Posted by: Kate | August 24, 2010

Oh, Yippee.

Has my story not been quite complicated enough? Clearly not, because we’ve added in yet another complication. To say that I am beyond exhausted with all of this would be a travesty of understatement; words fail to express just how done I am with illness, fear and the medical community at large.

Where do I start, to try and explain this latest bit of nonsense? How far back do I need to go in order for it to form some sort of coherent, if not reasonable or the least bit fair, narrative? Is it enough to just say, now I have MRSA, and move on to something cheery and cute? Or do I need to go back to March, back to when things made sense, and try to guide you along the path that I have somehow been dragged down?

I think I’ll go with a middle ground: I’ll go into some detail, but just since July.  Someday I’ll rewrite the whole March saga, but I’m not quite ready yet.

So, early July.  I’d been having some discomfort and swelling in my abdomen… neither to the point that would alarm me, but both noticeable.  I saw my new gynecologist for it, because the area in question extended from my waistline to my nether regions.  She sent me to get bloodwork and a CT scan, both of which should have been simple little processes but became complicated: the lab had the wrong paperwork, so I had to wait until the doctor could resend her orders, and the woman who did the CT tried six times – six times – to find a vein, and failed all six times, so I ended up with a CT without contrast.

As per usual, when the scan was done, I stuck around in the waiting room to make sure the preliminary results were clear enough.  Actually, I used that time to wander down the hallway and actually get my blood drawn, and so I was gone for about 10 minutes.  When I walked back in, the small angry woman at the desk gestured me over, “You have a phone call.”  I didn’t have time to wonder who it was, but was duly surprised to hear my doctor’s voice on the other end.  Apparently the results were plenty clear enough, but they weren’t good.  I had a mass in my abdominal wall, of indeterminate nature.  Could be a tumor, could be an abscess, could be just a pocket of fluid trapped by my body in an attempt to get rid of the excess stuff created during the normal post-surgery healing process.  I was to go home, try to take it easy over the weekend (this was July 2nd, so yippee, fireworks) and if the discomfort turned into actual pain, I was told to go to the emergency room at MGH, because she was referring me back to my surgeons there.

I made it to Monday morning, and then rather dejectedly headed in to the ER.  I was admitted to the hospital by lunch time and spent the next three days in the Gynecological Surgery wing, having various scans and tests done to figure out what this thing was.  They ruled out tumor and abscess fairly quickly, amen to that, and that left me with this pocket of fluid: a seroma.  Depending on who you ask, this is either a fairly common but benign post-surgery thing or a rare but benign post-surgery thing, keyword being “benign.”  So they drained it in a fabulous little process called a “needle aspiration,” and sent me home within minutes of the procedure’s completion.

That worked great… for about two days.  Then the same symptoms recurred, and after a few days I headed back to the ER again.

Well, this time, they knew what the problem was, and I was no longer an interesting medical mystery to solve.  And so they began the process of bouncing me from one service to the next: general gynecology, gynecological surgery, just-plain-old-regular surgery.  Each time, I got to repeat my history twice, to the medical students they sent in first and then to the actual doctors, because apparently no one reads anything in the chart.  By 9:00 that night, I was exhausted and cranky and anxious, wondering what they were going to do with me; I assumed they would admit me and proceed the next day.

Nope.  They ended up doing a cute little abdominal surgery right there in the ER, leaving me with no time to try and get anyone there to sit with me for it.  It was me, one of the wide-eyed medical students, and a surgical resident in the room, along with various implements and needles and so on.  I was nervous enough to begin with, and that about tripled as soon as the resident did the first incision and said, in a tone of bemused wonderment, “Oh.”

A hint to medical practitioners of all flavors: don’t say, “Oh.”  It’s a scary, scary little syllable.

Turns out, instead of having one 6-by-1.5-centimeters seroma, I had several smaller ones clustered together.  No big deal, I was assured.  The procedure was still just the same, it would just require a few more incisions and perhaps a little deeper.  I requested time to get some Ativan and better pain medication on board, perhaps some Versed to assist with the anesthesia (which consisted only of Lidocaine injections, which is basically the skin version of the dentist’s Novocaine).  They refused all of the above, on the grounds that it was just a quick little procedure, and by the time they got new medications on board the procedure would be all done.

Now, the Kate that Used to Be would have fought harder at this point.  She would have insisted on better pain management and anesthesia, and she would have realized that this was abdominal surgery, so the doctor’s assurance that the pain and inflammation would just instantly disappear after the procedure was complete bunk.  She would have demanded that they wait until she could have her husband or a friend at her bedside during this.

Instead, it’s just me now.  I’m so exhausted and overwhelmed by this whole thing, all of the illness and anxiety and nonsense, that I have lost my ability to fight for myself.  Instead of insisting on being treated in a manner that felt supportive and safe, I just shrank into myself and let them have their way with my abdomen.  I lay there and stared into the super-bright surgical lights overhead, sobbing and being chastised because every time I sobbed it made my stomach move a little bit (and apparently a brief, stern lecture about the need to hold still is expected to be more effective than giving the patient a few moments to calm down, or even – God forbid – offer some support and validation of her fears), crying until the tears ran down my face and into my ears.  There was no dignity anywhere in my behavior, and I didn’t care.

My one bit of solace was that I couldn’t feel what he was doing.  He was giving a running commentary to the student, what he was cutting and how and with what instrument, because apparently I was expected to either go deaf or simply not find this sort of information upsetting or off-putting.  So I knew what he was doing, but couldn’t feel a thing.

Until.

“There’s just one more seroma in here, Ms… um.  Well.  It’s deep, and it might be beyond the reach of the Lidocaine.  But I would really just like to go in and do the incision quickly, and then pack the wound and you’ll be all done.  OK?  OK.”  Pausing for a response from the patient?  Clearly unnecessary, in this guy’s book.

It was, in fact, beyond the reach of the Lidocaine.  Meaning I could feel that incision, completely.  Turns out, scalpels hurt.  A whole lot.

So, anyway, I went home.  (Phew, this has stretched long, and I’m only half done!  Good thing I didn’t go all the way back to March!)

I can skip the next few weeks, because they just consisted of a return to Visiting Nurse services every day, with weekly trips back to Boston to let them check on the wound again.  It had been bandaged up in a certain way that was intended to let the wound heal from the inside out: keeping an opening at the skin level and waiting for my body to close the seroma.

In early August, that outer opening had started to heal itself, but the inside stuff was still pretty big.  So I got to have yet another cute little abdominal surgery, to re-widen the incision.  That procedure went a whole lot better, in the sense that the Lidocaine worked, and I had a couple of Ativan pills in my purse just for such an occasion.  The doctor, however, was at least as jerklike as the first guy had been.  This time, I knew to ask for extra pain medication to bring home.  He balked, citing the fact that I see a pain clinic and they should prescribe all pain medications to me.  I agreed, in theory, but explained that I had already checked, and the appointment I had scheduled for the following week was the soonest available.  It went back and forth, with him repeating that he was just not comfortable, plus maybe I wouldn’t even have any extra pain this time, and me responding that maybe I wouldn’t, but I wouldn’t know that until the Lidocaine wore off.  I offered to just wait there in the office, since Lidocaine typically wears off within an hour or so, and I was very careful to be calm and patient and clear that I was requesting Ultram, not an opiate, and only a few days’ worth to get me past this and on to my next appointment.  And that if his answer was no, then fine, I would go home without it.  He finally left the room and returned with a one-week script, for which I thanked him and then went on my way.

It wasn’t until later that I read his note; I ask for the doctor’s note after each appointment because it’s helpful to the VNA.  And of course I read it and save a copy for myself.  So you can imagine my shock and outrage to read, “Patient refused to leave without a prescription for pain medication.”  Refused? Funny, because I tend to interpret “if the answer is no, then that’s fine, I’ll just go,” in a very different way from refusal.  Ugh.

And I ended up back in the ER that night, because Dr. Jerk had nicked a blood vessel, which was not closing on its own.

Thus things continued up to last Monday, the 16th.  I had initially been told I could skip that week, but the VNA nurse was concerned that the wound looked like it was healing on the outside, again, so I came in anyway.  It’s a group practice, and I see whoever walks in the door; there’s no scheduling with just one doctor in particular.  You can imagine my delight when Dr. Jerk appeared.  I told him about the nicked blood vessel, and he didn’t believe me: “I didn’t see anything about it in your chart.”  I suggested he check again, because I had deliberately come all the way back to MGH just so those notes would be easy to see.   He left the room in a huff, and returned five minutes later to toss an offhand apology my way before checking my wound.  He didn’t think it was closing too soon, at this point, but he did think it was infected.  He took a culture and disappeared.  Poof.

The nurse had warned me that most cultures take about 48 hours to give results, and so the first two days I sat home and rode the Anxiety Train around my bedroom, waiting for them to call me.  When Wednesday passed without a call, I called them on Thursday.  I left a message… no reply.  So, Friday, with the VNA nurse present, I called again.  They still didn’t reply to me (I had been told to have Dr. Jerk paged to my phone) but when the nurse called five minutes later, he returned her page immediately.  This gave me the delightful opportunity to listen to her side of the conversation: “Thank you for returning my call so quickly… Yes… Yes… Oh.  She was positive for MRSA? When did – … Oh.  And why didn’t someone call her sooner? …  Oh.  Well.  Anyway.  Let me just hand the phone over so that she can give you her pharmacy information, because I’m sure you’ll want to – … What? … You won’t.  But –” It was at this point that I stopped listening and just let the Anxiety Train completely jump the tracks.

Turns out, I have what’s called a MRSA colonization, which is somewhat different from an infection.  Theories differ as to whether it’s best to treat a colonization with antibiotics or just wait and see what it does on its own, but my own personal theory, seeing as how I’m living in a home with three young children, is that I need to douse this sucker with medication as quickly as possible.  Dr. Jerk was of the wait-and-see philosophy, but between his prior jerkness and then his decision not to bother to call me with the lab results (“I didn’t know the protocol for calling, so I thought we would just wait to tell her on Monday.”), I had already decided to find myself a new wound care clinic.  And in the meantime, my PCP was more than happy to call in a prescription for me, which I was able to start that same evening.

So, yeah.  Yippee.  More medical complications, aren’t I just the luckiest thing ever?  I’ve done enough reading over the past few days to stop panicking about this MRSA stuff, but my God am I tired of having to do this sort of reading in the first place.  It’s all about taking it one day at a time, sometimes just one hour at a time, and trying not to completely drown in the Sea of Doubts and Worries.  (The Anxiety Train travels on a bridge over this sea, and a rickety, unstable bridge it is.)

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Responses

  1. ugh. ugh. ugh. I HATE Jerky Dr’s I am so sorry that you keep meeting them 😦 ❤

  2. Ughh. Are you keeping documentation and copies of everything in case you bring them to court? It seems like alot of unnecessary pain and suffering!

    Also, is there another hospital you can go to besides MGH?

  3. You really should send a copy of this to the HR and administrators. He’s being paid to do a job on a living, conscious human being. He may not have committed medical malpractice, but it was human malpractice and he has to know that if he treats people that way it’s going to get back to his boss.

  4. Oh Kate I’m so so sorry you had to go through all of that. I agree with your friend who posted about the Medical Malpractice idea. That doctor was so irresponsible with your care. Also, I think it’s time for you to find another wound care clinic, too. You’ve had a hard road to hoe. You’ve been so strong. You just gotta keep working it out day by day or hour by hour. Just know I’m always keeping you in my thoughts.

  5. That is some awful patient care. I don’t know anything about malpractice, but unless you can put a brick through the window of Dr Jerk’s Porche, may I suggest sites like Angie’s List and ratemds.com? It might help you find someone competent, or at least let you write some scathing reviews would start costing Dr Jerk and his friends some business?

  6. This just sucks.

    We’ll hold onto all the anger and indignation so that you can put all your energy into healing and your family.

    If, when you reach your new 100%, you decide you want to take some of it back, it will be here. If you decide to let it go, well, it will still be here anyway.

  7. Ok, so there are no comments I can make to this post without letting some good, Class A profanity fly all over the place. I’ll keep it out of your comments, but rest assured I am cursing the hospital, and mother nature, and especially Dr. Jerk quite well right now.

    Love & hugs to you. I’ll continue to pray for your recovery and for Dr. Jerk to get a heart. Or a soul. Or something.

  8. Kate, I agree that you need to be documenting this. Deciding not telling you that you have MRSA (with small children at home!) for a week because he didn’t know the “phone protocol” (which is bullsh*t, btw – he felt embarrassed that something was actually wrong and *hoped* it would clear up on it’s own) is unacceptable. Never mind refusing to give you adequate pain medication for that surgery. WTF, did he think you deliberately grew seromas so you could get pain meds?? I had a female doctor at MGH who stuck a vaginal u/s probe into me like she was stuffing a turkey because I was 10 minutes late for an appointment. I called the office nurse and told her that I was ready to file a formal complaint with the hospital – and I never saw that doctor again. You have a right to be treated with dignity and respect in a hospital.

    My conditions have never been as serious as yours, but I have had plenty of experience with arrogant, nasty, pernicious doctors to the point where I have had enough. Doctors are not so scarce on the ground (especially in this area) that you need to put up with the losers. I like the Angie’s list suggestion. For too long people have been intimidated by doctors into feeling like they can’t or shouldn’t complain about ill-treatment. Somehow it’s taboo to call them out publicly – even in this blog you use a pseudonym.

    Guess that’s enough of a rant for now… 🙂

  9. Kate, this is bullshit and I’m so pissed off for you. I know you said you weren’t pursuing a malpractice suit after the March events, but it almost seems to me that if you were that might finally make all of the other doctors pay attention and stop acting like such assholes.

    OK, enough swearing. You are always in my thoughts, but I will ramp up the vibes that all goes well and you find another pain clinic soon. You don’t need this on top of everything else. And extra vibes for a smooth transition with the family going back to school 🙂

  10. what they all said above, plus: hug.

  11. oooo I have a list of people in that facility you need to send this to…Director for surgery, director of gyne surgery, director of the OR, director of ER, QA department, Nurse Management, and to their personal offices finally send one to the hospital’s director. First and foremost Pain management should be #1. This is YOUR HEALTH they are addressing and you damn well should be involved. questions should always be followed by answers. GRRRRRRRRR this just pisses me off to no end! If I were you I send a letter to the State of MA as well, have them look into this MESS! You are in my thoughts and prayers.

  12. […] come as no real surprise to anyone that he stepped up and took the next step, when it came to the outrageous behavior of Dr. Jerk and his clinic.  It took several days and too many phone calls, but he has arranged a meeting with […]

  13. My God, woman. You need to catch a medical break. I can’t believe there are so many asshat doctors out there. Wait. Yes, I can. But I can’t believe you ended up running in to them all.
    Sending good thoughts your way. Try to stay healthy, OK?

  14. […] but to cancel it if it heals up before then.  (By the way, this doctor is infinitely better than the so-called specialists at MGH, and I plan to share his name here after I’m done receiving care there.  I am interested in […]


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