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Saturday, October 15, 2016

Personal Update

(For politics, please scroll down)

(This post serves as the explanation for my pulling back from the blogs and for my use of comment moderation here when I am typically a staunch supporter of freedom of expression)

hydronephrotic kidney
I'm going through hell here.


Grinding pain since June 9. As yet, no end to this pain is in sight.


My usual blogging activities have been curtailed and will become even more curtailed.

As I've mentioned before, I am dealing with health issues: namely, excruciatingly painful bilateral hydronephrosis, with the left ureter in crisis at this time.

What misery!  Without pain medication, I cannot function.  On any level.

The nephrostomy done on August 12 has been successful in that my left kidney, previously in crisis with regard to output, is no longer in crisis..

But what I've had to endure since then!

After inserting the neph tube on August 12, the hospital released me with this ugly thing hanging out and attached to my waistband by only one safety pin and no plan for somebody to do the dressing changes and at-least-every-other-day tube flushes:


Complications since then have included the following: allergic reaction to Tramadol, dangerously-rapid weight loss, allergic reaction to Vicodin, systolic blood pressure so dangerously low that kidney failure was imminent, public humiliation when the neph bag leaked, middle-of-the-night bed changes. struggling with how to bathe with this tube and hose attached, and — worst of all — an inexplicable, notorious to treat neuropathic pain cycle.  The pain is akin to that of shingles.

There is a possibility that ureteral neuroplasty will eventually resolve the pain. Maybe, maybe not. But it's the only chance I have to ameliorate this pain cycle.

Meanwhile, federal law mandates that I have drug screens to make sure that I am the one taking the medication prescribed. I have yet to learn who is paying for these drug screens.  It is very likely that I will have to endure such drug screens for the foreseeable.

Next up:

1.  neph tube exchange (outpatient procedure) this month

2.  in November, ureteral pyeloplasty  (3-4 hour surgery and an in-hospital stay of a few days, followed by at least 3-4 weeks of recovery at home) or nephrectomy, requiring a hospital stay of a few days.

Mr. AOW and I will need help during those recovery weeks.  I've never had major surgery before and really don't know what to expect.  Yes, I'm apprehensive.

Former blogger The Merry Widow, our dear friend who came here in January 2010 to help me provide care for Mr. AOW after his devastating brain hemorrhage of September 15, 2009, will again travel here from Florida — this time, to care primarily for me.

46 comments:

  1. I can only, and have been, pray.
    Thank God for the Merry Widow.

    ReplyDelete
  2. Still offering prayers for healing. I don't know how you do it, AOW. Neuropathic pain is the absolute worst. I had a taste of it before all my carpel tunnel, finger, and wrist surgeries. I remember having my arms propped up on pillows and tears just running down my face. I have an extremely high pain threshold, so I know a bit of what you're going through.

    ReplyDelete
  3. The heart asks pleasure first ––
    And then excuse from pain ––
    And then those little anodynes
    That deaden suffering.

    And then to go to sleep,
    And then –– if it should be,
    The Will of its Inquisitor ––
    The liberty to die.


    ~ Emily Dickinson (1830-1886)

    I certainly hope it never comes to that, AOW, but I do know how you must feel, and have nothing but empathy for you –– and admiration for your dauntless approach and perseverance. May God bless you with His peace.

    ReplyDelete
  4. You know you have every support I can give, including prayer.

    ReplyDelete
  5. As you have always been on call for me I'll be on call for you. Call me anytime it doesn't matter where I'm at or the time of day, I will "make" time for you.

    ReplyDelete
    Replies
    1. This is what friends -- real friends -- do to help and comfort one another.

      The last hour before each dose of pain medication is rough!

      Delete
  6. Very sorry to hear it, AOW. You've had your share of suffering since 2009. I wish the doctors could shut off the pain. Sometimes they don't seem as capable as we need them to be.

    ReplyDelete
  7. I am so so sorry to hear. I had been afraid to ask as not to disturb you. Prayers to you for some relief.

    ReplyDelete
    Replies
    1. Bunkerville,
      As you know, I haven't been commenting much at your site for the past several weeks. When I disappear like that -- you're on my list of blogs to visit every day -- you'll know that I'm in trouble.

      Delete
  8. Today has been an especially bad day. It showed enough that both of my clients today remarked on the matter. Very obvious, evidently.

    The pain specialist warned me that I would have such days and not be able to discern the trigger. Sometimes there isn't a trigger! The pain just happens.

    Hoping to sleep off this attack tonight.

    ReplyDelete
  9. Best wishes and prayers for you AOW. If I could only do more..

    ReplyDelete
  10. Let nothing disturb thee,
    Nothing affright thee
    All things are passing;
    God never changeth;
    Patient endurance
    Attaineth to all things;
    Who God possesseth
    In nothing is wanting;
    Alone God sufficeth.


    ~ St. Teresa (1515-1582) - Lines Written in Her breviary
    (As translated by Henry Wadsworth Longfellow)

    These words have helped me many times through many years. I hope they may do the same for you. - FT

    ReplyDelete
  11. G-D set it up so that, I will have that time...I quit my job in Aug., because of back issues. Then my kitty had to be put to sleep in Sept. and now my roommate has gotten her own place. She will care for my plants, start my car weekly and generally keep an eye out on things...see, I'm supposed to go! Am happy that, I can be of use...after all, it was caring for, Mr. AOW, that sent me back to school to get my CNA...hah!

    tmw

    ReplyDelete
  12. "My usual blogging activities have been curtailed"

    OK, but the fact that you haven't quit bespeaks fortitude and a road to recovery!

    ReplyDelete
    Replies
    1. Jon,
      My ancestry is German and Welsh. A stubborn lot!

      I'm working hard at not quitting.

      Delete
  13. Thoughts and prayers and especially for the Merry Widow. God's grace on her.

    ReplyDelete
    Replies
    1. Thank you kindly! Keep me in prayer as, I, travel on Nov. 14th...2 stops, gurk! And only 30 mins. to get off 1 plane and board another in Atlanta...ARGH!

      tmw

      Delete
  14. Take care of yourself, AoW, and get well soon!

    ReplyDelete
  15. I'm very sorry to hear this; I hope they can find a way to manage the pain, and I hope you recover quickly.

    ReplyDelete
  16. If I had the right –– or the temerity –– to give this poem a name, I would call it “To Those Left Behind.” Emily never gave titles to her poems, they are always identified by simply the first line.

    We think always of the brave men horribly killed in battle, but too little attention has been paid –– I feel –– to the widows and orphans, mothers, fathers, younger siblings and close friends forced to suffer the pain of losing a loved one, a helpmate, a guide, and a companion.

    After all, for the dead it is over –– their suffering, one would hope, is at an end. Those left behind, however, must somehow carry on and find find new purpose in living. This poem, I feel, addresses their situation eloquently. I see i too –– not as an antidote –– but as an anodyne to pain all of us must inevitably experience –– part of the price we must pay for ever havng lived at all.


    We grow accustomed to the Dark ––
    When Light is put away ––
    As when the Neighbor holds the Lamp
    To witness her Good bye ––
     
    A Moment –– We uncertain step
    For newness of the night ––
    Then –– fit our Vision to the Dark –– 
    And meet the Road –– erect –– 
     
    And so of larger –– Darknesses ––
    Those Evenings of the Brain ––
    When not a Moon disclose a sign ––
    Or Star –– come out –– within ––
     
    The Bravest –– grope a little ––
    And sometimes hit a Tree
    Directly in the Forehead ––
    But as they learn to see ––
     
    Either the Darkness alters ––
    Or something in the sight
    Adjusts itself to Midnight ––
    And Life steps almost straight.


    ~ Emily Dickinson (1830-1886)

    ReplyDelete
  17. I am so sorry to hear this continues, and continued prayers for your pain, serenity and wisdom of the medicine men. I'm glad to hear your friend is coming. What a blessing.

    ReplyDelete
    Replies
    1. Baysider,
      As one who has never been sick before -- other than the usual maladies which teachers catch -- I'm having a difficult time psychologically as this kidney trouble drags on and on and on.

      I've been suffering since March! But back then, I thought the troubles were a combination of normal aging and a stomach virus (including a reaction to the chickenpox vaccine as we've discussed previously).

      This agony may still be attributed to vaccine reaction, but now it's not a matter of merely letting the reaction run its course. Permanent damage has been done to my left ureter and, of course, to the left kidney itself as a result of what amounts to a blockage.

      I'm going to try not to work TMW too hard. But who knows? I don't yet have a complete picture as to what to expect post-op.

      Delete
  18. This comment has been removed by a blog administrator.

    ReplyDelete
    Replies
    1. Trevor,
      You are over the line with your comment.

      My blog, my property, my focus.

      You are going to have to eat your words early Wednesday morning.

      Delete
    2. I'm very sorry. I only meant to suggest that you might feel better if you took the focus off the pain and concentrated on something else. That has worked for me when I've been unwell. Years ago I had to put up with irregular heart beats accompanied by chest pain and numbness in my left arm. Classic symptoms of heart attack. This scared the hell out of me. I was alone in the house when these attacks came, usually in the middle of the night. Even so, I always took a good book with me to the ER. I found it helped to get my mind off the feelings of panic, and get a better sense of perspective. That really helped.

      I must have expressed myself very badly. I certainly didn't mean to be tactless. I hope you will forgive me? We all make blunders often without realizing it.

      Delete
    3. Trevor,
      Apology accepted.

      But know that this kind of deep organ pain is grinding me down.

      The pain is even worse now that I've had yesterday's neph tube exchange. Back to the doctors I go today.

      So worn out with this.

      Delete
  19. Sorry to hear this.

    The past two years have been a medical nightmare for me, with much pain involved, so sympathising comes easy.

    Wishing you all the best.

    ReplyDelete
  20. My frustration mounts!

    I had a neph tube replacement today. Despite the aching pain I have following today's procedure and residual anesthesia on board, I have to scramble this evening to get the proper bandaging material -- never mind that I have an order from the neph tube interventional radiologist (M.D.) that I should be getting more-frequent bandage changes.

    No medical facility I've contacted will do this bandage change! I'll be relying on my dear friends in the homeschool group to tend to this medically necessary matter.

    I will not lose this kidney because of a lack of bandage change!

    I'm livid! I've paid health insurance premiums all of my adult life. Now I need the services for which I have paid and can't get them from the health care industry.

    ReplyDelete
  21. I had no idea you were suffering so. You are in my prayers, as is Mr AOW.

    ReplyDelete
    Replies
    1. Bob,
      Thank you.

      I'm like a cat: good at hiding it when I'm really ill.

      Delete
  22. AOW, do you think this is because of obamacare? If yes, then let me post in advance - Thanks for nothing libtards.

    ReplyDelete
    Replies
    1. Kid,
      It might be because of ObamaCare. The regulations are surreal. I keep hearing, "You don't qualify" for this or that.

      I'm having to be proactive when I'm really TOO SICK to be this proactive. **sigh**

      Delete
  23. Trevor, yea, really ignorant comment. Like anyone can affect the election results. btw - Most of us can chew gum and walk at the same time too.

    ReplyDelete
    Replies
    1. Kid,
      I'm sure that Trevor meant well. But right now, I'm unable to blog as often as I wish.

      It has taken me several days to get my Wednesday post ready. It's comprehensive! Just in case I don't get to post again before the election. Everything in my life right now revolves around my pain levels and this medical loop in which I'm trapped.

      Delete
  24. obamacare - everything I read tells me it is failing spectacularly everywhere. My personal doc works mostly with medicare folks, and the last time I was there, a new sign as posted at the checking listing 4 medicare suppliers that they no longer take.

    ReplyDelete
  25. My Doc no longer accepts ObamaCare patients. He told me that the bureaucratic BS, paper work etc. was taking up 2 hours, per day, of his time. People who supported electing B.O. and ObamaCare should be forced to spend the rest of their lives on it; even after it has been repealed for all of the rest of us!

    ReplyDelete
    Replies
    1. Jon,
      More and more doctors are bailing on ObamaCare -- or joining larger umbrella groups.

      But these umbrella groups have restrictions! I ran up against that yesterday when my own primary care physician couldn't get authorization to do a dressing change for my neph tube. The urologist/surgeon has to handle the dressing change -- never mind that his office doesn't do such a thing. Well, until now. I won the battle today. See my comment below.

      Delete
  26. Sorry to hear your problem persists, AOW.

    I'm surprised that you don't have home care available down there as part of ones health care coverage. I had no idea that medical care was that bad, since health care in America is always touted as the best.

    ReplyDelete
    Replies
    1. Waylon,
      Were I on Medicare or on Medicaid, I'd be more likely to receive home care.

      I did receive a visiting nurse for one month following my August 12 surgery. That's it, apparently, for my policy. I'm ineligible now. **sigh**

      Delete
  27. AHA!

    The problem of the twice-a-week bandage change has been solved!

    I threatened litigation -- after making clear that I had a friend to do one bandage change a week but still needed someone to do the other bandage change required in the course of a week.

    The very doctor's office that told me yesterday: "We don't do dressing changes here" today decided that they would be doing a Friday bandage change after all.

    The combination of my threat of litigation and my surgeon's intervention brought about a solution.

    At first, the nurse there today still tried to weasel out of the five-minute bandage change. She said, "I don't have split sponges."

    I replied cheerily, "I do!"

    Then she said, "I don't have Medipore tape."

    I again responded cheerily, "I do! And I carry all those supplies with me in my car everywhere I go."

    I could hear my surgeon chuckling in the next room as he overheard this exchange.

    In the medical loop of this 21st Century, the patient needs an advocate or the patient needs to be his own advocate. And a nasty advocate, too, if required. It came down to being nasty today.

    I WILL NOT LOSE THIS KIDNEY FOR LACK OF A DRESSING CHANGE!

    ReplyDelete
  28. Replies
    1. My Welsh-German heritage. It stands me in good stead over and over again.

      Delete
  29. Whew! I'm glad you 'won' but the fact that it takes another doctor's intervention and YOU bringing your own supplies and steamroller is APPALLING. This is like the SOVIET state. Their athletes travelled with a general medical kit to have supplies in case of injury with the poor care available.

    My brother had a wealthy friend who had serious surgery with several days in the hospital - and this over 20 years ago. She hired a full-time RN to monitor all procedures and medications and generally be there to intimidate the staff into being careful because they were under the observation of a professional who wasn't drugged into oblivion. She did this because she 'knew too much' going in. Florence Nightingale, call your office!

    ReplyDelete
    Replies
    1. Baysider,
      My having to be so proactive has been difficult in the extreme -- and exhausting. Doesn't help my pain levels, either.

      Delete

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