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.
At 3 AM on May 20, we received a phone call from the Milwaukee transplant center that they had a liver. Being skeptical after so many "stand by" false alarms, I asked if this was another of those. No, Margie said, this one is viable for YOU. So mom and I called the air ambulance company and we took off on a $12,000 plane ride to MKE. A transplant escort vehicle took us to the hospital running lights and sirens the whole way. You get some odd looks riding in a vehicle that says ORGAN TRANSPLANT TEAM on the side! About an hour after getting to the hospital, I was on my way to pre-op.
I woke up after 7 PM that night frustrated that my hands were restrained and that I was on a ventilator. I had to endure that for about 3 1/2 hours. Then they came to take it out and I coughed it out good! Think I messed up my wrists from fighting the restraints though. I was totally looped on pain meds, so I don't remember much other than mom squeezing my finger when I was wiggling it. She was a bit freaked out by all the monitors and 16 to 20 bottles and bags on the IV stand. That picture is quite wiggly.
Thursday morning I woke up feeling pretty good. I called dad and said "Good morning, da-dee! I think he cried a little. He would come to Milwaukee over the coming weekend with our car. I got upset when I didn't think the nurses were emptying my JP drain when I asked them to. It turns out they were emptying it, but I had so much fluid and blood leakage that it took less than half an hour to fill. In spite of pumping 16 units (that mom remembers) of blood into me Wednesday and Thursday, Friday morning was back to surgery. Mom was there about the time I got back to my room, and she was hurting. She had fallen on her back in the hotel during the night and now has a compression fracture, which she is rehabbing.
The doctors re-opened my incision and fixed the two bleeders and removed the very large hematoma that had formed on the new liver. Back to ICU with the restraints and ventilator. Only about an hour that time. So now I know why my rib cage is totally FUBAR. Being cracked open for 8 hours total will do that. Yeah, Dr. P--it hurts because I have bad posture. NOT! And he's the physical rehab doc.
The bleeding slowed, I got up and was walking (and dancing) around the nurses station for the next few days. Then I left ICU and went to the post-transplant floor (icky 8 Center) for three days, then off to rehab wing for 6 days. Then home for four days. Then back to the hospital for 3 days. I think the only reason they let (kicked) me out of the hospital then was that I was being my stubborn, demanding self, and they weren't meeting my expectations. I can be that way, right Jessica L.
The house the hospital had put us in for the short-term rental was in NO way handicap accessible. Nor was it adequately furnished, or clean, or even remotely comfortable. The Aurora foundation and Ogden Property Management have a LONG way to go in learning how to manage rental property. I did it for 10 years in Sioux Falls, so I do know what it takes. Plus the parking sucked and we got $65 worth of parking tickets courtesy of the City of Milwaukee. And I'm still waiting for a copy of the rent invoice, Cristina!
Now I'm back in South Dakota, recovering, getting better labs, and looking forward to moving in with my furniture which has been comfortably been ensconced in my apartment for the last 2 1/2 years. And it didn't even contribute to my rent--it expected ME to pay for its rent.
So, what can you expect from a liver transplant other than weakness and pain? Here are a few pics. Don't look if you are offended by scars!
Yes, after transplant, you can paint your fingernails again since you aren't always waiting for a pulse-ox monitor to be slapped on you--and they don't like polish very well, especially not the OR ones.
The healing incision on my now almost flat tummy. Cut side to side along the bottom rib, and 3 inches up the center (known as a Mercedes incision). And I didn't even get the stinking car to go along with the incision! What a birthday gift! Yes, I got a new liver to save my life for my birthday. The big 50. And that's a shadow from my hand and cell phone, not a bruise.
The Sunday after we got home, we sponsored the radio broadcast of the church service, and had flowers in memory of the donor. I don't know who the donor was, but I have a very strong suspicion. I also wrote a prayer for the pastor to read during the peoples' prayers. I am not a totally devout Lutheran, but I do believe. Especially after everything I've been through in the last five years. Here is it, and it is raw:
Many are the times I lost faith; I
thought you had given up on me. Did you
not see my suffering and pain?
I was afraid to live and afraid to
die. Then one night you called. It is
time. In your grace you filled me with calm.
I did not panic or fear. I just
You granted the medical staff the
skill and ability to do all that was necessary.
There were challenges and bumps in the road, but now I can look ahead to
returning to life.
Please continue to hold my hand as I
Bless my parents and family for all
they have done for me. Thank you for all
your prayers, thoughts and support.
Please comfort the loved ones of the
donor, who gave the ultimate gift, hold them in your heart and hands.
Four days after the transplant, I
celebrated my 50th birthday with the gift of life. Thank you for bringing me back to your
light. I am your child, and you are my
I am doing my physical therapy, getting massages to ease the pain since I don't like to rely on pills, and starting to enjoy doing some of the crafts and things that I used to love doing. There is life after transplant, it just takes a while to get it going again. I'm tired of hearing "It takes time" and "Be patient." But I'm trying. Not very successfully, but I am trying. The only thing happening quickly is the weight loss. The fluid weight I've been carrying for a decade or more is falling off anywhere from 1/2 a pound to 3 1/2 pounds a day. Makes me a little weak. But I refuse to use the cane, and my walker is not a clothes rack for old medical embellishments. Kind of like my drawers. Anyone need Coban or ted hose?
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.