I did my three days of orientation starting on January 31st. For the most part, it went well, but... the weather was the coldest it has pretty much ever been in Austin and we were having rolling blackouts. It was tough getting up early enough to get into Austin at the Renaissance hotel by 8:30 a.m. Anyone that knows me knows I am not a morning person AT ALL! If it is before 10 a.m. I consider it "the butt crack of dawn!"
The first day of orientation was smooth. It was actually in a building next door (walking distance) from the hotel. The second day, since I knew it would be very cold, I had mom drop me off at that building. Only to find out that after breakfast we would be moving to the hotel... GREAT! Well for everyone else, this was simple... there was a quick stairs cut-through to the hotel. For me... I had to go about 200ft to the front of the hotel, go to an elevator clear across the huge hotel lobby, go downstairs, then to the room we were in. Someone walked with me luckily. However... when lunch came around we were told to go back to the other building... well everyone kind of took off... by the time I got to the building, everyone was in; seated, and eating. I got stuck outside in 16 degree temps and couldn't get in the building. I was out there about 5 minutes before (luckily) my manager was lagging behind and found me there waiting and hollering for help! LOL! 5 minutes may not sound like much, but imagine 16 degrees, not including the gusty wind, and I had no jacket either! I just doubled up long sleeved shirts because I figured we would be inside all day!
Luckily, the 3rd day, we stayed in one place and got lucky that we had a short day and got out of orientation by noon.
I was exhausted by the end of the 3 days of orientation but excited as training started the following day at home. Our training would be 4 weeks long, Monday-Friday, from 9 a.m. to 6 p.m. (which I wasn't crazy about, but that is ok). I finished up the week with training on Thursday and Friday, and then BOOM! Monday I was feeling sick! I immediately got an antibiotic called in, started my nebulizer treatments and all that good stuff. But I was running a fever too which wasn't good. I made it through Monday, BARELY, and I was miserable. On Tuesday morning I was already in BAD condition. I was throwing up and couldn't keep any of my meds down, so off to the ER we went.
I was crying the whole time in the ER because here I am with my dream job, I had gotten past the first hardest part, and now I was very ill. I know how it goes with me... I am not sick just for a day or two... I become deathly ill quickly and for weeks at a time. How could this be??? I hadn't been sick like this in 4 years! My mom and dad called my boss. I was so blessed because apparently he had been told a lot about me by former Dell coworkers that now work for Apple and could attest to work ethic. He went to the highest possible person in HR and he said if I could be back by Monday, it would be ok and he would catch me up in training.
So of course within only 24hrs. I had pneumonia and had to be admitted to the hospital. Well with me being a total invalid when I am not in my chair, it was understood by the admitting docs that I needed to be put in IMCU and not on a regular floor because I needed the extra attention.
I spent 4 days in the hospital, the doc that was taking care of me I barely saw and when I did I questioned a lot of things. First of all, I questioned his title because I wanted to be seen by a pulmonologist. The nurse asked him and he said he was (I looked him up when I got home and saw NOTHING saying he specialized in pulmonology, that he was a hospitalist/internal medicine doc.) He then stated he didn't think I had pneumonia because the x-rays only showed a few spots, and ordered a CAT scan. He said if it came back negative he would send me home WITHOUT antibiotics... WHAT???!!! Yeah, he says because of all the negative effects that antibiotics have... umm... duh? But I think me not developing secondary infections takes precedent over what could happen if on antibiotics... not to mention... I have been on so many antibiotics through my life and been fine! So, the CAT came back positive for pneumonia... duh again... and then he got aggressive with IV antibiotics. There was another day before this that I know for a FACT they didn't give me any antibiotics and they kept swearing they did and the doc made a point to say "you haven't missed one day of antibiotics" every time he came in.
Then he tells me about how he wants me to do a swallow study because "we need to find out why you get so many pneumonias"... what? I have muscular dystrophy and can't cough! He thinks I may be aspirating on food... which can be a culprit in some MD folks, but I would know if I am aspirating and as long as meats and breads are small enough, I have no problems with swallowing at all. Bottom line is, I get pneumonias because of my inability to cough... period. This isn't my first rodeo!! I have dealt with this my whole life and I think I know my body better than him! Well anyway, I denied the study.
Then the 3rd day, he decides he is going to move me to a regular hospital floor. Boy was my mom PISSED... not only that, but I couldn't even push the nurse call button and they promised to get a button that I could use with my mouth for quadriplegics, but of course they move me and then can't get it! I had to holler from my room to get a nurse, and even then sometimes they wouldn't hear me. What if I was choking on my own secretions?? I can't even move my head!! I wanted to get in my wheelchair, but I was having to go to the bathroom every hour because of the IV, which might I add I started getting skin breakdown from getting on and off a bedpan, and from laying in bed so long. But, realistically, the nurses would have had to be getting me in and out of bed all day, which an IMCU floor can barely do, much less a regular floor!
So by this time, I had been on strong antibiotics for 4 days (I think 3 though!) and knew if I didn't start moving I would get worse, weaker, and could actually end up bedridden if I stayed any longer. When it came time to talk with the doc, it was a nightmare. We explained the situation and how I NEEDED to go home so my mom could take care of me as needed. Well, he refused to agree to let me go home. We tried and tried explaining that we knew what was best for me and I could NOT stay another 24hrs. He kept going into mumbo jumbo about my disease like he was an expert and I didn't know squat... he kept bringing up the swallow study and I told him "look, I will deal with that when and IF needed, but for now, I just want to get better from this pneumonia, not analyzed after 33 years why I get pneumonias!" He got REAL snippy with us... he refused to send us home with any of the scripts for nebulizer treatments, nausea, etc. to get us through it at home. He said all he would do would be antibiotic, because if he wrote the other scripts, that meant he agreed on me going home!
Lesson learned... we went to a hospital that is new and nearby, that we have liked for ER stuff but never been admitted. We should have gone into Austin to the hospital my pulmonologist works at and we wouldn't have had this problem. I will NEVER go to that hospital again for respiratory issues!!! They do not have the resources or knowledge to take care of complex disabled people!
Needless to say we called my pulmonologist... he was PISSED and said "go home!... you know what is best for her! and I will get you any meds you need"... HALLELUJAH! So we were forced into signing an AMA (against medical advice) form for the FIRST time in ALL of my hospital stays! Which, come to find out, I was told that my insurance MAY deny my whole hospital stay because I signed that. Trust me, I will appeal that if it happens!
Over the weekend, boy did I start coughing... which I knew would happen because I was actually moving things. It is amazing how much stuff was just sitting in my lungs rotting and would have gotten SO much worse if I had stayed! Mom and dad worked on me non-stop with nebulizer treatments, CPT (chest percussion therapy), and cough assist machine. Along with supplementing with oxygen. I was still VERY ill by Monday, but I was able to make it through training for the rest of the week. My fevers didn't break until Friday! I got caught up on the 4 days of training I missed within a day and a half, and got caught up to the class within that time. My boss was kinda shocked... don't underestimate me! I am an overachiever and if I want something bad enough, it will get done no matter what!
Today is literally the first day I have felt about 97% normal. I got out of the house today for the first time since orientation week and did a little shopping which felt good. I made it over a very scary hump, and it can only get better from here. Once my training is over, my schedule will be 4 p.m.-1 a.m. which I actually really like... I am a night owl as most people know!
They kept saying how good my lungs sounded, I was barely coughing, but that is because I wasn't getting up out of bed!
Yikes!
ReplyDeleteHope you're feeling much better now that you're out of the hospital and back in friendly territory!!!
'Lucy'
hello there - just came across you while surfing. Started reading and couldn't put you down (just like a good book ) I am sure lots of people tell you that you are an inspirational person and they are quite right xx
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