The Last Hospital Visit

24 February 2014

So it looks like instead of writing like a timeline of events, I will be going back and forth from the past to present. I will have to re-read my first post later to see what I missed and other questions I may have had at the time in the hopes that it will help you.

When I first started this blog I hoped to write more frequently but was hospitalized on Thursday and although I was released on Saturday, I am still not feeling well to do a lot of things. I thought that the exhaustion that only people who live with Lupus can fathom, as it seems like others take it for laziness, was bad but I have felt even worse in the last few months since my first hospitalization on December 14, 2013.  I will just talk about the latest one here for time’s sake.

This time I went to the Urgent Care because I was feeling terribly weak, I couldn’t tell if my heart was beating too fast or too slow but I was aware of it, I felt like fainting, and my colleagues told me that I was pale… I am not the type of person who likes to go to doctors or make a big deal out of anything. I will work through the worst of my pain, even if I feel sick… up to a point. I finally went to see someone during my lunch hour hoping to be back at work within that hour. I ended up having to draw blood, doing a chest x-ray to make sure there was no fluid in my lungs like there was in December, and to do an EKG. The UC (Urgent Care) doctor was fantastic and although I had to wait for a long time because he also wanted to talk to the Cardiologist for some reason, I was patient. I know how it feels to be dismissed by doctors and I don’t like it.  He took his time with me which made me feel that my health was as “important” to him as it was to me.

All of the results came back fine but my sodium level had dropped again. He said it wasn’t as low as the first time I was in the hospital but enough that he was concerned about possible seizures (I was not aware of that possibility). He said that he wanted me to be admitted into the hospital so they could observe me and hook me up to an IV but he wasn’t sure what the hospitalist would say. So we awaited that answer as well. The Hospitalist agreed and I waited for them to prepare a room for me.

They thought I would just stay overnight but I stayed for two nights. I had already expressed to them the importance of me leaving the next day to make it to my 11:40 am appointment down the street with a visiting doctor. Having no Rheumatologists on the island, there is one at this time that flies down a couple of times a month after the initial consult visit on O’ahu. This was my second visit and I felt it was important for me to see him. I didn’t want to ask him to come to the hospital to meet me, and even then it sounded like he couldn’t because he didn’t have what is called “hospital privileges” at that facility. The hospital did a few different tests on me. As far as my heart, the Hospitalist said it was a “PVC,” Premature Ventricular Contraction. He described it as an extra heart beat. I read about it and it sounds like it’s okay for otherwise healthy people and may be nothing. However given my medical condition, and being diagnosed with Congestive Heart Failure on my December hospital visit, I was still a little concerned. My PCP (Primary Care Physician) just wrote a referral today for to see a Cardiologist. I’ve learned that it’s better to be safe than sorry with Lupus, especially when it has been active like never before.

I left the hospital after a night of debilitating migraine headaches.  I have never experienced anything like it in my life until December of last year. I used to see a Neurologist a long time ago when I was still living in Las Vegas but he couldn’t seem to do anything for me.  Maxalt didn’t work. Frova worked sometimes but my insurance wouldn’t cover it and it was over $300, so he would give me a few samples on each visit. He ran a lot of tests at the time as well to rule out the possibility of something major being wrong with me but there were no substantial findings. I found that a lot of times the answer was merely, “it’s just the Lupus.” Not very reassuring as I once thought doctors had the answer to everything medically related. My directions from the hospital was to make an appointment with the Neurologist, to follow up with my PCP in a week, and to stop taking Lasix because he thought that might have caused the drop in Sodium. I was taking the Lasix for severe edema that I started experiencing due to my loss in kidney function as it wasn’t filtering out all the “wastes” as it should. I am to take it on an “as needed” basis.

My mom took me to see the Rheumatologist down the street as soon as I was discharged from the hospital and no one was there. I called his office (and left a voicemail) and then “Physician’s Exchange” to try to get a hold of him. Finally someone from his office got a hold of me and basically told me (I don’t want to get into how angry I was especially because of how I felt, leaving the hospital when I should’ve stayed as I was feeling worse with the onset of the headaches that can last for days), that my appointment was set for O’ahu. When I initially made the follow up appointment I reconfirmed with the girl that scheduled it, that it was for Kaua’i and she said yes. He will be here again this coming Thursday. So far I have an appointment to see my new Neurologist and Rheumatologist on Thursday, my PCP on Friday for my post hospital visit, I spoke to Cardiology today kind of hinting that I would like to come in on Thursday if at all possible (even though I know that I was hoping for something impossible and thought I may need to wait a month or so to see him) but she said she actually had a spot on Thursday and would “hold” it for me until tomorrow when my doctor sent them the referral. Then I just have the pending Neurology appointment. Lovely. You will find out soon that I am sarcastic, sometimes humorous, and then sometimes I just make myself laugh (which is fine with me, it amuses me). I have to though. It’s always been in my nature and if I don’t, I would go crazy at some points.

I had a note to go back to work tomorrow but I’m still not up to par, no matter how much I try to kick myself in the butt and go into work as I am stubborn and have strong work ethics which sometimes takes precedence over other things, including my health. But right now I think I need to take it easy or else I might have to stay out even longer. I was unstable yesterday just walking and tripped going UP the stairs. TWO stairs! Very pathetic, almost comical but not.

I had my sister chop off my long hair yesterday. I felt it might help with the headaches, if only a little, plus I needed a change. I thought it would be good for the soul. I’ve been depressed lately because my Lupus has never been this bad before and I’m scared because I don’t know what will happen or if all the medication that I am on will really help or not. If Cellcept doesn’t work to get my kidney function back to an acceptable level, the next course of action is Cytoxan. I’m not sure how I would deal with it all including losing my hair so I hoped by chopping it off, it would help me cope better in the event that it should happen. My intention is not to make anything sound dreary, I’m just posting my experience, and hoping that everything will end up happily ever after to give you hope.

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