My nightmare trip to see my 98 yr old Dad

Dad is almost fully functional at 98 but with Alzheimers and penchant for beer that he is only allowed 2 of per day.  My step-mother certainly has her hands full as he is non-stop for talking and repeating everything.  The trip is 500 miles and 9 hrs of driving.  I took my best friend Gabby with me.  She is an awesome traveller despite barking at every cat, dog, horse, cow and whatever else she saw moving.  I ate breakfast Sun morning at home in Va, and arrived shortly after 7 pm in New Bethlehem, Pa..  I went to bed between 12 and 1 and right about that same time starting to feel sick.  Felt like I was running a fever and sweating heavily.  Thru the night I had 3 episodes of diarrhea. (Recall I had a right-hemicolectomy in March).  I did not sleep Sunday night and from then on I was not able to eat anything, but I drank some water trying to not be dehydrated.  I was sick all day Monday and didn’t go to the ER thinking I just had a flu bug.  I did not sleep Monday night and by Tuesday I was getting pretty strung out.  I did not want to have to go to the ER but finally called my sister in NB and asked if they’d take me to the ER.  There are 3 ERs about the same distance away (20 miles) so I let them choose….Kittanning at West Kittanning Hosp.  They drove fast enough to scare me as I was definitely not feeling well at all, and by this time the worst of the problem was showing up.  It felt like my feet were literally encased in Ice.  Really really painful and feeling sick on top of that.  No nausea or vomiting and everyone around me was trying to guess what it was.  I have been under the care of a neurologist for 22 yrs here in Va., due to my migraines and I woke up Monday morning sick and with pain in my left leg that I’d been having for a few months, getting progressively worse.  Wife Mary came up with a diagnosis of Reflex Sympathetic Dystrophy that if I ever saw or experienced, I’ve forgotten it, and it is now changed to a Chronic Pain Syndrome something or other.  I have already discovered that Nubain, a narcotic by injection does not stop the left leg pain and that particular pain is different from the cold feet pain.  Again, with relatives trying to tell me what was wrong, we discovered by accident that different massages on the distal leg and feet knocked the pain from 8-9 on a scale of 1-10 down to about 5….but only for less than a minute.  Karen massaged me for over an hour and a half non-stop.  I was in the ER for well over a couple hrs before I got to see a doctor.  An ER nurse came in to start an IV.  I have no veins, or so it seems.  She tried 5 or 6 times before she said she would have to call the IV team.  Kelly, who was pregnant with twins took two tries and got a line in a rare vein mid forearm on volar side….with a scalp vein needle.  Then the first nurse came in and put a blood pressure cuff on and hit the button to start the pump.  I screamed in reaction as this could easily blow that vein and she was insisting that it was OK.  I have too much experience and know better than she, for Sure!  Finally the doc came in we went thru the neuro exam and so on and he asked what *I* wanted.  I said to be free of the pain and sick feeling that I had.  They were going to try Toradol and Dilaudid at the same time but I convinced him to try one at a time as I know Dilaudid worked on kidney stone pain and I think I probably had some with my colon surgery but had no idea if anything at all would work.  Frankly I was very scared that Nothing would work and then I did not know what would happen.  The pain was intolerable.  They tried Toradol first and it did nothing.  Then 2 mg of Dilaudid which thankfully stopped my left foot pain but not fully on my right foot so after 1/2 hr they gave me another 2 mg and I was pain free.  Then they discharged me back to NB to take my own Lortab 5 mg if the pain returned.  I was not nauseated but barely after leaving the ER door, I had dry heaves for the whole 20 mile trip, getting back between 1 and 2 a.m..  I went to bed at Karens but did not sleep now it is Tues night.  Feeling really sick but in a manner that’s hard to describe.  Still sweating profusely with a normal temp.  The pain in my feet is symmetrical with no lines of demarcation.  They feel normal temp to the examiner but literally in a block of ice to me.  Still unable to eat and barely to drink water, I know the pain of an arterial embolism and it should not be symmetrical in both feet.  I know the pain of a shot down the leg as in the nerve root pain of a ruptured lumbar disc and my pain is neither.  I finally got smart enough to get Karen to drive me back to West Kittanning hospital while it was still daylight and I went thru more studies….an arterial/venous sonogram on my right leg was normal.  Blood work was normal.  They sent a different doctor this time for my evaluation and he too, had no idea of what was happening to me.  There has been an outbreak of Listeria in the country due to cantaloupes from California.  We even thought of this as I had eaten one right when the first few people died and then 2 months later it was a shock to hear that it takes a full 2 months for Listeria to take effect.  Normal lab ruled that out.  They sent in an older male nurse to start an IV and he tried only once before calling the IV team…Kelly.  This time she got it in one stick and I was very grateful.  This time 4 mg of Dilaudid one time stopped the pain but I was exhausted from everything. Still did not get back to NB till about 2 a.m..  They gave me four 2 mg Dilaudid tablets to get me thru the next 24 hrs.  I did not sleep Wed night back at Dads and Karen was so obliging to drive me back to Virginia.  Another weird symptom I noticed at arrival to the ER the first night.  I saw flashing blue lights lighting up the fog and thought it was running lights for the helicopter pad, only they did not have such lights, and if I closed my eyes I was seeing graphics like signs with iridescent colored lights in them, but there were no signs around as in an after-image thing.  It was very strange.  I took the Dilaudid tabs to get me thru the night Wednesday and that night I had nightmare dreams of strane brightly colored theme.  I woke up Thurs morning still feeling very sick and so dehydrated that I could not sweat.  When I had my surgery in April, I woke up from anesthesia in ICU with a very strange and nauseating odor.  I even had to ask one of the docs if he or anyone around me had a new fragrance but nobody else was smelling it.  It was pervasive but only within me and it was horrible.  When I woke up with it Thursday morning, I suddenly know what it is…a starvation effect when your body has no positive input and starts digesting within.  I was so weak by now that Karen had to pack the car for me and get Gabby and I into my car and head south.  She got lost once adding an hour to our trip but we finally got to Kingsport and Holston Valley Hospital ER.  Another weird symptom started to hit me on the way south….the only way I can explain it is that my body goes unconscious for less than a second.  It hits me like a shock and I automatically holler.  On the 10 hour trip it hit me 20-30 times and though I’ve witness Grand Mal and Petit Mal seizures I never experienced this.

So, now 10 hrs later we reach Holston Valley ER about 8 p.m., Mary was in touch via cell phone and came to the ER with a friend who took Karen and Gabby home to our house in Ben Hur.  Evaluation by now a 3rd doctor came up with no diagnosis, but he was very understanding and agreed to admit me.  They started an IV in one try and gave me more Dilaudid to stop the pain.  They did a lumbar MRI and a head MRI due to the weird symptoms and I finally got to bed about 2-3 a.m..  I slept very little and then was visited by 2 more docs who agreed it is a mystery.  They contacted my neurosurgeon and finally thursday I slept a little and started to eat, forcing myself to put down some pretty bad hospital food.  I ate some and started getting strength back so that I didn’t feel dangerous to even go the 10 ft to the bathroom.  The terrible odor finally left me on friday and I was released to go home with Rx for Amitryptiline 50 mg at hs, and Dilaudid in case the pain comes back.  I have an appointment to see the neurologist next week (4 days), but we still don’t have a reason or diagnosis.  I did not sleep Fri night, soaking the bed with sweat and chilling…with a normal temp by thermometer.  I finally took a shower saturday night and had the first decent sleep since a week ago.  I am also without that freezing pain for 24 hrs finally.

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