Sunday, August 12, 2007
Life has been moving by swiftly since I last entered my previous text.
Last Monday, August 6, as best as I can recall, I spent nearly a couple hours cleaning some of the carpets in our house with a carpet cleaner while CC took the kids to karate.
Progressively feeling weaker as I went, I wanted to complete a certain amount of the task I had put in front of myself and after completing the task I had set, I realized I was very tired and was having a hard time keeping a clear head to think, so I sat down at my computer and began to read some emails. Sometime after sitting down and reading some, I passed out and woke up with my head on the edge of the keyboard. After waking up, I was very concerned and light headed, in a panic because I was alone and couldn’t remember where everyone was. The cold sweats began and numbness began in my hands. My chest began to feel tight and it was becoming difficult to breathe with a localized pain in the left side of my chest and left arm.
I made it down to our bedroom and lay on the bed. Somewhere in that time frame, CC called and I think I told her of what was happening and that I was scared in this one.
After she came home, I told her I had been experiencing more of the same and some distinct muscle jumps (contractions) but the numbness did not progress past my hands and wrists. She gave me a dose of liquid K+ but nothing improved and that furthered my fears so I asked her to call 911. It was around 6:30 PM, I think.
EMTs were there in a manner of minutes but I don’t remember much past hearing the sirens approaching. They got me onto a gurney and CC road with me in the ambulance where they administered a number of doses of nitroglycerin to ease the chest pain (which it did, as I recall) on the way to Roseville ER. My aunt was waiting for us at the ER after getting a call from CC before we left and she stayed with me through the night and till noon the next day.
This next section of timing details is what I recall from my haze of lack of sleep, pain, pain meds, nausea and muscle spasms, etc.
After arriving at the Roseville ER, I stayed in a hallway near the nursing station for several hours until they moved me into a back room in the ER somewhere and my aunt was told that I would be admitted “eventually”. “Eventually” went from the initial target of 2:00 AM to 4:00 AM to 8:00 AM and then I was offered the option of being transported to Morse Avenue Hospital where they had open beds waiting instead of waiting for the new targeted time of Roseville’s noon to 2:00 PM, so I opted for the transfer to the Morse Avenue facility.
The EMTs arrived to transfer me to Morse and I asked for some nausea medicine for the ride but was told “No, they’ll give you some when you get there”. The whole reason for asking for the medicine was because I was feeling sick and expected the ride to make that feeling worse (which it did) but it was clear that they didn’t want to take the time ti administer any more meds for whatever reason. Even the EMTs looked at each other with a kind of quizzical/”I don’t understand” look after I was refused the medicine so one of the EMTs went out and asked on my behalf and was shut down as well, much to their surprise as well.
After arriving at Morse Avenue on Tuesday morning, I ended up in a room which should have held one person, maybe two at the max, but was set up for three patients very snugly. CC came by after she got off work that morning and stayed with me until she needed to go get the kids from a babysitter arranged for at the last minute. I want to make sure that I note that CC went with me to Roseville and went home around midnight, so that she could sleep some before getting up and going to work the next morning at 4:00 AM and my aunt stayed awake the whole night in the ER and also came straight to the Morse facility after briefly heading home and getting something to eat just as I was transferred to Morse.
I was released on Wednesday morning after Morse ran a series of blood tests ruling out the likelihood of any kind of heart attack. Our physician at Morse was very compassionate and puzzled by my whole plight, even appearing confused by our stagnant situation with Kaiser. My parents headed up our way Wednesday sometime to help with my care and to help manage the house while I recovered. Just stopped what they were doing and left their lives in motion in San Carlos to come up and help us.
When I was released, my K+ was at the minimum level of 3.5. We don’t know what my Phosphorus levels were during my stay this time (normal range is 2.5 to 4.5), but we do know that Thursday night, the 9th, after we went and had my labs done, my phosphorus was 5.4 and on the 11th it was 4.9. The high levels of Phosphorus help to explain the muscle pains and chemical imbalance which continue to keep me feeling like dirt, but Kaiser hasn’t treated the Phosphorus imbalance or even noted it as a concern except for Redwood City back in February where I was admitted for low levels of Phosphorus. They don’t seem to be the least bit concerned about me, let alone my lab levels which are out of balance.
I spent most of Wednesday in bed feeling like I had been run over by a truck. Thursday, after going outside to look at what Joshy thought was a huge bee, I stood up from being in a somewhat crouched position and collapsed into the arms of my mom and CC who were looking at the bug with me. Back to bed I went, still feeling like a 4 wheeled vehicle took me out.
Last night (Saturday) we went to a church service up in Roseville and then to dinner and then home to bed. Today is Sunday and we went to see Nana at her place at Eskaton since my parent’s haven’t seen her since she moved and haven’t seen her new place. We went to lunch with her and then got an ice cream afterwards and now are about to call it a day being that CC has to work tomorrow morning.
I did want to note that, months ago, my symptoms began with confusion, disorientation and then paralysis and that since February my symptoms have begun more with localized spasms, Myoclonic spasms and muscle pain throughout my body. Monday’s attack was the most severe I’ve had in quite some time. Over the past several weeks, I have had attacks almost every other day, but they have not been as severe in that CC has taken care of them herself with liquid K+ stopping the numbness and spasms.
This a my blog about my life and struggles with HKPP (a terminal disease); Conquests and set backs, relationships and the strengthened resolve of their survival.
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