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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Ugh.

Fair warning: this post is whiny and depressing and sad, and if you’re looking for uplifting or hopeful or anything in the positive realm, you’re in the wrong place. But that’s where I am today.

I hate this feeling. I guess I’m not in a good place, and I don’t like it one bit when I’m not giggly and woo-hooey. Teary-eyed and sad and frustrated and angry just isn’t me, and I hate it when I’m stuck there. I suspect I’m fighting too hard for too much, physically, and that’s leading to a few problems. First and foremost, I suspect I’ve kind of had a step-down… this is kind of what usually happens, or so I hear, with IPF. You go along go along go along holding steady… and then something happens (or sometimes nothing happens, the disease just decides to jump) and all of a sudden you’re at a lower level of functioning and you realize that you will never ever return to that previous level. For a while, you convince yourself that it’s a fluke, that it’s a cold, that it’s an exacerbation that will pass and you will “get back” to that higher level. But after a while, you settle in to your new normal and go on about your day, because really what else can you do?

But this is the part of this being sick business that is so fucking hard. Most days, I feel like I’m okay with my diagnosis. I am, quite frankly, ready to move on from this embodiment. It hurts. This body hurts. Breathing fucking hurts. It’s only for my little guys that I feel any responsibility to hold on, and for them I will hold on as long as I can. Most days, I feel like I can make the most of the time that I have. I am busy doing all the things that I should do, and maximizing our time and all that jazz… and I’m pretty confident that some day, when they’re all grown up and I’m long gone, they will be able to look back and know that I loved them wholeheartedly and that I really tried to give them all the tools they’d need to navigate this life. But when I wake up day after day after day and I struggle for breath and I hurt and hurt and hurt and relief just isn’t there and I realize that it never will be? Those days, I want to give up. And that’s where I am right now.

It’s hard to accept that I’m worse than I was a year ago. I know it, I expected it, it’s not like it’s a surprise. But I think it’s really hit me since I came back from traveling. I pushed myself hard this summer, and I knew it, and I think I was in decline even before that… maybe I never bounced back from the sepsis last winter. Hell, I’ve already survived h1n1 and sepsis, two things that have taken many in better health than me so I suppose I should count my blessings that I’m still around to face another cold and flu season.

Today I took my daughter shopping for homecoming dresses. We were both reminded that the last time I was due to take her shopping for homecoming, I was in The Tower and we had to shop online and we had a really hard time finding something that she liked and in her size. Apparently size 8 is very popular.  Anyway, she can see that I’m hurting (she’s 17) and I don’t know how much to tell her. I know that she knows that I’m pushing, but I also know that she appreciates that and loves the time spent, so I will keep pushing. Tonight, however, all I can do is sit in front of the TV and computer and cry while the little guys play games on their computers, because I just don’t have anything else left in me. I’m so thankful that they’re old enough now to entertain themselves sometimes, but I wonder and second guess myself all the time. Am I doing right by them?

I don’t know. I don’t have any answers. I’m sad. I don’t wanna be sick any more. I don’t want to hurt any more.

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Down, not out

I think I am stuck in pessimist-ville, and I do not like it here one bit. I need a pronto return to optimist-land, where the skies are sunny and blue even when it rain. Or something like that. I think that perhaps the trip really took a toll on me, and I’m still not fully up to par, but that’s not it really. I’m preparing to head out for ChickFest, and super-dee-duper excited about this fact, and yet… i’m aggravated because my body/lungs do not want to cooperate. The boys are with JF so that I can rest up before the road trip, more or less, and I even sent my car away so that I have no choice but to sit in the house and recover and rest. And so I look wistfully out the window at the beautiful blue skies, and think of all the places I still haven’t seen. Oh well, they can wait for another day, today I’m closed.

I’ve been fighting off some cold or something for a week now, and it just comes and goes and I am just so sick of being sick that I’m sick of hearing myself say that I’m sick of being sick. I’m not *that* sick, and if I were of normal health I would say that perhaps I have a whiny-baby-man-cold. But I’m not of normal health, and so nothing is ever so insignificant and I hate that I have to worry about every little sniffle and cough. I have this pain that is kind of a new pain, although it’s happened before and I’ve written about it before. It keeps returning, and it returns worse than the previous time, and this makes me think that perhaps it’s not a broken rib after all. Perhaps it never was a broken rib. Perhaps it’s something Terrible and as of yet Unnamed that causes Pain and horrible things in lungs. But then again, my BUD takes pictures of my lungs so often that I don’t think they could miss Something Big in there. So perhaps they’re just not telling me. I usually try not to put too much into one bad day, because I have so many ups and downs and I know that generally tomorrow will be better. But there seems to be a trend lately, and that I do not like one tiny bit, oh no no no no thank you.

Here’s to hoping that this stupid baby man cold goes away before Tuesday or so, so as to maximize my chickfest enjoyment. I have plans, yo! And cheese! Forced down time is not my bff, oh no.

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Moving on

That last post makes it sound as if I’m some embittered and jaded obsessed ex-wife or girlfriend, and I hate that I even have to consider that I come across that way in print.  Yuck.  It’s not that way at all in reality, although some close friends might beg to differ if you catch me on a day when he’s just left or I’ve just spent a lot of time dealing with his bullshit and haven’t had the chance to unload.  In actuality, I try to devote as little of my precious time as possible to his stupidity and focus my energies on the positive things in my life instead.  That said, the negative shit has to get out somewhere and I get tired of listening to myself even, so I just put it all here.  Nice and condensed, and if I ever forget and wonder why I was so angry with him I can refresh my memory with ease.  Plus, I don’t like to say negative things in front of the kids and really try to keep the negative attitude hidden from them as well.  Putting it here allows me to keep a cheerful front for the most part.  Which, I’m going to need again because I’m heading back to Chicago tomorrow.  Heaven help me.

I’m just so tired.  Not regular tired.  Just tired.  Tired of fighting, tired of the struggle to breathe, tired of trying to be the bigger person, trying to put the kids first and it’s not so easy or cut and dried sometimes to see what is the best course of action and what will be the least hurtful to them.  Especially when it seems or feels like you’re the only one who is capable of considering their needs before your own.  I don’t know.  I don’t have the answers.  I have all the questions, but no answers.  Why do we all approach things so differently?  I’ve been doing some reading that has really touched me on a very deep level, and some of the things I’ve read make me wonder how people go on in the face of some of the atrocities they’ve witnessed.  I have put down my book on more than one occasion and just thought that I would lay down on the ground right there and give up, life would not seem worth the fight to me at that point.  And yet, the kid in my book fights on and does whatever he has to do just to survive.  Life itself is precious enough, the drive to survive, the innate instinct to stay alive at any cost is so strong… I have to wonder if it differs.  It must, as just about everything does – variation is a fact of existence, is it not?

So what makes one person trudge on and fight to stay alive while others take their own life rather than face the obstacles that seem insurmountable?  And when is it okay to give up?  And who gets to make that call?  See?  So many questions, no answers.  I don’t think I can ever stop fighting until my kids tell me it’s okay to do so.  But sometimes I’m just so tired.  It really sucks to struggle for breath, and it sucks when every breath hurts.  It sucks to not be able to lay down and sleep how you want because on one side your belly is too big (and hard) from the prednisone to lay on and on the other you can’t breathe when you lay flat.  So you’re left with side-lying and one side is permanently injured and hurting from lung surgery damage, and the other side is not the side you’ve ever been comfortable sleeping on.  But those are the least of your worries, because most nights you’re too worried about everything to sleep for long anyway.

Yeah.  I’m just tired.  But hey, it’s a beautiful sunshiney day and there is baseball in a couple of hours so I’m going to get out of my funk and go outside with my boys.  Keep trudging along, what else can I do?

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Percs and Pain (again)

I have to come back to this topic yet again because my life has returned to this problem, yet again.  My lovely PCP informed me at the end of Sept. that he was leaving the clinic he’d been practicing at and would be opening his own practice.  He said it would work out better for me in the end, as he intended his new office to be closer to my town and I wouldn’t have to drive an hour and fifteen minutes to see him once he re-established himself.  He gave me no real time frame for his length of absence, and I tried not to panic as I wondered who else would oversee all my complicated issues and who would write the prescription for my pain management in his absence.

I decided that it might just be easier to stay with the clinic and see one of their new docs, since they’d sent me a lovely letter in the mail informing me that my PCP had left and I needed to select a new doctor.  The letter explained that either one of their other two doctors would be more than happy to take over my care where PCP had left off, and they stressed the continuity of care and remaining within the same practice and all that jazz.  I figured that things were pretty stable at the moment, and I don’t need any changes to meds or anything like that, just a continuation of the status quo and someone to write the same prescriptions I’ve had for years now and keep an eye on my bloodwork, so I made an appointment with one of the other doctors there.

Said appointment happened to be on my birthday, the middle of November, and so I drove the hour and change to the clinic and met with my new doc.  She entered the room and said hello, and immediately proceeded to tell me that they were not a pain management clinic and could not write prescriptions for percocet and that I would need to be referred to a pain management specialist.  Oooookay.  She was harsh and rude enough that I burst into tears, and she went off on a tirade about drug abuse and heavy narcotics and the problems we have locally while I sobbed.  I did manage to explain that I was not asking for a change in meds, just the same regimen I’d been on for the past several years.  She refused, and said only that they’d call with a referral to a pain clinic.  I asked her to make it be a clinic local to me so as to not have to drive an hour and change, figuring that if I were going to switch then I might as well make it more convenient for myself.  In the meantime, as far as she was concerned I could just quit percocet cold turkey – not her problem.

Two weeks later, and their office finally called back with a message about the referral.  (I should note that I was not out of percocet during this time but ONLY because I’d been using less than prescribed since starting the fentanyl patch earlier this year and had a little extra stashed) Turns out there is only one pain clinic in my town, and they can’t help me because they “don’t treat lung disease.”  I suppose I should show up and say my joints hurt and my back aches?  I don’t know, I don’t have the answer.  I did a little research on my own and found a place called Palliative Care, which seems to be connected to hospice but is more for long-term chronic illness rather than end of life comfort.  Of course there are none of these practices in my town, but there is one in the town where the PCP clinic is, and one at Ohio State with BUD, so I thought I’d investigate *this* route as a means to symptom and pain management.  They seem to be unafraid to address these issues in people like myself, so it’s worth a shot, right?

Well, I called the one in Clinic-Town myself and after being transferred about 800 times and hung up on and called back and just generally bounced around, it was determined that they could not help me.  They really wanted to set me up with hospice, despite the fact that their website advertised palliative care as well, and they wanted to set it up in my home.  The problem was, they couldn’t because I’m not in their county, and they wanted to find someone in my county… only there *is* no one in my county.  I am quite willing to drive, but they are not set up that way and therefore, no help.  I was so frustrated from dealing with all of this that I thought maybe I’d ask my PCP Clinic doc to set up a referral to the Palliatve Care Center at Ohio State.  So I called back there and talked to the same woman who had informed me of my inability to be referred to a pain clinic, and asked her if they could refer me.  She had never heard the word “palliative” apparently, and made me say and spell it over and over and over and over.  It was soooooo frustrating (for both of us!) and in the end I was yelling at the phone, “P as in Peter, A as in apple…”  Still, when she repeated it back to me she had T-A-L-L-I-C – which, I have no idea how she got T from P as in Peter, but okay.  At that point we were both super frustrated anyway, and she said, “I’ll speak to your doctor about this and I’ll call you back.”  It’s been a week now and I still haven’t heard back from them, so who knows.

So now here I am again with  no pain relief and no doctor (well, technically I have one but we do not like each other) and limited options.  I don’t know if palliative care is something I should be pursuing or not, and I don’t know who to ask.  My appointment with BUD is not until Feb., and I will be out of percs waaaaay before that.  I think it sucks and is ridiculous that the crack down on prescription drug abuse has the side effect of forcing people like myself to spend their very valuable and precious remaining time chasing down a doctor who is not afraid to treat them.  If I had money I could hit the streets and buy myself some percs, the crack down hasn’t stopped the criminals.  It’s only made it more difficult for people like myself and means that I am unable to relax and enj0y my time remaining with my kids because I am either in pain or worried about being in pain and unable to stop it.  It sucks, and I don’t know where to turn, or how to fix it, or what to do about it.  Eventually I know it will stop because I’ll be unable to take a deep breath due to pain, which results inevitably in pneumonia, which results in an inpatient stay, which will result in many narcotics at quite the cost (both to myself personally, my family, and the system).  It seems really stupid and unnecessary.  It seems like there should be a way for any doctor to say, “Oh gee, this patient has a chronic and ultimately terminal disease.  I think it’s probably okay to make sure they’re comfortable and I won’t get in trouble for writing a script for narcotics under these circumstances!”

Anyway, that’s where I am.  I’m struggling again and it sends my anxiety through the roof because I remember that pain all too well and I do not want to go there again.  When every breath hurts, I swear you just do not want to take the next one.  There have been times that I wouldn’t have inhaled if my body hadn’t forced me.  I’ve been done.  And in my very biased opinion, refusing to medicate that pain is just cruel and is not helping the crusade against prescription drug abuse at all.

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Pain and Narcotics

I cannot believe the state of pain control in this country.  It is driving me batty, and tonight I’m quite pissed as I hear of more than one person close to me suffering because of inadequate pain control.  Why?  Because opiates are being so abused that doctors are afraid to prescribe them for fear that they’ll be shut down.  There is no doubt in my mind that prescription drugs are being abused.  However, I see personally with my own two eyes too many cases of people in legitimate need being made to suffer.  Surely there is a happy medium somewhere, and those with real needs can have those needs met?  I myself would have been totally and completely screwed with regard to pain relief for a progressive and terminal disease, had it not been for the intervention of my very awesome PCP who has known me since before I was sick with said disease and knows that I’m not abusing nor selling my meds.

Today the case closest to me is my dad.  Now, my dad has spina bifida, a mild case, but it’s something that has always given him trouble and is easily verifiable.  He’s had multiple spinal surgeries and fusions and implants and all sorts of things, and has been on pain killers for years and years and years.  He’s not asking for an increased dose, a change in medicine, or anything other than the same routine he’s been under for the past five years or so (with his pain under control and him able to work part time).  However, today in his town they shut down another four doctors and one pharmacy and Dad’s doctor is running scared and not wanting to prescribe anything narcotic any more.  Who can blame him?  So tonight I listen to my mom cry as she takes my dad to the ER because his appointment was today and his doctor refused his refill, and she’s worried that he’ll be labeled a drug-seeker at the ER and even that will not bring him any relief.  She’s probably right too, they don’t have access to Dad’s history and records and all they see is another guy coming in complaining of back pain and asking for oxycodone, 10mg please because that’s what I usually take.  Sure buddy, let me hook you right up here!

I think that is so fucking irresponsible of my dad’s doctor and I am so pissed for him, but he is old school and army and respectful of authority and he won’t raise a fuss.  Instead, he called back and begged and they agreed to see him for injections on Monday and they will give him a small script then to hold him over, but that will be the last one.  And Dad has about zero chance of finding another doctor there willing to prescribe for a new patient, because to do so at this point in time would be like shooting oneself in the foot.  It’s not like he started himself on these meds all those years ago.  And I see no reason in the world why a person like him (or me!) should suffer simply because there are dumbasses out there who choose to abuse the things that bring relief from pain.

I hope the ER brings him some relief, at least for the short term.  I have no idea what the long term solution is.
I forgot to mention, in my pissed offed-ness, that the doctor refusing said narcotics is in fact a pain management clinic.  It is not a primary care physician or anything, oh no, because the first thing suggested to me was “Tell your Dad to get to a pain management clinic!”  He’s already there, and that is who is refusing him.  😦

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Have you seen…

Have you seen my optimism?  My positive outlook?  If you happen to see it out and about, could you send it back to me please?  I’m having such a rough time right now.  I just can’t get out of this negative headspace and I don’t like it one bit.  For the first time in my life, I can see how one might consider suicide.  I can see how ending life is preferable to dealing with the reality of it.  I won’t go so far as to say that I’m suicidal at all, just that I can see how one could get to that point.  And the thought has crossed my mind that I’m quite tired of fighting and it’s easy to see how someone like Michael Jackson accidentally overdoses on prescribed meds.  Sometimes you just want the pain to stop, if only for a little while.  I hesitate to write this here because I know it will cause people to worry and I don’t want that, but this is where my brain keeps taking me this week.  I assure you I’d never actually harm myself if only for the little ones who still need me.  But if this disease decided to go ahead and take me this week I wouldn’t be sad about that.

I am so overwhelmed, and there are no good answers and I don’t know where to start.  Right now I’m in the midst of an exacerbation and can’t walk more than five feet without dropping my sats into the 80s.  Not a good place to be, physically.  That’s with my supplemental oxygen on, I can’t do anything without it right now.  The big problem I have with that right now is that my oxygen company sucks and I do not have a portable option at the moment.  My regulator is broken and they were supposed to bring me a replacement before the trip to TN… they’ve been called three times in the past week, and each time they promise they’ll have me a new one by the end of the day.  I’m still waiting, and I have no portable oxygen option.  So I’m homebound.  That is not good for the psyche, so I suppose it starts there.

Next of course is the money/car situation.  Lovely hubby has given up completely, says there are just no other options and I just have to suffer until it’s time for me to go there.  He is still busy this month pretending that the boys and I are moving there at some point in the near future.  I have to just ignore him, he’s in an alternate reality and I don’t have enough drugs to get there.  I am considering asking my ex-husband to finance a car for me, but I have to work up my nerve.  I don’t know what he’ll say about that.  I guess the worst case scenario is he’ll say no, and I’ll be no worse off then than I am now but I don’t think I can handle the hope and subsequent disappointment/letdown that will accompany that right now.  So I’m putting it off until I’m in a better head space.

So the lack of car leads to other things, like doctors appointments that become a major pain to get to.  The first one is coming up this Friday, and I’m going to rent a car to get me there.  I have this one and one in May with BUD that are not optional, and my 7yo has one at his dr just over an hour away that is also not optional.  So three times I’ll rent a car this month.  I wonder if Enterprise has a frequent renter program, maybe I can rent 4 get one free or something!  🙂

In the midst of all this yuck I do at least have one bright spot, some good news!  I’m finally finally finally going to get help!!  I cannot convey how freaking happy this makes me, and what a relief it is.  A lady came on Thurs. to do my intake assessment and said now it’s just a matter of time while my doctor fills out the forms and gets them back in.  I’m going to have someone to do laundry, clean house, do dishes, COOK!, go shopping for groceries or whatever, and basically just whatever I need.  This is such a relief, as these things are becoming increasingly difficult (and in some cases impossible) and it has taken a ton of red tape pulling and hoop-jumping to get help.  Now it’s just a matter of time, and she said at most it would be 4 weeks (but likely closer to 2, depends on my doc) and I’ll have daily help.  DAILY!  That is a huge relief.

I can feel my lungs getting worse, and it’s depressing and scary.  If not for these boys I don’t think I would have an issue with my own mortality any more.  I think I’m to and through the acceptance phase if such a thing exists.  Some days I welcome the end of this existence (as noted above).  I’ve said it before but it’s worth repeating: When every breath hurts this much sometimes you really just don’t want to take the next one.  The pain is so much worse these days, sometimes the percocet don’t even touch it.  I have to do a six minute walk each time I go see BUD, and until now that has been fairly close to normal.  A very good sign.  However, I’m quite positive that this time, I will not be able to complete that walk, and that has me down.  I know that walk is what they use as an indicator to life expectancy and how much the disease has progressed.  As long as you can still do the walk within some kind of parameters, you’re doing good.  Completing the walk without making the required distance is less desirable, but still not horrible.  Not being able to complete the walk?  Is not good at all.  And right now there is no way in hell that I could walk for six minutes.  I can’t make it down the hallway to the bathroom without stopping to take a break, and that’s a distance of about 20 feet.

So all of this long, drawn-out story to say that I’m down right now.  I hope it goes away soon because it’s spring and I want to be upbeat and happy and springy and enjoy the renewal that comes along with my favorite time of year.  I just don’t feel renewed, I feel used up and worn out!  If I could get the pain back under control I think that might be a decent start, it’s hard to feel positive when your every breath is painful.

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