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EM12c Goth Girl
It’s been such a long time since I posted anything on my blog. I had this post, last save time was on Dec. 13th, which is ironic considering the subject and what ended up happening that day. I’m going to ramble a bit, but there is a message here folks… 🙂
I’ve always been a strong believer of the old Hebrew saying, “Fall down seven times, get up eight”. I’ve lived by it, which most who know me well enough, realize that it’s not just part of my DBA methodology, it’s also an integral part of my life. When I was in my 20’s, I wasn’t a techie at all. I was working as an auditor for a company in Colorado when I started experiencing strokes between the ages of 21-26 years of age. I had five documented strokes, that until a very dedicated and brilliant Neurologist diagnosed the cause of, I was told no one could deter from occurring and that I’d be blind before I was 40. Through this doctor’s excellent care and help from a Rhuematologist and Hematologist, they figured out the odd auto-immune issue, combined with a natural tendency to have very low blood pressure so that I was stroke-free for almost 19 years. I’m now onto my way to turning 46, was left with 48% of my visual field gone, (eyes are fine, it’s the striate cortex of the right hemisphere that isn’t able to “translate” data any longer, showing up as damaged in MRI scans.) I have very, very few, long-term memories from about the age of 19-26 years of age. All other damage that occurred was addressed with physical therapy and speech therapy. If you consider the years that I am impacted memory wise, yes, had to start looking for a new career, wasn’t like I could perform my previous one any longer. I started first by selling shoes, then computers, which outside of being a woman in her late 20’s selling computers, which meant I did very, very well, I found out I had a knack for software. That was 1995 and by 1997 I was doing desktop support for a large telecom company who ended up putting me through my Oracle 8 certification classes and made me a DBA by 1999.
Now with the years gone by, children born, (by oldest just turned 18, youngest is 12 yrs old) I thought I was pretty safe and had no worries. I had a couple surgeries and lasik without any issue and was secure in the fact that I understood everything I needed to know about my condition, knew it hindered me from receiving care as much as it helped me to know when I did enter the hospital what to keep doctors from doing to me that might kill me, (no, you can’t thin my blood…no there is no concern about clots, I have a BLEEDING problem, not a clotting one, pretty much get the heck away from me before you kill me…) I have an excellent primary care physician that I appreciate for his knowledge and natural skill in the medical field.
I went in for surgery on November 10th. It was unexpected, but I checked into a hospital that was very aware of my medical history, even went over it with me before they checked me in. As it was unexpected, they had decided to do exploratory surgery due to my abdominal pain and discovered I had a ruptured ovarian cyst and simply removed it all in one swoop to avoid any complications. The standard procedure when many have any type of bleeding, is for the anesthesiologist to lower your blood pressure to lessen bleeding. Many aren’t aware of this- I know I wasn’t. Unfortunately, my old medical condition surprised the anesthesiologist as my blood pressure “dipped” twice, very low and upon recovery, I found I had some new areas that were missing, including “spots” across my central right visual field that were just plain annoying. My vision seemed a bit blurry, too, but when I squinted to clear the vision, which would commonly work for anyone who knows what it’s like to have blurry vision, it just didn’t improve. It should be noted, as with any of my children’s births, previous surgeries, again, didn’t partake in any pain medications. I have a high threshold for pain and found no need of them. I bounced back quickly, but the vision issue and what caused it, was of high concern.
My primary care physician followed up with an eye exam, (always have to prove it’s not the eyes first before you go to the brain…) and then onto an MRI scan once that came back as “eyes all good!” I received a great set of glasses that addressed the distortion and for the first time in my life, the unending glare that happens to many with visual field damage. With the new glasses, I was able once again, to drive at night.
During this follow-up time, I was the lucky recipient on Dec. 13th of kidney stones and had to go into the same hospital ER for these. I had been directed there, even after the surgery, as the best place to go due to a urologist on site. After a visit that shall just go down as the “one of the worst care given at a hospital in my life and lucky I got home alive” situations, I then had to see my doctor for a referral to a urologist to actually get the kidney stone broken up, as my ER trip just ended up in me going in with severe pain and then being released in severe pain, drugged up and in worse shape than when I entered the place. My MRI’s are not back yet and we go in to discuss my procedure to break up the stone with the urology specialist. The nursing assistant comes back to the room and says, “I’m sorry, but I can’t get anyone to perform the procedure on you without a medical release from your doctor due to the assumed stroke from last month.” Which translated to me, returns as “Yes, we know what needs to be done, but due to a mistake that no one in the medical industry will admit to, no one will now perform the procedure you need to have done now unless someone else takes responsibility for any mistakes we might make.”
There are times when you realize that figuring out some medical mysteries are more threatening to your future health than just addressing the results and going forward to get the care you need. My primary physician went after them the next day and we took the whole stroke issue off the table immediately. I ended up going a full week with a kidney stone that required a surgical procedure because so much of the medical profession is too worried about red tape, managing pain vs. addressing the problem and forget about caring for the unique patient in front of them. I will never give up my primary care physician. I have no doubt Dr. Michael Archer will keep me alive for a long time. His “strong-arming” of the medical staff at different locations not only got me what I needed, it also made me realize I needed to request copies of my medical records to see just how poorly I was cared for. If I have to return to an ER or hospital, I’m pretty sure all bets are off. You can be sure I will never return to St. Anthony’s North Hospital and I recommend anyone in the Northern Denver area to avoid it. I am now recovering at home after the surgical procedure being performed on the 23rd of December and have one more follow-up visit to complete the process. The delay in my care put me more behind, caused me more lost time in work- thank God it was the holidays, first time I’ve ever actually take pain medication, yes, kidney stone procedures beat out child birth and other surgeries I’ve had for amount of pain. It resulted in a request for more recovery time- It would have been much more difficult had I not worked for a great company like Enkitec and worked from home. I’ve lost out on almost six weeks of writing time on the EM12c book, playing lead author and helping out with other areas for the book, RMOUG Training Days work that requires my time has gone pretty well, thanks to Tim’s involvement, he’s often been able to answer issues for me when I’ve been laid up.
We, as patients need to be ever vigilant and constantly push for the care we deserve from the medical profession. The damage that can be done because someone didn’t take the time to read a full chart or a nurse didn’t have time to take a full medical history of the patient or understand the patient’s unique physiology, pain thresholds, etc. put us at risk. Removing the humanity from health care is true cause for most of our failures in this area of American healthcare, which we in turn have just responded with more insurance choices to address.
So my final message is this- The medical profession has a few bright stars in it and everyone else is just following what it says in a medical book on an issue or the policies of a hospital. To protect your loved ones when they enter a hospital is an incredibly demanding task. Ask every nurse, every doctor to explain what they are doing and if anything doesn’t function, (the call button, the phone, etc…) demand that they correct the situation immediately. If you aren’t getting the care you need, demand to see the facilities patient rights documentation and file complaints. Everyone deserves to receive the care that will help them live a long and healthy life. If the medical staff can not perform their job, find someone else more qualified to do so.