Goodbye Wonky Lady Parts!

Well. I did not die in surgery.
I really thought I was going to. And more often than not (as my family can attest!) I often am able to oddly predict things (though John always complains that I'm unable to predict the lottery numbers)

So all those Circus Peanuts, Twizzlers, ice cream, potato chips I ate thinking it was my last time on Earth, are now clinging to my thighs saying, "Haha, don't believe everything your "sick" sense tells you. Sick sense is like "sixth" sense - get it? Unless you are on Oxycodone you probably won't.

Anyway. I not only didn't die, but my surgery allegedly went fantastically. I was asleep, so what do I know? I had no adhesion's, and even my cysts had disappeared. UPDATE: 8/29/2014 - I received a copy of the pathology report, actually, I did, indeed have cysts. I had cysts in both fallopian tubes, in my follicles, and I also had fibroids and mild cystic cervicitis and benign basal endometrium (say that 5 times fast!). Remnants of the hemorrhagic cyst remained.
I am so glad that I asked for the report, because had I not, I would have wondered if the CAT scans had been wrong, if the pain had been in my head, etc... End of Update 8/29/2014

WHAT?

Dr. Ianieri assured me that cysts pop up and go away quickly, so this made me rethink everything. Perhaps all the abdominal pain had been the cysts coming/going. It's just a bit odd since one box of tampons has lasted me 2 years.

I'm praying giving my lady parts the boot will resolve the lower left abdominal pain. If not. I'm done. I'm tired of being poked, prodded, and that getting a second opinion often is so opposite from the first opinion that a third opinion is required.

Anyway, back to surgery:

Doylestown staff is quite awesome. For the most part. I mean, nothing is perfect (other than, of course, my Jewish Apple Cake) , I try to keep that in mind. Nurses/staff prior to surgery, in recovery, and in my room, were awesome.

I came out of anesthesia and I didn't feel that bad! As the night wore on, however, I spiked a fever, started having irregular heartbeats (oddly prior to surgery, my heart was smooth and not spazzing out!)

(I did go into an arrhythmia under anethisa, but they were able to take care of it. I know this only because someone told be while in recovery. I was a bit spaced out, so I'm not sure exactly what happened, but would have loved to have been given paperwork so I could share it with my cardiologist and keep it in my file. They gave me my blood work results when I was discharged (which I thought was great! Didn't even have to ask!) and my red cells and hemoglobin were down - my white cells were all over the place. I expected that, though. I've finally come to understand this is simply how my body reacts to infection/injury.)

I felt so horrible as the night wore on, I considered asking them to put me in a coma until my body adjusted itself. But then my fever went down, my heart stopped being irritable, and I was able to watch the Food Network so all was good.

I felt much better as the morning wore on. I was eating! Eggs! Bacon! Pizza! Then I went home. Slept all of Saturday. Sunday was horrible. My fever came back, the only thing I could eat were popsicles and then I promptly threw them all up.

Thank God for Ambien. I went to sleep that night, woke up Monday, and my fever was gone. I was now walking without pain and by Tuesday, I could lie on my sides in bed. Today - 7 days after surgery, and the pain is hardly noticeable. I'm dying to walk Jack (who has been pouting since last Friday when I skipped his daily walk - the first time since June!) but he weighs like, 80 pounds, and he pulls (bad training - I know this is my fault!). My anemia has set in, however, and this is the frustrating part. After I do anything minimal; dishes, walk (I'm up to 10 houses), shower, I have to take a break. I have shortness of breath (almost feels like a chest cold). But no fever. And so, other than WANTING to do more but not wanting to overdo it and make recovery longer, I'm doing fantastic - if I do say so myself.

This has been a crazy journey. Learned so many things (good and bad) about navigating the medical system - how important communication is (and how lacking it can be which only adds to more grief!).

Most importantly, I think I've FINALLY learned how to spell Dr. Ianieri's last name. Ian. IE (i before e), RI (Rhode Island).  Pronouncing it, however, is still a bit tricky.

Love Dr. Ianieri!!

These Are OR Scrubs...Oh, Are They?

The pains in my lower left side - let's just call it what it is, my freaking ovary - though never really left, started to rage again in early July.
To the point where, if I didn't have pain meds, I would be ending up in the ER again. I made an appointment with Dr. Ianieri. My blood pressure was so low, the nurse called in another nurse to take my blood pressure - 90/60.
I assured them it was normally low - perhaps not THAT low, but it wasn't too far off and I didn't think they should be pulling out the MAST pants.
Dr. Ianieri and I discussed the hysterectomy again. I voiced my concern that the cyst didn't seem to have gone away and I was not getting my period - maybe we should just go ahead and take everything out.
She agreed.
I did mention I was worried about my wonky heart history during surgery and my low red cell counts, but she said if the cardiac docs had given the green light, it shouldn't be a problem.
She asked me to get another ultrasound just to see where things were. We scheduled the appoinment for September.
On 7/25 I got another ultrasound.
Now, when I went in, the tech said, "You're having right sided pain?"
And I explained, no, it was left side. It has always been left side, but ONE medical record from 9/12/13 mistakenly noted that it was right flank pain.
I also explained I'd had a cyst that measure the same dimensions on CAT scans done on 9/12/13 and on 3/13/14 but that an ultrasound on 3/4/14 had missed the cyst.

Well, there was a cyst on my left ovary. This report said it was complex and hemorrhagic and just about the same size as what the CAT scans had reported. The 7/25 report said it was a "new" cyst, but how can they tell? I mean, possibly, but it seems strange that I'm not getting periods yet I'm frequently getting cysts on my ovaries and have constant pain - just some days worse than others with back pain  and shooting pain down my leg. I asked to move the surgery up. With the ongoing pain and now that the cyst was complex, better to get it out asap.

I wondered if perhaps this is what was causing my blood work to be off? Could it be that my body kept trying to fight the cyst?

On July 25th - I had a pre-op meeting with Dr. Ianieri. John came with me. I had questions and concerns: Is the low red cell count anything to worry about? No.
I asked about the cyst being new (are we sure it's not the same cyst that's been there since at least last September?) - she said that cysts come and go with periods. I had to remind her I wasn't getting my period. Which gave me some anxiety. Then she talked to me about what we were going to remove during the surgery as if suggesting we take it all, when I'd already agreed to that. She assured me I didn't have cancer. When John and I left, I was totally anxiety ridden.
It was almost as if she had totally forgotten our previous appointments.
"You're just nervous. Remember you said you totally liked her just a few weeks ago."
And I had. And I did. I do.
I had preadmissions blood work and an EKG done and the blood test results showed my red cells had come up to just the acceptable bottom limit, but now my white cells are low. Geez lousie.
But I am concerned that I'm still having palpations. That my red blood cells are still struggling. I'm petrified I'm going to go into cardiac arrest during surgery. Or that my body will shut down after surgery.
The good thing is, I've been eating Oreos and Twizzlers and really appreciating each day. I've been stocking up on trash magazines to read in the optimistic hope I will recover and I'm actually excited I'll be able to watch REAL TV in my hospital room. I'm excited Katie is going to be staying with me and making ME dinner for a change (nothing to exotic, just comfort food like Spaghettios with franks and Kraft mac n cheese).
And as John reminds me, it could be worse...it could be WAY WORSE: I could be living in a prison in China where they shoot the prisoners and then don't even bother to knock them out while they have student doctors try to repair them.
That John, always the eternal voice of rationality.

Neurotic Heart

Listen, because I was told "your palpations are "just a thing" -nothing to worry about...and because I know from being a paramedic that YES, some people do have excitable hearts...I believed the cardiac doc's in 2006 when they said my cardiac problems weren't really problems.
It wasn't until I had to get surgical clearance for my hysterectomy that I started to request reports that had been done. Now, granted, there weren't GLARING red flags - but there always seemed to be something a bit off. And in the EKG report from my visit on 3/13/2014 (there were two, interestingly enough) - one said their might be possible left atrium enlargement.
Dr. Kmetzo and Jennifer Brown didn't take me seriously; and I  had planned to see a cardiac doc affilated with Abington, wondering if perhaps Doylestown docs would stand as a united front in the case that something HAD been overlooked.
But then I realized the cyst on my ovary needed to come out sooner rather than later and I didn't really have time to start all over again with an Abington practice (not to mention my surgery was going to be done in Doylestown).
So I went to see Dr. Renee Sangrigoli with Doylestown Cardiology Associates for "surgery" clearance on the advice of Dr. Dinesen.
Well, she didn't even listen to my heart. LOL. I shouldn't laugh - but it's just so ridiculous that these doctors do NOTHING to alleviate anxiety. I guess she reviewed my medical charts because I handed her the reports from my arrhythmia during surgery and she barely glanced at them. I explained I was worried about my heart during surgery and she said there was nothing to worry about - I simply had a spot in my heart that often misfired but it wasn't anything that couldn't be easily managed. She gave me a form clearing me for surgery.
You hear that heart? You are fine. Stop over-reacting!

May - June -July

As the spring turned into summer and I forced myself to stop focusing on my health, I started to feel better. The start of May was rough. I still felt impending doom and cleared out and cleaned out my closets. I started to write my dying book again, and bounced between trying to get as much done as I could to simply enjoying each day for what it was.
But slowly, I started to find I wasn't scared I was going to have a heart attack while driving, my energy was picking up, my palpations slowed, as the days became warmer, my hands and feet started to warm and I started to be able to walk Jack and not become out of breath.
Things were starting to look up.
In July, however, I had an episode where I had severe pains in the middle of my chest. I'd eaten peanut butter and attributed the pains to the diverticulium.
Though I knew about this - it had really never been explained by Dr. Minissale what it was and how it would affect me.  The most he ever said was, "This should not be causing your problems."
So I went to see Dr. Fissel and touched base with him. I made an appointment to see Dr. Nack (new GI, trying to switch everything over to the Abington system) - but it wouldn't be until August that I could see him. Dr. Fissel was intrigued because he had never seen a diverticulium that large from the spot it was in.
By the time I saw Dr. Fissel, however, the pain had subsided. He wrote me a script for pain meds (over the counter meds doesn't ease that pain). Since I'd been feeling much more energetic - we decided to check my bloodwork and see if things had improved.
They did a bit - my red cell count was just a bit below normal, but my vitamin D was actually low, and my MVP was also low. My iron saturation had come up to normal levels though.
Yay. Progress!

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...