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The US Healthcare System Gets an F | Lyme Wars

8/22/2016

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"We never quit on patients. Ever. Never." - Dr. Joseph Jemsek
The visual evidence that my doctor is doing a great thing is the fact that Mandy walks out of his office after treatment.  You cannot argue that in medicine.
"The U.S. health system gets an F."

"You need a pacemaker." - Heart Doctor

"Oh Okay!  Yay!" - My Response

Who would have thought that someone would be so excited at the age of 36 for a pacemaker?  85% of pacemakers are put in the elderly of 65 years of age or older.  A pacemaker is so rare at my age, I cannot even find the statistics for it.  

I have been having heart problems going undiagnosed for quite some time now, due to Lyme disease and co-infections.  At best, the doctors would put me on blood pressure medicine that did nothing for me.  I was in and out of the ER and sat in the office of heart doctors who were pushing me out in 5 minutes.  Twice I was told that I HAD to go to the ER and I would be getting an ambulance if I did not comply. Each time, I would be written off.  One particular time I spent 8 hours in the Emergency Room with a great staff who really cared for me. The Resident said she would do everything she could to get the Attendee to admit me.  I don't know why it took so long, but at 7 hours and 50 minutes the sweet Resident comes in with her head down to tell me, "I'm sorry but you will have to go to your cardiologist".  After that long, I was too exhausted to fight, so I held my head down, and waited for my usual discharge papers.  I returned home, again with the same news.  

​Nothing.  

But we knew that something was wrong, so we continued to fight.  I knew deep down that if we didn't, then I wouldn't live to see 45.    

So yes, my natural response to a pacemaker after a brutal fight to find the right heart doctor was excitement. Cardiac arrest was a real thought that I kept to myself. Dr. Atiga would put my battery pack behind the muscle.  Luckily he understands Lyme, so he wrote me for inpatient surgery.  My gallbladder was a nightmare before I knew I had lyme.  Later we learned that surgery was devastating for me as the bacteria went nutso creating all of these Lyme flares all at once. 

The surgery went well, however I came out remembering everything because they keep you awake.  But now I remember nothing because they also give you an amnesia drug.  Dr. Atiga said they had to give me 10 times more sedation than the average patient!  I was shocked, but not really shocked.  Those Lyme, Bartonella and Babesia suckers were kicking my butt! Seizure spasms were constant for the first 24 hours. The pain was unbearable. For some reason they gave me on demand pain medicine that I would be able to press every 6 minutes.  Matt and I didn't understand this because I would push it until I fell asleep, then he would continue to push it until he fell asleep.  In the middle of the night I cried in pain as Matt and the nurse rushed around trying to get meds back in me and ice on my neck.  It took over an hour to get the pain to come back down.  

I had not been able to open my eyes all the way since the surgery, but I couldn't figure out why.  The next morning, I pried them open and Matt covered his mouth.  He said your one eye is going outward!  Both of us wish we had gotten a picture.  I was suffering so many lyme flares all at once, and they mess with the messages that are sent from the brain.  They love the central nervous system.  I had Matt continue to get ice for my neck and pain.  I kept telling him the ice pack is warm, and he didn't understand because it wasn't.  He laid it on my hand and it was freezing!  I had no feeling on my neck.  The ice had been laying there for hours at a time!  I wonder if I could have suffered frost bite! Haha!!  

The nurse practitioner decided that I would stay another night.

The next night wasn't any better, except that they were able to get me a private room.  I had great nurses until the nurse who came on that afternoon.  She didn't understand Lyme, nor did she understand my hospital stay after a pacemaker.  You see, most pacemakers are put in that morning and the patient leaves that night or the next morning.  She made it her mission to

Set me Straight.  

I'm sure you've all had someone like that in your life at some point.  The NP said she would like to work to get me from IV meds to pills so that we could transition me home.  I completely agreed.  However, our agreement was not meant to be immediate, so I thought.  Right after the NP left, this nurse was marching in pulling my IV. 

So here I am being moved to a private room, thank goodness.  However, no IV was hooked up.  From my understanding, I thought they would just stop the IV meds, not the IV fluids as well?  I had barely been able to eat since the night before the surgery. I had to ask for ensures to at least get nutrients.   All of a sudden I felt like the nurses were whispering behind my back that I'm just a drug seeker.  They did move me to pain pills, but having little food or fluids made me sick.  I could not sleep, as a migraine was approaching.  I asked the "new nurse" in my "private room" why they pulled the IV?  She said, "Well honey we have to at some point."  She left too quick for me to say "fluids".  I wasn't fond of the 6 minute push button anyway. The headache turned migraine and I asked for imitrex.  "Well we'd have to call the doctor for that."  That WOULD have relieved the migraine.  I had another type with me in my bag so she asked the doctor for that instead.  Matt and I were confused.  I started getting nauseas, so they came in with zofran, then phenegran (all pills, bc I had no IV).  Matt fell asleep.  I was still nauseas trying to sleep.  Then it happened.  I called Matt, "wake up Matt I'm going to throw up".  He didn't wake and the nurse didn't come, so I leaned over the side of the bed and threw up... a lot.  It was all fluids, but I covered the entire floor surrounding my bed.  So....

Everyone rushed in with an IV bag of zofran, and...

guess what...

IMITREX.  

Relief....
  • We don't want your narcotics.  

But we do want your sympathy, and we do want you to genuinely help us. The type of pain medicine we need are anti-inflammatories and nerve pain medicines.    

And an Imitrex or two.  ​

I keep getting hurt by these people.  I could have gone home; I had Iv fluids at home.  I have imitrex at home.  My concern was to monitor my heart after getting the pacemaker and having lyme flares.  But when you are dealing with people who don't even believe your disease exists, then they judge you. It's hard to go into the hospital and doctors offices over and over and the medical profession continue to treat you as a drug seeker or worst...

hypochondriac.

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“Gone in a Heartbeat: A Physician’s Search for True Healing,” Duke oncologist and researcher Dr. Neil Spector shares the shocking news he got from his surgeon on a Friday afternoon in 2009: “You’ll be dead by Monday unless you have a heart transplant.”...

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I was so blessed to be able to get a pacemaker.  Some questioned me posting this picture of me.  But it doesn't even do it justice, the type of pain, seizures, vision, lyme flares I was experiencing.  I often wondered how much of my heart was functioning.  I purchased Dr. Neil Spector's book.  I started to read, but then became afraid that it was going to match my story.

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     I write in order to give others hope during their trials, tribulations, and physical suffering. Jesus gives me hope and spiritual healing as I walk through the fire. My desire through my writing is that you would also gain hope through Jesus Christ. He died for the world to come to know Him and be saved by believing.

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