I have a "funky liver." I was diagnosed in 2010 with a condition called NASH liver and cirrhosis. I couldn't understand why I had cirrhosis when I've never been a drinker. So after putting off the transplant evaluation for a year, I hit a rough spot and wound up in the hospital several times due to Hepatic encephalopathy. Basically, my liver stopped removing the toxins from my blood, and they built up in my brain. Kind of makes me a little nutty I guess (more than usual I'm told). So now I'm just hanging out, waiting to move up on the transplant list, and sharing some experiences, stories, and resources with you.
I finally got my insurance changed to a plan that allows listing at more than one center, So off to Omaha we go for a week if testing, They are supposedly accepting the majority if the testing I've already gad done, We'll see if it brings any action any faster than Milwaukee did.
Yes, I'm still waiting for my new liver. No activity from Milwaukee, and the doctor is kind of giving up on them. So on to Omaha where they think I will have a better chance getting transplanted at a lower MELD. I had to change insurance companies to be listed in two places. Now just waiting for the schedule to go down to Omaha for testing. They are accepting most of my test results, but I have to do blood work, have an ultrasound of my abdomen, and meet with their doctors. Hopefully it will improve my chances.
Now my MELD is 24 and I continue to keep up with the paracentesis every two to three weeks. I have stopped keeping track of the total amount of fluid removed since it was too depressing. I have very little appetite most days and have trouble drinking all my fluids. I've had a random virus for the last week, causing all sorts of issues. Not fun. Plus I'm having a lot of trouble with sleeping well. At least I haven't been in the hospital since September when I had a reaction to my flu shot.
Are you there, Funky? Yes, I'm still here. I've horribly ignored the blog yet again, but with good reason. I'm tired of all this crap. Yes, crap. My MELD goes up, it goes down, I get false alarm calls about possible transplant, I get sick, I get better, I sleep constantly, I can't sleep. The only thing constant is that I am cold.
We are now at 566 pounds of fluid removed. Poor Fat Albie can't even walk, he just rolls everywhere now. (Fat Albie is the person created by the removed fluid). The PA that does my paracentesis and his wife had a baby while I've been waiting. She'll probably be in college by the time I get my transplant at this pace.
The good news is that Sioux Falls is almost fully staffed for their liver transplant center--as soon as the third surgeon comes this summer. I really hope that I can get my transplant in Sioux Falls rather than Milwaukee for both cost and convenience. The docs are good in both places, and I know them all, but it would be good for mom to be closer to home for the couple of months I'd have to stay in Sioux Falls for recovery after release from the hospital.
Currently I am on my second round of antibiotics for bronchitis. I had the worst cough I can remember in decades. Just about gone now. What else have I done? In April I did some fundraising for the new roof on the church. About $2,000 from the craft and vendor fair, plus got a couple of generous pledges. I made 72 bars of soap, and it was almost gone. Just four bars left now between what was sold by mail, at the fair and what we kept to use. Love me some Rosemary Mint soap! The big sellers where the two batches of Lovespell and the Coconut Orchid. I'll make more for the church ladies craft fair this fall.
Citrus Cilantro swirl soap. Dad thought the green embed looked like a giant
dill pickle in the middle of the soap, but it opened up with the heat of the soap.
Ok, so last Monday we set a record with 11.3
liters of fluid removed during the paracentesis. I thought we'd get 6
or 7 today. Nope! Record territory again--11.4 liters! Fat Albie now
weight a whopping 453 pounds. That's 55 pounds of fluid weight up and down in two weeks--this can't continue.
Fortunately, my creatnine was back to 1.3, so I get some but not all of
the diuretics back. That will help. Tomorrow during the weekly call
with the transplant center in Milwaukee, they are going to talk about
whether or not I'm a viable candidates for the TIPS placement. With a
history of hepatic encephalopathy, it's risky. But it can be controlled
and reversed. Dr. E said it makes his mind race thinking about doing
that to me, but the more frequent and high volume removals of fluid
carry their own risks. Under no circumstances am I a candidate for a
port and tube for home fluid removal due to infection risk. With the
recent bout of sepsis, I whole-heartedly concur! If we do the TIPS, I
am insisting on general anesthesia, not local. Here is why:
I started feeling less than great on about New Year's Eve. The 4th and 5th of January I felt downright lousy. The 6th I felt fine. I woke up on the 7th with a fever. Regardless of taking a small dose of Tylenol, I just felt worse and the fever kept rising. Mid-afternoon the doctor said to rest and hydrate. By 7 PM, I was starting to become incoherent. The doctor's office then said to get to Sioux Falls to be admitted. My blood had an elevated white count, so we started IV antibiotics. I felt pretty good the next morning, but had another paracentesis to remove 9.3 pounds of fluid. Fat Albie weighs 398 pounds. What had happened? Sepsis.
What is sepsis? Here is about the easiest definition:
Sepsis is an illness in which the body has a
severe response to bacteria or other germs.
This response may be called systemic
inflammatory response syndrome (SIRS).
The symptoms of sepsis are not caused by the
germs themselves. Instead, chemicals the body releases cause the response. A bacterial infection anywhere in the body
may set off the response that leads to sepsis.
So after a week in the hospital being blasted with antibiotics, I get to do ten days of IV infusion antibiotics at the local hospital. It only takes about half an hour, but the PIC line hurts. The insertion point is sore, and the adhesive is burning and blistering my skin. The first night I had a major bleed from it, and had to have the dressing changed after one day. That hurts, too. I've found that if I use Coban to wrap the lumen to my arm so it doesn't move, it hurts less. Woke up when the recycled Coban from earlier in the day came unwrapped, so now it is wrapped in Angry Birds Coban. The PIC line is inserted on the under side of my right arm, runs up the arm and across the chest to the area near the heart. What is weird is that I can sometimes feel where it is.
The dressing pulls my skin so badly that it looks like I have wrinkly old lady or
elephant skin. We change it again the 21st, then hopefully remove it the 23rd.
I have a feeling I will be using lots of hand sanitizer to get the adhesive off, which will likely burn like a son of a gun. Maybe lotion will work, too. In better news, Avera McKennan is apparently close to submitting their application to UNOS for approval as a liver transplant center. That would be awesome, so we wouldn't have to travel back to Milwaukee. It would also be much less stressful to be closer to home. So cross your fingers and anything else that you can safely cross.
Yes, I'm still here. Just bored and tired of waiting. Made it through Christmas, and now have my MELD back at 18. Lots of things done over the past few months, from cooking and baking to craft projects. Maybe I should quit eating soup and my MELD would go up again. Maybe I'm being to healthy? But we are soup eaters, so eat soup we shall. The split pea soup I made on Sunday cost about $2 to make the pot and we'll get 9 servings out of it. Nothing but veggies and a tiny bit of leftover ham. No other sodium added. I hate hearing people say you can't eat healthy without spending a lot of money. Not true!
Making lefse with mom! Kind of a funky shape on this one.
Fuzzy picture of one of the wreaths we re-made for the front of the church.
Chocolate chip cookies for Bob and Derek!
Ice skate centerpiece I made for a fundraiser raffle at the church.
Antique sled I decorated for mom and dad's house for the holidays. Love the Suess swirls at the top.
And of course, tonight I woke up at 1:30 and can't get back to sleep. That's relatively rare these days, since I have been sleeping much better. Usually. Except when the fluid starts building in my abdomen. We are now up to 370 pounds of fluid removed. The blob of missing fluid weight has been named Fat Albie. One day he will explode. Or I will stop needing these removal procedures when I get my transplant. I'm thinking January 6 would be a good date for the transplant, since it works out with my nonsense numerology.
Time to go back to bed and try to get some sleep. Gotta rest up so I can party in the new year (salami, cheese, veggies with dip, and a Sprite Zero--I'm a rebel)!
you seen a missing persons report for a 215 pound person? If so, he or
she is bio-medical waste, having been removed from my body liter by
liter since 12/12/12. For the kicks of conversion, that is 26 7/8
gallons of fluid. I told Derek that since this was the 8th one he's
done, after two more I get my free one. He wasn't so sure Avera has a
punch card program. And the paracentesis hurt today, too. It usually
doesn't (although why having a hollow nail shoved into your side,
attached to tubing, a suction unit and countless collection containers
should hurt is beyond me). If
you want visual, go to the blog.
Then the appointment with Dr. E. That went much better today. Dropped a whole one point on my MELD, now at 22.
I'm trying to push my next paracentesis two weeks out since I have to
re-MELD then anyway. Admonishment from Derek about not making myself
miserable. Is it weird to call a doctor just by his first name? He's
just so casual, and that was how he introduced himself.
month will be a marathon appointment. Paracentesis, MRI, Dr. E, then
Dr. San (so many docs with 'S' names I'm out three letters on their
names now). I refused the MRI, but he doesn't want to do a CT because
the contrast dye used is hard on the kidneys. They don't want to cause
any further damage to mine. So I agreed to open upright MRI. No go,
since he doesn't feel the image quality will be sufficient. He offered
drowsy meds. I countered with totally unconscious. They are checking
with anesthesiology and will get back to me. I hate that tube. Of
course, the one time they tried to put me in it, I was encephalopathic
and convinced they were going to put a monkey liver in me while I was in
I had to show the doc my abdomen and ask what was going on. The
muscles down the core have been forced apart from the pressure of the
fluid, so sometimes the stuff that should be behind them pops through.
Thus the MRI. Double drat.
Ok, enough for today. I need to find something to eat
since I wasn't hungry at dinner time. I needed to rest after the 19+
pound fluid loss.
I saw this and couldn't resist posting it. At the transplant clinic, they actually call them "donor cycles". I know if may be more fun to ride without a helmet, but unless you are an organ donor, put the helmet on. It's a choice.
I know. I am once again guilty of neglecting the blog. I do have a valid reason this time. I spent five days at Avera in acute renal distress. It isn't enough that I have a bad liver, but it makes things tough on the kidneys, too. It all started with a UTI and they took me off the diuretics. Three paracentesis procedures in three weeks, then five days of miserable hospital time. And of course they screwed up the dietary again and gave me regular meals not low sodium. And they forgot the fluid restriction. Blah! Still on modified diuretic doses, have labs tomorrow, then Dr. E on 8/2 and new Dr. S on 8/6 for the kidneys. Double blah! And another paracentesis on 8/2 if I can make it to then without.
And we lost my Aunt Lucile, namesake of Lucibelle the car, on Sunday. She was 94 and is finally at rest, which is good for her. Whether Uncle Ed appreciates it now that she's on his case again, we will never know. RIP Lucy!