This is a mash-up of R.Kelly’s “I Believe I Can Fly” and Nicki Minaj’s “Fly” (sung by the cast of Glee)
This song inspires me and when I listen to it and I feel like one day that will be me, and I am going to “fly” “…Then I can do it if I just believe it, then there’s nothing to it….”
“Cry my eyes out for days upon days, such a heavy burden placed upon me, but when you go hard your nay’s become yay’s…..I came to win, to fight, to conquer, to thrive, I came to win, to survive, to prosper, to rise. I believe I can fly, I believe I can touch the sky….”
This past March (2012) I was experiencing what the doctors call, “acute liver failure,” which essential means that my liver was losing its ability to function; at a very rapid rate I might add. Your liver has a variety of vital functions including processing just about everything that enters your body. It then regulates it, metabolizes it, stores vitamins/minerals, assists with digestion, removes waste, rids the blood of toxins, and I’m sure many more things that I don’t know a thing about. I am no doc, but every function listed above sounds like it plays a pretty legitimate role in how our bodies function. At this time, basically all I knew is that my liver was ready to say, “see you later jack ass!”–I just didn’t know when or how soon that was going to be.
In late February/early March, the first symptom that I identified was jaundice. I usually have a decent tan going on, but when I started getting more “tan” without going into the sun, and the whites of my eyes were the color of a lemon peel, I knew something wasn’t quite right.
I had other symptoms, but I disregarded them, mostly because I have come to find I am quite stubborn, in a way much like both of my grandfathers; getting me to go to the doctor for ANYTHING was a task in itself.
So, I Google searched “yellow eyes” and what I my results yielded was that I was “jaundiced.” I was thinking, well what the hell is jaundice? I looked that up it is pointing toward something being wrong with my liver.
In a normal functioning body, your liver breaks down billirubin (left-over old red blood cells, yellow in color) and removes it through your waste, (which I like to refer to as “poopski”), but since my liver was failing, it was unable to break down and remove the billirubin. The billirubin was building up in my bloodstream, along with toxins that my body was no longer removing on it’s own, and that is how I became jaundiced. No bueno.
Along with being jaundiced, I began starting to experience edema, which is swelling caused by fluid trapped in your body. My feet and legs became so filled with fluid that you could press down on my foot and it would leave a big indention with your finger, and a few seconds later it would resume its position of being a big, fat, jelly foot. Simply put, it was gross. Not only were my edema-induced legs and feet absolutely disgusting to look at, but they were quite painful to walk on. I had to constantly lay down and prop my feet above my head in attempts that maybe gravity would displace some of the water and reduce some of the swelling. That worked for about all of two-seconds before my feet would swell-up and be in awful pain once again. My docs put me on a low-sodium diet to reduce retaining any additional water, which would just make the swelling even worse.
Four years prior to this time, I had been diagnosed with Celiac Disease. Celiac Disease? I was like, “what the hell is that?” My GI doc in Greenville failed to fully educate me on what the hell that was, plus not only is eating gluten-free a pain-in-the-ass when you are always on-the-go, but it is expensive, and it usually tastes like cardboard (GF has come a long way since them in terms of awareness, taste, and options). After about two months of being gluten-free, I said the hell with it, I don’t have any symptoms, that doc must be nuts, I’m not spending extra money on all of the crap that tastes horrible, AND it doesn’t make my stomach feel sick, so the hell with it!
The hell with it alright. Four years later the Celiac monster re-surfaced during testing and so the docs added gluten-free restriction to my low-sodium diet. At this point, I can’t get these fluid-filled stumps that I’m supposed to call feet into my shoes, they hurt, and I am on a low-sodium, gluten-free diet, somehow only managing to looking more and more like a balloon with arms growing exponentially by the day. The edema was painfully obnoxious at the time, but the worst had yet to come.
If my body wasn’t completely swollen and disturbing to look at enough, it began building up large amounts of fluid in my abdomen called ascites. It was starting to fill-up quicker than my skin could stretch, developing almost instantaneous stretch marks. My stomach got huge and when I say huge I really mean gigantic! Dear Mo’s body, can you get any more swollen, I mean seriously? If I bumped into a sharp corner, there was a good chance there would be a “Clean-Up, Room 302!” I’m just kidding, I wouldn’t actually pop like a balloon, but you get the point. If you can imagine, I was beginning to get very frustrated because it seemed like no matter what I did to try to keep the swelling down; it just just kept getting worse.
I have looked back at pictures and I looked like a bowling ball with two fat stumps sticking out! Not to be a negative Nancy, but throw on a high dosage of prednisone to my unbearably fat feet, legs, and stomach, and now I have no option but to add a “chipmunk” face covered in pimples and cysts to that laundry list of already highly frustrating side-effects that prednisone offered. Sooner than I expected, I would have something really worth complaining about.
Fast-forward about a month down the road to Yale in the ICU, and I’m on the verge of dying. A swarm of my medical team were literally pumping me with bags upon bags full of sodium chloride to try to keep me alive, flushing out the toxins building up in my body. My failing liver is unable to properly dispose of these toxins, so where were they going if my body wasn’t eliminating them? Up to my brain, which led to on-and-off bursts of dementia.
Things were not looking good, and I just kept getting heavier and heavier with fluid. I believe the heaviest that they have me recorded weighing-in was a weight of over 220 lbs, which is about 50 lbs over my prior weight. Now, I have never been super-model thin to start off with, but that is an abundant amount of extra weight to be carrying around all-of-a-sudden, no matter who you are!
While I was in the hospital, they checked my weight frequently because it would change so dramatically from day-to-day. My weight each day depended on how much I urinated the night before. At around 4 a.m. every night, the evening PCA would come in and take my weight. After transplant, no joke, I would lose seven-nine pounds in one night…ONE NIGHT! (I’m assuming that is because my new liver was working properly, that my body was then able to dispose of the excess liquid properly? I am no doctor, so that is just my assumption based on what I have read.) Either way, I was losing the weight, and I was losing it fast; too fast! On June 1, I weighed in at 161.4 lbs, about 60 lbs lighter in less than a month.
While it definitely was nice to not be carrying around so much extra weight, it was happening way too fast. I acquired stretch marks all up-and-down my upper thighs to my calves, my stomach, my feet, and even under my boobs. Thank you to some Mederma and other creams, those stretch marks have subsided greatly. I continue to lather myself in cocoa butter creams daily in hopes to rid the marks even more, but my stomach area definitely is taking the longest to reduce the marks.
When I was released from the hospital on June 14, 2012 I weighed approximately 155 lbs. I have been off prednisone now for about a month and today (12/5) I weighed-in at 128.8-lbs. Of course each scale varies a lb or two or three here and there, but I have lost roughly 90-lbs since my heaviest weight at Yale, about 50-lbs from my pre-transplant weight, and about 25-lbs since June (6-months). I never really broke it down like that, but that is a lot of weight when you really think about it! I am very proud of my progress and that gives me the MO-tivation I need to further keep pushing myself to get stronger until I am fully recovered. I am actually aiming to put-on some weight, in the form of muscle, but I have been having a tough time doing so because my legs have not been fully cooperative in my efforts to do so. In one of my next blogs I will attempt to address the struggle I have had with my MO-bility on my road to recovery.