Under Pressure.

Daybreak was just beginning to tiptoe across the glistening  dew topped ground as I knelt down away from the others, simply observing what was about to happen. Holding my breath I watched with anticipation as the tiny calf battled with all its might to burst into this world, angelic head finally poking out from inside the beautiful chocolate and creamy ivory patchwork quilt, speckled mother. I sat silent, my small space in the barn my own safe haven, weeping quietly as I witnessed the ethereal gift of life as the small calf staggered and struggled with all it’s might to take it’s first steps. My first real understanding of the heart-stopping, awestruck, glorious and down right gritty miracle of life.

They were routine tests. Lymphodema is the word they used regarding the recent swelling in my legs, and it was yet another life long ailment in my recent litany of health issues to deal with but once under control it would be okay. Not that wearing compression leggings was something I thought was necessarily going to boost my already ho-hum sense of fashion lately. Nevertheless, the appointments were set for the echocardiogram and the CT scan with contrast to make sure there was nothing more going on with the swelling.  The later test needs to be renamed, might I suggest, CT scan with a two cup chaser of sock water. If any of you have ever had this test, you know what I am talking about. You are gifted two large Styrofoam cups of innocent enough looking clear liquid upon your arrival, but Cherry limeade it is not my friends. After that anything they did in the actual test was a cakewalk, and it was no big deal, IV port in the arm, iodine administered and then you lie back and enjoy a little snooze, well at least I did.

The second test was actually, awesome and getting to watch and hear your heart in action was a little surreal and when I think about that sucker doing it’s job now for 45 years without fail, I wanted to give it a little high five. While I was lying there on the table listening to the swooshing sounds, I wondered what I might name my heart if my heart needed a name. I don’t know, people name other parts of their bodies and this one seemed like an important one to keep happy with a cool name, Lucille? Like BB King’s tried and trusted guitar, or something like McGuyver cause that guy could get out of any trouble that came his way, yeah, that sounds like a …”All done. You did great, I will leave you to get dressed just meet me in the hallway when your are ready.” So that was the end of that.

The next day I received the results from my Dr. about the heart test. Everything was good, there was a very slight thickening of my aortic valve, it happens as we get older and not a big deal. My heart was strong and pumping like a champ. “Well done, McGuyver.” I mumbled.  Still no word from that damn CT scan. It was been 4 days, I told myself that those results were in a pile of “Perfectly okay results, no rush because nothing is wrong, pile.”

I tossed and turned in my  sleep only to realize Tully’s paw was poking right into my bladder, I adjusted my position slightly and tried to ignore the fact I had to get up and got to the bathroom. It takes such effort to get to the bathroom. Simply getting my legs over the side of the bed is  painful, then shoes on for support, then getting myself up and to the crutches and back again. Which to be honest after all that I am totally up and wake and wondering it 1:30 am is too early to press start on the coffee pot. I was just getting myself back into bed when I heard it. “Ping.”
That familiar sound letting you know a new e-mail has landed in your in-box. I was up, why not check? I can now tell you three hundred and forty seven reasons why I should not have checked, but I did anyway. Oh I checked all right. The message was from the hospital that administered the CT scan. This is not the hospital network that my primary care doc is affiliated with, but it’s closer to my house, I know my way around the place, and they could get me in for that test almost immediately. I logged into the system and into my chart, opening the results that did not come with the kind, reassuring notes that my doc would have written. No this were big words that had my McGuyver heart beating like a drum at an overpriced rock concert and immediately feeling like I was going to throw up.

I did the worst thing you could do, say it with me… Web M.D.  I went on-line and feverishly typed out the obscenely long named condition of the first scary word, then the next and then the next…what came up sucked all the air from my chest, as my eyes erratically scanned “late stage” and “liver failure”, I don’t even remember the moment I began crying. Loud crying, violent sobbing and then Tully belly crawled up next to me and began to lick my arm and hand. I grabbed him and wept into his soft fur, then I grabbed my phone and dialed Lauren’s number praying she would pick up on the other end of the line in Atlanta.

“phhummmheelllo? is the beautiful sound I heard on other other line. She picked up.

Then my arsenal of a complete meltdown began, and it was so not pretty, it was that ugly crying where the person has no earthly idea what the hell you are even attempting to say on the other line but they can actually hear the tears mixing with the uncontrolled snot running down your face. I don’t know if I will ever be able to repay the fact that she did not hang up and roll right over thinking some lunatic accidentally called her at 2am. In typical Lauren fashion, we talked through it,  she eventually calmed me down, changed my view, we rationalized the scary diagnosis, we went through the litany of every one of the results my last liver panel test showed which had just been done a week ago indicating my liver was functioning very well. She said she would stay on the phone with me all night if that would make it better. That didn’t happen, but I know she meant it, and that is my beautiful twin in action.

Morning came and I woke in a haze of drunken, lingering fear, I thought maybe it was just a dream, a crazy bad Grey’s Anatomy influenced nightmare. Then I saw that e-mail again and my heart sunk. The fury of phone calls, to try and figure out what was going on, e-mailed my doctor, called on a  dear friends who is an awesome MD and she talked through everything with me best she could with no real information, the good, the bad and then lovingly reminded me I was not alone. It could be worse. My friend Amy who is the nurse you ALWAYS want, was right there to answer all my crazy questions. Boy do I excel at crazy “what if” questions.

I find out later in the day that my Dr. has not even gotten the test results yet! So this hospital has a system where they send out summary results directly to patients on a automatic system in the middle of the night. Are they TRYING to kill people? Sweet Jesus I was mad. Keep in mind I am at work trying to do my best to balance everything because we are in the middle of opera season, a chaotically busy time. Poor Scott is doing more than his share and has been since the achillies surgery, while I am trying to squeeze in figuring out if I am kicking the bucket or not. I call the hospital to see if they can get my doctor the full results. “No ma’am that office closed at 4:00pm.” I looked at my watch, 4:16. Fuck.

Another night, I had to wait another night. Then I would go in person to see my doctor. I would find the truth out, I would know, it would be okay, or it wouldn’t, but there was nothing else I could do.

I picked up Lauren’s mom, Nancy in the morning, whose kind soul didn’t even hesitate one bit when I asked if she would be willing to go with me to find out the test results. I did not want to subject my mom to any of this just yet, as a matter of fact at this point she didn’t really know too much other than I had to have some test run.

The great thing about going to see Dr. Drake is that everyone is very friendly, it’s what I think a small town doctor’s office might have been back in the day. The very minute she walked in the room I felt better, it’s weird when you have someone you truly trust looking after you, and most importantly someone who knows you as a patient over several years. Dr. Drake told me, she didn’t want to talk over the phone last night, it probably would not reassure me enough,  but rather wanted me to come in to the office. It mattered that we were in person to have her explain everything, see that she was not panicked or freaking out and give me the opportunity to process and the ask questions that would put me at ease as much as possible.

Here is the low down without getting into all the medical lingo. My actual liver is functioning fine, all my blood tests confirmed this as recently as two weeks ago. There is a problem with the veins that supply blood to my liver from my other organs, there is too much pressure and that pressure is forcing my legs to swell, and overall a dangerous thing to have going on. Now the good news is that I have no blood clots nor did they find any masses or tumors which is such good news. The blood is still flowing but the pressure is a problem. I was immediately given blood pressure medicine, and while I do not have traditional high blood pressure, this medicine will hopefully work the same way but it will lower the pressure in that bundle of veins known as the Venous system. We have to find out why this is happening and fix it. I have an appointment with a liver specialist going forward, I will see him in a couple of weeks and then we will know much more and make a plan. Probably looking at a liver biopsy and further testing, but there are things that can be done to fix this. On top of everything else this certainly seems and IS pretty overwhelming, there is no doubt about that, but I am choosing not to focus on the bad, I am choosing to view this as the thing that will change everything. I will learn more about my body, I will make changes, discover even a new way of healthy eating, drinking is a thing of the past for me, and I am okay with that, not willing to take any chances. My liver will be treated like a queen from here on out. Maybe it’s sheer desperation on my part, an inability to lump this on top of all the other crappy medical challenges that have happened, or maybe it’s remembering that calf, the struggle, the overwhelming beauty, and how much it’s worth the glorious and down right gritty miracle of living life.

Head up, heart on my sleeve, this new adventure begins. I will continue writing, and have no idea what to expect but no doubt, we will figure it out, and I would love nothing more than to connect this to raising more money for those Recycled Doggies!

So much love to all those who have carried me through the last several weeks, and more love to those who will walk this road with me.

More soon-

x

Lori

 

 

“‘Cause love’s such an old-fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves” -d.bowie

 

 

 

1 Comment

  1. Cindy says:

    Wow, I can’t believe they send results like that to patients first before the doctor even sees it! Going to send you an email,Lori. You see my email address, so you’ll know it’s from me. Take care!

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