Saturday, July 23, 2011

I've been a bad blogger...

...and I need to seriously apologize to those who've been faithfully stopping in to see if I've finished the story of my flare up and hospitalization back in April. Seriously. I'm so sorry! I've been a slacker. I end up putting things off for a while because I'm not sure what/how I want to say something, and determine the best way to get it done, is to not let myself blog about anything else until I've finished what I've started. Unfortunately, that backfires, and then I'm left NOT blogging for ages. I especially want to apologize to deetipton who was sweet enough to leave me a message and let me know she was looking forward to the rest of the story, and to Charly who I had worried and has also patiently been waiting...I'll try to do better from here on out. :-/

Ok, so I had thought I'd been throwing out updates on twitter while I was in there, but apparently I was only doing that on facebook...sorry. So as a little rundown, here are the tweets you missed... :) rhuematologist was out today, n the office staff at my pcp wouldn't schedule me cause I'm selfpay...I've been sick since sun so my only option was they admitted times...
April 15 at 10:50pm
 Still really sore, but my kidney levels r getting better! And I got a semi-decent night of sleep too, which is good cause I haven't been sleeping real well since wed.
April 17 at 7:01am (Sunday)
was allowed to take a shower today! feel so much better after that, would have been the highlight of the last week, but I also got to see the rhuematologist who put me on liquid prednisone directly through my IV. so I guess they tied. can't wait for more doses and all the swelling to go down! thanks for all your prayers! they are greatly appreciated
April 19 at 10:26pm (Tuesday)
creepy male night nurse is back...awesome... :(
April 20 at 8:29pm (Wednesday)
I get to go home!!!!
April 21 at 1:17pm (Thursday)
 So to recap, I ended up staying in the hospital for a week, basically. IT SUCKED! At least in the week leading up to my hospitalization, my painful, crappy days were spent with a comfortable temp, comfy bed, and internet service. I slept most of the day away, and when I wasn't sleeping, I took full advantage of my unlimited streaming of netflix. Not so at the hospital. No internet service available, not even to plug into one. (they did have "internet" on the tv as an option, but I maintain it doesn't count, cause the print on the screen was sooooo stinking tiny and blurred that it was useless...) They did at least have cable...score one for them, but the temp in my room was off almost all the time, it was ridiculously hot in there it seemed. (and not just to me with the 103 temps, the nurses thought so too, but said nothing till I asked cause they just thought I was cold). Needless to say, if it hadn't been for that and my blackberry, I would have gone crazy! At least I could keep up with fb and twitter on my phone and swap some texts with my sister when I was bored. I was seriously bummed about no more netflix tho, seriously, I was finally getting my moneys worth out of it and keeping some of the boredom away, and then nothing...

So back to my "fun" (serious sarcasm) time at the hospital. Here's where the details get a little gross. Because of the seriously low and dangerous level of my kidney function, they made me pee in what they called "a hat". Basically a bowl with sides that hold it on the toilet seat so that you can pee into it. They made me do this so that they could monitor my input/output. (what I drank all day, how much I went) which incidentally they didn't really do. It made my mom (the nurse) pretty angry that they weren't doing their jobs. Only one of the nurses I had actually asked me what/how much I'd had to drink all day. Most of the aides would mark when they emptied it on the sheet (which they leave on your stuff), but they always took forever to come in and empty the stupid thing, and I often had to page them again and wait for them to come do it so I could pee again. Yeah, I HATED that thing. Around about Tuesday night, or Wednesday, the one nurse had checked with my dr and said I could stop using it and I was super happy, then the nurse nazi (the one who actually charted my intake) said I still had to do it and brought it back, I was irritated, to say the least....

So that was the interesting/gross part. Lets see....other details....(this is what happens when you let two months or more pass before blogging...oops! in my defense, I would have blogged through the whole experience, but there was no internet! sigh...) I was on 24/7 IV fluids with two different daily IV antibiotics, which is why they wouldn't let me shower until TUESDAY! I know, I felt completely gross, so it was a big accomplishment in my eyes, I felt so much better. They had to get special permission from my dr so that I could, because they had to disconnect my IV while I took one. (another tell on how bad my kidneys had been faring...) Tuesday was also the day that one of my Rheumatologist'sdr requested. And let me tell you, if he'd been my actual rheum dr I would have cried and still be looking for a better one. I was not a fan. He had my chart, but not sure how much of it he'd reviewed, and had me go through my whole  prior experience with symptoms/medications of ra/mctd. THE WHOLE FRICKEN STORY.  Which is fine, whatever, it was in the chart, but hey, I have nothing better to do than to pay you 350 to come in and listen to me tell it again, when you could read the cliff notes from my chart. Didn't care so much about that, fine, they all make you do that, but he made snarky comments through the whole thing, and really made me mad when I got to the part where I'd stopped taking the Plaquinel and he told me: You have a habit of discontinuing medications that are working for your own selfish reasons. NO KIDDING.  If I'd had the mental capacity to respond (shock had me speechless) I would have told him this: Seriously, its not as if I stopped medications against dr's orders when I stopped the Enbrel. I had an intelligent conversation with my Dr where we discussed the reasons behind me wanting to step down off of it and see if I needed it anymore. We did it gradually, monitoring my liver, rh factor and other things with my blood work, and testing each lower level to see how my condition may have gotten worse. It did not. I had started taking Omega-3 supplements prior to starting to step down to prep for it, and gradually stepped up on doses as we stepped off of the enbrel. I ended up feeling great and not needing the enbrel anymore. Which not only I thought was fantastic, but my rheum agreed was a good sign as well. (not to mention it made not having ins less of a threat, as the cash cost of enbrel--when I took it-- was around 1500 a month...) And as for the Plaquinel, I experienced the lovely eye issues that are listed as possible side effects, the blurriness and pain in my eyes from minor contact with anything was just too much for me to handle anymore. Couldn't do it. sorry. I informed my dr right away of the fact that I'd discontinued using it (which they'd told me to do if I experienced any problems) and though she wanted me to try the brand name and maintains I hadn't taken it long enough to have experienced any side effects, the problem didn't occur till I was taking the medication, and it went away after I stopped, so me and my body disagree. I take offense to the implication that I was/am doing anything to inhibit my own health and healing and actually making my condition worse than it has to be. Thats just rude. Not to mention the fact that I know my body and the way it responds and reacts to medications and other factors better than you do. I have to live with the side effects. I have to live with the pain. I have to live with the risks. So you can just take your piety and stuff it! Ok, that last sentence probably wouldn't have left my mouth, but I'd have totally been thinking it!

Anyway, regardless of the fact that he lacked tact and I didn't like his attitude, he finally gave the orders to start me on Prednisone and even brought in the first dose to be administered via my IV to really jumpstart the process. YAY! I cannot do justice to explaining the complete massivity (is that a word?) of the swelling. I took no pictures cause it was disgusting. I couldn't even fit into my clogs anymore, my fam brought in flipflops for me, and my mom bought me new socks (my reg ones were cutting off my circulation) and even those got super tight and I couldn't fit my whole foot into them (the flipflops that is). I only wore the socks when I had to go other tests somewhere else in the hospital, or I was freezing.) My legs were so large in diameter I couldn't wear my regular sweats, but instead wore my seriously comfy gaucho like yoga capri pants. The swelling took away any indication that I had ankles, and my feet were so large and fat that I could barely walk, so it didnt really matter if the shoes fit. I find it funny, btw, that the sign outside my door listed me as a low fall risk, cause  I seriously almost fell the first few times I got up, and I had a hard time getting in and out of bed. I used the IV pole to help support myself in the three feet between the bed and the bathroom. No joke.

Not only did it take until day 5 for them to get my consult and prednisone started, but it was three days until one of the nurses (my favorite night nurse, I loved her! she even called my dr twice when she had different concerns, which I'm sure he didnt love; as again, she was the night nurse..haha) took my pain level 9 of 10 (and I was editing that, who takes you seriously if you tell them you're at a 12?) as a concern and asked me why I was experiencing that much pain. I pulled back the covers and showed her my sad legs/feet. She took one look got concerned and went out to check my chart. She came back and told me that there was not one, but THREE different pain meds listed that I COULD HAVE BEEN TAKING THE ENTIRE TIME, and would I like some? I can't begin to tell you how annoyed I was with all the previous nurses. I'd been giving my 9 the entire time, and not one of them asked me if I'd like anything for the pain, or thought to mention that I could take something. No one told me the order was there, and I didnt ask, because I just thought that I wasnt able to take anything because of my kidney problems. I HATE the fact that someone in the mid-20s is not taken seriously when they voice pain, and thought to be taking advantage of pain medications, which is the only thing I can think of as being the reason why none of them mentioned it in the three days prior. The 3 different pain meds were 3 different strengths, of which I took the strongest, and it brought my pain level down to a better handled level 6. And once I knew of its existence to my possibilities I was taking that every 12 hours as allowed, and it made my days, and nights much more pleasant.

Other experiences included a second chest x-ray later in the week, which verified my bronchitis had moved on to pneumonia, yay me.... My oxygenation reading got low enough that they put me on oxygen, and had a pulmonologist come in to see me. and they made me do that stupid breathing treatment another three times, with no success with any of them before they finally gave up and put me out of my misery and stopped ordering them. The pain in my chest when breathing meant that the pulmonologist  ordered a cat scan with contrast and a heart sono. Which required a heart specialist to read, can you see how all these charges kept going up through the roof? I could, and it kinda freaked me out. I can't remember when they started the o2 but they started lowering the level I was getting on Wednesday, and on Thursday they took it off to see if my o2 level was maintaining normal levels on my own so I could go home. One thing I discovered while there, that I highly recommend to all lupies/mctders out there is Tessalon pearls. A cough medicine I hadn't known existed before, but works so stinking well, I was finally able to stop coughing to sleep! In fact when I got a sinus infection a few weeks ago, I asked for a prescription. I also had a low enough magnesium that they gave me an IV full of it, and later added the pill version.

I mentioned somewhere above about all the charges adding up. And that is a nice way of putting it. I couldn't believe it when I started getting all the bills in the mail. I was literally afraid to open some of them. The one from the hospital the most. Seriously. It was too big to go in a normal envelope. It came in a 6x9 and was pretty thick. There were nine pages listing all of the charges, which added up to around 27,000 dollars. I later got an addendum of sorts which put the charges up to over 28,000. And again, thats just for the hospital charges.  I couldn't believe the fact that the room itself cost over 840 dollars A DAY! This was no 5star establishment, let me tell you, and it was a few days before I even ate much to speak of. Constant IV fluids are also pricey, and then theres the multiple blood work, the various tests they ran, and my daily medications, which I was not allowed to bring in my own. No, I instead got to pay them ridiculous amounts for them to provide them for me. Yup. So kind of them.

To top that off, there was also a 350 charge for the Pulmonologist visit. Another 400 something for the two visits from the rheumatologist (and I never saw him the second time, I dont think he actually came in...) A combined 750 for all the EPN (Erie Physicians Network) drs which included the ER doctor and my pcp who came in daily. I'm happy to report that EPN has a charity program and wrote off the whole 750. I was super relieved to not have to worry about that anymore. The hospital also has a charity program, for which I've applied, but am still waiting to hear if I get it. I had to first apply for Medicaid (again) and wait for that denial to come in so that they could verify I was ineligible for it to apply for their program. I then had to gather all the other charges and bills I incurred, my taxes from the prior year, my last months bank statements, etc to supply with my application to prove to them just how poor I really am. I'm still waiting to hear if I was approved or not, they told me it takes 3 months to process before you find out. I've basically been assured that I should get it from one of the financial ladies who came to my room to consult at the beginning of my stay, so I'm not worrying too badly, yet...

My complete total, the last time I tallied it up anyway, was around 30,000 dollars. For a week. It takes your breath away to think about having to figure out how to pay for all of it. Not to mention the fact that it rivals my school loans in being my larges debt owed, it may even exceed it... If I don't get this charity program, I may just be in debt for the rest of my life.... I'll be sure to keep you all posted as to what they decide, and what comes next! Thanks for your concern, and again, I'm sorry it took so long to finish my "little" story...and that it probably took you over 20 minutes to read about it...haha.

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