Home again, home again…

Oh wait, I’ve done that already!  Well, now I need to do it again.  I’m just coming off *another* Tower stay.  Oh joy!  I went to my follow-up appointment that Wed. morning (the 3rd of July), and didn’t make it home until 5 days or so later.  Bummer.  What a way to spend the 4th of July holiday, huh?  No fireworks or cookouts or swimming or really anything fun for me this year.  Just a lot of sick, fighting, testing (of the medical variety), and much blah.  The one redeeming positive factor is that a good friend of the imaginary (internet) variety managed to get a cheap flight from MN and came to the Tower to advocate for me and then followed me home and got me all settled.  We’d only met IRL once before, despite knowing each other online for quite some time, but it was easy and fun and I am so thankful that she was able to get here and make me feel all loved.  ❤  She is leaving at o’dark hundred in the morning, back to her real life and family, and I’m going to miss the company.  The best part is that many of my other imaginary friends kicked in a few bucks here and a few bucks there to help her offset the cost of the plane ticket and rental car, and by the time they were finished?  All those $10 and $20 donations added up to enough that her costs were pretty much covered.  *That* is even more awesome, and I have been repeatedly humbled and amazed at the goodness that still exists in the world.  Sometimes.

In not so great news, this Tower stay was the worst stay I’ve ever had.  It was most certainly NOT a restful vacation as I ordered.  Pig fuckers.  I jest, but it was by far one of the worst hospital stays I’ve ever experienced and most certainly it was the most horrible time I’ve ever had with the Tower.  My doctors are freaking amazing, and I wouldn’t switch my pulmonologist for anything in the world at this point, but the rest of the staff there left quite a bit to be desired.  I am not sure how much I want to go into right now, as it’s approaching 1 a.m. and I’m ready for a couple of hours sleep before trying to see my friend off (ha, what are the odds I’m going to wake up…) so let me see if I can summarize a touch:

First day pretty good, met with docs, felt super important as my pulmo finished up clinic hours and came over and performed my second bronchoscopy in as many weeks himself.  After 5 on a holiday, the city was preparing for their big fireworks display.  I had the nurses and respiratory therapists tell me (repeatedly) that I should feel very special indeed, as they had several bronchs to do the following day anyway and it would have been no big deal to keep me not eating and drinking all night (I’d already not eaten all day because sick) and do mine with the rest of them.  The fact that he finished clinic hours and THEN came over and did it himself (I didn’t even get any students this time!) speaks volumes, and I feel like he’s doing everything right in terms of my care.  Slept a lot that night until pain meds wore off, and then was hurty and unable to get comfy until pulmos rounded the following morning and changed up my pain meds and got that under control.  And that is where the trouble began.

That day, day 2, my pain was well controlled and I was on a zillion antibiotics because they didn’t know what they were dealing with.  The trouble began when I observed my RN diverting (STEALING let’s call it what it is shall we) dilaudid right in front of me.  It was very sneaky, and requires a lengthy explanation/description, so I will forego that for now and just say that I am now 100% positive that’s what was going on.  I got my meds, she diverted an extra bottle.  At some point she also brought my percocet already out of the package, which is a no-no – they are supposed to open the blister pack in front of the patient so you can be sure you’re getting what you’re supposed to get.  Covers her ass and makes patients happy.  She brought mine in a ziploc baggie.  I didn’t question at the time, and didn’t really make much note of it until my pain was way out of control.  I’m on a lot of narcotics at home, so I tend to notice when a dose is missed.

Woke up on day 3 to a shower in my room – water just pouring down from the ceiling as if I were standing in a storm.  Dripping and running around/down the TV, the wall, splashing all over my bed, huge puddles on the floor.  It was a great way to start the day.  It wasn’t even shift change, so it was well before 7 a.m.  Luckily, they had an empty room next door that was simply missing a bed, so they managed to just wheel my bed and belongings from one room to the next.  I fault no one for this, it’s just one of those things that happens, and really would have just laughed it off if it weren’t just another thing on the pile of shit that was this stay.  In fact, I was asking people for umbrellas and telling the PCA that I wouldn’t’ be needing a shower that day since I’d already had one, and similar cracks.  It was funny.  Or I’m easily entertained.  Maybe both.

But then they moved me off that floor, which is good as that floor is the step-down unit that requires constant heart monitoring.  Moving floors meant that my HR had finally stabilized enough that I could get off the tethered monitor and put instead on a remote box so I could walk around and such and see what my heart did then.  Bad news! My nurse informed me that he was leaving at 3:00 p.m. – he dropped me on the new floor at 3:10 p.m.  I don’t think he ever gave report, or if he did, he gave it to someone who didn’t hear.  by 4:30 I was due for more pain meds, and hit my call light, and they responded to me as such, “How can I help you, Mr. Moore?”  Well, I am neither a mister nor a Moore, so this was a bit alarming.  Still, I laughed.  Until my PCA from *that* floor decided to come in without precautions… oh wait, need to back up.

I knew this was bound to get lengthy.

I tested positive for C. diff. on day 2, and as such was on contact precautions.  Meaning no one in my room without gowning up, and I had to have my own thermometer, BP cuff, pulse oximeter, etc., for monitoring because it’s quite contagious and not something you want to be spreading around the hospital.  So my PCA on the new floor waltzes right into my room without so much as a hint of a gown, and also toting the community vital sign monitoring equipment.  Which she intended to use on me.  And then take to the next patient.  *shudder*  I was luckily with it enough to tell her to go check my precautions situation before she entered, and she could not have been more apologetic and thankful.  *She* was in shock that she’d almost done that, but it was not her fault at all.  There should have been a notice on my door and gowns just outside, readily available.  Someone dropped th ball big time.

At any rate, it took forever from there to get the crappy nurse from hell (who happens to share a name with my mother so I will never forget it) who would not push dilaudid at all and told me how I did not seem to *need* such strong pain medications because I was smiling and smiling people are not in pain.  Nevermind that the only reason I was not in pain was more than likely due to the fact that I’d had dilaudid and percocet in rotation for the previous 24 hours or so.  I did eventually get my meds, but she went and got another nurse to push them (twice).  She was okay with the percocet, and I thought maybe it was an IV situation (like she wasn’t allowed to give IV meds or something?) but she hung my IV antibiotics so who knows.  What I do know is that I had a miserable time and had to fight with her for meds every single time, and I had her for two days straight.

I fought with more nurses about the pain situation, and made them call my doc for clarification and confirmation.  I guess one cannot have pain meds without a healthy dose of shame on the side.  As if I do not know that I am on strong narcotics.  I have said before and will say again, however many times it takes – when every single breath hurts, I honestly do not want to take the next one.  If I could simply stop breathing at that point, I most likely would.  It hurts *that* much.  And that is not the point to come and argue with me about whether or not you think my narcotic use is too much.  Especially if you are not my doctor.  And extra especially when I have FOUR doctors on my case who all agree (I had 2 pulmos, the gen med admitting doc, and an infectious disease doc this time).

There was so much more that went wrong, but all of that could have been managed with my pain under control.  I am such a happier person when it doesn’t hurt to breathe, imagine that.  I also tend to heal quicker, as I’m more willing to let a big ole cough come through (rather than stifle it down which is what I did for several days) or do the deep breathing that is required to get over this pneumonia yet also exceedingly painful without strong pain meds.  Yes, I realize people abuse them.  Were I med-seeking I should hope that I would choose something other than a lung disease to fake and I would probably have much better access.

Anyway, the aforementioned friend from MN (hi S!) helped me gather all my notes from this visit and compile them in a coherent document so that when my case manager comes tomorrow i can begin the Official Complaint process.  If every Tower visit were like this I would probably not even bother to go in, and that is not a good thing for my condition.  But I don’t have that amount of fight left in me any more, I just don’t.  Not even on a good day, let alone when I’m in the midst of pneumonia.

Oh, and by the way, my bronch grew something this time – mycoplasma pneumonia.  That’s good news, as it responds quite positively to azythromycin and so I am working on another 14-day course of that.  I feel so much more like myself this time around, and am pretty confident we got it this time.  I’m still without my little fellas (and missing them sooooo much!!) so I can be lazy and restful all week and hopefully do a much better job than I did last week.  No real plans other than a follow up with a gen med doc that I’ve not yet met on Friday.  Said doc works in the same practice as my former PCP who just left and new PCP that I haven’t seen yet.  Guess that was the doc who had appts available when I needed to be seen, so that’s who I’m seeing.  I’m not too worried about it, I will probably only see him/her this one time and don’t need anything other than a quick check and listen to make sure things are progressing as they should.

I’m still sure there’s so much more to the story, but that’s all you get for now.  You’re no doubt as tired of reading as I am of typing, so I’m off to rest for a while again.  Still kickin’.

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Winter Pneumonia, Round 2

This year is hard on my poor, tired, lungs.  In case anyone who reads here did not know, I’ve just returned home from round 2 of inpatient stays of this winter, thanks to a case of double pneumonia.  I woke up Sunday morning, the 6th, with a fever of 102ish and unable to drag myself out of bed.  I just did not have the energy.  I will hopefully go into more detail later, but for now? I want to relate my horrible, awful night last night that managed to get me sprung from the hospital today.

I decided to stay locally this time, rather than head to the Tower that I’m accustomed to.  I’ve only done this once before, and it was when I had h1n1 influenza, and they took very good care of me.  This time, they suspected influenza again and I agreed to stay local so as to not infect a bunch of people along the way with my transfer, and besides, they promised to be in touch with BUD and do everything the Tower would normally do for me.  And they have mountain dew locally!  Bonus!  Everything was mostly fine until last night, and last night?  Horrible and unacceptable does not even begin to describe last night.  However, yesterday afternoon, my assigned doc had stopped by, and I had told him that I felt like I was ready to go home today.  He said I’d have to make a strong argument in order for him to not keep me one more day, and I should spend my time preparing to make a good argument the following morning (this, Wed., morning).  It turned out that by the time I started relating the events of last night’s overnight?  He didn’t let me get past 1 a.m. before he said my argument was more than sound and I should start packing for home.  🙂

Started out with the realization that we had ourselves a screamer on the floor.  Poor little old man, who according to descriptions from personnel was too frail and fragile to actually fight anyone but damn he sure would if he had been able, senile, delusional, delirious, scared out of his mind and probably in pain too… he was next door to me screaming at the top of his lungs “Oh oh oh oh oh ooooooohhhhhhhhhhhh help help help heeeeeeeeeeeeeelp oh oh oh oh oh oh help me help me heeeeeeeeeelllllp!!!!:”  Followed by “SUMBITCH GET OFF ME YOU FUCKER!”  That would be when one of the nurses or PCAs went in to try to calm him and he was pissed off at their presence because they would not let him go home.

Well, turns out that my nurse happened to be his nurse as well.  And about an hour into the shift, she informed me she also had a new admission so she would be MIA for a while.  I figured I’d be low on the list of getting things done last night at that point, but that’s okay, I don’t really need much.  Pain meds on schedule, and left alone to rest/sleep as much as possible, and I’m good to go.

1 a.m. rolls around, and I was sleeping but my nurse came in to wake me for meds and such.  She needed the light to hang antibiotics, but first she had to push IV solumedrol (my lovely lung-clearing steroid), and my pain meds (ah my lovely pain meds which keep me from crying like the guy next door all night!)  First the steroids.  My arm was soaked.  She was in a big hurry, as Dude was still yelling at the top of his lungs and could be heard all over the floor, and she was trying to get back to him asap (understandably, it was unnerving).  She pushed the meds too quickly, and blew the IV, and I was getting infiltrates all over my arm/bed/blankets.  I showed her, and she said it was okay, it wasn’t blown, and that she’d just made a bit of a mess with the flush… I did not believe her, as I’ve had enough IVs to know a thing or two (not to mention a year of nursing school myself which included putting in IVs thankyouverymuch)  but I figured if I was right she’d see it soon enough.  She pushed the pain meds, which also went all over my bed and the floor rather than into my vein, and trust me, if you’ve ever had IV dilaudid?  You *know* when IV dilaudid hits your vein.  Or does not.  I told her it did not, and that it was all over my bed, but she again dismissed me and hung up the IV antibiotics.

I decided that it wasn’t worth arguing about, as I was getting nowhere fast anyway and really just wanted to sleep, so I laid that arm (with the IV) on my extra blanket and fell back asleep.  She was in my room a total of about 3 minutes, which is really insane if you consider that IV dilaudid is supposed to have a 2 min. push time, and she gave me 2 other meds in that time frame.  At any rate, I digress.  I woke up an hour or so later, around 2 a.m. with my IV obviously blown, as I was sitting in a rather wet blanket on my bed.  I buzzed and got my nurse, who came in and said that it still wasn’t infiltrates but rather, something else, like a hole in the line (WTF, really lady?) but that she didn’t have time to fix it right then so she was going to disconnect it and get one of her peers to come in and fix it for me momentarily if I would simply wait patiently.

At 4 a.m. I was still sitting in a wet, cold blanket with no pain meds in me and no steroids and no nurse in sight.  The only number I had available to call went to my PCA, and bless her heart, she answered rather timidly and came immediately and changed the bed and sat me in the chair and went and got the charge nurse who was not even aware that my nurse hadn’t been in to rectify the situation.  She set about fixing the problem with the IV, which basically meant that someone from another floor had to come and restart another IV in the other arm, and just clamp off the bad one for the moment.  Well, that someone was unable to pass meds because his ID wouldn’t work in their system without clearance, so despite being warm, dry, and tired as hell, I was still sitting there at 4:30 (heading toward 5) with no steroids, no abx, and no pain meds.  So I’d spent half the night cold and wet, all of it without sleep, and most of it without pain meds on board.  It’s fair to say that I was a mess, and I was pissed.

Now, let me say that I do not get “pissed” very often at all.  I’m a very patient person, and can wait a very long time for things in general.  However, all of that changes when every breath hurts, and I do not know when that pain is going to end.  That is key for me, I don’t know if it matters to others or not; knowing that the pain is temporary, that pain meds are coming, that there is relief in sight?  That helps me psychologically in a way that I just cannot explain, but it makes me better able to tolerate the immediate circumstance if I realize that I can have relief in x minutes.  Or hours.  Or whatever, as long as I know it is coming, and when.  If the relief does *not* come when it was promised?  Then my coping mechanisms are nil and I cannot function.  This is when I lose it, and this is where I was this morning.  The charge nurse had been in and promised that my original nurse was going to come back in a matter of minutes and restart the abx that were hanging (or what was left of them after they leaked all over my bed), and that she would be bringing a replacement vial of dilaudid for my pain and more steroids for my inflammed lungs.  Imagine then, my surprise, when my original nurse Carolyn showed up and did not have steroids nor dilaudid, but only came to reattach the IV abx.  I was crying, and angry, and in pain, and inquired to her about my missing steroids and dilaudid, and she reiterated that I had them at 1, and did not need replacements, because that was only my imagination  you see.  Those two pushes went through just fine, and it was the IV antibiotics which are rough on the veins (this part is true, the abx in question are rough) and they are what blew the vein, and I could not have any more dilaudid until 5:30 and steroids until much later in the day.

I did not lose it immediately, and I applaud myself for this.  It took great restraint, let me tell you, as Dude was still yelling, “oh oh oh oh oh oh oooooooooooooooooooooooooooooooooohhhhhhhhhhhhhhhh help help help help help heeeelllllllllp!” throughout this ordeal.  Carolyn, my original nurse, had become defensive, as she realized that implications of what I was saying – that my IV had been blown since 1 a.m., and I’d spend the night without meds.  I’m pretty sure that would require extra paperwork on her part.  However, as I said, I did not lose it immediately.  Through the tears, I calmly said, “I’m sorry you’re having a rough night. I do not wish to add to that stress.  However, I am in pain, and this is unacceptable.  If there is nothing on my med schedule that you can give me, then please call my doctor and ask him for something else.  I cannot wait another hour or more for the next round, and it is not acceptable that I have been here cold, wet, and in pain all night.”  She replied that as soon as that bag of antibiotics was over, I could have another shot of dilaudid.  I calmly (through tears, but calm still!) said “I am in pain.  This is not okay.  Please fix it, I cannot wait.  I will be expecting a response from you within the next 10 minutes.”

I was really nice.  I gave her 15 minutes.  I could not find my call light.  It had been conveniently placed across the room during the bed changing and such.  I loudly got up and opened my door, turned on the room light and started yelling down the hall myself.  I am almost ashamed of myself.  I started my own chorus of “OH OH OH OH OH OH OOOOHHHHHHHH!” until I got a nurse in my room.  Not Carolyn, mind you.  This new nurse promised to go get Carolyn, and at this point I had really lost it and was beyond angry.  I told her Carolyn was not welcome in my room, and if that was the only nurse they had available that I would gladly accept my AMA papers and begin walking home at nearly 5 in the morning.  And if screaming “OH OH OH OH OH OH OH OOOOOHHHHHHHH’ was what it took to get proper meds, well, that’s what I’d do.   Carolyn came by at that point, and still did not bother to apologize (which, IMO, should have been the very first words out of her mouth) but rather, stated again that I had no pain meds to give until 5:30.  I managed to be calm again when I said that I did not ever want to see her face again, and that she made me sad for the nursing profession, and sad that I’d had to ask for a replacement RN for the first time ever in all the times I’ve had to deal with health care professionals.

Well, after all that brouhaha (and let me assure you, I did cause quite the scene) the Nurse-Manager of the hospital finally came and pushed my damned dilaudid at 4:45 and I promptly fell asleep until my new nurse gently poked me and apologized for waking me at 8 a.m.  There had been a shift change at 7, of course, and the poor thing was probably scared to death to see what sleeping giant she was awakening, but I had meds to take by mouth and she had an assessment to do, so she had to wake me.  I harbored no grudges toward her, or really anyone other than Carolyn who could not simply admit to a mistake under stress, or even make an excuse for a demanding patient and call the doctor for a new order in the middle of the night.  I’m sorry, but you cannot be afraid to call the dr. for your patient if that’s what they need.

So, all of that to say that this night really could have gone down sooooooo much better and I do not place all of the blame on Carolyn.  That Dude was unnerving, and everyone on the floor felt for him and wanted him to be able to be calm and get some rest.  One of the many people in and out of my room during the bed-changing and IV starting and all of that made the statement that Carolyn was afraid to call his doctor and they were going to have to get the Charge Nurse to call and get him a stronger sedative or something.  That would have been a good start, and it should not have taken a meltdown from yours truly to get that guy some relief.  The guy from the other floor who started my IV said they had called FROM THE OTHER FLOOR!!! to complain and ask that his doctor be called and some solution found.  I was not out of line in complaining about “noise pollution” and that really does not begin to describe it.  You wanted the poor dude to find some relief too, it was pretty obvious from his wailing that he was disoriented, afraid, and in pain.  And if he needed someone to sit with him, and had no relatives to do so, then the hospital really should have called in a “sitter” to sit in his room and make sure he was okay.  The hospital I used to work at had “sitters” all the time, seems like common sense.

I’m pretty embarrassed about my behavior in the end, but I was really at my wits’ end by that point and normal communication was not working.  I wrote this first because they wound up having patient liasons and the Nurse-Manger of the hospital (not only the Charge Nurse in charge of our floor, although she was there too) and all sorts of people in my room and I was promised a follow-up call within 2 days, so I wanted to write it all out while it’s still fresh in my brain.  It really was the worst night of so-called “care” I’ve ever encountered, and I’ve had more than my share of experience.

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Back, Part 2

So, you may have deduced, if you were sitting here waiting for me to actually “BRB,” that in fact it took a little longer than I anticipated.  I called for dilaudid, and received it, and then needed vitals, and then blood drawn (which they always do here at 3:00 or 4:00 a.m.) and then it was time for oxycodone (they’re not percs any more because there’s no tylenol, so as to not overtax my liver, so now it’s just straight oxycodone q3h.  And then I had to pee, which requires me to call a nurse or aide in here because I’m not allowed to move because standing crashes my sats and makes my heart rate soar, simultaneously.  And then it was time for another round of dilaudid, which I received.  And then I finally had that feeling of hunger that usually accompanies my mega-doses of steroids, but for some reason this time has not yet.  So I got a few graham crackers, and ate my leftover biscuit from my KFC dinner/lunch/breakfast of yesterday.  And now I’m ready to finish my bitch fest about the ER doc at the other place.

As I said earlier, the local ER is typically pretty good to me.  They generally start me on the same protocol – solumedrol, rocephin, dilaudid, chest xray, and a phone call to BUD.  This guy, however, seemed to have a God Complex or something, and kept kicking my suggestions to the curb.  Not like living with and managing this disease for nearly 6 years now has taught me a thing about it, oh no, I’m sure his one month of general interstitial lung disease education in med school was quite sufficient and superior to anything I might have gathered from my extensive time dedicated to the subject.  I needn’t worry.  First, let me say I arrived there in a very sorry state.  My pulse was 155-160 just sitting, and if I dared to try to move at all it jumped up to 175 or 180.  They were worried about a heart attack more than anything, and I don’t fault anyone for that.  It seems like a logical conclusion, and will likely actually be the case one of these times.  Working so hard all the time is not really good for one’s heart it seems.

At any rate, for some reason this doc did not like the idea of prescribing pain meds, at all.  He started the rocephin, and he started the solumedrol, but he refused me pain meds for many hours (four, maybe?) until finally I was crying enough that my nurse came to check on me, and I threatened (no, promised) that I was going to dig in my bag and take one of my own percs very soon because that? What they had me going through (for no good reason as far as I or any of the nurses could tell) was just cruel and unkind.  But it took pitching a big ole hissy fit to get ONE FIVE MG PERCOCET from the dude.  Despite the fact that I take 10-20mg every 4-6 hours at home.  I’d been there four or five hours, and he was giving up one five mg perc.  Better than nothing, but when I’m in an exacerbation I need more, not less, and my previous records (or a call to BUD) would confirm.  But he was too good for that, for a while.  It took him running all his tests and not finding anything he could easily identify, combined with many hours of needing my room and being way backed up in their ER… that *finally* got me transferred, and another crying meltdown over pain got me one more 5 mg perc for the ambulance ride to BUD.

Since arriving here at the University Hospital, I’ve been in good hands.  There have been a few adjustments to the pain meds to make sure I wasn’t getting too much tylenol, but mostly I have nothing to complain about here.  I have a few complaints about Jerkface, as always, who came to pick up the boys and take them back to Chicago until xmas.  That will be good for me though, give me a few weeks to shop and wrap things without them being with me every second of every day, and hopefully I’ll soon be able to do that from the comfort of my Living Room.  *He* is truly an idiot, and I do not know how I did not notice that as the very first thing.

Oh well, it’s time now for another round of percs and that means it’s nearly 6 a.m. and I’ve spent another sleepless night here.  Oh joy.  I slept one night in between though, so I don’t feel as bad as I did the other morning.  And there’s always the possibility of a nap… in between pokes, prods, doctors, nurses, pain meds and management, food, and today’s echocardiogram… so yeah, probably not napping, but I can tell myself otherwise!   For now I’m going to get some oxycodone and sleep til someone wakes me!

 

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Back in the High Life Again!

Yup, sums it up pretty decently.  So many ways to be in the high life today.  Up high in the Tower?  Well, close… They didn’t actually admit me to my tower this time; they sent me to the main campus hospital instead.  So that kind of threw me for a loop, but I’m still on the 8th floor, so that still qualifies as “high” I think.  Seems that when you have heart issues, rather than the typical lung issues (or perhaps in addition to, who knows) you get to go to the “Step Down Unit” for closer heart monitoring.  Which means it’s easier from their perspective to have me in the non-Tower portion of the university.

And since my pain was out of control when I got here, and took over a day to get under control, I’d venture to say that the drugs I’m on now, at this point?  Qualify for putting me back in the high life again.  But my pain is being controlled fairly well at this point.  I was able to sleep most of last night, and took a nap or three today as well.  I’m paying for it again now by being up all night, but at least I’m not awake due to lying here writhing in pain.  That, my friends, sucks big donkey balls.  In case you were wondering.

So let’s see, the rooms here are much nicer than the Tower rooms.  The Tower rooms, because they are a part of the Tower, which is round, are shaped much like a slice of pie.  A very small piece of pie.  There is room for a bed, and one small chair for a guest (who could not possibly spend the night because there’s just no room for their feet to be up anywhere) and the typical hospital tray thingy that goes across the bed and in theory holds food trays when they come but in reality holds my laptop, ipad, and knitting crap.  There is no room to turn around in the Tower rooms, and when I come by ambulance they sigh a big sigh of relief when I say that I can get up and walk from the ambulance gurney in the hallway into the room and onto the bed.  The alternative (which I’ve had to have them do, when I’ve been really sick) is to have them bring the room bed out into the hallway, transfer me there, and then maneuver the bed back into the room.  The gurney and the bed just don’t fit well together in the pie-slice rooms, and transferring a patient in that tiny space?  Just begging for an injured back.

These rooms, however, are bigger than my bedroom at home.  Quite spacious, room for a guest to spend the night (and I even have a chair dedicated to this purpose!) and room for my bedside toilet to not be up my nose when I’m not using it.  A fan (one of those new cool Dyson ones with no fan blades, FUCKING FANS, HOW DO THEY WORK???) artwork on the wall, an extra chair, a separate bathrooom AND my very own shower if only I could stay upright enough to use it.  Nurses who write on my board not only their names and individual cell phone thingy numbers, but also what time my next pain meds are due (so I don’t keep calling and pestering them every 5 minutes for the last 30-60 minutes of my dose… not that I would do that, oh no, not I) and I’m just beside the nurses station which means I never have to put my call light  on for long because many many people walk by and well, there must be some rule about patient call lights being on, and that being a bad thing.  🙂  I’ve been very well taken care of this visit.

So, what brought me in this time was not so much lung issues but rather heart problems.  My usual pain is there, but more intense and was not being resolved with my home meds.  On top of that, my pulse was really racing, sitting at 150ish when I sat around doing nothing, and jumping way up to 170 or even 180 when I dared to walk to the bathroom or anything.  The distance from my bed to the toilet is not very far at all at my house, and the fact that I just couldn’t make it that far kind of tipped me off that I needed to be seen.  So I called Jerkface to come get the boys (he was able to take the day off and come do that, so they were happyish and I was relieved to not have to worry about them) and then called my daughter to come take them until he could make the drive from Chicago, and then an ambulance to come carry me away.

The local ER there is typically pretty good to me, and I’ve been through there enough times now that I’m no longer worried when the ambulance takes me there.  They’re not allowed to bring me clear to Ohio State, it’s a little too far and out of their jurisdiction without a doctor ordering a transfer.  So typically I go through this local ER and they call my BUD up here and he arranges for my transfer and admission under a hospital generalist here, with him as the specialist in charge but a general doc to coordinate everything.  Now, in theory this should be my new PCP since I enlisted her on my Health Care Team and she’s a part of this hospital, but she happens to be out on maternity leave right now so I still have a random doc that I’ve not met before.  But wait, I digress, I’m getting ahead of myself.  I want to bitch about the local ER first before I get back to bragging about this place.  Obviously it’s time for my pain meds and I’d better take a break, get drugged, and then come back to bitch.

BRB!

 

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Heart Testing!

I’m off to my PCP tomorrow, but will also have a day full of fun! testing.  I can’t wait!  I can’t believe it didn’t dawn on me earlier that this was the source of my recent angst and anxiety, but I was blaming it completely and totally on the election.  No doubt that had something to contribute as well, but when the election was over and the anxiety remained, well, I was forced to reconsider the source.  Tomorrow I’ll finally have the echo that has the potential to pinpoint secondary pulmonary hypertension as a factor in the recent increase in my short-of-breath feeling.  Or not.  Pulmonary hypertension (PH) can’t be absolutely diagnosed without a right heart catheter procedure, but it can often be detected via echo and as such they do that first (being less invasive and all that).  If they find nothing, I don’t know what the next step will be – I don’t know if they’re going to push further for a right heart cath, or if they’re only doing the echo to satisfy me and shut me up and will be convinced that I do not, in fact, have PH as a contributing factor.  I guess I’ll find out soon enough, but it’s BUD who ordered this test and I don’t have an appointment with him again until Jan. I think.  I’m pretty sure my PCP will refer me wherever I need/want to go, but I don’t want to step on any toes along the way since they share a computer system now.  Oh well, no point in worrying about it too much tonight, I will just wait and see what tomorrow brings.  I have the dr. appt. before the echo appt., so I won’t actually get to hear any results until who knows when, but I think I can see them online maybe.  I’ll ask about that for sure, as I don’t want to be waiting until Jan. for someone to tell me what’s up.  Waiting is enough to drive a person insane.

 

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Sepsis Schmepsis

I’m just out of the Tower again for another recent “vacation.”  This one was apparently nearly my last.  It was quite scary, and something I do not hope to repeat any time in the near future.  I started feeling rather unwell and under the weather that Monday, but I knew I had an appt. with BUD on Tuesday so I just laid around and waited rather than call an ambulance or go in to the ER.  If I hadn’t had that appointment scheduled, I’d have taken myself to the hospital on Monday for certain.

Anyway, I headed to my BUD appointment on Tuesday, and passed out during the first round of pulmonary function testing.  Not a good sign.  The respiratory therapist had to go get the doctor and he said to stop the test of course, so no pfts this time for me.  He asked if I wanted to come home and try to fight it, or be admitted to the Tower for the night and get IV solumedrol and antibiotics.  I figured I was already there, and I’d gone prepared to be admitted because I knew I was rather unwell; these things coupled with the fact that BUD and the Tower are just over an hours’ drive for me meant I opted to go ahead and be admitted.

The admission itself was not smooth, and I sat in front of the metal detector in a wheelchair at the ER entrance for two hours while they tried to find a place for me.  That was a bit ridiculous, and I’ve complained to everyone who would listen about that nonsense.  But once I was finally in a bed, my care was excellent.

That night (Tuesday), I crashed and I crashed hard.  My blood pressures bottomed out around 60/40 and I was really out of it and they said I was going in to septic shock.  They were doing boluses of fluids to try to bring my pressures up, but it wasn’t working.  Meanwhile, my heart rate was 150+ and my temperature something like 96 – all signs of sepsis and septic shock apparently.  I didn’t really realize at that time just how sick I was.  They decided to move me at 4 a.m. to the step-down unit so I could have constant monitoring.  By 7 a.m. they decided to place a central line in my jugular vein since my IVs were blown and they needed access.  *That* was rather scary, as I’ve never had a central line before and didn’t know what to expect.  In the end it wasn’t so bad, and only hurt at all because the resident who did it didn’t use quite enough lidocaine and I could feel them cutting my skin to insert the catheter.  Once they hit me with another numbing shot, it was fine.  Just sore over the next couple of days.  Scary though.

Well that night (Tues. night/wed. morning) they started worrying about my hematocrit and hemoglobin.  They were really, really low and I was having kidney problems.  They started talking about blood transfusions, but they were concerned as to *why* those numbers were so low, and worried that I had a bleed internally somewhere.  Also very scary.  They came in and did the informed consent for a transfusion, but they decided that perhaps i just had entirely too much fluid which might have diluted the h/h in my blood, and that maybe making my body release some of that fluid might bring those numbers up without a transfusion.  So they gave me until noon on lasix and then they retested to determine the next step.

In the end, I didn’t have an internal bleed and was able to avoid the transfusion.  My h/h numbers slowly came back up.  However, the lasix threw every other electrolyte in my body out of whack – my potassium was dangerously low I know, and I forgot what else was really badly off but I know it was all a mess.  So they had to stop the lasix, which meant that I had to deal with all that fluid built up in my body, and that?  Was miserable as hell.  My kidneys were so slow to wake up from their overload, and I think I didn’t pee for an entire day at one point.  I was so tired I couldn’t stay awake (still having this problem) and just overall felt awful.

All told, I was well enough to come home after only 6 days, which is a frikking juggalo miracle if you ask me.  I do/did have home nurses coming to check on me and keep an eye on things, but still.  When I heard them say “sepsis” I thought I was done.  I always think that it’ll be some secondary infection that kills me, or maybe heart troubles, or something like that.  Not my lungs.  I was left this time sitting there wondering if I should call my kids to come see me or not… is it better to give them one last chance, or better to just slip away and let them remember me happy and vibrant?  I wish I knew the answer to that.  Maybe it varies by child?  This time I had decided that if they moved me to ICU (which they were discussing as an option on Wed./Thurs.) I was going to call xhusbands and current jerkface husbands and let them decide.  I don’t know the answer, but I do need to decide for the next time.  Unfortunately I know there will be a next time.

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Sprung! A Leaky Story

So it’s kind of protocol that when you come in for pneumonia or the like and are confined to bed, you are prescribed heparin shots to prevent clots forming in your legs.  A DVT on top of the underlying lung issues would not be fun, and I’m all “YAY” for preventing that.  However, I also know (from nursing school) that it *is* protocol and that once I’m able to be up and moving around I can safely decline said heparin shots.  This time, I’ve been in bed a lot and just got the shots and didn’t start to decline them until yesterday.  I’d also had the car ride earlier in the week, so I was a little nervous about clots to tell the truth, and they don’t really bother me that much.

At any rate, my belly looks like a punching bag because they always give the shots in the belly.  This is bad enough, because it really is just like a bruise and only hurts if someone pushes on it and that doesn’t happen often so it’s not horrible really… but what *is* horrible is that I keep seeping blood and it’s been two days and it still won’t stop.  I keep getting huge blood stains all over my shirts and my bedclothes and such, and it’s totally bumming me out.  I’ve sprung a leak!

Also, I’ve been retaining fluids all week like crazy.  Seriously.  Like I’ve gained 10 more lbs just in water weight since last weekend.  Well, overnight and this morning I seem to be finally peeing it all off and I am seriously LITERALLY peeing every five minutes.  LITERALLY, people!  You know I don’t use that word lightly!  Like, I’ve had to pause writing this post three times now to go pee.  Okay, once was for a nurse interruption and twice to pee.  But still.  I’ve sprung TWO leaks!

As you can probably surmise, I’m in a crazy giddy good mood today.  I’m going home!  I’m always giddy on go-home days!  Of course, I am fairly certain that it was 90 degrees when I left home, and I’m sure I left my air conditioner on.  It is now somewhere in the neighborhood of 45, and all I have to wear are tee shirts and pjs.  Oh well.  My little guy has learned how to skype and he finds me on his cousin’s account every morning and asks if we can go home yet.  He has been at grandma’s house for waaaaay past his comfort zone limit and he is so ready to come home.  They both are, but the younger one more than the Brudder.  If I can’t make it to get them tonight, I’ll have to do it first thing in the morning.  They can’t wait another day.

On the bright side, this has gotten me out of that pesky obligation to go to Chicago for Daddy visits this weekend!  I’m far too weak and tired for that.  On the down side, I am also having to cancel the beach trip that my daughter and I were going to take next weekend for her sixteenth birthday.  I was hoping to meet up with some Imaginary Internet Friends and had a great weekend all planned, but they’ll have to go without me.  I’m just not up for it.  BUT!  After next weekend, I’ll have a daughter who can drive!  That will come in handy, I’m sure.  When I was sixteen I would run any errand for my mom just because I loved to drive that much.  I still do, really, and that sparks half my road tripping.  I enjoy the journey as much as the destination.  But I’m kind of crazy that way.  I hope she will be too, I could use an errand runner most days.

Okay, I’m out for now because I”m just waiting for a doctor to come and write me some discharge papers.  I can’t wait!

 

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Recovering

Still hanging in.  Still not up to speed.  Today I slept pretty much all day.  I woke up as usual this morning, grabbed some meds and a snack, and laid back down on the couch.  And that is where I spent the entire day.  I slept and slept and slept some more, and I still feel as though I won’t have any difficulty sleeping tonight (it’s nearing 6 p.m. now).  Obviously my body is trying to tell me that it’s not very recovered yet, and some r & r is definitely needed.  Why do I still feel so guilty for wasting today on the couch?  I’m quite sure that I overdid it yesterday with a huge grocery shop.  I felt the need to take advantage of the fact that the kids were gone and I could shop in peace.  Is that why I’m so tired today?  Is it just the pneumonia still doing its job?  My breathing and overall feeling is that I’m still improving, but not quite there yet.

On a similar note, I hope that the antibiotics I finished half a course of via IV in the hospital were not really essential to my recovery.  This sort of thing frustrates me to no end, and it needs to be remedied.  When I left the hospital, the discharging doctor said that he was prescribing an antibiotic that was kind of unusual but it was comparable to the one I’d been receiving via IV there as as such he thought it prudent to continue the course.  He said that my insurance might balk at the idea, but to have the pharmacist call this number and he’d take care of it.  Well, guess what.  That night, the pharmacist called the number and no one called back.  The following morning, I called the pharmacy and spoke to my regular pharmacist and told her the situation, and she tried again.  At 1 p.m., she called back and said that no one would return her calls and asked if I had a different number.  I called my pulmo and left a message with the nurse there, who called me back within 10 minutes and said they were taking care of it.

To make a long story short, I still do not have the antibiotic, and it is now two days since my discharge.  I do not understand the need for the jumping through hoops to get a medication.  If my doctor prescribed it, then he obviously thinks I need it.  Why the need for the extra bullshit?  Now it’s the weekend and there is no one there to approve it in the insurance office so it will be Monday before it can go through.  At that point, I’m thinking I will have either relapsed from not taking the antibiotics, or I”ll be well on my way to recovery on my own.  I don’t think I’ll *need* the antibiotic Monday, and if I do then wouldn’t I have to start over with a brand new course?  There’s no one else for me to call, I’ve called every number that I have to complain and beg for antibiotics.  It just isn’t happening.  So instead I’ll hope that what I had via IV was enough to kill everything.

 

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Adventures in Doctoring

So I went to visit my new PCP today, and what an experience that turned out to be!  I have never seen such a place.  It was more like a legal drug dispensary?  I don’t know how else to describe it.  I went in, and had to wait forever, and then was instructed that I could not see the doctor without consenting to a urine drug test.  I told them fine by me, but they would find in my system at least a couple of restricted substances that were prescribed to me and taken as written.  They said fine, and I peed in their cup, which was apparently sent away for testing and will be returned some time within two weeks.  Then they put me in the room (with the 2 youngest kids) where there was, of all things, a DENTIST chair.  Yes.  I said, “Hmm, interesting” and sat in one of the regular chairs in the room.  The nurse explained that the doctor just bought said dentist chair because he hopes to get into teeth whitening.  Uh… okay?  He is actually a doctor, right?

Well, after three hours and an exam that basically consisted only of said “doctor” listening to my lungs, I was offered a script for my antidepressants for today, and told that I’ll have to return in two weeks for my pain killers to ensure my drug test is clean and to get the records from my other docs to make sure I’m not double-dipping.  Awesome?  It took three hours for this, and he will only write scripts for a month at a time (last PCP was 3 months but laws may be different in WV for all I know), so once per month I have to go sit for half the day just to have pain relief.  It is a sucky system indeed that we have here.  I can see the need for it, but when you are so sick as I often am, you just do not feel like jumping through the hoops.  If there were not kids here who depended on me, I’d probably rather lie in bed and cry than deal with that shit many days.  I guess I should be thankful the kids keep me going.

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Our Health Care System Sucks

AKA I no longer have a primary care physician.

Today, I drove to my doctor appointment in WV.  It’s a two hour drive for me, but I asked her last time I visited (just before my move) if she’d still be my PCP after I moved to Ohio.  I really, really like her, and that’s hard to come by in a doctor and I really didn’t want to look for someone new.  Not to mention the one day I tried to call for someone in this area it was a total disaster.  I figured I could deal with the drive once every few months.

Well, I got there today and they asked if I now have Ohio medicaid.  I said yes, and the registration woman kindly told me that they couldn’ t see me.  I said I would pay for my visit if they wouldn’t accept my medicaid, because I’d rather pay $75 for an office visit after driving 2 hours than come home without having seen her and without my meds for however long it takes me to find a replacement.  The girl said, “You don’t understand, we can’t see you.  I’m not allowed to take money from you, it’s illegal as a medicaid recipient.  You have to go where your card is accepted, and that’s not here.  Someone should have told you when you made the appointment.”

I of course melted into a panic attack because I will be out of meds in about 10 days and now apparently have no PCP.  However, my doc (or former doc I guess) is frikking awesome, as they left her a message with my predicament and she wrote me 3 months’ worth of scripts so at least I have a little time to doctor shop now.

Still, how much does it suck that I can’t go where I want to go, even if I’m willing to pay for services.  The doctor who is listed on my insurance card as my PCP is not taking new patients, which cracks me up.

Ah well, I go tomorrow to Ohio State for new pulmonary function testing.  I don’t expect it to be good since I don’t feel fully recovered from my brush with H1N1.  I stopped in the lab today and my oxygen levels were 93%.  Not that bad, but not that great either.

We’ll see what tomorrow brings, maybe he can recommend a PCP for me.  If not I guess I’ll hit the yellow pages.  Sucks that I have to switch though, and doesn’t make for great continuity of care.

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