Spencer
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Spencer, November 25,  2017  1:28am EST

Update on Spencer

OK.  I have been feeling very good these past few days.  I think I have been in NSR quite a bit but without and EKG I can't tell for sure.  Am I getting better or am I learning to compensate?   But I went out and ran this morning for about two miles.  Slow pace and my garmin watch recorded my HR at 140 but I know that was wrong as I needed to walk at the turnaround point and I was so breathless I could not speak.  But I ran and it felt good to get out and do what I long to do.  This is the first exercise for me in nearly 2 months.  My real HR was probably north of 180 but I'll take the high HR for the feeling of moving under my power and control.  I think that is why I ran... to regain some control over my life.  


I also ran right at dawn.  Wasn't a good sunrise but it was one no the less.  
  • Deeg
    Deeg, December 13,  2017  2:45pm EST
    Spencer, I am sorry to hear of all of your issues but you have such good spirits throughout and are a very good writer.  I think you have a calling to write a novel!  Thanks for sharing your situation. I think we all feel like you are a friend.  Hope things get better for you soon.  I have had two ablations and neither worked.  I can function in Afib and have chosen to stay there.  My heart never reverts.  The side affects of the medications seem worse than being in Afib for me and my EP says it is okay as long as my heart stays below 120 which it does.  Deanna
  • Mellanie at StopAfib.org
    Mellanie at StopAfib.org, December 5,  2017  6:25am EST
    Spencer,Thanks for letting us know that the sleep study went well and that you actually slept well. Did they find evidence of sleep apnea, or do you have to wait to hear the results? For some studies, if they find evidence of sleep apnea, they wake you up and put you on a CPAP to evaluate the effect. Did they do that? Any idea what caused the stabbing pain?Mellanie
  • Spencer
    Spencer, December 3,  2017  1:47pm EST
    Mellanie - thanks.  It went well and I think I actually slept pretty good.  I remember waking in the middle of the night several times with stabbing pain in my chest.  Also I was on heavy drugs with my spinal fluid migraines.  I think that I will need to redo the study after the next ablation and I am not on heavy does of caffeine, and benedryl.  The tech running the test came back in after reading all my health notes and said "you are one screwed up little cookie".  I had a good laugh.  She was a great tech and made me feel comfortable.  Was an easy test and I hope that it helps me to get back to normal.  Given all that happened this week... I liked the sleep test the best.
  • Mellanie at StopAfib.org
    Mellanie at StopAfib.org, December 3,  2017  6:09am EST
    Spencer,Thanks for the update. Looking forward to hearing how the sleep study went, and what they found.Mellanie
  • Ileen
    Ileen, December 3,  2017  2:44am EST
    Hi Spencer, thank you for the update!!I am glad you are keeping a positive attitude about all this mess! I still think you need to document all you have been thu and share it with the patient advocate of the hospital. They need to know.But it is your choice. I have been had many nurses as friends, they all recommended to me to document my treatments good or bad. You never know, the squeaky wheel gets the grease!( old saying, but still rings true) Now, glad you are doing some better As for vacuuming, quietly,  ummm, no but you could sweep!!
  • Spencer
    Spencer, December 2,  2017  11:36am EST
    Mellanie - sleep study.  tonight!  I had to call yesterday and resked as I was in the ER... I guess no one wants to do a sleep study on a Sat night.  I have had to suspend some of my headache drugs as I want a real study tonight and not something that shows I sleep well because I medicated myself.  Took a nap earlier, and felt great but it took like 2 hours to become fully awake.  The drug is some weird combo and is basically two tablets of Tylenol, a double espresso and then two tabs of benedryl (sp?).  Iileen - thanks for your works.  My outlook has changed.  I know that I can no longer do the level that I once done and need to be content with what I can not accomplish.  Walked the puppy this morning, was in AFib but felt good.  High HR but I am learning to deal with what that feels like.  I am now at the point where my baseline is AFib.  Just like my shoulder, you learn to live with the pain and then turn it off in your mind.  For the puppy, my wife calls it, "night stalking" as I generally do it around 2AM because I can't sleep.  The uppy (100 lbs boxer) is always up for it and I can walk him off lease in the city here for miles.  Not a lot of people out during that time of the night.  Also any idea how I can vacuum without waking the wife?Not sure complaining will help.  They have their standard of care and they are following it.  They haven't killed me off yet.  But GOD does my head hurt now.   The teaching part can be annoying when they all gather around me and invariably someone is taking my pants off.  I swear ever time I end up in the ER, someone takes my pants and underwear and it always seems there is a large audience.  Oh well... I am accustomed to all now.  Have been poked, proded, stuck and exposed more times that I can count in the past three months.  Doesn't phase me... Next time I show up... I'll just strip down immediately.  .  So don't worry.  I'm still here... on the trail... still running and waiting for my sunrise.
  • Mellanie at StopAfib.org
    Mellanie at StopAfib.org, December 2,  2017  9:55am EST
    Spencer, I know you want to win every competition you are in...  ;-)   But, man, you truly have outdone yourself this time! I do believe that your experience is the very worst I have heard of! It hurts just to read about it and think about what you have dealt with!Yes, you AND YOUR WIFE need some additional emotional support from a counselor to deal with all this trauma. And hopefully you will make it without more ER visits before your ablation (I'm surprised they have not talked about moving it up earlier due to the complexity of your case). Are you still on target for a sleep study soon? That has to be a priority as I'm personally convinced that sleep disturbance is playing a large role in this.You sure give me a lot to catch up on when I come back from traveling. Fortunately, only one more week of travels (can you please try for a little less excitement while I'm gone?); then, I'm home until early January.Good luck with everything.Mellanie
  • Ileen
    Ileen, December 2,  2017  5:11am EST
    Dear Spencer, I can't believe that teaching hospital! (We have one in Jacksonville, I live in St Augustine) Now,ours is supposed to be the best for trams victims. But otherwise, I don't wanna go there. Being poked and prodded by students, not my idea of fun. I would encourage you to write a long letter after you are done with this to " the powers that be" of that hospital. They need to know how you were mishandled. I am not talking lawsuit,but.... you need some kind of apology or something! I think my vet could have done a better spinal! ( I know she could) We are at the medical professionals mercy it seems. I would document ever single thing that happened, names , dates etc. It may make monumentally feel better to. I have been getting the runaround about this MRI , making me a little testy. God bless your wife. I would have reacted the same way. Mommy Grizzly!! Now,I am praying for you and hoping you are getting some well needed rest and pain relief, and that things calm down and you can have nice Christmas. I wanted to day swore about your physical fitness. You are amazing, the Olympic swimming( I used to be a swimmer, but since pacemaker, afraid to swim hardly) Getting a lap pool put in to encourage myself to get back to it. And your 20 mile runs! Amazing!I have always trained hard , even though obese most of my life, some days 3 hours ( Before pacemaker and afib) My Dr blew my mind when he said, that was probably the reason I needed the pacemaker, wore the electric system out early! ( I am 66) The thoughts on how much exercise we need has changed dramatically. But ,I see exercise fun, so... I ride my bike, do some weights, trying to walk more with bad knee... etc. But do not over do any more. You are right,men define themselves with their jobs or physical fitness etc..not by simply being good honest people. I am sure your wife did not marry you because of your physical abilities. She loves you for you!! Try to find some new things to do, hobbies, be with friends, volunteer, you can have many passions!! Sorry to drone on. Your psych person will help you there! God Bless and keep us posted!!Life is good, people care .. God bless you and yours
  • Spencer
    Spencer, December 2,  2017  1:30am EST
    An update on me. So remember a few days ago that I passed out and would up in the ER and then the ICU for a few days.  Well, I was passed out for about four hours, more accurately I was delirious and unable to care for myself for hours.  The docs at the ER did their full workup as is their procedures.  Also interesting, since I have been to this ER four times, that it is a teaching hospital.  So when you come in with my symptoms, I am always the "big show" to come and watch as a cardiac event is something out of the ordinary and probably exciting for them.  Now, I ask them questions to test their knowledge and allow them to listen to the heart so they can hear what a AFib sounds like and what it feels like.  Note that I was originally diagnosed by a very junior nurse that asked a few key questions.  So now, I make sure that the junior nurse in the room receives the most benefit from my condition and my current ER stay.  That junior nurse helped me towards healing where a lot of doctors and full RNs missed it.  Last night I was tapped by a nurse that had never run an IV line on a live patient.  He did a good job and the doc gave him some pointers but I could see that he was appreciative of this opportunity.  Hell... I have been tapped so many times I don't care now.  I also shave both my arms now because that transderm plastic deal hurts more than the needles.  So back to the story... I developed this acute rash on my arms that appeared in minutes.  The docs thought that I might have meningitis.  Given my extensive travel history this was possible.  If I were awake I could have told them I was vaccinated against this.  So to test, they needed to draw spinal fluid.  Props to any woman that has gone through this... dude that is a new level of pain.  So the nice little ER doc stuck me four times and missed.  I also learned after the fact that he spilled a lot of my fluid out in his attempts.  My wife said there was fluid all of the bed and on the floor.  He was summarily hurled (he wasn't but it sounds better) from the room and a senior ER doc came in and she got it first time and did the drain.  The lack of spinal fluids over the next two days caused increasingly debilitating headaches and muscle aches in my spine and head.  This eventually came to a head last night when I could no longer drive safely (spousal unit picked up) and I started to get double vision and throwing up again.  We went back to the ER from whence this all started to be seen. Again, anyone with a cardiac issue goes right to the front and into a bed.  Good deal as there was like 40 people ahead of us.  Long story short, it was discovered that I was low on spinal fluid and that "acute lumbar trauma" was the cause.  Many of the senior docs in the hospital came down to talk with me, which made we wonder why are their covering their bases so well.  They never said it outright but they admitted that the one doc drew too much spinal fluid and I was there because of that.  Because of the drugs that I am taking for the AFib and whatnot, a blood patch would do more damage than good.  So I got some nifty drugs to allow me to relax and basically let my body replace the spinal fluid on its own.  I am also probably leaking spinal fluid into my body but that should heal up soon and allow me to heal.    The one doc that drew the fluid in the first place came in and my wife just about came unglued - talk about a momma grizzly.  I had $20 on her to take him down...So I'm back home.  Still with massive headaches, sensitiviity to light and cervical pain but the drugs are helping and I agreed that I did not want to be poked again.  While on the EKG, I popped some good AFib but then went into a six hour period of sustained VTach.  That is new.  I thought I was just moving but it stayed even when I was very still for several minutes.  Not sure that means, if anything.  The EKG machines are not that bright in the first place.Yeah.  Dude, I really not EVER recommend getting 5 spinals in a row.Back home now... waiting for my sunrise...
  • Spencer
    Spencer, December 2,  2017  1:00am EST
    Jeanamo - Thanks.  I am going to talk with a shrink soon.  The change in my lifestyle is kinda of like grieving and I need to find a way to something new that interests me that I now can do given this condition.  My entire life, outside of work and marriage, was in long distance endurance sports - Olympic level swimming (went to the trials but only came in 8th in the US, and they only take the top 3), black belt in Tae Kwon Do (also asst coach for the Women's National TKD team) and ultra distance running (100+ marathons, 3 time Boston qualifier and several runs above 50 miles).  That was how I defined myself and my self worth.  It was how others in my professional community came to now me and many watched my races and it was a huge source of pride and importance.  Now that is gone, well at least for now, and I need to find that new thing that I can cling to and do.  Men are defined by what we do.  Losing my ability to do what I do was a severe blow to me.  Also I have recently lost my job with the company because of this illness and had to be moved to another part of the company.  I needed to be able to travel overseas for extended periods of time into very remote areas and this illness precluded all but the most benign domestic travel.  So my career has been upended by this disease and cut short all well personal life destroyed.  So there is a lot to think/talk about with the shrink.  I also do not wish to take anymore drugs at all (IE psycho drugs).  I now have a whole collection of pill bottles in my bathroom.  Before I was be given a script and take a few and then toss them out.  Now, I schedule my day to make sure that I can take the right pills at the right time.  This condition has turned my life and that of my extremely strong wife upside down.  Before I was the paragon of health and well-being.  I would get up, run 20 miles and come back to make breakfast before she would get out of bed... or I would call her from the next state over as I was checking in (one time two states over).  Now, that image of me in her mind has changed.  But I can say that she has never waivered in her love and support.  I would not be here if it were not for her.Thank you for listening as I rant.  Waiting for the sunrise... it will be different than what was yesterday but it will be a sunrise none the less.
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