Dr. Ianieri

Dr. Ianieri (I've still no idea how to pronounce it, and forget spelling it!) came highly recommended by my sister in law. She was great. Down to earth. I filled her in on what had been going on and said that I was leaning toward a hysterectomy but the fact was, I was so tired of doctors at this point, I just wanted a breather. I have her copies of my lab reports, copies of my CAT scan and mentioned I was worried about the cyst, but she seemed to feel it was small enough and nothing to worry about. When I was ready to talk about surgery, or if anything happened in the meantime, touch base with her again.
She was super nice, down to earth - she felt more like a person you'd want to have a drink with than a doctor you'd want to spread your legs for!
She started to restore my faith in the Doylestown medical community.

Dr. Laura Freed

The days following my halter monitor incident were not great. I was increasingly getting cold hands/feet - it seemed following anytime I would eat, about and hour later I'd have palpations and coldness would set in. My blood pressure was really low - averaging in around 96/60. The left side of my heart felt like it was shearing off on April 14th. I'd become super bloated when eating, and of course, the pain in my left side was still present, though it would come and ago and felt like it was the least of my worries at this point.
I'd started keeping a food diary (could it be food?) - and symptom log. I Just. Wanted. To. Get. Better. It was really getting ridiculous. I wanted answers. If I could just figure out what the fuck was wrong I tried to figure out how to make it right. I spent the "good" hours I had on Google reading about symptoms and signs and stories of other people who had gone through similar things. I was pretty confident by this time, I was a licensed Google doctor, having logged in enough hours to earn my own white coat (see what I did there?).
The good thing about searching the internet; it gave me comfort and hope. The bad thing - it worried me that so many people were frustrated with the health care system - and if it (the health care system) was overloaded now, what the heck was going to happen when EVERYONE had health care and the government stepped in to become the head of the serpent?
Arrghhh!

Blood Doesn't Affect Your Heart!

On the morning of April 11th (Friday) - my palpations were in full swing and now I also had this odd warming sensation around my heart. My calves were cramping, and I'd been using two pillows to prop myself up at night to make it easier to breathe.
I called Dr. Kmetzo's office and they said they could fit me in at the Chalfont office with CRNP Jennifer Brown.
I went in for an appointment and while Brown was nice - I found it interesting that she didn't take my blood pressure, didn't take my pulse ox when I had told her my history of anemia. She told me blood counts don't matter (really? because I was pretty sure that an infected/injured heart could affect blood cells and be the cause of anemia) She didn't put me on a heart monitor but she did listen to my heart with a stethoscope and said she did hear PVC's. She sent me home with a halter monitor but because we didn't have a home phone, I'd have to drop off the monitor to download it after I had recorded 5 episodes of PVC's. WHAT? FIVE episodes? My heart was beating irregularly constantly! I'd be back in a freaking hour! She gave me a prescription for Lopressor even though I explained I had LOW BLOOD pressure and they tried to put me on that back in 2006 and it only made me dizzy. Sigh.
I put it on, left, went home. Had a few episodes of fluttering on my way home, recorded it, and when I got home, took it off, walked Jack, (and while walking, the fluttering seems to calm down) and then put it on. Well, in less than half an hour, I had used up all "Five" slots and now had to go download the halter monitor to free up room. God, this was ridiculous. Would I be running back and forth all day? All weekend?
I sat outside and tried to wait out the fluttering. I hated to go back to the office. It wasn't getting better, however, it was getting worse.
I decided to drop off the monitor and while driving over (a short 10 minute drive) - my arm was tingling, I was having heaviness in my chest. When I went in to turn in the monitor, I asked if they could put me on a monitor - I explained the symptoms I was having.  They hooked me up to take a 12 second strip and I wasn't surprised when it didn't show my PVC's (as those quick strips never do). I asked if they could hook me up to a regular monitor and they said they don't have one. What? Isn't that kind of like going to an ice cream shop and finding out they don't have any ice cream dippers? They didn't take my blood pressure, they didn't check a pulse ox. I was complaining of trouble breathing and they didn't even offer me any oxygen. I knew they probably thought I was having an anxiety attack (hmmm, would anxiety cause me to go into bigmeny and trigemeny while under anesthesia?) - but even if I was having an anxiety attack - I knew from my work as a paramedic, be calm with the patient, be reassuring, and put an oxygen mask on their face but don't give them oxygen...often that will call them down.
I got none of that. I got this:
"Have a seat in the waiting room and wait for Brown."
Ok.
Twenty minutes later, the anger I was feeling at the way I'd been dismissed and not taken seriously did not help my heart which was now bounding out of my chest. I asked for a copy of my halter monitor report and said that I was leaving. They gave me the report (it showed I had multiple PVC's) and off I went. I considered going to the ER - but after the visit on March 31st - I worried I would be taken as seriously as the staff at Central Bucks Cardiology treated me. My had lost most of my faith in Doylestown doctors. With the exception of Dr. Jennifer White and Dr. Dinesen. I had one last doctor to see, Dr. Ianieri. She would be the last ob/gyn and be the tie breaker on if I should have a complete hysterectomy. I'd made the appointment over a month ago - I was tempted to just cancel it and give up on everything Doylestown, but my sister in law had loved her so I was willing to give it a chance.

Nuclear Cardiac Stress Test

The morning of April 9th, I had a cardiac stress test at the Womens Health Center in Warrington. I love the place. It's got a gym, a cafe, a pond. It's gorgeous. This test went something like this: inject stuff into my veins, take pictures of my heart, then run on a treadmill. The report said that there were rare PAC's throughout.
I realized I should have made the appointment for the end of the day - that's when I was experiencing most of my palpations. And the funny thing, when I exercised or walked, I was usually able to stop the palpations. The staff was very friendly and they had great magazines to read that were up to date (really, this is important when you have to wait).

Something That Will Change Your Life

On April 3rd, I really thought I was dying. I sat outside and started to write to my kids - the last, best advice I could ever give to them.
I was angry and confused and sad and my heart was skipping constantly. By the afternoons I could barely lift my head off the couch. I had spent all of March trying to find answers - trying to find the a new family doctor that ticked all the right boxes (close to home, great character, communicator, nice staff).
The pain in my left side came and went, but wasn't as bothersome as my heart. I really struggled to walk Jack, my breath always coming up short.
I only wrote a few pages before I was too tired to continue. And wondered if it mattered anyway.
Then guess what? I didn't die!
I went to bed early (Ambien!) and the next morning, got up and was fine in the morning. Then in the afternoon - I was back to writing my dying notes again.
But I didn't die.
This cycle would continue a few weeks more. I started to bruise horribly. Became weaker. My heart was wonky all month long, many nights around 5-7pm it would race, I'd feel pain, and thought, "This is it!" I'd lie down and either prepare to die (I was pretty accepting by this point) or not. Obviously, I didn't die.
I'd go from wanting to figure out whatever it was so I could find a way to make myself better - to wanting to just STOP trying to figure it out and just let whatever happen, happen. Just as my health bounced back and forth, my will bounced back and forth.

One thing I did decide, was to write a book about my experience...when you think you're going to die, you start to question everything. You discover what is important. Your go over choices you've made.

I've try to be that person that takes lemons and makes lemonade - that person that sees the sliver lining in every cloud. I'd found much solace in searching online for people going through what I was going through. Other people sharing their stories was HUGE. It gave me hope. It gave me knowledge. It gave me optimism.

But it seemed kinda ridiculous to write a book about dying when I had no idea if I was dying. I mean, we are all terminal, right? We are all dying.

But what if whatever it is I had was just a virus that was hanging on like an ex-boyfriend who refuses to accept he's no longer wanted?

I started and stopped my book; Something That Will Change Your Life (man, that is the BEST TITLE EVER!) many times. I have notebooks filled with advice on power, on sex, on love, on independence, on being authentic. I couldn't somehow loop them together though. I was also worried they weren't perfect - and I didn't feel I had the energy to revise and rewrite. And that brain fog, man, I just couldn't get passed it.

I was terribly disappointed that, at the start of 2014 - I had been set on making 2014 my best year EVER! I was going to write a book a month, make more videos, I was going to run for president (just to make a point that politics is a joke).

Ah, the best laid plans...

I guess my point to this entry is that all of April (and the rest of the summer, as a matter of fact) - I spent in some odd suspension. Afraid to tell my story -because I didn't want to piss off doctors and/or the medical profession-and I didn't want them to treat me (or worse NOT treat me) because I share my experiences. I was afraid that there is nothing seriously wrong after all. I was afraid that if I do have limited time left - maybe I should be spending it simply reading and doing things that make me happy. Eating Twizzlers. Oreos. Fried chicken. Drinking. Whoohoo! But then...what if I didn't die? Then I'd just have to lose weight again! And I could have accomplished SOMETHING. So basically, I ended up spending most of the summer battling myself, and going back and forth between having faith in myself to doubting myself. To getting things done to really slacking (watching Big Brother Live Feeds - total slacker). The one thing I can say with pride is that I walked Jack every day in July, so far everyday of August (writing this on August 12th) and everyday but 2 days of June. That's something I guess!

Dr. Rachel Notte (part 2)

A follow up with Dr. Notte on April 2nd. I'm still feeling miserable. The very odd thing is that in the morning, it's like I'm healed. I''m perfect. Every morning I think I'm imagining things. But then by afternoon - WHAM. I slow down, my heart goes into palpations, I become very cold (mostly my hands/feet). My brain is in a total fog.
The recent visit to the ER shows again that my blood work is abnormal.
Dr. Notte sends me for lab work. She wants to rule out that it might be a neurological condition. I wonder if I should see a hematologist? She recommends a few. I explain to her that I do have an appointment with Dr. Brett Fissel at the end of April. He was recommended by several friends and he is much closer to me. I'd made the appointment prior to her accepting me into her practice. She is totally okay with that (probably relieved!) and is understanding.

Doctor Rachel Notte would later communicate my blood test results and even when so far as to send me a personal text wishing me luck. I can't say enough good things about her and her husband (Dr. Chris Notte). They are caring, very family oriented, smart, and actually treat people like...people!

If I had enough money, I'd sign them both up for bacon of the month club!

March 31st - MRI and ER Visit - Mean Jean (worst mean nurse EVER!) Doylestown ER

On March 31st - I reported to Doylestown hospital early in the morning for an MRI. I was feeling good (I usually did in the mornings). The guy doing the MRI asked me what kind of music I wanted to listen to. I picked Country. Turns out, he LOVED Country music and so we started talking about what concerts he'd been to, who he liked the best. He was very cool and made me feel totally at ease. Funny thing was, he mentioned also why I would be getting an MRI if I'd already had a CAT scan. I, who generally felt I was "in the know" when it came to my health (getting copies of reports/labs/etc) started to question if I was really as proactive as I thought. Two medical people questioned why I was getting an MRI when a CAT scan had already shown what was wrong. But here's the thing - I'd liked Dr. Minissale, so when he said, "Get an MRI" - I just said, "Okay!" Perhaps I should have asked why, and what information would it provide that wasn't provided by the CAT scan...

Anyway. After the MRI, they gave me a copy of the MRI on CD so I could give it to any doctor who may ask for it in the future. I thought that was awesome. I think we should automatically receive copies of our labs/EKG/reports - we shouldn't have to request them.

I'm in a great mood. I'm feeling positive! I feel I'm NOT dying! I get home and go on line and start to work and I'm working for about an hour when suddenly - I feel 3 strong very forceful palpitations from my heart.  BOOM! BOOM! BOOM!

What. The. Fuck.
I had to fast the night before the MRI and had been given injection dye. After the MRI, I had a Diet Coke...I wonder if perhaps it's the caffeine on an empty stomach? I wait for it to pass but those three original palpitations seemed to set off a constant parade of palpitations. Fuck! I don't have time for this! I just WANT TO GET BACK ON TRACK WITH LIFE AND FEEL HEALTHY AGAIN. I take a Xanax and lay (lie) down. They don't go away. Now I'm having shortness of breath but think this is because I'm beginning to become fearful. What if this is the end? Should I go to the ER? Should I wait for it to pass? What if I was having a heart attack and am wasting time. But what if it was just my excitable heart being...well, excitable?
Finally, I turn to John and say, "Let's go - just to make sure."
Of COURSE, on the way over, my heart starts to calm down a bit.
Upon arriving at Doylestown ER, they hook me up to a monitor and take a quick look at my heart. It looks good. It ALWAYS does when they do this. Back in 2006 when I was in ER for palpitations, they did the same thing and everything looked fine. Then they hooked me up to bedside monitor and the PVC's were so frequent they kept setting off alarms!
They take me to a room, hook me up to the monitor and things look ok. A bit fast, a rare PVC, but nothing for me to freak out about. The nurse, Jean, seems really annoyed by me. Is it because this is my third visit in a month? Perhaps. But I'm being extremely co-operative and nice (as I always am). I worked in EMS, I know ER nurses and docs are often overwhelmed and are treated like crap from a few patients (and nurses are treated like crap from some docs too). But man, is this old lady nurse named Jean REALLY giving me attitude. My blood work comes back - my red cells and my  hemocrit are down and my MCH is high. This concerns me. During my other 2 ER visits, my blood work came back abnormal also. SOMETHING WAS WRONG. Since the end of February when this all started, I'd seen 7 doctors, been in the ER 3times, and though everyone seemed to admit something was wrong, no one could seem to figure out WHAT.
Dr. McHugh was the ER doc and he seemed nice enough - but very busy. He sent me for a chest Xray and when I came back - I was suddenly thirsty and had a raging headache. My blood pressure (which is normally 90/60 - was now 134/86. My heart rate was climbing - I felt the pounding in my chest and started to panic. I buzzed the nurse. Jean came in all but rolling her eyes. "Yes?"
"My blood pressure shot up, I have a sudden headache - my heart is racing." - I pointed to the monitor which my heart rate was 140 and rising.
She sighed as if I'd just told her I shit the bed and she'd have to clean it up.
"It's just because you're in the hospital - your blood pressure is actually fine."
"Not for me, my pressure is very low normally."
"Well, your fine."
OHMYFUCKINGGOD. She was a royal bitch and instead of calming me down or reassuring me, she was making my situation WORSE. When she left, I took out my iPhone and recorded the SVT rhythm that my heart was now in. I buzzed again.
Jean shuffled in. "I want a new nurse - you're not taking me seriously."
"Fine."
In comes the nurse in charge. She took Jean's side. She was a bitch too. I couldn't believe this. I wasn't in the ER looking for drugs. I didn't get any and didn't ask for any. What I wanted was answers and to be assured I wasn't having a fucking heart attack! And instead of calming me, they were provoking me.
Dr. McHugh came in the room and said all reports (except my labs) looked fine and I was free to go. He saw the SVT on the monitor and while he talked to me, the rate slowly climbed down. While he was nice enough, and I understand there's really not much he could have done, he failed to mention my run of SVT in the report. Nor did he mention in the report the spike in my blood pressure. The EKG report mentioned that my ST was now depressed when compared to the EKG they had taken on 3/13/2014.
The nurse that came in to give me my discharge papers was very very cool. He explained that Jean was close to retiring and she wasn't just that way with me, she was that way with most people. He said the staff had the same complaints about her!
I left that ER feeling beaten, mortified, embarrassed, and angry. Now I seriously was starting to distrust the Doylestown medical system. Again, the reason why I'm frustrated is that when it comes to my cardiac history, I went to Doylestown ER in 2006 with palpations, followed up with cardiac testing only to be told it was "nothing" and "harmless" - so I believed this. Then when I had surgery in 2007 - I went into bigemny and trigemny under anesthesia. Even when I came out of that, I blew it off because I was told a year prior, all was well. So the past few years, I shrugged off palpitations and now am wondering...wait, could it be my heart causing all this abnormal blood work? Is my heart causing my fatigue, and anemia? And yet, I guess because there is no OBVIOUS flags (I'm not unresponsive!) they just send me on my merry way.