The above photo shows an inaccuracy that was documented and most likely placed in my electronic record. My liver specialist sent me a letter saying that my “elevated liver enzymes had again normalized”. He followed that up with a sentence stating that he would “hold off on further work-up at this time and continue monitoring periodically.”
Here is a perfect example of an inaccuracy paired with statement which could have a chilling effect on valuable work-up by other doctors, especially in related fields.
First, as you can see my Alkaline Phosphatase is still above the normal range. He should have said they’ve “improved”, from the previous blood draw, not that they’ve “normalized.”
Second, to be truthful he should have said “I would hold off on liver biopsy at this time” because that was the only form of “work-up” he could think of to do regarding my liver enzymes.
Seeing as I have an appointment coming up with a brand new Gastroenterologist in May, already a long-enough 3 months away, I don’t want her to look at that and follow his lead and cabosh whatever work-up she may be thinking to do regarding the lower GI spasticity (and long-term chronic constipation which I can’t even feel). Considering this Dysautonomia has yet to be treated since I left Piedmont hospital and all the dodging my GP has done regarding it, I want these symptoms fully looked into, and documented, since it’s not all about blood pressure, because if they aren’t this could go on forever and the root cause might never be treated.
I realize now after the ER incident (for the backstory see the post The Dark Man) just how much power words in a patient’s chart have, and the importance of checking to make sure things written are accurate and having them corrected as soon as possible when they are not.
Figuring I better clear this up sooner rather than later I called and left a message for a nurse to call me. Luckily one returned my call fairly soon after, and she was very understanding. I guess she has seen first-hand the damage irresponsible charting can do so she told me she knows this kind of thing goes on and does hurt patients’ ability to get proper care, so she would ask that these statements be changed in the electronic record, and she even told me she wished I could get an earlier appointment with the Gastroenterologist. She said at the end of our conversation that I could feel free to call her anytime and I took down her name.
I thought yesterday would be a day of rest before the Gallium Scan today but no such luck. With all the tests and orders that had backed up over the past few weeks and months invariably there were some things that were confusing and I had to make some phone calls to radiology to make sure that the Modified Barium Swallow test coming up was one and not two different ones, and that I hadn’t been double scheduled at two different locations. Emory’s code is sometimes hard to read and there are letters signifying which location things are being done, so after calling and making sure that I would be going to the right place for that and then verifying whether the physical therapy evaluation was at the same place as the physical therapy “treatment” I had to call and make sure my transportation was scheduled with a reliable service because the other day’s appointment took 6 hours for me to get home and I felt like hell afterwards. I don’t want a repeat performance of that experience. First they were late getting me to the place, and then had trouble opening the door that has the lift on it. One of the two quality assurance people was in a meeting so I spoke with the other who had one service lined up but was trying to get me set up with a better one. I never received a call back by the end of the day, so I am really hoping she gets this worked out so that I’ll get there and get back in a timely manner.
After Monday’s fiasco I came home to find a notice from the mail carrier tucked into the crack of my door. It was from Emory Healthcare. Usually in my experience a Certified Letter isn’t good news, so I thought. “Oh boy, what fresh hell is this.” It figures they’d send it on a day when I was at a medical appointment.
I looked the tracking number up on the USPS website and it says “Your item departed our USPS facility in NORTH METRO, GA 30026 on Saturday, March 5, 2016 at 9:18 pm. The item is currently in transit to the destination.”
It must have been mailed on Friday, then. It could be a response from the President of Emory Healthcare because whomever sent it didn’t know how to spell my name. Why he couldn’t just send me a regular letter like the others from Emory did is beyond me, or an email for that matter. It was supposed to be re-delivered today but there was a temporary carrier and she had not been briefed. She told me she’d ask someone to come back out here yesterday since I was going to be out at that time today, and she wrote it down but nobody ever re-delivered it, so I guess I’ll be on pins and needles until God-knows-when. I hope it’s not more of the same stonewalling and empty and insincere apologies of non-responsibility I’ve gotten from each chain of command so far. Would it be too much to ask for once for a big corporation to say, “We messed up, and we are going to correct this ASAP” and then actually do it?
If the mail carrier tries delivering it again tomorrow I will most likely not be home yet and then I’ll have to try to get it delivered a 3rd time.
One good piece of news is that someone from Shepherd Center called me back late yesterday afternoon and told me she’d call me again tomorrow to work on setting me up with one of their social workers. Apparently she dialed the wrong number a few days ago and that was why I never heard back. Her husband was picking her up and she had to leave before we’d finished our conversation, but she, like the hepatology nurse was very nice and actually got what I was saying regarding the nightmare I’ve been living through.
Getting back to the topic of what’s in your medical records; you should check this regularly just as you would check your credit report for errors or inaccuracies. You might be very surprised by what your doctors aren’t telling you!
It’s also a good idea to ask for copies of your doctor’s notes. It’s better to find out now than several months or years later when you find you can’t get any help and are wondering why.
When you find things that are inaccurate in the record ask the doctor to remove or re-word it so that it doesn’t cause more problems for you down the road. If he/she won’t do that or minimizes your concern that tells you that particular doctor isn’t genuinely looking out for your best interest and only looking out for himself. A doctor who truly cares about you should not have a problem with your request as they wouldn’t want to do anything to hurt you or hinder your getting the medical care you need.
I sit here trying my best to brush out the mats from my hair that have been developing because I have to sleep more than I used to and the fatigue and muscle pain some days are just too much to brush it. Such is life for those with chronic disease and no caregiver at home to help with these types of things.
I get through each day on a wing and a prayer, hoping every day that something positive I’m working towards will come to fruition. If I could write all my own orders and prescriptions I would, as it seems now that getting everything I need depends on some MD’s name on some form or another and my doctor has decided somewhere along the way to become one more obstruction along this already bumpy road I’m traveling on. He finally wrote me back on the patient portal today to say that he couldn’t go along with the continuous saline infusion, and that he’d done all he could with home healthcare.
I can barely bathe myself although the shower bench helps somewhat. I still can’t reach everything on my body, and that’s not me, and its not laziness either. I’m very meticulous about getting clean and I don’t like it being half-assed and I like to shower everyday, but without help I simply don’t have the stamina, and because of my stiffness I find it hard (and on some days impossible) to reach my toes to wash them. I can’t reach my back even with the long handled sponge thing I got through a local non-profit organization because my arms just won’t bend in the right ways to reach where I need to reach.
Daria, the Care Coordinator told me last week on the phone that they would be glad to pick up my case again and are just waiting for my doctor to write the order and submit a plan, so the obstruction isn’t coming from them, nor from my insurance. It’s coming from my GP. Why does it not bother him that I am home alone without proper help so that I can do the activities of daily living? After 12 years you’d think he’d care that I’m here struggling and using up precious energy reserves I don’t have just to do the simplest things.
Nothing has really improved in my functionality, so why is that call to discontinue services? If anything it calls for increased services, as this disease isn’t going away in 6-8 weeks. I don’t want to deal with it either but I don’t have that luxury of just ignoring the whole thing. I still cannot do my own grocery shopping and the guy who was helping with that is getting more and more lax, getting 1 item when I ask for 3 of something, 2% milk when I asked for whole milk, fully cooked low-sodium bacon when I asked for the applewood smoked bacon that he got the last time, and running out of things and being SOL because I don’t have things needed to complete a recipe.
I find myself time and time again having to prostrate myself just to have the basic necessities and get through life. I have no family to speak of to take care of these duties, and in order for the social worker with the home health agency to help me apply for longer-term help my doctor needs to get me recertified with them. I really need a personal assistant and in order to get the Independent Care Waiver through Medicaid so I can get one he needs to send his doctor’s notes to Shepherd Spinal Center so I can get the pressure mapping evaluation for a wheelchair that will support my whole body properly. The paperwork for the Independent Care waiver asks for the wheelchair specs (in addition to other help I need) and it has to be specific, but Shepherd can’t schedule me until he sends the doctor’s notes.
In addition, the Modified Barium Swallow Test he ordered in December must be updated because the December prescription is too old. I have asked several times yet he has not done that. I told him that it’s becoming too much to have to give these constant reminders and that I need him to take some initiative and go to bat for me as my GP.
What the hell have I done to deserve this? I’m trying not to have any more medical neglect and make things come out better for the second half of my life but nothing I say seems to make a difference. No amount of self-advocacy does any good anymore. It’s bad enough not to have any control over the physical processes in my body, but then to have no control over everything else is just too demeaning for words.
It seems that these doctors see me as a non-entity and my voice is of no consequence in anything that happens in my care. They just do whatever the hell they want whether I like it or not and I’m not supposed to have any say in the matter. Well, fuck that shit! I’m a grown-ass woman and it’s my decision what is done with my body and not! They are only consultants (I like that term better than doctor and I think Australia and the UK has that about right). Who died and made them king!??? These doctors are supposed to be working for me, not the other way around. I’m getting really fed up!
I asked my GP what exactly happened that one minute he was ready to treat my Dysautonomia with the continuous Saline infusion and now he’s not and I asked if anyone at Emory had scared him out of it and if so I wanted to know whom.
If I find out Dr. M. and/or his buddies have anything to do with this I will be a ball of fire and will not rest until justice is done. I don’t need this right now as I’m trying to get to the bottom of my underlying condition and get help for it.
Just like I said to Dr. H., if a patient is suffering then treat it! It’s as simple as that. There is no excuse to sit there and allow someone to suffer when there is something that can be done to alleviate it and it’s relatively safe.
I found that this mode of treatment works for me so I should have access to it if that’s what I choose. I’m well aware that it won’t cure it, but if it will give me more energy, help my bowels move more regularly, improve my appetite and reduce GI problems, make me less thirsty all the time, stabilize my blood pressure, and make me feel faint less often then it’s worth it to me! He has given me not one good reason why he should not.
The port can be put in at Emory’s outpatient center, and home healthcare can do the infusions with their nurses, so frankly what’s the problem??? It’s not like I’m asking for a breast augmentation, this is something medically necessary so I can have some quality of life and it may even prevent an emergency down the road!
He has not come up with a better idea and unless and until he is willing to go out of his way to do the amount of reading and researching I do each day to help come up with something better then as far as I’m concerned he just needs to defer to me.
Besides, I always see the trajectory of things. It’s one of those special perceptual talents I have. At this rate I will probably end up back in the hospital. That is not the preferred way to do this. This method is supposed to be proactive, but left untreated, persistent dysautonomia can be dangerous and cause all sorts of complications. With the blood pressure readings they documented at Piedmont it would be medically irresponsible not to treat it at this point. Maybe in the past it wouldn’t have been as crucial, but now that we have that information from my hospitalization records (and I assume it’s been entered into the electronic records system at Emory) it is really indisputable.
If Dr. V’s hypothesis is right about this whole thing being caused by my Sarcoidosis then I will most likely be considering other treatments that are given by IV such as antibiotics or IVIG, and having that central line will take alot of the demand off my stomach and GI tract in addition to being useful for the Saline treatment. I’m taking about enough pills by mouth right now. If I need to switch from Tizanidine to Baclofen for my spasticity that is the quickest delivery method there is to have it work immediately. They can draw blood from it and do a number of things that will make life easier for me.
If it’s not my Sarcoidosis that is the underlying condition differentials could be one of several Atypical Parkinsonian Disorders such as Multiple System Atrophy (MSA) or Corticobasal Disease (CBD). It was uncanny how many of the symptoms I have that fit the description of either. It was also interesting that the neurologist who gave the lecture in the Youtube video said that they have some symptoms in common with ALS. If I have one of those then it makes perfect sense as to why one might think it was ALS initially. Apparently these other two are even less publicized so they can often go longer than ALS to be detected and diagnosed. These can cause Dystonia, Dysautonomia, and Myoclonus.
Today I was in such agony I could hardly stand being conscious. It was one of those days one would have to die to feel better (and I’m sure those of you reading who have chronic illnesses know how that is).
My face and body were hurting really badly (that same “feel the burn” feeling I had back in August along with inflammation), I had alot of nasal congestion, the roof of my mouth ached, I was nauseated and had colon spasticity. I had to take Tizanidine and my Tramadol and Ibuprofen and sleep it off before it finally let up. I also had more fasciculations in my big toe on the right foot that lasted quite awhile after my nap.
It’s Wednesday and still no call from Radiology to schedule the Gallium Scan. I called and left a message for the nurse to call me and let me know what’s going on and when I can get this done. I hope Dr. V. didn’t go on maternity leave and forget about it.
Yesterday I got stuck lying on my back and couldn’t turn myself for at least 10 minutes and nearly had another fall when I finally managed to roll my bottom half off the side of my bed. This happened alot in the Summer and Fall and I thought it had stopped but looks like it was just taking a temporary break.
I’ve also noticed my jaw dislocating, and cracking in my jaw and in my cervical spine over the past week or so. That needs to be looked into. I asked him to order an MRI of the jaw and sent him exact specs for how that order should be written to get the best view of it. We’ll see what he does with that. I also asked him to get a copy of the first imaging that was done 10-12 years ago by the oral surgeon at Emory which showed I had TMJ so that we can compare and see if there has been further degeneration.
If I take the time and energy to go in to see him and come up empty-handed I am going to be pissed! I expect these orders to be done, and I think he should also have reached out to the movement disorder specialist I’m seeing in July to help facilitate and give him some history and try to make this as easy for me as he can so that the experience will be fruitful and so I’ll be treated with respect.
If my GP conveys to the movement disorder specialist that he’s behind me 100% then it is likely that I’ll be treated well and that the specialist himself will put 100% into diagnosing and truly helping me so that I can come home and not have to continue to prove myself ad nauseum as I have had to up until now. That is probably the most tiring thing I deal with on a day-to-day basis and its high time that my condition be given the credence it deserves. I did not ask to be sick nor to be poor and I believe everyone should have access to the care they need for their conditions no matter what their station in life. It’s just a matter of dignity and humanity. At the very least these doctors should take care of these medical problems expeditiously and give me the best quality of life possible under the circumstances of what my limitations are.
Tomorrow I am seeing my liver specialist. My liver enzymes have been elevated chronically now for about 8 or 9 years. I think at this point they need to do more than monitor it. A test result doesn’t keep cropping up like that for that long for no reason. It’s there to tell us something of significance. If it’s not my Hepatitis B reactivated then they need to find out what else it is. Maybe my liver can elucidate some useful clues in solving the other stuff.
I’ve pretty much run out of patience with all the diddling around and delay tactics. I’m quite sure if I had money and top of the line insurance I’d have a diagnosis by now and would have been on treatment for years by now, and maybe I wouldn’t be near as disabled as I am currently. There’s alot of rationing the doctors never tell you goes on which determines how aggressively (or not) they treat a condition.
The poor die silently of medical neglect every day and for the most part it never makes the news. I do not want to become one of those statistics.