jbird1972

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Well, I still lost my position in the ER (heart is breaking here), but overall the compromise couldn't have been better under the circumstances.  I am still employed by the hospital, they advised me to stay on short term leave for the full time, which brings me to the end of January, then I can either try and come back to the ER if there is an open position, or apply for another position in the hospital, and if I am not ready to return, they can set me up for long term disability. 
I have been trying to avoid being a patient, so much is going on with school/clinical time, but it was inevitable.  I ended up in the local ER/admitted for 2 days for pain/fluids/nausea control.  I really didn't feel any better when I went home, I just needed to be home, more soothing environment for sure, and at least I had a couple of days with lessened pain.
I'm going to continue to take the antibiotic regimen that my surgeon/primary put me on, but according to the surgeon, if it was going to cure me, it would have worked by now, but I am going to give it until the end of the week before I waive the white flag.  They are two pretty caustic antibiotics and in high doses that would wreak havoc on the most cast iron variety of GI systems, so you can imagine what it is doing to mine. I think by the end of the week I will be asking the doc to write me the "Golden Ticket" to the Mayo Clinic.  I have to do something.  Thanks for listening, and for all of your support!

Noooo, I'm not cured, it would be nice if it were that.  I was informed today that my job in the ER is no longer available to me because I have been on/off medical leave too long.  There is a meeting with HR this week, but I'm pretty sure the plan is that I either quit or they will fire me, either way, my position in the ER is no longer available to me.  I have so much sadness about this, I can't even express it yet.  Anyone who knows me, knows how much I love my job and the people I work with, and my patients.  When I can find the words, then maybe I will post a blog that describes it adequately.

I had a very bad wake-up call and a good revelation, all in one week!

I guess we'll start with the bad so we can finish off on a high note.  My husband and I were talking about my rollercoaster of health issues over the last year and a half, and we talked about how truly scary it was back in September 2008.  That was when I was only taking in about 500 calories a day, had a central line for 12 days to get TPN at home to try and get some calories, and just how desperately ill I was and how worried we were, and how we felt powerless because we were in this wait and suffer mode...all of the above I was well aware of, and of course aware of how concerned my family, and especially my kids were about what was going to happen to me, but until Sunday, I didn't realize how close I may have come to actually dying, or at the very least, how close I may have come to having some serious, permanent organ damage from the malnutrition.  My husband told me that there were times when I would fall asleep on the couch next to him because I was just so weak, and he would look over at me sometimes, see me asleep with my mouth open, and wonder if I was dead, if this was it!!  OMG!  It just really scared me into a reality when he shared that with me, and I won't go back there again.  I will NOT let anyone, any doctor, let me take a back seat and sit and wait anymore.  This is MY body, MY life, I am someone's wife, someone's mother, and I am needed!!
So, now the good revelation...in the spirit of trying to continue on with life, I started paramedic class this week.  It is at the same school/same classroom that I tool my EMT-B class in.  One side of the room is set up as a mock ER, and the other side of the room has 3 mock ambulances, complete with the big, giant step to get up into the back of the ambulance, and the limited space of course.  I looked at it and remembered that the last time I was in the classroom I weighed 150 pounds more than I do now, and I remember seriously wondering how was I going to get up into the back of that ambulance, I mean seriously, I wondered and it was tough!!  Yesterday, I looked at it and marveled at how hard it was then, and I just don't even think about it now, except for in moments of old habits die hard kind of thing.  
It's been a journey, I pray that the bad parts are coming to an end so I can get back to my life without wondering what is coming around the medical corner to knock me down again!

When I was in the hospital at U of C last week, they wanted to check the blood flow through my Celiac Artery to check for a condition called MALS (Median Arcuate Ligament Syndrome), basically if the blood flow is not adequate, it can account for all the problems that I am having with eating.  Let's pray this is it.  The first time they tried to do the ultrasound I was so filled up with gas they couldn't see the vessels clearly.  So, I got up at 4am to catch the train downtown today to have another go at it and hope they could see what they needed to.
They were able to see past the gas (not sure where all the gas is coming from??), and she kept measuring the velocity in the 200's, but then some in the 185 range...of course at the time this meant nothing to me...she had another tech come in and get a second opinion, the other tech tried to find the arteries herself, but couldn't, so she had the original tech locate them for her, and when they turned the doppler on they started measuring the velocity, and then argued back and forth about which velocity reading was the accurate one, the 200 or the 185!!  This is my life here, and after Googling what some of these velocities mean, their dispute can mean the difference between treatment/further study or not!!  Grrrrrr  They will have the radiologist do his/her reading, and then get the results to the doctor, hopefully by Monday.  I just want an answer and get this over with, whatever IT is.

OK, so the medical first...long and short, been in the ER 3 more times since the last blog,, resulting in 2 admissions, one at my community hospital, and the last at University of Chicago Hospital, which is about 50 miles from our house, and we did go to their ER, and I think we got lucky, but I was pleasantly surprised that we were only in triage for about 30 minutes, although I did spend 17 hours in the ER before a room was available, but I work in an ER, so I get it...at least I THINK I still work in the ER.
My job is my passion, my passion is taking care of my patients, besides my family, it is the one thing that keeps driving me, and has extended my personal turmoil into extreme empathy and care for my patients.  Through it all, I have been my original surgeon's biggest cheerleader, told my patients in the ER what wonderful hands they are in as they are about to go to surgery, and I have gone to support group feeling like the biggest failure if this surgery because it has made me so sick, even though on an intellectual level I know it isn't my fault that this happened.  No surgeon could ever ask for a more compliant patient, everything they have asked me to do, I have done.  I have started realizing that some doctors, when they can't figure out what is wrong with you start taking the stance, it must be something wrong with the patient!  I have never accused my surgeon of making a mistake, ever...but with all my problems, and having to go to specialists, I frequently have to pull my hospital records for the new doctors to review, and of course I read them.  The last time I was under my surgeon's care, he wrote a long dictation about me, and the thing that stuck out the most was the comment he made that he wasn't sure if this was psychological or not...really nice.  I didn't, and haven't, brought it up to him, because I am a chicken, but my primary care doctor finally told me it is THE reason why he called the psych consult the last time I had been in the hospital.  He explained to me that when a doctor writes that statement in a patient's chart, it is my primary care doctor's job and duty to prove or disprove this assumption, for my own sake I guess, otherwise every new doctor that looks at my chart will think I am a nut!  Of course, after meeting with me for 15 minutes, the psychiatrist reported back to him that I wasn't nuts, but was someone who was legitimately ill, and had anxiety from being ill, and quite frankly, who wouldn't!!
I am on the edge of losing my job, which is so ironic in many ways...I work for a hospital, a hospital where I had this procedure that has made me so ill, a hospital that contains all the doctors who have not helped my cause, and yet I am seriously in jeopardy of losing my job...MY JOB!!  That I have worked so hard for, sacrificed time away from my family, gone to work sick for, gagged and thrown up in elevators after taking patients upstairs for, and I am the one begging THEM to understand??  I know this all sounds bitter, and I'm sure it is, but I think it is the ultimate truth that has been staring me in the face for a long time, and I just didn't want to believe that certain doctors who I thought really, truly cared about me, maybe they don't...I really don't know...I like to think a dictation note speaks a thousand words.
This new truth that I'm feeling right now has many ramifications to my life, maybe who my friends are or aren't...I just don't know who I can really trust anymore.  I think it has taken me a while to get to that truly pissed off stage of loss, and I'm not even sure what I've lost yet.  I know that anyone who is truly my friend, will be my friend forever, and be there for me now more than ever.  I just don't even know what to do anymore. 
I'll say it again, still no regrets about the RNY, only regrets that I let my laid back attitude contribute to letting other people direct my health care, and not listening to that voice deep inside me that was telling me that certain things were not right.  I have fought with my family, the people who love me unconditionally, and in some cases taken the side of my doctor over them, thinking that they mean well, but maybe my medical knowledge made me know better than they did...that I am regretting in some ways.  I still don't have the answer as to what is wrong with me physically, but I do know what is wrong with me mentally- NOTHING!!  The only thing wrong with me is that I need to stop laying down and taking it, and start asking some serious questions, even if they are uncomfortable.  No one worried if I was going to be uncomfortable reading a statement in my permanent chart that stated they didn't know whether this was psychological or not, never lost a night of sleep over that one. 
So, from a medical standpoint, the next test is Friday to see if there is something wrong with my Celiac artery, NOT Celiac disease, already been cleared of that.  I will keep you posted, and I will try and keep these a bit lighter than this one. 

I was in the hospital again from June 7-13th, same stuff, just different day. 

Not really a health update, but I like to share the good as well as the not so good in my life, it's only fair :)   I just got my letter today that I was accepted into this year's Paramedic Class, it starts August 24, and goes through next summer. I'm really excited about this, it's going to be a tough year, and I have to pray that my chronic issues do not get in my way, especially since after my doctor's appointment today with Dr. Heydari, we are in kind of a wait and suffer mode, and although I agree with it at this point, it makes it hard when it is me that has to do the waiting and suffering, and praying that I don't lose my job, that I don't miss too much school, etc...Life has to go on, I can't let whatever this is stop me, and I am having a really emotional day over it.  I'm not going to give up trying to figure out what it is, but in the meantime, no x-rays/CT's/Tests, and the advice is go to the ER as needed for relief, and thankfully our docs take excellent care of me, and they don't want me to glow in the dark anymore than I do, so they are respectful of the no imaging policy I have going on these days.  So, that's it for now :)  I'm really trying to hang in there...thanks to everyone on here for the support, it helps tremendously!

Almost exactly one month to the day since my last surgery, I was at work (Memorial Day), been feeling great, not just fine, but great!  I ate lunch, and a few hours later felt really bloated, and had some abdominal pain, but even that didn't get me down, I worked the rest of my shift and wasn't worried because it was a completely different pain that what I used to have!  I still have calorie issues, so even though I didn't feel great, I still felt like I had to eat dinner, so I ate...and then that old, familiar, horrible feeling started...the bad nausea started creeping in, I popped a Phenergan to try and stop it, no luck, then it moved on to the inability to swallow my own saliva, which is bad enough, but then you add hyper-salivation to the mix, terrible, and then the pain, back in the same old spot, Left upper/lower quadrant abdominal pain that was easily a 9-10!  I just looked at my husband and said this must be a nightmare because I thought we were done with this.  So, after some debate, and a call to a wonderful friend, we ended up in the ER AGAIN!!  As most of you know, I work in the ER, so they have gotten quite the education about my problems, and are wonderful, they got me comfortable, somewhat, pain was still about a 7-8 after meds, and I spent the next 5 days in the hospital, mostly getting fluids (NPO of course- couldn't pay me to eat at that point), and then the GI doctor wanted to repeat the colonoscopy/upper endoscopy that was done in February to see what was going on.  My advice, if you have to have the prep for the colonoscopy, do the pills, not the gallon of go-lightly (funny name for that stuff), just make sure that you get some anti-nausea meds on board before taking the 32 pills!!  So, a diagnosis of a bad case of gastritis, and a Psych consult later (oh yeah, the fun never ends! I must be NUTS because they can't figure it all out!)  I will agree that the stress of being sick for over a year is probably not helping, but I refuse to believe that it is the SOLE cause.  So, here I am, not sure if I even want to bother finding out what it is that makes me sick, or just manage life with 2-3 visits to the ER each month??  I know some of you suffer with similar issues, I'll take any advice at this point.  I haven't completely lost my sense of humor yet, close though.

I hate to think that I might jinx myself, but I think this last surgery may have done it!  I am still sore of course, but it feels good to be home, and the constant pain that I had is gone, only surgical pain left behind. 
When I woke up in recovery, I only remember him saying that everything was fine, that he did a lot of stuff, and he would talk to me about it later when I was more awake.  Dr. Heydari always gives full color photos of my surgeries/procedures, sometimes drawings too...so I had a half a day to try and look at those and figure out what was what, and my husband tried to recite to me what he was told, but it is hard, too much info to remember.  I had a ton of adhesions, everywhere, which is kind of scary because I just had surgery in January where they took down my adhesions at U of C??!  It's hard to describe without the pictures, but I think the one that was the chief culprit was a triangular band of adhesions that was right in front of my small intestine, and it is suspected that when I was eating, that piece would slip into that space, and sometimes get caught, causing all my problems.  He spent about an hour and a half cutting away, I do need to contact my ob/gyn because he said my uterus was big, probably just a fibroid (had those before), but I need to get it checked out anyway.  I found out that I am NOT allergic to Fentanyl, the anesthesiologist and I decided to try it under controlled circumstances in the OR, and everything was fine, I even told them to only give me a small amount of sedation pre-op (instead of the elephant tranquilizer they normally give me), so I remember being awake before surgery in the OR, the oxygen mask, and her telling me that she was pushing this drug, and then the Fentanyl, so I think that will cure me of my phobias, and hopefully that was my last surgery anyway.   The doctor told me to expect some pain/nausea over the next 2-3 weeks because of all the manipulation of the small intestine that he did, but that I should see an improvement after that.
Thanks for all of the thoughts/prayers!
Jules

Well, I have decided to get this over with in the hopes of saving summer from my medical nonsense. I am having an exploratory laparoscopy on Tuesday April 28th 10:30am at the hospital in Woodstock (815) 338-2500 is the main number (I have to be there at 8:30am).  I will be staying overnight, mostly because of the rules at work for medical leave, and to save myself from being written up, it's confusing, I won't bore you with it.  Dr. Heydari is going to take a really good look around, some new scenery for him there, he hasn't seen the re-modeling for himself yet, and he will make sure that he gets rid of any scar tissue that may be kinking things up, and we discussed that is he sees an irritated section of small bowel, taking that piece out as needed...all depends on what he sees in there.  I am trying to eat small bits and bites here and there, but since Wed night's visit to the ER, every solid thing that I eat makes my insides angry.  I was panicked about letting my manager know, but that went ok, I think it will work out.  I am trying to cover the shifts myself, but she already told me not to worry if I can't...just makes me feel better to try.   I have to say that I don't regret getting that outside opinion from the guys downtown, but after all is said and done, I feel like Dr. Heydari is the only one who has really been there for me, and hasn't given up when everyone else has.  So, now I can turn my attention to the Anesthesia-phobia, I have my "allergic to Fentanyl, don't give me Fentanyl" speech ready (Maybe I should make that into a funny t-shirt??)...I have some hand-holders (Mart of course) and any others that want to join in.  I'm thinking of the next contest question...open to ideas...maybe how many laparoscopic holes? or....dermabond VS staples?...oh, maybe  drain or no drain??  Super fun stuff, I'll think of a good one and let you know, I give good prizes!

  I had a follow-up appt with Dr. Heydari yesterday, and admittedly I wasn't sure if it was really going to help the situation, no offense to the doc, it has just gotten so confusing with this doctor, that doctor, all the different theories, etc...lately I have felt like I am floating out there in medical limbo.  He knew about my pain doc nightmare, we talked about that and came up with a short term solution, short term because we are going to figure this out! What I really liked is that he asked me what can do to help me, what is it that I want from him as a doctor at this point, and he sincerely wanted the answer.  I told him the pain was a huge issue, but not the real issue, the issue is that I know my body, I know there is something wrong going on in there and we need to get to the bottom of it.  He came up with a plan, my last surgery was 1/2/09, so he still wants to stick with what we talked about before, no invasive procedures for 5-6 months to let my body heal, and he is going to use that day as the start date of the let's wait and see phase.  If I am still having trouble in June, he wants to do another upper GI with small bowel follow-through (he realizes that I have had many of these, knows that even when they have been "normal" he has still found something abnormal in surgery, but he is not focused on my stomach this time, but the small intestine), and then depending on the results and symptoms I am having at that time (unless I am cured LOL), we will talk about doing one more, THE LAST, exploratory laparoscopy, and he will focus in on the area where all of my pain is, it is always in the same place, and in the past, this is the area where he has found all of my previous issues (adhesions/internal hernia/etc).  I just felt good that we have a plan, hopefully I won't need the plan, but before that I have just felt like I was doomed to the "wait & suffer" method for life.  I really feel like they have washed their hands of me downtown, of course this is only MY impression, but I just get the feeling that they thought that my problem would be a slam dunk to fix, and when it turned into this giant cluster, they just screamed uncle.  I don't even have a follow-up appt with them or anything, the last time I saw them, it was just, oh yeah, you'll be fine someday. In the meantime, I did get a phone call from Mayo (they are very fast responders, weird), I talked with the appt schedulers on the phone, made arrangements to overnight my records to them today (they wanted a fax, I laughed and said that at last count, my medical record was over 100 pages, and that doesn't include in-hospital notes/progress notes from doc visits LOL), they will get the records to the GI docs, they will review everything, and then call me to see if they want to even take me in for an appt, feels like an audition :)  I don't feel like I can turn down any brains at this point, the more the merrier. I have always known that I have wonderful people around me, but I was reminded this week when a couple of them (you know who you are), volunteered to donate some of their hard-earned time off (vacation days) to me, so that if I need to go to Mayo, I will have time off to take to get there, and I have also had offers from co-workers to pick up my shifts as well. That's about it for now, I am making that trip to Kinko's to make a gazillion copies and overnight the package.