn't wait to get home and do all the things that the ability to stand, allowed me to do.
That happiness was short-lived, however. I tried to stand and the leg with the broken tibia produced the most blood-curdling yelp when I tried. Something was going on with the bottom of my foot and it wasn't good. Was it something wrong with the bottom of the boot? I had no idea. Not to mention that the good leg wasn't perfect either. You see, after two months of lying in bed, my muscles had atrophied and needed building up again. I realized how important it is for me to have physical therapy. Suddenly, my aide looked at the bottom of my foot and saw a huge cyst-like blister. Oh hell, I thought. Great!! I happened to have an appointment with my internist a few days later and she looked at it and said it seemed infected nd gave me a one-week round of Amoxicillin. She doesn't like to give antibiotics recklessly and for that I love her. So I loaded up on probiotic capsules and drank kombucha to compensate. And I made an appointment with Aadvanced Foot Care, who had solved my plantar fascitis many years ago. The podiatrist determined I didn't have an infection, but a pus-filled blister. He lanced it and told me to put bacitracin on it and see him in a week. It improved but still hurt. I went yesterday again and he said I could try putting my weight on it. So when I came home and had to use the commode, I decided to try. My aide had trepidation, but I did it!! It wasn't great and my leg muscles have atrophied somewhat with three months of bed-rest. I have a prescription for physical therapy to help me build the muscle, and I also found a website with exercises for a post-fractured tibia. I have to decide if I want to go outside for PT or have home PT. I have had both and each has its pros and cons.
Then there is my wheelchair cushion. When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important. An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities]. I recently got a Roho cushion, which has waffle-like compartments filled with air. It has to be regularly inflated to ensure enough comfort. Well, one morning, we found the valve on the floor; it had come off the cushion. A Roho cushion that cannot be inflated is useless. In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable. So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion. I thought about buying a standby extra cushion -- $350.00 -- I don't think so. The ALS Association will come to my rescue some time tomorrow with a loaner cushion. Their loan closet has saved me many many times. One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks. A real pain!! Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed. Instead, I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT]. Below is a picture of a Roho cushion. You can see the "waffle" air compartments. It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores. It is great for old folks who might not have a lot of butt padding and compromised back muscles.
Then there is my wheelchair cushion. When you're sitting in a wheelchair upwards of 16 hours a day, a comfortable seat is very important. An uncomfortable cushion is painful and can cause skin breakdown and pressure sores [the bane of all people with disabilities]. I recently got a Roho cushion, which has waffle-like compartments filled with air. It has to be regularly inflated to ensure enough comfort. Well, one morning, we found the valve on the floor; it had come off the cushion. A Roho cushion that cannot be inflated is useless. In almost no time at all, my cushion deflated and of course the wheelchair vendor technician came to my apartment and confirmed that the cushion was not fixable. So I am in the waiting period for the insurance process; this means it could be several weeks before I get a new Roho cushion. I thought about buying a standby extra cushion -- $350.00 -- I don't think so. The ALS Association will come to my rescue some time tomorrow with a loaner cushion. Their loan closet has saved me many many times. One thing I have learned to get used to is a waiting period for any wheelchair repairs or components often exceeding six weeks. A real pain!! Since it's painful to sit in the wheelchair with a deflated cushion, I would still find myself stuck in bed. Instead, I have learned from these three months that it's beneficial for me to have a couple of hours of "bed time" each day for the post-thrombotic period [after deep-vein thrombosis, or DVT]. Below is a picture of a Roho cushion. You can see the "waffle" air compartments. It's considered the "Rolls Royce" of cushions and is not just for wheelchairs; it can help anyone who can benefit from better weight distribution and to prevent pressure sores. It is great for old folks who might not have a lot of butt padding and compromised back muscles.
Thursday, March 17, 2016
CALL TO ACTION!!
TAKE ACTION!
Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!
Call 1-866-220-0044.
Ask for Senator Murray from Washington State's office.
Say:
“Please
cosponsor the Disability Integration Act (S.2427). Because she is the
Ranking Member of the Senate HELP Committee and someone who has
cosponsored previous legislation that addressed Medicaid's
institutional bias, I am hoping she will cosponsor this vital civil
rights legislation.”
BACKGROUND
The proposed legislation says:
"No
public entity or LTSS insurance provider shall deny an individual with
an LTSS disability who is eligible for institutional placement, or
otherwise discriminate against that individual
in the provision of, community-based long-term services and supports
that enable the individual to live in the community and lead an
independent life."
The
legislation would also make it illegal for a state and insurance
providers that pay for LTSS to fail to provide HCBS by using waiting
lists, screening people out, capping services, paying workers
too little for services, or the other excuses which states have used to
keep people from living in freedom.
You can learn more about the legislation here:
The full supporter list is available at:
TAKE ACTION NOW!
Call NOW to urge Senator Murray from Washington State to support the right of all people with disabilities to live in freedom!
Call 1-866-220-0044.
Ask for Senator Murray from Washington State's office.
Tell
them: “Please cosponsor the Disability Integration Act (S.2427).
Because she is the Ranking Member of the Senate HELP Committee and
someone who has cosponsored previous legislation that addressed
Medicaid's institutional bias, I am hoping she will cosponsor this
vital civil rights legislation.”
THANK YOU!
Saturday, February 27, 2016
My Life Mostly in Bed [Cleaner Than it Sounds] With a Broken Tibia
I have now spent my first month mostly flat on my back in bed. Unfortunately, this isn't as fun as it sounds. I am sadly alone while in bed -- what a waste!! But I have to spend at least another month in this position -- and sadly alone. I went for my one-month followup with my orthopedist Dr. Radnay and he is pleased with the way my tibia is healing, but not confident enough to let me go cast-less yet. So I have graduated to a hard cast which stops below the knee; this is a slight improvement on the hard cast I had going past the knee. At least now I can bend my right leg at the knee -- for what it's worth. I still can't get into a shower and wash my hair. Trust me -- dry shampoo doesn't cut it, and for reasons I will elaborate further below, it's not really practical yet for me to go to the salon to get my hair washed.
First, let me state the [seemingly] obvious.I cannot stand or put any weight on my right leg. And to stabilize the break as much as possible, I have to stay in bed as much of the day as I can. This usually means coming out of bed in the morning for a short time for breakfast and medication and then back in bed for the rest of the day, unless I have a visitor or a doctor appointment. I can't go tootling around the neighborhood, especially in cold weather. My right foot is exposed and I don't have a sock big enough to go over the cast. Also, traveling in the wheelchair is damned uncomfortable because, without a shoe, the right foot will not stay on the footrest; so my right foot dangles and I have to tilt back enough so it doesn't drag the pavement. When I tilt back enough, I can't really see where I am going and certainly cannot see what obstacles await me on the ground. So, in the tilted position, I am prone to getting stuck in holes and cracks in the pavement. Another accident is just what I don't need.
I also have to ask for every little thing I need. Thanks to the ALS Association's loan closet, in my second week I borrowed a hospital-style tray table. But if I put my laptop on the table I can't have a beverage close by or I risk spillage on the keyboard. So every time I need a sip of tea, I have to ask the aide, a well as every little thing that isn't already on the table. They don't think I see, but I catch eyes rolling out of the corner of my eye. And the laptop - did you ever try to type on a laptop in bed on a tray table? I can never quite get the head of the bed in a good enough position to comfortably type on the keyboard. And, for the best possible position, my head has to be far back to the top of the bed. I don't have to be reminded that I need to drop weight, but every time I ask the aides to move me up on the bed, I can sense their pain. The most private and intimate tasks I will leave up to your vivid imagination. But tooth-brushing is a mess, and sometimes eating and getting the food completely in my mouth is harder than you can imagine.
Thank goodness for Cindy and Nancy who have been assisting me with organizing and clearing out the clutter in my apartment, especially the cardboard boxes. In case you didn't know, cardboard attracts cockroaches, because they like the taste of the glue that holds the boxes together. I bought storage ottomans to store some of the clutter and one of my aides and I went through some of the drawers to make up donation bags for some stuff and throw out other stuff I couldn't donate. Nancy painstakingly put together the cart fro, the box that was the tibia-breaking culprit. Who needs a man? [although a man would be nice too]. And Cindy helped me with more clutter and gave me homework: I am to go through my file cabinet and bags of papers and put aside what I need shredded. On March 17 [St. Patty's Day], she is coming to collect shreddables and bring them to a friend who has an industrial-style shredder. I actually have a load of stuff more than 7 years old to shred and make room in the filing cabinet
There is a good reason why I have more room in the apartment, and I will give more details next time. Right now it's time for me to go back to my bed where it's difficult to type. Future projects: paint the apartment, get a couple of new appliances, and move some other things around. These things increase my visit-ability, but this is an ironic twist, because as I will extrapolate in future posts, less people have been visiting lately. You win some and you lose some with ALS, although it is easy to lose some and harder to win others. Back to my bed -- unfortunately, alone.
First, let me state the [seemingly] obvious.I cannot stand or put any weight on my right leg. And to stabilize the break as much as possible, I have to stay in bed as much of the day as I can. This usually means coming out of bed in the morning for a short time for breakfast and medication and then back in bed for the rest of the day, unless I have a visitor or a doctor appointment. I can't go tootling around the neighborhood, especially in cold weather. My right foot is exposed and I don't have a sock big enough to go over the cast. Also, traveling in the wheelchair is damned uncomfortable because, without a shoe, the right foot will not stay on the footrest; so my right foot dangles and I have to tilt back enough so it doesn't drag the pavement. When I tilt back enough, I can't really see where I am going and certainly cannot see what obstacles await me on the ground. So, in the tilted position, I am prone to getting stuck in holes and cracks in the pavement. Another accident is just what I don't need.
I also have to ask for every little thing I need. Thanks to the ALS Association's loan closet, in my second week I borrowed a hospital-style tray table. But if I put my laptop on the table I can't have a beverage close by or I risk spillage on the keyboard. So every time I need a sip of tea, I have to ask the aide, a well as every little thing that isn't already on the table. They don't think I see, but I catch eyes rolling out of the corner of my eye. And the laptop - did you ever try to type on a laptop in bed on a tray table? I can never quite get the head of the bed in a good enough position to comfortably type on the keyboard. And, for the best possible position, my head has to be far back to the top of the bed. I don't have to be reminded that I need to drop weight, but every time I ask the aides to move me up on the bed, I can sense their pain. The most private and intimate tasks I will leave up to your vivid imagination. But tooth-brushing is a mess, and sometimes eating and getting the food completely in my mouth is harder than you can imagine.
Thank goodness for Cindy and Nancy who have been assisting me with organizing and clearing out the clutter in my apartment, especially the cardboard boxes. In case you didn't know, cardboard attracts cockroaches, because they like the taste of the glue that holds the boxes together. I bought storage ottomans to store some of the clutter and one of my aides and I went through some of the drawers to make up donation bags for some stuff and throw out other stuff I couldn't donate. Nancy painstakingly put together the cart fro, the box that was the tibia-breaking culprit. Who needs a man? [although a man would be nice too]. And Cindy helped me with more clutter and gave me homework: I am to go through my file cabinet and bags of papers and put aside what I need shredded. On March 17 [St. Patty's Day], she is coming to collect shreddables and bring them to a friend who has an industrial-style shredder. I actually have a load of stuff more than 7 years old to shred and make room in the filing cabinet
There is a good reason why I have more room in the apartment, and I will give more details next time. Right now it's time for me to go back to my bed where it's difficult to type. Future projects: paint the apartment, get a couple of new appliances, and move some other things around. These things increase my visit-ability, but this is an ironic twist, because as I will extrapolate in future posts, less people have been visiting lately. You win some and you lose some with ALS, although it is easy to lose some and harder to win others. Back to my bed -- unfortunately, alone.
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
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.
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.
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