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.

DR. Kmetzo

On March 25 I had two appointments: Dr. Kmetzo a cardiologist and Dr. Eddy - a family doctor that was recommended by Dr. Jennifer White.
This entry is about Dr. Kmetzo.

I needed to see a cardiac doctor to clear me for surgery because of my cardiac history.

Dr. Kmetzo was recommended by a friend of the family. Later, when I decided to really get pro-active about becoming in charge of my health, I would learn that Dr. Kmetzo had reviewed my echocardiography report that I'd had on 10/23/2006. It noted mild mitral, tricuspid, and pulmonic regurgitation and mild buckling to the mitral valve (I was never told about this, however, I wouldn't learn this until 8 years later after searching for and requesting reports).

Kmetzo was nice enough. His nurse who set up the EKG was totally nice. Had just moved to the area and she was very friendly.

Kmetzo - he was okay. Not a great bedside manner, but not a cold one either. He seemed a bit dismissive of me - a young cheeful woman healthy woman compared to the 80 year old blue haired wispy ladies using oxygen tanks shuffling in the waiting room.

He gave me a script for a Nuclear Stress test.

Dr. Eddy - Thin Office Walls

Though I really like Dr. Rachel Notte - her office was quite a distance away. I'd made an appointment with Dr. Jarrod Eddy on the advice of Dr. Jennifer White from the Doylestown ER. She seemed to really like him.

While I liked Eddy - I disliked IMMENSELY the office. When I walked in, the receptionist at the window was leaving a message about a medical issue on someones voicemail. She said, "Hi Mr. Mercury, we have your test results back. You do an pneumonia and we've called in a prescription for..." (I've fictionalized the name and medical condition) - I was horrified. Though in a day and age where we seem to give up privacy freely (Facebook, Four Square (now Swarm) Twitter, etc) - I do feel there should still be some privacy and the doctors office should certainly be one of them! The waiting room was just...blah. Horrible music playing. And it smelled like diapers. Dirty diapers.
I waited about 15 minutes for the doctor. I don't usually mind waiting if there are good magazines, but there were none.
The exam room was horrible. Looked like it had been around since 1966. I was given a paper thin gown and told to wait. While I sat on the exam table in the horrible flimsy paper gown (this was a far cry from Dr. Notte interviewing me while I had all my clothes ON first) I waited. Again. And while I waited, I could hear someone getting upset in another room about someone not calling back her mother about a message. There was an argument. Again, I was mortified that I could hear SO MUCH. Dr. Eddy finally came in after about 15 minutes and apologized for running late. He seemed to think my symptoms pointed to a hernia. He gave me some Xanax for my palpitations and/or two take 2 prior to bedtime (I wanted to try and get off Ambien). . He also gave me a script for Protonix something for acid reflux (I didn't fill that script). He told me NOT to take any antibiotics - he thought what ever was wrong with me didn't need any Cipro or anything similar.
He questioned why Dr. Minissale was sending me for an MRII had no idea. I was going for the MRI because Dr. Minissale recommended I go for an MRI.
"You don't need the MRI. The CAT scan you've had already shows you have diverticuli and a hematoma on your liver. I don't really think you need the MRI."

Huh. Now I was confused. Did I really need an MRI? Now again, I had conflicting ideas from different doctors about what was possibly wrong with me. The only one thing I knew for sure, I was super tired of doctors, and getting no better.

I liked Dr. Eddy - but I did not like (at all!) the lack of privacy from the front office leaving messages right in front of waiting patients to the thin exam walls that allowed me to hear a very unhappy patient to the crappy exam rooms.

Dr. Rachel Notte - Super Smart & Fairy Dusted

On March 20th - I had an appointment with Dr. Rachel Notte. She is the wife of my former family Dr. - Dr. Christopher Notte (whom most people love - must be that fairy dust Dr. Ukropec states was sprinkled in his hair!).

At this point in my medical journey - I'm still searching for a new family doctor; it's important to me that I feel I can trust my family doctor. That we mesh. That they listen.

She is not taking new patients - so I was very grateful that she made an exception to see me. Her office is located in Warminster and that's about a half n hour from my house. During my illness - I've become very apprehensive about driving. Not only am I tired, but my heart palpitations have started to return and I'm scared to death that I'll have some sort of attack while driving. My mind has been very forgetful also, and I've been having trouble "finding" the right words - I know what I want to say, but I can't seem to get the correct word out. The pain in my lower left comes and goes and it also seems to hover right above my pelvic bone. Most troublesome is that when I try to walk Jack, I become very short of breath, and in the shower, short of breath and have to lay (lie?) down for about 20 minutes after I shower. In the morning, I have energy and feel like I'm fine - but around noon - I start a fast slide downhill - my heart races, become exhausted, the pain increases, it's crazy.

Anway - the front office staff at Dr. Notte's is great. Super sweet and friendly. The exam rooms are nice. Clean. Dr. Notte spoke with me for about an hour - while I was fully dressed! I love when doctors talk to you while you are wearing clothes BEFORE they exam you. It makes you feel like they are treating you with respect - and not like you're simply a medical object. Dr. Notte really listened. And I mean, I threw a-lot at her - my cardiac history, my gyn history, my current pain, symptoms, my abnormal labs. Can I just point out - she's married to a doctor and has two children? I don't know how she does it - but she does and she does it brilliantly!

She ordered more lab tests and I made a follow up appointment. I think she might have fairy dust in her her also.

Dr. Gerstein - One More Time!

After seeing Dr. Dinesen, I got a call the next day from Doylestown Gynecology. They wanted to know why Dr. Dinesen was requesting a transfer of my records. I was honest. I told them about my horrible experience with PAC Frederick.

They asked for another chance.  So, I was quite touched that they actually wanted to win my business back and so, on March 19th, 2014,  I went to see Dr. Gerstein. She was extremely nice. Really took time to talk to me...but, honestly, she didn't seem to take my symptoms seriously and tried to talk me out of hysterectomy (which I was considering and which Dr. Dinesen had agreed given my family history and my current problems and ongoing cyst, it might be a good thing). She also totally contradicted Dinesen and backed up Frederick and said, "Ultrasounds Don't Lie, CAT scans do!" So I decided to get a third opinion and in between that time of waiting to see the new doctor - the cyst is now complex and hemorrhagic. So, I can't recommend this practice who kept assuring me there was nothing to worry about and didn't take my concerns at all seriously (and they also tried to point out Dr. Dinesen delivers babies and they do NOT, implying that my best bet is their practice because he is so busy). Also, people, remember you are your own best advocate and know your body best!

(update: On July 25 2014, that cyst that allegedly didn't show up on the ultrasound on March 4th, yet showed up on CAT scans, is now reported to be a complex hemorrhagic cysts after a second ultrasound).