Had My Procedure/Minor Surgey For A Heart Loop Recorder 

15 Jun

Heart Loop Recorder 

Yesterday I had my procedure/minor surgery to insert my new loop recorder (ECG). There were a few things that nearly went wrong but it was a very easy procedure. If anyone is getting one maybe this will help. 

I had the old school heart monitors before like the hotter top and ones with wores everywhere and months ago I got the Zio patch for a few weeks. The issue was with the Zio is that I had the bad episode right after it was removed so it didn’t catch anything. So my cardiologist wanted a longer term heart monitor which this Reveal Linq loop recorder is an ECG that constantly records your heart and send the data to my cardiologist via wifi. So she will know the moment I have arythmia or pass out ….etc. Agaim this isn’t the POTS fainting episodes where I stand up, pass out and wake back up. These are 45 minute long episodes where I become incoherent, hear words backwards, can’t talk, have to lay down and still doesn’t fix the issue and I usually end up passed out and it takes 15 minutes to come back to “normal”. I turn gray and was told I looked like I was “dead” from witnesses. So it’s scary. 

This loop recorder will be in for 3 years and I hope it doesn’t catch anything bad but it would also be nice to know what’s going on. As far as the surgery part I will list detail below. 

The actual procedure/surgery takes about 3 hours due to all the prep time and paper work as it is treated like a major surgery and you sign forms. For makes they say e your chest and arm out areas. After that you get wheeled into the OR. It’s only a local lidocaine so you don’t need to be put under unless you can’t handle needles. The size of the needle is pretty large so they can get it into half of your chest. The recorder is implanted into the chest/boob/pect area. So you get the needle and being tolerant to most meds and lidocaine I was able to feel most of the needle sticks almost until the last one. I also felt the insertion of the device. I was told I would just feel tightness but I felt many details. But again like at the dentist it takes 3 shots for every 1 shot for a normal person in the mouth of lidocaine to numb me or I can feel the drill & major pain. So if you are good with lidocaine you should only feel a small pinch. 

They then make a small incision and use the tool above (like a gun) that shoots/injects the recorder into your chest. They then check to see if the recorder is working or talking to the doctor, device. After that they stitch you up or use derma bond (super glue). My blood is mysterious so one week I’m clotting and the next I can bleed out. I take blood thinners but when blood starts coming out of my ears I stop taking them for a while. With that said I have had a blood thinner or aspirin in months but I was bleeding out so the surgeon (my cardiologist) had to put pressure on the incision for a long period of time. Should only take like 5-10 minutes but took up me about 30 plus minutes due to the bleeding. They used derma bond on my instead of stitches and the nurse said the glue will be full of blood so don’t freak out lol. 

I’m pretty tolerant to normal pain so for me it doesn’t hurt very much. I’m doing great so far. Very easy fro, start to finsh. The sad part was someone passed away while I was there. If you are nervous about getting this done, it’s not bad and the reward outweighs the risk. 

Update: Heart Monitor Implant, Walking Pneumonia … 

3 Jun

Loop Recorder 

I’m getting my heart monitor known as a loop recorder procedure on June 14th. I had the 2 week Zio monitor recently but as soon as I took it off I had the episode. So this loop recorder will be implanted under my skin and record my heart for 3 years. We are hoping to catch any arythmia or abnormalities (or more like catch nothing). If there is no arythmia in the next 3 years my cardiologist says it’s more likely a neurological issue. The implant involves a shot of lidocaine to the chest area I believe and they cut a small incision and inject the loop recorder under the skin, near the heart. 

Walking Pneumnoia 

After suffering from a normal illness/lung infection for a week I suddenly had 104 fever and was hallucinating. I couldn’t talk, walk, see…. so my mom took me to a walk in prompt care where my doctor diagnosed me with what he thought was “bronchitis or walking pneumonia”. He gave me antibiotics but it was the family of abx that causes my restless leg syndrome to be much worse so I didn’t sleep for a week. He then switched me to Z-Pack (Zithromax) that was much better for my restless leg syndrome (RLS). I’m finally feeling a bit better getting the infection out of my lungs and no longer coughing or having low oxygen issues. For some reason at the doctors my Oxygen was going from 81%-86% which is crazy low but I think maybe the surgical mask I had on could have lowered my oxygen even worse? The walking pneumonia is getting better so back to my regular chronic illnesses and symptoms. The only difference I notice with the flu or pneumonia is the wet cough, colored phlegm, and higher fever than my usual daily fever. The other symptoms I already have daily so don’t really notice the change or notice when I am getting “normal people sick”. My temperature normally runs 94-95 degrees during the day and 100 degrees at night until usually 4-6am when I fall asleep. 

Neurologist Visit 

Saw my neurologist today. He wants to try and get me back on something for restless leg syndrome. I’ve tried many meds in the past like Lyrica but they made me gain weight and dizzier than usual. So I’m not sure which Med he’s giving me. He’s doing a sleep study on me soon with a pulseOx at home. I will also be getting more MRI updates on my C-Spine (neck), mid back and lumbar. He wants a brain scan but I just had one done two months ago. He’s trying to keep me from being “spastic”. So far the Keppra seems to be helping the myoclonic seizures. The heat of summer always makes me more exhausted than usual or dizzy so I just want to sleep all day. Lupus and the sun don’t mix so I don’t usually go out back I just stay on the couch or in bed. 
Hopefully things will start to get better. Like usual whe it rains it pours around our house. A lot of bad things going on and just trying to stay positive. Got to keep in mind it can be worse. Keep up the fight everyone! 

Bronchitis (Pneumonia?) Infection 

19 May

I’ve had a common cold for the last 4-5 days. Last night I fell asleep around 3-4am and woke up at 6am with very bad chills. I couldn’t open my eyes and my pain was severe in every organ, bone, muscle worse than the daily usual. I started hallucinating and I thought I was in the hospital so I recall answering “nurses” and “doctors” questions. I was talking for a few hours here and there telling what hurt and where. I later open my eyes and thought I saw a nurse. I was still talking. I had a fever of 104 (not my highest) but still enough to make me feel more horrible than my usual nightly fever and chills. 

I text my mom to come check on me and she woke me up when I finally able to fall asleep and scared me. But I noticed I was at home and wondered who I was talking to all morning? I could barely even move my leg in my bed that’s how bad the pain was. So my mom took me to the ER and the doctor said “sounds like an infection, bronchitis but we will check back if the antibiotics don’t work to see if it’s pneumonia”. Having PrimaryImmunodeficiency (PIDD) a common cold can turn into a death trap. So I’m hoping this doesn’t get worse. At age 19 I nearly died from elderly pneumonia having only 10% of my left lung working. That was a rough 2 months of recovery. 

It’s hard to think my brain is hurting worse than usual so I will end it here. I hope all of you are finding better days or a reason to smile. Hang in there everyone. 

Neurologist Appt & Carotid Artery Sonogram 

11 May

I saw my neurologist today and he upped the dose of my Keppra (anti-seizure/anti-convultant med) to 6 pills per day at 250mg each (1500mg per day). He wants to do a sleep study and more spinal MRI soon. I also had a carotid artery sonogram a few days ago. I don’t have the results yet but will see my cardiologist soon. 

Haven’t been feeling so well. Lupus and the heat don’t mix. I hope you all are finding better days. Hang in there! 

How Technology Has Helped My Memory Loss 

4 May

I feel like everything now runs like a clock, I take my meds when my phone reminds me, I watch my tv shows when my DVR records them and reminds me they were on, I go to my doctors when my mom or phone reminds me that it’s a new month, new day and time for an appoiment. I was a hard-working General Manager and my job was to balance budgets, be wise, efficient, on time and multi-task. 8-9 years ago I first started having the migraines at work which sent me home on one occasion. I then kept having “the flu” everyday at work with bad sciatic pain and hip pain. I knew my Lyme was no longer in remission and my other illnesses were breaking out. 

I was diagnosed with short term and long term memory loss. I could no longer remember anyone’s name, my friends or memories growing up and I couldn’t tell you what I did 5 minutes ago. It is scary losing memory at such a young age. I have no idea if this will lead to dementia or Alzheimer’s in the future or will I ever get my memory back. So far it’s been nearly 10 years and nothing has improved. I feel like I’m 90 years old and at the end of my life cycle. 

I used to wait for a certain day to watch my favorite tv show, like “hey dad it’s nearly Tuesday NCIS is on, wonder who the killer will be tonight”. Now it’s like “hey the DVR shows NCIS recorded a couple nights ago we missed it”. Then when I watch it I’m constantly saying “wait who is Agent so and so, who is that lady, I’m lost”. So tv shows are very hard to follow but thankfully DVRs remember the dates and times for me. As I’m writing this and without looking at my phone calendar I couldn’t tell you the month, day or time it is right now. Sometimes I don’t even remember the year. I think ne time I asked my mom if it was 2015. It’s scary. 

Without technology I would be so lost in this world. Without my parents I don’t think I would be able to take care of myself anymore. I made this blog to remember things I don’t remember writing or saying and to keep my life on technology. 

Modern Family Cast Does The Lyme Disease Challenge 

13 Apr


New Diagnoses, Anti-Seizure Meds & New Neurologist 

9 Apr

Myoclonic Seizures 

I finally saw a new neurologist in my new city. He said I had very “brisk” hyper reflexivity. He thinks I have a few different issues including a issue that causes my muscles to get weaker as I use them (the name slips me). He said I may be having seizures causing the long, weird fainting episodes (not the same as the Pots passing out). My cardiologist thinks it could be arrhythmia amd Neuro thinks it could be seizures. He did some testing and has diagnose me for now with myoclonic seizures or muscle jerking and involuntary movements. He has put me on Zeppra (Levetiracetam) which is an anti-consultant or anti-seizure Med. He seems very thorough and we will be doing a ton of testing for brain wave, sleep study, nerve testing….. Along with my heart testing over the months.