Finish Line! Dr. Fissel -

Finally - on April 24th I met with the very last doctor I had "booked" when things first started going south for me back in February. Dr. Fissel came highly recommended and it seemed everyone I knew was seeing him. It was even revealed to me that a few of the doctors I had seen were patients of Dr. Fissel and his partners!
The location was close to home. The front office staff - very nice! The nurse, very nice! And Dr. Fissel listened. At this point, it was simply me explaining what I had been going through - all the doctors I had seen. I also told him that I was done for awhile. I had spent almost 2 months doing nothing but visiting specialists, trying to find a new family doctor, and becoming apprehensive about Doylestown's medical system.

I had learned that Abington and Doylestown didn't exactly share information freely and easily. I supposed it was like the Flyers vs the Penguins. There was a sort of rivalry.

I wanted to take a break from health issues. And then perhaps in a few months, I'd start over again. I'd see a cardiac person from the Abington system and an Ob/Gyn from the Abington system. I was still concerned about my heart and wanted to get to the root of the cause of the fluttering. And though I liked both Dr. Ianieri and Dr. Dinesen, perhaps it would be best if all my medical docs were all through the same system...it made sense.

I left without any more insight into what was causing my body to be misbehavin, but I did leave relieved that finally, FINALLY, I had a family doctor that was close to home, that listened, that had a personality, that had a great staff.

Hematologist - Dr. Zipin

On April 21st I saw Dr. Zipin - a hematologist at Alliance Cancer Specialists. Since March, my red blood cells had been consistently low, yet my iron and b12's were fine but my iron saturation was low.  My white cells went from low to high to normal.
I waited for almost an hour past my scheduled time (and I'd arrived 15 minutes early). I'd had to fill out about a 20 page report prior to my arrival (seriously, if all this shit is online through their freaking online webportals, why do I have to constantly fill out paperwork?) - I described my symptoms - fatigue, palpations, coldness, shortness of breath, bloating, and he...pretty much dismissed me. Once again, I felt like here was a doctor focused on what the 'equipment' was telling them. YES, my blood work was abnormal, but only slightly. If something was really wrong, the number would be off the chart. I wondered if there was some sort of flag in their system that advised doctors "Don't reassure this patient that all is well, instead, make her feel like she is wasting your valuable time."
Well, the bright side was, I could knock this doctor off my list.
I'd seen a GI.
I'd seen (several) Ob/Gyn
I'd seen cardiac.
I'd seen family doctors.

No one could accuse me of NOT trying to seek a solution!

Smorgasbord of Medicine

On Friday - I took all my scripts for antibiotics from various doctors and decided to fill them. I wasn't getting better - maybe if I took the antibiotics, I'd knock out whatever it was that was going on. Then when I picked them up, I read the warnings. I should not be taking them if I had heart arrhythmias. Oh for fucks sake.
I hate antibiotics anyway. I promptly put them in the "save for the Apocalypse" spot in the closet and forget about them.
I did, however, fill the lopressor medication as the palpations were still really bothering me. Since I wasn't a medic any longer (I didn't like taking them when I was a medic because they made me lightheaded and dizzy) - I figured I could take them as long as I didn't plan on driving and could lay down if I got dizzy.
I also decided to stop taking all vitamins. My iron and B12 levels were great, so that wasn't a problem. Maybe if I just cleared out my system...

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!