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Complications after complications

CruckerCrucker Moderator Posts: 73 Moderator
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What follows is a personal narrative/blog of two hellish months of health problems and what I learned from this ordeal. If you want to talk about it, I'm here to talk. Allen Rucker

A cautionary tale

Posted by Allen Rucker in Life After Paralysis on February 08, 2020 # Health

For one brief moment in the not-too-distant past – one bright, shining moment – I was convinced that I had this paralysis thing figured out. The paralysis itself was here to stay, of course, but I thought I had wrestled to the ground all the nasty ramifications of this scourge. I was just wrapping up an interminable regimen of wound care treatments and would soon be wound free. I had the right low air lost mattress to sleep on, no UTI’s or nasty spills or chronic shoulder pain or prolonged spasms in ages, and all those late-night dashes to the ER were a hazy memory. All I had to do now was minimal routine maintenance -- i.e., don’t get tipsy, fall over, and break my neck -- and I’d be flying.

This was magical thinking. I had lulled myself, if even for just a moment, into a dangerous state of complacency.

Soon a new wound appeared on the outside of my small right toe, which was irritating, for sure, but nothing to fret over. Nineteen more trips to the wound doctor would take care of that. Then one Tuesday, a virulent new infection invaded the toe, seemingly out of the blue, and within hours I was back in surgery, this time to amputate that toe. The bacteria had entered the bone tissue, a first step toward the dreaded sepsis. I was lucky they had caught it so quickly.

Then the real trouble began. A CT scan of the same leg revealed a dangerous narrowing or stenosis of my femoral artery – the big one carrying blood to the whole leg – leading to a near total obstruction of blood flow. The vascular surgeon said it in clear English: “You are a prime candidate for losing your leg…” Before he could do anything about it, I had two weeks to ponder how I had ended up here.

It didn’t take a medical degree to realize the many missteps that had led up to this crisis. When I left the hospital after first becoming paralyzed 23 years before, no one sat me down and told be the brutal facts about living with paralysis. No doctor, nurse, or therapist explained the constant threat of problem wounds in my lower body. Nor did they mention the inevitability of contracture, or the permanent shortening of the knee muscles, meaning your knee is forever bent. Nor did anyone hammer home maybe the most vital lesson: unobstructed blood flow to all paralyzed regions is the greatest safeguard against wounds that won’t heal and infections invading your body.

Why did this happen? Why wasn’t I exercising my legs to avoid contracture or stimulate circulation from day one? Why wasn’t I getting CT scans to measure blood flow in my legs every six months? Was I dealing with incompetent doctors or second-rate medical facilities? Hardly. All of this took place at Cedars-Sinai Medical Center in Los Angeles, ranked by US News as the 8th best hospital in the country. The problem was not competence. It was communication.

If my internist had consulted with the neurologist who had consulted with the vascular specialist who had consulted with the infectious disease specialist who had consulted with a wound care specialist on a daily basis, in one long, unbroken conversation, even when no crisis was apparent, then none of this would have probably happened. Easy to see now; not easy to see over two plus decades.

No doctor, however skilled or experienced or caring, is thinking about your health full-time. Few internists are experts in foreseeing the problems of patients with paralysis. Specialists in, say, vascular surgery or infectious diseases don’t spend much time thinking about orthopedic problems like contracture or issues of wound care. In fact, 23 years ago, wound care itself was small potatoes, relegated to nurses who picked it up willy-nilly, without formal training, and never the concern of plastic surgeons or other skin specialists who are very much involved today.

The best sources of what might happen to you and ways of dealing with it? Other people with paralysis. The best advice, and greatest amount of solace, I received about possibly losing my leg came from a friend who had in fact lost his leg under similar circumstances. He was living proof that there was life after amputation.

In the end, a procedure called an angioplasty worked and I didn’t lose my leg. That was a joyous day, believe me.

Even in the best of current circumstances in the US – I can’t speak for Finland or Norway -- you have only one principal medical adviser you can count on at all times, and that adviser is YOU. Or in my case, me. I knew experts at Johns Hopkins in dealing with contracture two years into my paralysis but hesitated to have surgery on my knees because I would be laid up for months and had no one pushing the issue. I’ve deluded myself for years in thinking I had wound care down but still struggle nightly with eliminating pressure. Of course, I never heard the words “arterial stenosis” until a month ago, but if I had done more research or asked more questions, I probably would have.

All of that is water under the bridge now. Fear of losing a leg is a great way of focusing the mind. Hopefully it is not too late to amend my own errors in self-treatment and to learn to anticipate problems long before they are manifest. Living with paralysis demands a boatload of self-discipline and mindfulness that I have yet to achieve. It is now at the top of my to-do list.



Comments

  • heatherkrillheatherkrill Moderator Posts: 59 Moderator
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    Allen, 
    Thank you so much for re-posting this blog here!  You have such tremendous insight on many different elements of and relating to spinal cord injury.  I shared this in email form with a number of para/quad friends who (for whatever crazy reason) don't take time to read the blogs on the website or follow the Connect community-- but it gave my husband Geoff MUCH to think about.  One friend responded with the following: "Thank you for sharing this, Heather, but I hate reading articles like this. What am I supposed to do? Get a CT scan? No thanks! Consider surgery to straighten my legs? No thanks! what other things can I do? Perhaps get massages more frequently? If so how often? Continue to eat right? Great, anything small thing I can do to make sure I’m really taking care of myself? 
    I wish that he could also share some advice that didn’t involve surgery. Or at least some advice about which doctors you should be going to regularly and to consult with him on which issues.
    Let me know if you run across anything else like this that sheds more light on this issue."  I put this out there hoping that perhaps someone else with medical experience could give more information!  Thank you for sharing!  
    Heather
  • CruckerCrucker Moderator Posts: 73 Moderator
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    Heather, your friend who doesn't want to get a CT scan -- which, by the way, is painless and takes little time -- can at least ask her principal doctor about an ultrasound exam which can detect blood flow in her legs (if she's paralyzed). Wound care is job one. If you can avoid wounds all together, more power to you. That involves the right type of bed, the right sleeping positions (which is why contracture presents problems), and the right care. Take even the slightest skin breakage seriously. In terms of doctors to see regularly: an internist that knows your medical history cold; a urologist with the same knowledge; a wound care specialist to examine you periodically. A neurologist can also be important, though, ironically, I don't see mine that much. And if at all possible, find doctors, usually associated with a single hospital, who either know or can easily consult with each other. And sorry your friend "hates reading articles like this." AR 
  • heatherkrillheatherkrill Moderator Posts: 59 Moderator
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    She only hates them because she avoids talking about complications related to spinal cord injuries in general.  In fact, she won't even join this online community despite me telling her about it time and again!  How does that saying go...you can lead a horse to water... However, I copied your suggestions and sent them to her in an email as everything you shared is logical and helpful to a wide range of people with (and without) SCI.  Thank you for sharing!  I hope others are reading and understanding that they do not have to wait for something to happen first.  Being proactive about skin care is essential.  
  • CruckerCrucker Moderator Posts: 73 Moderator
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    Hi. Had a second angioplasty on my left leg yesterday and it worked! Arterial system now free flowing. Just kidding about your friend, but she does need to know that no one will provide a roadmap to her health, from the little things like consume more protein to speed up skin healing to big things like contracture surgery. There is plenty of info out there for her to create her own game plan, from our conversation right here to volumes of other Reeve material to "New Mobility" to her friend, Heather. At 74-1/2 years old, I spend a godawful amount of time on my own health issues. It ain't fun, but to quote Joe Pesci in "The Irishman," "There it is." Health is my number one job. Many days, it's my only job. If there is any other way to spread the reading of the Cautionary Tale blog, please let me know. The response from those who have read and shared it has been pretty great. Keep in touch, AR
  • CruckerCrucker Moderator Posts: 73 Moderator
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    Actually the exact quote is, "It's what it is." AR
  • CruckerCrucker Moderator Posts: 73 Moderator
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    edited March 12
    This is a follow-up blog to one posted on 2/8/20 entitled "A Cautionary Tale." One of Heather Krill's friends wanted more practical information about staying healthy and avoiding conundrums like my own, so I tried to dig some up. Hopefully it might be helpful to you.

    I HATE READING ARTICLES LIKE THIS?

    A blog of mine that posted early in February, called “A Cautionary Tale,” all about two horrible months of paralysis-related health problems and what I learned from them, received a goodly number of likes and shares and comments. My favorite came from a friend of my friend and fellow blogger, Heather Krill, who graciously passed the piece around. “I hate reading articles like this!” replied her friend. Why? Bad writing? Wrong font? No, because he or she had no intention of getting something expensive or scary like contracture surgery or even a CT scan. He/she wanted to know if there was “any small thing I can do to make sure I’m really taking care of myself. I wish he could also share some advice that didn’t involve surgery…”

    My first response was: “Wait a minute…I’m the guy writing about a dreadful period where I had 1) a CT scan that alerted me to a deadly arterial stenosis crisis and 2) four surgeries in a row where I lost a toe but saved two legs. I probably the last person to ask about small things that don’t involve surgery. If I had paid attention to those “small things,” I wouldn’t have gotten into this pickle in the first place.

    The irony is, I did know a few of those things, at least on a conceptual level. I just didn’t apply them rigorously or forgot about them or something. And some of them, alas, I only learned after the barn door was left open, so to speak.

    I could add a few tips about avoiding things like contractures or UTI’s or enhancing blood flow to your extremities, say, but to me the main issue is problem wounds. If I could lick this one quandary, maybe I could be more attentive to other areas of potential trouble and stay ahead of the game. There’s Catch-22 here. Because I often have wounds on my legs to protect and heal, I can’t go swimming for fear of bacterial infection. Swimming is great for enhancing both blood circulation and your mood. Enhanced circulation would help the wounds heal faster.

    Only recently did another friend, Tim Gilmer, former longtime editor of “New Mobility” magazine and a 50+ year veteran of living with paralysis, sent me the definitive five-component list on how to heal a problem wound. Tim wanted to make sure that the real credit here goes to acclaimed wound expert and infectious disease specialist, Dr. Bruce E. Ruben, who runs an outpatient wound care center in Bloomfield, Michigan.

    Tim calls them the “Five Essential Components for Healing Wounds.” If any of them aren’t observed, wounds will not heal.

    • No infection in wound or underlying bone.
    • No external pressure – zero – on the wound itself.
    • Adequate blood flow to the wound and circulation around the wound.
    • No edema or swelling in or around the wound area. It puts internal pressure on the wound bed, prevents circulation, and invites infection.
    • Consume copious amounts of protein in your daily diet to enhance new cell growth. Tim subscribes to a formula where your weight (in lbs.) should be of a ratio of 1.25/1.5 of your daily grams of protein. If you weigh 180, say, that is 1.25 of 144 grams of protein -- a lot. A good protein drink will give you 30 grams. Protein powder, 20-25 grams.

    As I finish this delicious protein bar (11 grams), the thorniest of the above components is…zero pressure! There is no standard, universal fool-proof device or method for achieving this. You and your mate and your wound care specialist have to figure out together.

    Good luck!

    Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.




  • heatherkrillheatherkrill Moderator Posts: 59 Moderator
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    I love this follow up, Allen!  And don't you worry, I've shared it along with the same people.  :)
  • CruckerCrucker Moderator Posts: 73 Moderator
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    heatherkrill

    Heather, just read your "Yet" column and loved it! Hope you are using this weird time to good use. Are you staying at home up there? I cranked out two more columns since sheltering in place. They should pop up in the blog space soon. I'm sure this time is very hard for people with paralysis who live alone. Ripe breeding ground for depression. Talk soon AR
  • heatherkrillheatherkrill Moderator Posts: 59 Moderator
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    Thank you @Crucker!  We are staying home, but I miss the separation of my work and family.  Being a teacher is much harder while managing my own two wild and crazies.  But we are figuring it out.  Not having a truly quiet space to write (I do most of my writing at school after hours) has also been a challenge.  But I'm grateful to have space to breathe and groceries still available most days.  Stay well!  Yes, I too worry about people who are alone-- disabled and elderly alike.  Take care.  H
  • CruckerCrucker Moderator Posts: 73 Moderator
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    edited April 6

    There is very little info out there about paralysis and this virus, probably because no one has done any research on the subject other than blanket statements about social distancing, etc. New Mobility had this on line response the other day from Dr. Thomas Bryce of the Mount Sinai SCI Program:
    Dr. Bryce: An isolated diagnosis of SCI/D in an otherwise healthy individual may put the individual at increased risk, depending on the cause of the SCI/D. If someone acquired SCI/D through transverse myelitis, Guillain-Barré syndrome, or spinal cord compression from cancer, they may have an impaired immune system and be at greater risk of developing severe symptoms.

    The other known risk factors thought to increase the risk of developing severe symptoms include age over 65, high blood pressure, chronic kidney disease, chronic lung disease such as emphysema or asthma, diabetes — especially if not well controlled — pregnancy, and being on immunosuppressant medications.

    Since I fit the "transverse myelitis" category, I perked right up and redoubled my efforts to stay sanitized, masked, and away from other humans. I hope others are doing the same.   AR


  • QuincyQuincy Member Posts: 3
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    edited June 20
    Thank you, Heather, for sharing this, but I hate to read these posts. What should I do? What should I do? Do you have a CT scan? No thanks! No way! No luck! Do you consider surgery for my legs? No thanks! No way! No luck! What other things can I do? What other stuff do I do? Maybe more often do massages? and I use this tool for my Instagram, how often does that happen? Keep feeding right? Great, very that I can do to ensure I look for myself really?
    My Life My Style
  • CruckerCrucker Moderator Posts: 73 Moderator
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    Quincy, if you are talking about wound care, here is what you do:
    “Five Essential Components for Healing Wounds.” If any of them aren’t observed, wounds will not heal.
    • No infection in wound or underlying bone.
    • No external pressure – zero – on the wound itself.
    • Adequate blood flow to the wound and circulation around the wound.
    • No edema or swelling in or around the wound area. It puts internal pressure on the wound bed, prevents circulation, and invites infection.
    • Consume copious amounts of protein in your daily diet to enhance new cell growth. Tim subscribes to a formula where your weight (in lbs.) should be of a ratio of 1.25/1.5 of your daily grams of protein. If you weigh 180, say, that is 1.25 of 144 grams of protein -- a lot. A good protein drink will give you 30 grams. Protein powder, 20-25 grams.
    Plus: take every skin breakage extremely seriously. If need be, see your internist or a wound care specialist for instruction. Don't wait until it is bright red or you have a high fever or feel sick. Jump on it early and stay on it until it is completely healed.

    If you are talking about protecting yourself against the virus, play by the same rules everyone else is supposed to play by plus get tested, both for the virus and the your antibody count. You could test negative on both, then pick up the virus the next day someway, but it's always good to know where you stand. Personally, I rarely leave the house and ALWAYS wear a mask. Always.

    Allen Rucker


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