Another part of life that is certain is the yin and yang that is always present. It seems that we can be in the midst of the greatest time of our lives while something disastrous is simultaneously occurring. I have had this message drilled home to me, personally.
A few months ago, this past summer, I went to see several doctors about pain in my pelvic/bladder area. One test led to another. Eventually, I ended up seeing a doctor that I wrote about visiting and being horrified to realize would mean that I'd be reclining in a torture-chamberish chair for tests I didn't know existed.
A few weeks later, around June, I received a call from this doctor's office to let me know I had this bacteria that was indecipherable to me, so I asked the nurse to hold for a moment...I needed to get pen and pad to write down the weird name she was giving me. I knew there would be no way, phonetically, for me to figure out the spelling of this term, so I had her spell it out, I repeated it back and confirmed that I had written it correctly.
I said to the nurse, "Klebsiella pneumoniae? That's weird, especially because my experience with your clinic proved you guys have nothing to do with the lungs." The nurse said, "Well, we just had to let you know what the report said, but the bacteria in this form doesn't have anything to do with your lungs so it's not to worry about. It's a bacteria in your body, but it's no big deal. Just follow up with your regular doctor in a normal fashion. This is really insignificant; there's nothing to even be done about this, so I wouldn't worry about it."
Before hanging up, I asked the nurse to send me a copy of the report and to send my regular physician a copy of this report...after all, I'd already filled out the release of information form for this doctor's office to send the report to my regular physician. I had to fill out a 22 page packet before that doctor would see me, so I did more than ample paperwork to include the HIPA paperwork to allow release of their findings to my regular doctor...with my signature in place to authorize the release before I even walked in to the room to be seen by the doctor.
There should have been no problem with that area of information sharing. I did my part. I authorized it, in writing. I expected any issues to be sent to my main doctor, as is procedure. Otherwise, why would they even include a release of information form to be signed upon your arrival for your first appointment? The paperwork was specific in allowing my regular doctor to have access to my medical records from their office. There should not have been a problem for them to forward it to my regular doctor, they had written permission on file.
Little did I know that this doctor's office would do everything in their power to keep the report from being seen by my Internal Medicine doctor and they would do everything to keep me from getting a personal copy of MY report.
Over the past few months, I have called this doctor's office at least eight times, to repeatedly ask them to send the report to my regular doctor. I had researched the word and didn't like what I found but the nurse again told me, upon a second follow up call, made by me, that it was nothing to worry about. Still I would insist a copy be sent to my regular doctor, the nurse would agree, we'd hang up and nothing would be done. I guess she thought I'd eventually go away, somehow.
However, upon most of my phone calls to this office, I was transferred to the nurse's voicemail...I'd leave a detailed message and I would not get a response. Why hasn't my report been sent to my treating physician yet? You guys told me to follow up with my treating physician about this report that you are not allowing him the advantage of seeing for himself!
Needless to say, big surprise, this doctor's office never forwarded the lab report to my regular doctor. In spite of frequent requests to honor the paperwork for release that they already had on file to authorize the release to my regular doctor, they wouldn't do it. I admit, in the back of my mind, I began to think that the nurse's assurance that this bacteria was no big deal had to be accurate. After all, if it had been a big deal, that doctor would surely have prescribed me medicine or spoken with me directly about the diagnosis. Isn't that how "good" doctors function?
Meanwhile, I am feeling worse and worse. I am becoming more exhausted. I have days of running a low-grade fever of around 100 degrees. To combat the increasing sense of unwellness, I start telling myself that perhaps I need more rest, after all, I do have Addison's disease and perhaps this is the reason I am feeling so run down. So, I force myself to start taking naps. However, the extra rest doesn't seem to help. And, I still feel terrible aches in my pelvis region and back.
I call my regular doctor a couple of times and ask if they happened to have received a lab report from this doctor I had visited. No, there isn't a report. They've not yet heard a whisper from the doctor who ran the tests that showed I had "Klebsiella pneumoniae." They need to see it in black and white. The tests I endured were indeed awful and not easy to endure, not easy to repeat, not even something a regular doctor is equipped to conduct. The specialist had been a women's pelvic health specialists...her tools here definitely specialized. Needless to say, I was not jumping up and down at the prospect of repeating tests that were already conducted with results on paper...paper that simply needed to be shared with my regular doctor.
I wait and keep hoping the pelvic health doctor will follow through with her obligations and instructions from this patient. I cannot stand over their shoulder. I've done my part. How can I force them to pull my file and punch numbers into the fax machine so the information can be shared? I begin to think it might have been a bad mistake.
Life moves on. I focus on my daughter's upcoming wedding. I have afternoons where I force myself to drag into motions that are "normal" and do my best to "fake it until I make it." However, it's becoming increasingly difficult. Something is really wrong and it's becoming hard to not face it. But again, I've done MY part. I went through God-awful tests and the barbaric doctor received a lab report...the doctor's offices have called and said everything is okay. They spell out the word Klebsiella Pneumonia with the flippant comments that it's nothing to worry about, specifically telling me there's not even a need to prescribe antibiotics. Why should I be worrying?
Main problem...if a diagnosing doctor has conducted tests that required laboratory results...How can that testing be of benefit if that doctor refuses to share critical health information with the patient's main treating physician? Even if the report has harmless information in it, the report provides a base-line of health information that is important to a patient's overall medical record.
Red Flag Day: I was reading online news and came across information about a "SUPER-BUG" and the name of the Super Bug that had killed multiple people in one of our country's leading teaching hospitals, multiple deaths in ONE WEEK...the bacteria was called "Klebsiella Pneumoniae." I believe I read this about three weeks ago.
Of course, this report was shallow and without a true understanding of this bacteria, but all I know is that I read that headline report running across the Yahoo news reports boxes...and the word hit me like a brick. In confusion, I made an immediate blog post. I have awesome readers who often know more about medical conditions than I could ever hope to understand. My emails are incredible and enlightening. I had hope. It was late in the day and I could do nothing with the information about this Super Bug anyway.
That week, I also began to call that diagnosing doctor again. Same results. False promises. No one can come to the phone that can be of immediate assistance. No calls in return. No lab report being produced for me to see with my own eyes or for my doctor to see with his own eyes. For some reason, I am less and less trusting of their over-the-phone assurances and constant promises to send the report to my doctor and becoming a tad bit panicked.
Then, I get additional information from a source that is in the field of researching this bacteria and am led to better understand what I am dealing with and how to go about getting the right answers. This person is my angel. I'm not kidding.
So, armed with more knowledge about this bacteria than before, the Friday before last, I walked into my regular doctor's office and filled out one of their release of information forms. I told the head nurse of my doctor's office about the entire situation; I spoke with her about the other doctor I had seen...the one who continually refuses to release my lab results. She helped me fill out the form that would order that doctor's office to hand over the report.
I told her that their office had already been given paperwork to release my medical reports tothem, but they continually failed to do so. She assured me she'd make sure they complied. I told her, "Well, I've filled out releases for THEIR office to send it to you guys; now I'm sending another release from the other end and I guess we'll see what they do." The head nurse for my doctor's office told me, "We have to see the report before we can treat you for anything; let's get the report and make sure a mistake hasn't been made...your doctor can't do anything until he sees a confirmation of what they've told you." I agreed. My doctor is actually responsible and needs to KNOW what he is treating, and he needs to have verified medical reports to assure himself he is taking the best course of action for my health. I wished the head nurse good luck and made an appointment to see my regular doctor, allowing for about a week in between to give time for the lab report to be sent to them for review.
I'm sure there is no surprise as to what happened. I had an appointment to see my regular doctor today, to discuss the lab report that was to be sent by the diagnosing doctor's office. Yesterday, I called my regular doctor's office to make sure the report had been sent. I didn't want to have a wasted office visit. Of course, they were making their own efforts to get the report and had to tell me that it had not been sent, not yet. Now, I am angry. I called the uncooperative diagnosing doctor's office, was put through to voicemail and this time I didn't leave a message, I hung up and called right back and I told them I would keep calling back until they sent over the lab report to my regular doctor as I had been trying to get them to do for MONTHS. They decided to get the elusive nurse on the phone with me.
Lo and behold, more excuses. She even had the audacity to try to tell me that I did not have a RIGHT to a copy of MY lab report; she told me that I could spend $35. to get a copy. My polite, accommodating demeanor disappeared. I informed this nurse that I had spent a decade of my life working for top civil attorneys in Texas and that I was well informed about HIPA laws. I reminded her that I had already provided them with a release of information to have them send my reports to my regular doctor and they had not fulfilled their obligation to do so. I have also filled out a second release to come from my regular doctor and it had been sent over a week ago, so she had ten minutes to get the report faxed or I would show up at their office by that afternoon to hand-carry a copy of a letter of complaint that will be sent to the American Medical Association. In addition, I reminded her that it is VERY EASY to locate the lab that their office uses and for me to go directly to them to get a copy of the report, but if I have to go through those lengths to get a copy of my lab report to my doctor, then it will look extremely negative on their behalf.
All of a sudden, she becomes compliant. She faxes the report to my doctor along with becoming saccharine sweet in giving a flourish of excuses for not releasing the report. Then, she tells me that the doctor had wanted to do more procedures and I had not been compliant, but had cancelled those appointments. I explained, "If you can tell me one good reason I'd return to the very office that runs tests, then does not share the results with my regular doctor, then I will make an appointment. But, based upon how your office has been extremely uncooperative from this first set of labs, I find it completely unhelpful to my health to go to a doctor who does not follow through with their obligation to help the patient."
After this unpleasant experience. I quickly called the head nurse of my regular doctor to confirm the receipt of the lab report and SUCCESS! Why does it take some people to understand you are going to FILE on them for them to act responsibly? At this point, I am still going to report this doctor to the AMA. Too little, too late has not benefited my health. After months of battling the uncooperative doctor who had nothing more to do to help me other than to run tests and drop the ball, I had finally got a step closer to answers, but I am now alarmed at their negligence, especially after learning what the medical report really disclosed.
And that leads me to this morning, As I sat with my doctor and his sparkling new physician's assistant, the two of them looking at the lab report attached to the front of my bulky medical file...I see my doctor start to vigorously rub his eyes and his forehead. He doesn't look happy. I told him about having to go through an Act of Congress to get the lab report sent to him and he looks at the date of the report, over four months ago, and he starts rubbing his forehead again. He sits with eyes closed.
Since I just arrived at my doctor's office. I've still not seen the report. I'm not getting the feeling that it's definitely not good. He told me he confirmed that the diagnosing doctor had not prescribed any antibiotics and that he could offer absolutely no reasonable explanation as to why that doctor would have ordered these tests, got these results and not started immediate treatment.
Then, he explained, "You now know the reason you've been feeling so crappy? How in the F*CK could this doctor have been so stupid?"
And now I realize that my doctor is thinking outloud, he does that, it's part of the reason I adore him. You don't have to wonder what he's thinking, he's straightforward and doesn't try to hide his thoughts with a prescribed bed-side manner. By the way, it's the first day on the job for the physician's assistant. I don't know if he's heard the doctor use the "F" word with other patients, but he's figuring out that I'm one of those who gets the big dose of reality.
My doctor continues, "This report shows you have an infection and it's certainly not a bacteria that will go away on its own, it's a big deal, especially because of the level of infection you have in your body."
The he glides over to me as he sits on his doctor-approved rolling chair and points to the medical report while reading outloud, "RESULT: Heavy growth of Klebsiella pneumoniae."
I stare at the page, I then immediately look to the top of the page for my name, making sure it is right. I can't believe it.
He says, "If this was cultured with a result of having "heavy growth" four months ago, and this bacteria is not easy to battle, your body certainly won't be able to handle it by itself, then this explains the reason you've been getting sicker and sicker. You feeling so crappy isn't because of Addison's disease, it's become this infection is becoming worse and this damn doctor didn't even call me or send me a copy of this report, so I have to wonder...Why were they were trying to keep it a secret?"
Turns out, we all agreed that the doctor somehow missed reading the report closely, even though it is easy to read, even for a lay-person. The conclusion mightily suggests that this doctor didn't follow through, then tried to hide the fact that they diagnosed me with this bacteria, maybe as a way to distance themselves from this bacteria and the potential legal problems that will arise from them not handling it right away, properly. For their office to even tell me that it was "no big deal" and that it did "not require antibiotics" was a complete health-threatening response.
Then, my doctor shocked me further by showing me the second page of the lab report. Not only did this doctor have the results that showed I have Klebsiella pneumoniae, they had been "good enough" in their culture to have the lab run detailed testing of the cultures to see if the strain of this bacteria was antibiotic resistant or not AND to detail a list of SEVENTEEN antibiotics that they cultured to determine which antibiotic could have had a chance to battle the infection. My doctor points to one that showed some effectiveness, "And here is the antibiotic that worked best in the petri-dish, a medicine that is "F-ing" readily available, affordable, and could have helped you tremendously, a long time ago...Cipro."
For me, I kind of blurred over. Is the room getting cloudy or is it just my vision? I could not believe this doctor's office had this information the entire time and PURPOSEFULLY withheld it from me and from my treating physician.
For a moment, we even discussed litigious behavior of some doctors and his willingness to back up any action that might be needed because of their failure to follow through.
The one thing that stands out in my mind is that this doctor might have been attempting to cut any ties of possible links to this bacteria, just in case she does her part to spread it around to others. Not being able to trace a patient with this bacteria would lessen their own liability with a potential outbreak due to the invasive tools they use in their offices. My own medical record might be the link to HER infecting others from her own office procedures. Maybe she is not so confident about their own santization procedures? I have to wonder. If I had this bacteria, then the next person examined is treated without proper disinfectant procedures...I shudder to think about the ramifications, especially since this is a bacteria mostly spread in medical facilities.
Germs sure are ugly things invisible to the naked eye. If only we could see the little boogers when we walked into a room...well...maybe it's better that we not live with such horrifying realities.
This office had such resistance to forwarding my lab report that I can only be leery of their reasons. Who cites HIPA laws to a patient who has done EVERYTHING to abide by them already? If I'd not been a patient who is more understanding of these laws, perhaps I would have been further deterred by the suggestion that I must come BACK to their office, in person, fill out the paperwork I've already completed once already, and pay $35. for the report.
Also, I have to admit, if I had not read that news report nor have been alerted by someone studying this bacteria, I might have heeded this doctor's office and their flippant attitude during the original call to give me the "result" of this lab and to tell me antibiotics WERE NOT NECESSARY, even though the lab report itself stated a full account of antibiotics that would or wouldn't be effective in combatting it. And, it is obvious from the lab report that this bacteria is going to be difficult to battle.
We discussed running another culture, but my doctor said he really felt we shouldn't waste any more time, we already know I have it and that it needs to be TREATED. Starting today.
He assured me that I wasn't contagious. The good thing about the location of the bacteria is that it is not a communal way of transmitting. I was initially devastated and began to feel panicked about who I might contaminate and he assured me that unless a person is sharing a catheter with me and they have a weakened immune system, I won't be able to spread this bacteria, but he smiled and said, "It's nice of you to think of others, but you're going to have your own hands full with battling this infection and if it hits your bloodstream, then...well...we won't think about that right now, let's just say this is not good for YOU."
We discussed running another culture after my first round of antibiotics. After the antibiotics are out of my system, we can run more cultures, compare the levels to the first report to make sure we're making a dent. Then, we can start on another round of antibiotics. It's going to be like trying to put out a fire that keeps trying to flare, but there's no amount of water to completely extinguish it, so you just keep trying and hope you don't run out of water.
Since my daughter is getting married this coming Saturday, I am thankful to have more information. My doctor thinks that after a few days of being on the antibiotics, I will definitely feel better than I feel right now. He said he's always amazed at how I can continue to keep going in spite of hurdles.
Yes, even if I keep running and battling and having to knock down the hurdles, I keep at it. What is the alternative?
And...I am very fortunate to have the loving support of several family members and friends and blog buddies who know what it means to suffer, yet not give in to the what-if part of the equation. The worst case scenario might be presented, but I keep fighting back against the odds.
Additionally, I've not really dealt with hard-core unsupportive people until recently, during this very scary battle. I was actually told by someone that they thought I should be dead by now because of this bacteria, so they didn't believe I had it. Not exactly the thing you should be telling someone who is indeed battling an antibiotic resistant bacteria such as Klebsiella pneumoniae.
But, for those people, I shake the dust off from those heartless comments and the need to prove myself is not necessary. I have professionals in the medical field who are taking charge, helping me to keep living as healthy as I can, and that's what matters.
Part of the mystery as to why I've been so sick is not revealed...no thanks to the idiotic doctor who ran the tests and did nothing with the results to help me.
I keep going so that I can battle this bacteria with the help of people who are very aware, even if they do say the "F" word while showing their own frustration. Of course, having Addison's disease complicates my battle and my doctor discussed that with me today. Steroid treatment can lead to a system that is immune suppressed, it can make it harder for the body to heal and my lack of adrenaline means that this added stress of infection to my body is not good for the management of Addison's disease. It might be the reason I was so susceptible to this becoming a real infection instead of a bacteria that my body could indeed destroy and keep at bay on its own. I feel like a juggling act in constant motion, without a break.
And I discussed with my doctor the person who has been so unsupportive and who has been lashing out with things too horrendous to repeat because he can't comprehend a person being exposed to this bacteria, simply because his own misunderstanding of this bacteria didn't lead to him researching the bacteria to fully to learn that there are VARIATIONS of it. This bacteria has variations that go from being positively lethal within 2-3 days to being somewhat responsive to antibiotics, often with a 50% chance of beating it, depending on the location of the bacteria in your body and whether or not it has colonized and/or is recognized as being a KPC variant. I'm still so clueless about this bacteria, but am learning because I am personally fighting it; I've had the bacteria growing dangerously in my body, but the real fight starts, as of today.
Hopefully, I have been given the chance to battle back and Cipro will work for me. I am hopeful. Actually, I'm the eternal optimist. I won't fib, I'm still scared to be confronting one of the most feared antibiotic resistant infections discussed in this day and age, it still seems unreal and too sci-fi for me to absorb. However, it seems to fit today's world...we live in a time of facing bacteria that evolve to fiercely compete with human knowledge, so they, too, can survive.
I am grateful to my angel of information and you know who you are. If anyone out there is battling this bacteria or has known someone to die from an infection or from sepsis related to a Klebsiella or KPC infection, please email me at FindingLana@yahoo.com.
And one last thing for today, as I'm about to leave to pick up my Cipro...I am learning that bleach is still KING.
|Me...in the past few weeks...on a day I was faking it until I made it.|