Dear Hospital Discharge Doc,

I appreciate that your knowledge of, and ability to treat successfully, both sepsis and C. diff helped to keep me on this side of the living.  Truly, I do.  Without your abilities and those of the emergency department medics, I’d be deader than dead.

You asked me if I’d like to go home or stay another day.   Of course I wanted to go home!

The discharge papers included:

  • the diagnoses:  sepsis and C. diff.
  • extensive printed info about C. diff from two different sources:  it’ll kill you blah-di-blah; recurrences; future proclivity.
  • notation to follow up with my own doctor within one week.

Here’s what I didn’t get:

  • Information about what the septic shock did to me, a systemic malfunction that progressed far enough for my kidneys to shut down.
  • Hints about the recovery from sepsis, that there was even a recovery to be endured.

The acupuncturist I saw about 6 weeks following discharge told me that after his own bout with sepsis, it took him a full year to feel strong again.  A full year!?   At the time, I was sure it couldn’t take that long for me.  Um, because I’m special?  I sure didn’t want that to be true for me.  I had other plans.   That appointment was 8 weeks ago.

When I expressed my frustration to the acupuncturist that you hadn’t given me a single hint about what was possibly to come, a lengthy recovery with unknown variables, the acupuncturist explained thusly:  that you, the discharge doc, had a very narrow scope of work–is she dead or not dead?–and that was it.  Once I was out of the kinda dead category, you were done with me.

I was too sick to notice at the time.  But gee whiz, really?!  That’s it?!

Apparently, you hospital folks who treat sepsis and other life-threatening conditions don’t necessarily communicate/coordinate with the lesser mortals at the general practice clinics where we are told to go after finding out we’re still alive.

My doc of choice is a physician’s assistant (PA)–not quite doc, but tons of training in that direction, more like a junior doctor.  She’s a lovely lady and one of the few medicos I tolerate and even enjoy.  She had nothing for me about my prognosis, but of course, I was too sick then, five days out of the hospital, to notice obviously, but I remember feeling that the visit was more pro forma than informative.

My feelings about medical practice are not improved by this experience.  Emergency medicine is different–I would not have expected the ER doc to follow up with me.  Because of past experience, and also because of the post-hospital visit with the PA, I chose to take this ride without medical people.  (One exception is that I tried out seeing a naturopath, in my half-witted condition, which I only regret because of the 600-flippin’ dollars I forked over.    That experience is a whole other post.)

I would wish that you could understand a mighty disconnect:  my not-quite-dead experience and the severity of those two illnesses contrasted with the lack of information received following same.

Do you see that my impressions were guided by your blasé attitude, your shifting me along to the next guy, but nobody saying something like:  “Holy crap!  Near death!  Holy crap!  Big deal!  Wow!”

It was just business as usual for you–treat ’em and release.  For me, my life has changed profoundly.   Big Mister has endured the 12 awful hours in the emergency room and my four house-bound months beyond that.

Dr. Discharge, here is what came next, four months after I left the hospital.

Only a few days ago did I dare to do a little online research with the search term “sepsis recovery.”  There is a ton of info about what sepsis is at the grim moments, but not what it does in the long-term and how to cope.  I even found a website called Surviving Sepsis.

I also discovered, buried somewhere in the paucity of literature of the after-effects that it is quite common for sepsis survivors to react to their world as if they have post-traumatic stress disorder (PTSD).  PTSD is usually connected with war experiences or other horrendous encounters.   So, too much information for me causes this horrible anxiety.  Thanks for the tip; I coulda used it, oh say, 4 months ago and so could Big Mister so he’d have some idea what the hell I was doing.

I searched long enough, maybe 20 minutes because I couldn’t take any more than that, to discover that yes indeed, sepsis causes oddities, limitations, and malfunctions in brain power, which may or may not resolve.  Which makes me wonder about nutritional healing support and advice.   My haircutter, who is in her late 20s, told me that medical students receive 100 hours of training in nutrition and that in beauty school (wait for it!), they spend 100 hours on manicures!

Is it unsurprising that so many of us feel unconnected to our culture?  This question isn’t a brain-spasm-leap; the USA culture has a certain system for medical care, one that calls “original” herbal or hands-on healing “alternative medicine.”   Those powerful middlemen, the insurance companies, work hard to keep those modalities not covered or so woefully under-covered that even in the listing of coverages, those ways of healing seem odd or not in the mainstream.   (For you NHS folks, “covered” means what they’ll “pay” for.)  Um, those modalities were the mainstream, folks, were not alternative medicine.

Think hard about public relations campaigns–what adverts do you see in magazines and on the TV here in the US?  Pharmaceutical companies advertising the latest drug “you should ask your doctor about” and hospital conglomerates telling us that their care is personal care and you will be repaired at their facilities.  Hospitals are big business, don’t forget that.

So, yes, I feel disconnected from my culture this way, too.  Healing is not an assembly line, it is a process.  I long for the days in the 1960s when our GP (general practitioner doctor) made house calls and really knew us and had time to care.

So, Dr. Discharge, would you please think about what I’ve said?  I’m not playing the blame game; I’m saying that there was a rather large disconnect between my diagnoses of near-dead and the “see you later, don’t let the door hit you in the bum” discharge from the hospital.

Sincerely yours,

Ms. Patient

© copyright lahgitana.  Dude and dudette, don’t steal this stuff.  It’s hard enough to summon brain power without more challenges.
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28 Comments (+add yours?)

  1. minlit
    Jun 21, 2012 @ 08:28:23

    The Henry Ford Medical System, but without the speed and reliability, I guess.

    Reply

  2. 10000hourstobe
    Jun 21, 2012 @ 08:54:20

    My mother had a similar experience with breast cancer. Having undergone a mastectomy along with the preparation for future reconstructive surgery, being discharged from the hospital to recover, calling the doctor to say something seems wrong because she feels like she is getting weaker, going back for a second surgery to remove the foreign thing they put in her body in preparation for the reconstruction because it was now infected, etc. Until, finally, she reached the decision that she was better prepared to care for her body than the doctors. She turned down chemo, radiation, even mammograms, because she recognized all of these treatments, rather than healing a wounded body, were going to poison her one way or another. Instead, she committed to follow a nutritionally-based recovery program that is making her stronger than ever and giving her back her personal power. Guess what–it’s called “alternative medicine.”

    Reply

    • lahgitana
      Jun 21, 2012 @ 08:58:59

      She is a survivor is more than one sense. To be so ill and to have to change gears, because it’s a personal imperative, is quite a feat. I’m happy for your mother that she found the “alternative medicine”!

      Dying with dignity, living with dignity–same thing, yes?

      Reply

  3. Jude
    Jun 21, 2012 @ 10:49:53

    Good for you for expressing your pissedoffedness Laurie! I hope someone from the hospital reads it. Surely it wouldn’t take SO much of their time to enlighten you just a little about the lengthy healing process. They could have prepared you. Not good at all. Hugs. :)

    Reply

    • lahgitana
      Jun 21, 2012 @ 12:39:56

      That’s one of my favorite words, Jude–pissedoffedness! >:-D

      Yeah, it’s WEIRD to throw someone back into their world with no help. I have not been able to work and coulda used the hint!

      They coulda sent home info with Big Mister. Anything… !!

      Nice to see you around, Jude. Keep around!

      Reply

  4. Alexandra
    Jun 21, 2012 @ 14:43:25

    I often think about you, and I always wish you well, and send good thoughts your way. You will be better, it’s natural that it’s so slow, although I do understand your frustration about it. I believe your organism is taking care of you, I believe it’s curing itself.

    You’ve written a beautiful text :) You are a very good writer.

    As for the medicine. I was born in Russia where I lived for a long time, I travelled a lot and now I live in Montenegro ( as you know). I’ve often had health problems but I’ve met only one, maybe two, good doctors in my life. I find it hard to trust doctors, but still the official medicine is the only one I’m able to trust at all.

    I don’t trust alternative medicine, but I believe that every organism has a potential to cure itself. Thus, it’s very important to listen to it, and follow its wishes. I know you want to be there already, you want results now, but if that is the speed your organism chose, I’d say – go with it.

    I wish you lots and lots and lots of health!

    Reply

  5. lahgitana
    Jun 21, 2012 @ 15:13:26

    Dear Alexandra, Thank you for the lovely and thoughtful words. I needed to hear what you said, that my organism is healing itself and that I need to take ITS time, not my own.

    Today I’m having a full rest day because I’ve been doing way too much this week and finally realized how tired I was. So, thank you, Alexandra. I can’t describe what your response means to me.

    Yes, the practice of medicine has enormous influence in our lives. I’m sorry that you, too, have had not-great experiences with doctors. So much information to choose from. …

    A digression: I often visit NeoWatercolor’s painting of Usyaka the Nose Sharpener. That perfect reflection of your lovely cat makes me smile and relax. I wish I owned the painting–isn’t that funny, since it’s not even MY cat?! >:-D

    I hope you’re OK; haven’t seen you and The Cat in a little while. I wish YOU lots and lots of good health, Alexandra! Very best, Laurel.

    Reply

  6. Alexandra
    Jun 22, 2012 @ 03:05:05

    I’m so happy my comment was useful to you, Laurel. I really wanted to help :)

    It’s a very good idea to take rest today, I’m sure your organism will be thankful for that :)

    I’m about to compose new posts for Usyaka’s blog. I can’t even say I’ve been too lazy, it’s not the laziness, it’s non-stop over 30C degrees heat which lasts 24 hours a day. We need a lot of sunlight for our photos, but now when we are in the sun, all we can do is lie down and sleep, or crawl to a shadow nearby.

    That painting is amazing. The artist is very talented. Maybe you can print the painting, or you want the actual painting, but not a printed version?

    Reply

    • lahgitana
      Jun 22, 2012 @ 08:58:31

      Ach! Heat like that for 24 hours a day!?! Yikes! Cats generally love warmth; I would like to hear if Usyaka thinks the heat is just right?! Is she all stretched out and happily lethargic?

      Again, I must laugh at myself for not considering a possibility! Yes, I can print that painting! hahahahahaha! I will ask Victoria if that’s OK, first.

      I’ve backed off all the activity and will go back to doing very little. Yes, your thoughts helped–for the practical advice AND for the caring. >:-D

      Be cool! –Laurel

      Reply

  7. sweetdaysundertheoaks
    Jun 22, 2012 @ 07:02:36

    Thumbs up here Laurel! You said what I wanted to get up in the face and say to almost everyBODY at the hospital where I had my emergency stent procedure. The medical scene scares me!!!!!!

    Reply

    • lahgitana
      Jun 22, 2012 @ 09:01:54

      Oh good, Pix! Glad it was right on! I’m still bemused and removed so I don’t feel hugely angry, mostly perplexed and frustrated. But that is the shape of in-a-hurry medicine, isn’t it? It is scary. I want to stay away from most of ’em. And yet most medicos started out with a helping heart…. ???!!

      Gawd, I can’t imagine being in your hospital slippers and feeling upset and mistrustful! Yikes!

      Glad you stopped in, as always!

      Reply

  8. heretherebespiders
    Jun 22, 2012 @ 11:08:29

    Any chance of me being able to put this in an envelope to your hospital? :D
    Unfortunately if herbs and homeopathy did work, big pharma would be all over it and selling at the same price as the rest of their wares. So… the best part about alternatives is that you have someone to listen to you, and not rush you out that door. You can’t put that in a pill! Having someone listen to you, and then in turn listening to your own organism (love that, thanks Alexandra!), are indeed very important.
    Never forget we are all here listening, too, and care an awful lot about you. If you’d like me to do any research on your behalf because it is too overwhelming, or if there’s anything at all I can do from 4,000 miles away – I will and gladly!

    Reply

    • lahgitana
      Jun 22, 2012 @ 11:53:45

      Aw, Spiders! How lovely!

      Big pharma IS grabbing onto the “other” remedies, which is sad.

      What I like about the alternatives is the gentler approach, the non-sledgehammer approach that Bean (catself) talks about. Just because a sledgehammer could work doesn’t mean we HAVE to use it. I like the option of using Arnica for pain because it isn’t tearing up my organs. !! It doesn’t always work, but the no-destruction angle is a payoff and an accepted consequence.

      But, what you said, about the listening and the no-rush–that is healing. I have an icky shoulder right now (well, since January!) and seeing the masseuse gives me more than pain relief and muscular restructuring.

      Wasn’t that great how Alexandra used the word organism?! It came at a perfect time when I returned to being quiet instead of doing too much. I had been saying how tired I was, but was I listening to my organism? Now I’m heeding and just being quiet.

      I don’t know what I could need, but thank you for the offer, especially about research. Isn’t it a pain to feel like crapola and have to summon the energy to engage in research?! (Which reminds me, we haven’t heard about your MRI. Ahem, E!)

      Some days I wish I could summon words for a post just so I could hear from all of you, to be in your company, to be safe in a caring village.

      Reply

      • heretherebespiders
        Jun 22, 2012 @ 12:13:05

        We’re here! I don’t want to overwhelm you, either. Just say boo sometime :) I don’t know about my MRI yet – consult to go over the results is July 4. I also don’t know if I bother asking for time off work as my 6 months is up July 3! I have no reason to think they won’t hire me on, but I’m not confident in myself. We’ll see! All I can be is me :)

        Socks is in the hospital, waiting for some sign of Button, which might take days! I’m off to blog about it…

        Reply

        • lahgitana
          Jun 22, 2012 @ 12:38:27

          Hell, yeah, ask for the time off! Be cheeky! It R fun!

          Looking forward to Socks, Button, and Bear news! Complete strangers are wishing them all well!

          You wouldn’t/don’t overwhelm me, E.

          Reply

    • lahgitana
      Jun 22, 2012 @ 11:57:01

      Pee Ess (just like Bean does–I have her on the brain!): I bet you could send this to any US hospital! ‘Tis the system, not the people.

      (Going off to the neighborhood library to find more Dashiell Hammett!)

      Reply

  9. lahgitana
    Jun 22, 2012 @ 12:02:47

    Pee Ess again: I was wrong–you DID tell us that your follow-up for the MRI hasn’t happened yet, that it is some way down the road. Sorry you have to wait…. <:-[

    Reply

  10. rumpydog
    Jun 23, 2012 @ 07:30:00

    I hope you’re doing better. An yes, medical types can be terribly frustrating. My practitioner of choice is a nurse practitioner that actually talks to me.

    Reply

    • lahgitana
      Jun 23, 2012 @ 07:44:33

      My PA also takes lots of time with me usually, which is great. I am moving along, rather slowly, but still improving. Thanks for stopping in! Nurse practitioners are special folk, aren’t they?

      Reply

  11. JustI
    Jun 24, 2012 @ 18:19:28

    I was glad to see your post! I’ve been wondering how you have been? I think I detect a bit of ‘feisty’ in your writing, so I hope you are progressing!

    Reply

    • lahgitana
      Jun 24, 2012 @ 19:38:02

      Feisty is good, huh?! I’m progressing… or maybe at a plateau…. have had a little rough time because I did too much last week! Ah, yes, stubborn I am!

      Glad to hear from you as always! How have you been?!

      Reply

  12. IsobelandCat
    Jul 02, 2012 @ 11:18:51

    I do not know how I missed this. It is eloquently written and cogent. Like it or not, you have become a spokeswoman. You are articulating what many of us feel about our medical services. There is a lack of joined up thinking. The patient is at once treated as someone who should be advised for their own good, and expected to know how the system works and what questions to ask. I am being referred via my GP for assessments by acupuncturists and mainstream medicine re my knee. I shall let you know what transpires. But it will be a few months at least for the acupuncture, so I expect I shall be advised to have surgery by the hospital.
    Rest well.

    Reply

    • lahgitana
      Jul 02, 2012 @ 12:50:11

      Isobel, thank you for being here yet again. This is a tiring journey too because it seems like a one-horse life I’m leading–narrow in scope and BORING! But OK, I’ll be a spokeswoman.

      This disconnect stuff really is making me angry because of the months of upset and questioning.

      I want to hear about your knee’s journey as it transpires, Isobel. Lordy, cutting us open must be FUN for folks–or at least easier to pay for! grrrrr…. I hope they bring YOU along for the ride, too, and that you don’t get worn out trying to navigate the system.

      Resting it is!

      Reply

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