_In the Beginning, There Was the Diagnosis-Finally
_I hadn't felt well for years. An episode of substantial rectal bleeding in 2003 was, in hindsight, the first real symptom I noticed. I went to my primary care physician who confirmed the presence of blood in my colon by an in-office exam with some sort of scope. He referred me, through my HMO at the time, to a consult with a gastroenterologist for a colonoscopy and EGD. The first available appointment was almost 3 months away. By the time I got in to see the doctor, my bleeding had subsided. The doc decided to do the exams anyway, and upon finding only a couple of ulcers in my colon and a rather large one in my duodenum, I was dismissed with a prescription for Nexium.
Being a trooper, I continued about my life for a few more years. Sometimes I'd faint, and I'd taken a couple of serious tumbles resulting in two broken legs in a matter of seven months, each requiring hospitalization and surgery. I began to feel really sick more often than not. Loose stools were common. My energy levels plummeted. I was scheduled for a slew of gastro-related tests over the next few years. Two more colonoscopies, gastric emptying, lower abdominal scans and of course the regularly scheduled Type II diabetes check-ups I'd had for the last 15 years. These tests included liver function tests because of the meds I took. Nothing out of the ordinary was discovered.
Here's an excerpt from the letter my doctor sent me in mid-2009:
Hello B, Thank you for allowing me to serve your medical needs. I have reviewed your lab work and here are the results:
Your electrolytes (sodium, potassium, etc.) were within normal limits. Your kidney function was normal. Your blood sugar was normal. Your blood count was normal. Your liver function tests were normal. Your TSH (thyroid hormone) was normal with normal 0.47 - 5.5. Your thyroid test indicated that your level of thyroid hormone was abnormal. Some medication adjustments may need to be made. Your total cholesterol was normal. Your cholesterol was 133 mg/dl (normal is <200) Your LDL was 67 with the desired value at <130. Your triglyceride normal was 136 with normal being <150. Your HDL was 39. Normal is >45... and I look forward to seeing you in 6 months.
Still no inkling of liver disease was detected, but I was just sick! I had another colonoscopy in June of 2009, and other than the ulcers, nothing. I began to notice some swelling in my feet and ankles, but it would go away if I elevated my legs for a while. Itching was becoming a burr under my saddle though. One night I itched so badly I thought I was going to go crazy. Nothing I tried helped.
My feet and ankles began to swell more regularly and the skin looked as if it may burst at any time. Elevation was no longer working. My nausea got worse, and I couldn't even look at food on TV without throwing up. One evening in late October my grotesquely swollen legs turned beet red and were hot to the touch. Socks would not fit my feet and I had to cut the elastic out of the legs of my sweats.
I was getting pretty anxious and asked my husband to look at them. He took a look and said, "call the UrgiCenter--we're going in." They suspected I had cellulitis, because you know that fat kids get that a lot. They sent me home with Lasix and antibiotics, telling me to see my PC within the week. He ran some blood tests and said he'd see me again in another week. I was better but not normal.
All thunder was about to break loose shortly though. The swelling was into my knees by then, and the doc upped my Lasix dosage, saying we needed to get a handle on the edema before exploring other avenues. "Just take some Benadryl for the itching and rub on this cream. Stop by the lab on your way out." It was late, and the lab lady wasn't too happy about staying after hours to make the draw so late in the day. I was dejected and simply miserable. I went home and went to bed with a puke pan on the nightstand. I actually slept better than I had in weeks.
The next morning, on Friday, November 13, 2009, I was awakened early by a telephone call from the doctor. He urged me to report to the emergency room immediately. "You mean the UrgiCenter, right?" No, he reiterated, the EMERGENCY ROOM. As it turned out, last night's labs were not good! I'd later find out what the tests showed from that series.
__Basic Metabolic Panel: 11/12/2009 07:26 PM
Description
_Sodium (Na) Potasium (K) Glucose GFR Creatinine CO2 Chlorine Calcium BUN
_I got out of bed and looked for my husband. He was always around, splitting wood, burning brush, something close. Not today! There was a note on the cabinet telling me he'd taken the car into town and was an hour away—having the oil changed on the Jeep. I figured I'd just wait for him, but he didn't answer the cell phone and I began to wonder whether waiting was a good idea. I called my mom-in-law, who lives on the next acreage up from us and asked her to come down. I explained the situation, and she told me to get dressed, she'd take me now.
After an hour's drive to the ER, she dropped me off at the entrance and went to park the car. I sat down in a chair at the check-in window, telling them my name and that my doc had referred me. The clerk checked the computer and before my mom-in-law could get back inside, I was put in a wheelchair and whisked back to an examining room. My blood pressure was 60/50 and doctors, nurses and lab techs buzzed in and out like bees! I was hooked up to monitors when D (my husband) found me, his mom had reached him and he met her at the hospital. The gurney was unlocked and away we went. "Where?" I asked. "ICU", said the doc. "Why?" No reply. The charge nurse and her assistant stripped me and started IVs, a Foley Catheter, O2 and numerous monitors, I asked again why I was in ICU, wasn't that for people who were really bad? She said, "You are! Most people in the shape you're in now aren't asking questions!!”
A renal specialist was called in and I again asked what was going on. She told me I was in renal failure. I was dehydrated causing my blood volume to drop drastically and my blood pressure had tanked. I spent 5 days in ICU and was scanned, x-rayed, poked and prodded with no indication of what had caused my episode. My veins were collapsing and a PICC line was put in place to obtain the barrels of blood they continued to draw.
My new kidney doctor ordered another scan, told me afterward that my gallbladder was in bad shape, and needed to be removed. He introduced me to a surgeon and his entourage. I signed release papers for surgery. I was moved to a med-surgical floor, and told that I'd have surgery the next morning, so nothing to eat or drink but ice chips until midnight, then nothing.
On day 6, my family arrived and we waited, and waited, and waited. Nobody seemed to know what was going on. Not even the intern assigned to me on the med-surgical floor. They called the surgeon, and he said no surgery that day. Tomorrow, so don't eat or drink anything except ice chips, until midnight, then nothing until after surgery.
On day number 7, my family came, we waited, no surgery. But don't eat or drink anything but ice chips until midnight, then nothing until after surgery tomorrow.
Day eight we waited all day, nothing to eat or drink still, and finally I told the family to go home. I called in a hospital administrator and informed him of my situation, and told him I was leaving, with or without the IV, so get someone in here to take it out. He, the intern and my RN talked to me until I settled down and agreed to wait a little bit longer. D and my sister stayed, and at 4:45, the nurse came in and said transport was on the way. Get showered again and be ready ASAP (Showers aren't fun with a PICC line inserted as they can't get wet.) A plastic bag had to be super-taped to my fragile skin again, and before I'd finished the shower transport was there and quite upset that I wasn't ready to go. They waited though as my nurse and my sister tried to get the tape and plastic off of my arm without pulling the skin completely off, and finally I was on my way. To have my gall bladder removed!
In the operating room, I remember the anesthesiologist asking the doctor if he'd seen my latest INR (I had no idea what an INR was) and asking if he still planned on operating. "Yes, it has to be done" was the surgeon’s reply. My anesthesiologist said, "Relax, count backward from 10." I remember 10, 9... As my gallbladder was necrotic and gangrenous, it had to be handled with care to keep the poisons from infiltrating my peritoneal cavity any further than they already had. The next memory I had was hearing the surgeon ask his assistant to get a camera. I tried to speak, but the tube in my throat wouldn't allow it. The anesthesiologist said, "Whoa girl, you need to be sleeping!" And sleep I did. I awoke, still in the OR, as tissue samples were bagged up and bloody linens were placed in a hamper. As I laughed and talked smack to the nurses and techs around me, I heard the surgeon and his nurse say something about "liver". "I've seen it too many times", she said. I wondered what it was that she'd seen!?!
The surgeon called my husband and told him the bad news. D didn't want me to worry that night, so he didn't tell me anything. I didn't want him to worry, so I didn't tell him what I'd heard. We each just wanted the other to sleep well, and then we'd talk to the surgeon in the morning, together.
Even though I had my suspicions from the previous day's events, I was still just floored when the surgeon told me that I had cirrhosis. Liver problems, maybe, but cirrhosis? He said it was stage 4, irreversible and likely not treatable. I was in End-Stage, I'd be lucky to live a year and was probably not a candidate for transplant. Get my affairs in order. Go home, there's nothing else I can do for you. Mind you, although they'd drained 8 liters during surgery, I was still leaking ascites fluid from my incisions at a rate that soaked a towel in seconds, and dripped to a standing puddle under my bedside chair.
My poor nurse came to me and asked how in the world I would handle this at home. We put our heads together, and I asked if she had any colostomy bags. We custom cut the hole and used the special adhesive made for that purpose, then glued one to my tummy around the two lowest of five 2” incisions on my abdomen. She showed me how to empty the bags, and gave me some extras and some more adhesive to take home.
We stopped at Wal-Mart to get pads for the new mattress on our bed in case of an overflow. For the first day, I changed bags every 30 minutes to an hour. The leaking subsided gradually and was non-existent after about three days. I had my staples removed 10 days later and the surgeon released me from his care with a hearty "Good Luck".