Words
I like big words. They carry with them an opportunity to better claim a more distinctive thought, feeling, or thing.
In the medical world, though, the need to be more distinct, specific, and exact can be a blessing or a curse. It's good if you're a top-notch specialist needing to deeply articulate the intricacies of the human body, perhaps frustrating if you're a first-year med student trying to memorize even the shortest medical words. It's good if you're a patient wanting a doctor to knowledgeably navigate the convolutions of your heart, yet disappointing if you're wishing to get better and receive a troublesome test result in several verbose words. The longer the word, well, you get the idea.
My words of late have been both big phrases and big words. Patent ovale foramen. Primary sclerosing cholangitis. Thrombocytopenia. Chronic thrombosis. Innumerable esophageal, gastrohepatic ligament, peri-splenic varices. Massively dilated. Infarct. Splenomegaly with massive collaterals. Pulmonary arteriovenous malformations. Portal venous hypertension.
I'm going to vote for despising big words lately.
But you know, it's not just the big words. Some little words and certain small phrase shave enough power to silence an entire room.
She's sick. End-stage liver disease. Broken. Confusion. Paralyzed by fear. She's crying.
Yes, sometimes silence is truly golden, especially when a record spins over and over and over with what should remain unthought of, unspoken.
Today was one of those days.
Yesterday was one of those days.
Everyday lately is just one of those days.
Two+ Weeks
Rewind to the other Tuesday, the day after Memorial Day. The worst day of my life, and not because I had a not-so-great visit with my liver specialist. After I met with Dr. Hupertz and we discussed my upcoming procedure and my progressing end-stage liver disease symptoms (like this new phase I'm in with waking up 2-3 times each night for a few hours each), something happened (I'll spare you details) that turned my entire world upside down. I spent Wednesday in bed unable to move. It was beyond terrible.
That Thursday I went up to Cleveland for an IV-contrast CT scan of my abdomen, typical liver test, no big deal. Well except the Barium - 2 huge bottles of that nasty chalky stuff. Okay, not that bad. Honestly, the results are always worse than the actual test. But I'll get to that later.
The weekend came and went, and Monday was Cardiologist Day. In part of my transplant workup, I had an abnormal EKG. The solution to that was a referral to go see my John Hopkins-trained, award-winning cardiologist at the Cleveland Clinic to check it out and hopefully give me cardiac clearance. I went and saw her a few weeks ago.
Good news came first... the EKG was nothing to worry about. The abnormality was with the T-wave, which represents the repolarization of the heart. A T-wave abnormality like mine usually indicates an issue with the body's metabolism and Ph levels. Many things can disrupt the body's metabolism (and thus Ph level) - from anxiety to serious diseases. Even though my previous EKGs were normal, Dr. Prieto said the reading was nonspecific, and the abnormality was so subtle that a cardiologist reading the EKG might not even pick it up.
The bad news, however, was the whole issue with cardiac clearance for the liver transplant workup. There were two problems, both diagnosed by agitated saline intravenous injections during echocardiograms ("echos") - pulmonary arteriovenous malformations (Pulmonary AVMs) and a patent foramen ovale (PFO).
First of all, I've known about my pulmonary AVMs for a few years now. Uncleansed blood normally goes from the pulmonary artery (right side of the heart) into the lungs to be filtered, and then it flows through the pulmonary vein back to the heart where it is then set off to supply the body with clean, oxygen-rich blood. In the case of PAVMs, or right-to-left shunting, tiny perforations surround the lungs' capillary beds, so uncleansed blood bypasses the gas-exchanging alveoli to go directly into the pulmonary vein (left side of the heart) without ever getting filtered. In short, blood doesn't get a chance to get its CO2 exchanged for O2 so toxins circulate and cause fatigue and shortness of breath, among other possible symptoms.
Secondly, there is something called a patent foramen ovale (PFO), a defect in the atrial septum (the wall between the two atria, or upper chambers, of the heart) where instead of being a solid wall, there is a little flap. Everyone is born with a PFO, but as the person grows, they usually (75-80% of the time) close on their own. Even if they don't close, they're usually not problematic. However, there is a newly developing theory regarding transplant patients with PFOs. Scientists are seeming to think that somehow PFOs in transplant patients are directly correlated with IVC (inferior vena cava) thrombosis, which is related to prevalent strokes and other types of embolism. The theory also notes the commonly seen scenario of a thrombus (blood clot) forming in the right side of the heart, going through the PFO, and ending up in the left chambers of the heart where it can become an embolism, going out to the body. The thrombi alone aren't as much as a problem as is the possibility of embolism (the clot traveling until it plugs up another vessel). The ultimate embolism is the type that gets lodged in the vessels of the brain, directly causing a stroke.
Although we knew about the pulmonary AVMs, the doctors signing off on my previous contrast echos never mentioned a PFO. To be mostly certain I didn't have a PFO, Dr. Prieto suggested a new echo. If I had a PFO, she would do a heart cath to fix it. If we didn't find one, it was safe to assume I likely didn't have one.
So fast forward to last Monday.
Monday morning, I woke up and the sun was shining. Then I checked my email and saw a message from my specialist. The CT results from last Thursday were here.
Words. Lots of words. Big, huge words that meant bad, bad things, and tiny words that spoke for themselves.
Innumerable esophageal, gastrohepatic ligament, peri-splenic varices. Left renal vein is massively dialed. Spleen measures 21cm in length. Some splenic infarction (tissue death due to loss of blood supply). Cirrhosis. Portal hypertension. Portal vein thrombosis. Marked splenomegaly with massive collaterals. Spleno-renal shunt. Multiple large esophageal and paraesophageal varices. Portal venous hypertension.
As if that isn't a great way to start a week.
Anyways, next up on Monday was a trip to Cleveland to see Dr. Prieto again, this time for the echo. We did all the workup, the echo, the IV of agitated saline bubbles... thank goodness, there was no PFO.
Then I get a phone call. My transplant coordinator's scheduler saw that I was up at the Clinic that day and wanted me to come see her to coordinate our schedules so we could book the pre-transplant "people" appointments. You know... meeting the surgeon, anesthesiologist, social worker, infectious disease physician, psychiatrist, financial counselor... all kinds of excitement.
Needless to say, on Tuesday, major napping occurred.
Wednesday ... Cleveland again, surprise surprise. Back to the high-risk OBGYN to get a repeat test of a test her office "misplaced" (Not even kidding.) ... a test the transplant phase 1 requires. Anyhow, conveniently (ha) she also found out my newly-placed IUD (to prevent cancer, not babies.... long story) was "hiding" and wanted to do an ultrasound to make sure it was intact and where it was supposed to be, not perforating my uterus. Although at this point, something like that wouldn't really surprise me. Anyhow, she did the ultrasound and good news, the IUD was just hiding, no big deal. Then my doctor went silent, stepped back, and whispered, "Wow...." So of course, I wondered if that's was good or bad, and I asked what she saw. She said my ovaries were completely filled with developing eggs. She couldn't believe it either. Of course that did not make my day, seeing that she assured me during the last visit that there was no possible way I was in a state of health to carry a child and survive. Sure, part of me is relieved that I am capable of producing eggs - after all, with so many things wrong, I wouldn't be surprised if I suffered from infertility. However, each and every one of those precious, amazing things... the things my body produced (a job it can actually do right!) will never see the light of day. That's what hurts the most. Deeply.
That was pretty much the end of Wednesday as I didn't feel like doing anything else. On the way home - the way I've driven a million times before - I completely missed my highway exit and ended up 25 minutes from my house way across town. Exhaustion + being a basket case = seriously fun times. That night, Jonathan and I went to his sister's and chilled till we were both ready to fall over asleep. In the morning, on Thursday, my mom picked me up and so kindly drove me up to Cleveland again, this time for a series of ultrasounds, for the transplant workup and also just as regular observation for my liver disease. No big deal, just annoying I guess. I laid and watched The View while the tech about killed me with the transducer, but that's a different story... Just part of the job of being sick.
It was hurry-back afterwards since I had an appointment with my (amazing) therapist at 1pm in downtown Akron. I feel we really had a good session. We covered a lot of things, and it was great to get everything off of my chest. She can always see where I'm coming from, and she gently introduces new perspectives and ways of thinking about things. She's saved my life a zillion times just by keeping me from ending up in the ER with a panic attack.... like the good old days. (Thank God we're beyond that now...)
After therapy, I had a massotherapy appointment with a new massotherapist. It was my 2nd attempt to replace my current massotherapist, and as usual, to no avail. Thursday's massotherapist was amazing at finding the pressure points, but she didn't seem to know how to release them. I liked how she kept talking to a minimum and was very rhythmic in her technique, but after 1/2 hour, I was wishing it was over. If you're used to massotherapy, you know how you need the pressure points released, and without that, well, I felt like she was trying to kill me... slowly and painfully! I think I actually underestimated the "damage," as I was on muscle relaxers all weekend. So the search is on again....
Then came Friday. Although exhausted from a few weeks of non-stop appointments and overwhelmed by a long week, Friday was just another day in the week for me. More of the same. This time, a visit with my PA-C, Phyllis to check my thyroid since a test came back abnormal. She had her nurse call me to move me to a time where we would have more time to talk, and that we did! I love her, and we just sat and chat for about an hour. Life, health drama, whatever. She's so easy to talk to. Anyhow, she said the thyroid test wasn't really abnormal after all but had new labs done just to make sure, although unlikely. To that, I told her that I sort of wished I did have a thyroid problem causing my frustrating all-day, every-day extreme fatigue, because then maybe it would be treatable. But nope, she confirmed what I knew, it was more than likely just my liver making me so exhausted.
Then, while in her office waiting for the nurse to come draw the labs, I got a call from my transplant coordinator's manager. She told me my insurance had decided to deny coverage of a liver transplant since my MELD score was 9, and coverage starts around 10-11-12. At first I was frustrated because of all the tests I've gone through, obviously now in vain, but then I realized I should be thankful. And I am. I'm not bad enough to get a living-donor or deceased-donor yet. So, so thankful.
Here & Now
So that's been my life lately. Sprinkle a few "fun" things in, like Bryce's first T-ball game, his kindergarten graduation, and some new nanny job interviews, and that's been it.
And a little "news" for you... Due to irreconcilable differences, I sadly dropped my last nanny family (with Itty Bitty & Baby Itty Bitty) and interviewed last Saturday with a precious little 3-year-old, Little M. I got the job (which I soooo desperately wanted), and I start Monday. I'm so excited. Sometimes you just feel it when you find a perfect family to "join," and I know this is my match. I'm so ready to start - I have Pinkalicious and Fancy Nancy and a wagon for the zoo!!
Saturday (yesterday), Jonathan and I went to a wedding, and before that, I interviewed with the parents of a 7mo old little boy, Baby Blue. They need an as-needed sitter for a few outings a month, and I got that job as well. I start on Monday after I leave Little M's.
It's no wonder I'm exhausted, but I've found if you don't keep busy with non-hospital stuff, it's so easy to get into the patient-patient-patient mindset. I'm not sure if it's the healthiest thing to do, but it's working for me for the time being. Go, go, go, go, go. No time to sit at home and cry, you know? Plus my "kids" give me life, they truly do. They inspire me to keep going, to keep fighting, to see the world for what it is in the eyes of a child.
So what's up next? I'll be in the hospital on Tuesday (more on that later), so I have Tuesday and Wednesday off. Then I'll be with Little M for the rest of the week. I have 2 appointments this week, but they're "easy" ones. (Even though one is in Cleveland) It'll be nice to catch a breath, even if I'll be doing so while completely zoned out on anesthesia.
Everything is so complicated. Simplicity is all I want right now. A break. A vacation. (And to think I just got home from one!!)
The Moral of the Story ... The Fact of the Matter
But you know who is not one of complexities, big words, and confusion? Our God. He's big and awesome and strong, and we are blessed that He holds our fragile hearts in His all-knowing, all-loving hands.
At the start
he was there, he was there
In the end,
he’ll be there, he’ll be there
And After all our hands have wrought
He forgives
Oh the Glory of it all is:
he came here
For the rescue of us all
that we may live
for the glory of it all
for the glory of it all
All is lost
find him there, find him there
After night
Dawn is there, Dawn is there
After all falls apart
he repairs he repairs
Oh the Glory of it all is:
he came here
for the rescue of us all
that we may live
for the glory of it all
oOh he is here
for redemption from the fall
that we may live
for the glory of it all
oh the glory of it all
the glory of it all
oh the glory of it all
After night
comes the light
dawn is here
dawn is here
it’s a new day
it’s a new day
everything will change
things will never be the same
we will never be the same
we will never be the same
we will never be the same
we will never be the same
Oh, The glory of it all is
you came here
for the rescue of us all
that we may live
for the glory of it all
Oh you are here
with redemption for us all
that we may live
for the glory of it all
for the glory of it all
oh the glory of it all
Be still and know that He is God.
Last week, we started the week by celebrating Bryce's seventh(!!!) birthday at Applebees. He and his brother both are practically my size! I told him I remember the day he was born. Talk about feeling old. He was so excited to get lots of outfits and lots of Nintendo DS games. :)
