Still here

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)!

Step by Step through the Transplant Process

Ever wonder how the transplant process works?  Here's a great video from www.organdonor.gov that explains it all.

http://www.youtube.com/watch?v=HuKx2a5HkIM

Bone marrow donors can be listed at www.BeTheMatch.org for a test kit.  Your local clinic can draw the blood and send the kit back to the national registry.

Become a donor today--it's easy and free.  Donors have no cost to be tested or to donate.

Holy 215 pounds, Batman!

Have 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.

http://www.funkyliver.blogspot.com/2013/01/not-today.html

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.

Next 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 there.  Today 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.

Sad but true

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.

Stupid Kidneys

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!

The Trip Home

Coming home has never felt so good.  Yes, we still have unpacking to do.  My apartment is piled high with boxes I will need to unpack and put away over the coming weeks, but I LOVE MY APARTMENT!  Here is a little pictorial travel journal of our journey home from Milwaukee this week.

 Think we were loaded high enough?

Hitting the road!

Chica tells us where to go.

My mommy and daddy are mean!  They said I was too klutzy to

play on the playground or slide down the slide.  I resemble that remark!!

Lunch:  egg salad, Cool Ranch Doritos and water.

 

It looks like a Schwiesow picnic!  I can see cousin Kim, Aunt Bess, and Grandma.

They even had a white tablecloth on the picnic table, and all the trimmings, like the 

family used to travel on those epic siblings trips across the country.

Cool rock formations.  Not bad for a shot while driving!

More cool rocks.

You know you are getting close to home when you get trees, a deer

crossing, and a construction barricade all in the same shot!

Orange Carrot Mistic.  Best juice ever!

The important stuff got put in at the rest stop.

Yeah, that's my Shopko Hometown!

Milwaukee readers:  Gas is supposed to be LESS than $4 a gallon.

HOME!!!

Once I get settled into my apartment (in about a month!), I will post photos of that.  For now, it's Dr. E on Tuesday.  Feeling great!!!!!

Home on the Range

So, what's the weather like in Milwaukee? Don't know! Here in good old Madison, SD it has been overcast and breezy with a brief shower today. THIS IS NOT A MISPRINT!! We are home!

Why you ask, after the last hospitalization I had such a rapid turnaround and improved so that on Friday, I said if I was at 18 like last summer, I wanted to go home. The team talked it over and decided they were doing nothing for me there that couldn't be done in Sioux Falls, so westward ho! The head transplant surgeon from Milwaukee in now spending 80% of his time in Sioux Falls working on betting them certified as a liver transplant center. They currently do kidney and pancreas.

After finding out all of this Monday morning at 10 AM after my echo cardiogram and bubble test, we packed frantically, and left Milwaukee at 8:50 AM yesterday. We got home last night at 7:50 PM. Four stops for rest or meals. Great trip, tolerated it well, and first one up this morning. Feeling fabulous! See Dr. E in Sioux Falls in Tuesday, then I hope we can go to monthly. Tired of getting poked once or twice a week.

THANK YOU ALL for your prayers and support. Although I am still awaiting transplant (contingency plans made), you have helped me recover and helped mom, dad and I get through this trying 5 months and 2 days. We wish you all well.

WOW!

Ok, obviously I have been neglecting the blog again.  May was busy, with yet another fruitless hospitalization for complications of abdominal fluid removal.  And two of those lovely paracentesis fluid removal procedures, for a total of  9.3 liters of fluid (not quite 3 gallons).  Ugh!

I have felt wonderful since coming home on the 30th, however.  Lots of energy, totally clear head, no issues at all.  Hopefully writing that won't jinx it.  Realised that today is my 671st day on the transplant waiting list.  Yeah, a long time.  In one week, we will be in Milwaukee for 5 months WITH NO TRANSPLANT EVEN CLOSE!!  Our family says we're so good to wait patiently.  Who the heck is waiting patiently?  Not us!!  We are horribly impatient, and have expressed this to the transplant team.  I hope that a plan I proposed for them is green lighted.  Fingers crossed.

On the upside, a couple of nice days, more wonderful fashion finds at the least expensive places in Milwaukee.  And on a very positive note, out transplant housing neighbor Dwight, got his Type A liver on May 15.  The surgical team said everything fit in place so well it was like it was his own liver.  His recovery went remarkably well, and he returned home to Worthington, MN with his wife last Friday.  He even had the go-ahead to drive his pickup a few miles.  That's usually a 3 month wait!  He hasn't driven it yet, but did go sit in it again to let it know papa was home!  So happy for them.  We will miss them dearly.

Well, as usual I am writing in the middle of the night because my sleep patterns are still messed up due to the liver disease.  But, I still have a recipe to share.  I made a thank you for the clinic staff, and it was so good, easy, and basically sodium free!

REFRIGERATOR SALSA
4 small vine-ripened tomatoes, diced
2 bunches scallions or green onions, sliced thinly
1 small jalapeno pepper, seeded and de-ribbed, diced super fine
1/4 cup fresh cilantro, chopped
Pinch of sea salt

Squeeze of fresh lime juice

Combine everything in a jar or container and refrigerator. Let set at least overnight to let flavors blend. Adjust the amount of jalapeno based on your heat preference.

You may call me Grace

Last Thursday I had another paracentesis done.  Another gallon of fluid removed.  Friday morning I had labs and my appointment with the liver doc.  Then we went to buy groceries.  It was a nice day, and I heard a helicopter coming in to land on top of the hospital across the street.  I wanted a video of it.  I went out and took the video (which, by the way, was crap).  Coming back into the house I sort of missed the tall step on the front walk and did a full frontal flop onto the sidewalk.

Chin and lip shredded and bruised, hands scraped, left wrist sore and bruised, left knee sore but no damage.  Right knee scuffed up and bruised black.  Fractured non-displaced right bit toe.  Basically it looks like I have an eggplant stuck on my toe.  I feel stiff in places I didn't know existed.

The clinic wanted me to be seen in the ER.  Which turned out to be an epic journey.  One and a half hours before I got into a treatment room, with my hands and chin bleeding the whole time.  Then a "whiplash" collar to make sure that wasn't damaged.  Head, neck, and abdominal CT scans, then x-rays of the wrist, knees, and toes.  Seven hours before they cleaned up the blood.  Blew three veins trying to start the IV.  Finally got it in for a rapid drip bag of fluids.  All the while being entertained first by the drunk in the curtain across the call, then the guy who was either trying to give birth or had been constipated for ten years with all his grunting and groaning.  Eight hours after arriving, we got to come home to eat at 10:45 pm.

Saturday, dad bought a can of safety yellow spray paint to paint the step so no one else would fall  We have heard lots of choppers since then (but none with type B livers on board)--mom just yells "NO" when I hear them.  I guess they think I'm a klutz.  My feeler is hurt.

In better news, the mover will be taking my furniture and boxes from mom and dad's garage and moving it all to my apartment.  One less thing to do when we get home, and my furniture might as well enjoy the nice apartment.  And my furniture won't get dusty from the cattle trucks rumbling by!

Cow-key

What do you get when a red monkey is cross-bred with a cow?  You get the latest evil prank played by friends that know I hate monkeys!  Gee thanks, Vi  This is what Cow-key (yes, that is his official name) looks like:

In other news of note, I am thinking about drawing a line in the sand.  If nothing happens with a transplant by May 24 (my birthday and Dr. E's), I may just decide that all the stress and frustration of being here isn't worth it.  My MELD really isn't high enough to make me a priority candidate like it was when I was hospitalized in March. I go to the doctor each week and hear "see you next week."  Why?  Nothing seems to change or happen.  As of yesterday, we've been sitting in Milwaukee for three months at the transplant center's direction.  Well, none of us can take much more.  They ask if we want to see the transplant psychiatrist.  Why?  To be told that we need to focus on other things, have hobbies, journal (I blog--same thing).  Do I want a medication just to take the edge off?  No--I do not want to take more pills.  I take enough.  Maybe I should and hope that they cause my MELD to go up.  But I don't want to cause anymore damage to my kidneys.  Catch 22.

Frustrated and fed-up with waiting?  Abso-fucking-lutely!

Another Trip to the Hospital

Tuesday night we called the transplant clinic since I was having extreme pain in my right upper abdomen (basically the area of the liver).  It felt like I was having a cramp with a knife plunged into it.  Went to ER, and they decided to admit me.  I think that was mostly due to the ammonia level being 108 (normal is 30) and they thought I was possible becoming encephalopathic.  I don't think I was, but who am I to argue.  Wednesday morning started with an ultrasound at 7 AM and then another paracentesis about 10 AM.  They drained off another gallon of fluid.  Got no sleep on Tuesday night, so I slept most of Wednesday and was basically down for the count by 8:15 PM.  The nurse came in with my night meds about 8:45.  I told her I wanted to go to the bathroom before she started the albumin IV drip.  She had to wake me up twice to get up and as soon as I took the pills, I was out again.  Basically slept until about 6 AM when they do the blood draws.  Then back out again.  After I was discharged yesterday (Thursday) I came home, took a hot shower, then went to sleep again.  Actually, mom, dad, and I all crashed.

They have no idea why I had the pain or what caused it.  Dad thinks it was my liver crying out for help.  At the rate my MELD score is going, it could be a long wait in wet, sunless Milwaukee.  The MELD scoring is a lousy indicator of how sick a person is.  Using just three factors to determine your placement on the list is not accurate.  Apparently UNOS has thought about changing it, but for now, we're stuck with it.  They haven't done a liver transplant here in quite a few weeks (possibly mid-March).  To be perfectly honest, I don't really know how much longer we can all stand to stay here and wait.  We don't like Milwaukee--it's to large and the area near the hospital is kind of nasty.  We're away from home and family and have missed so much.  This is the hardest thing I have ever done.  Trying to stay positive and think "any day" gets harder and harder every day.  We've asked to meet with the head of transplant surgery at my appointment next Friday.  We have some questions that we really need to have answered.  We realize they can't give an exact date, but they have to realize that people have limits.  We've about reached ours. 

Will I stay on the transplant list, or decide to drop--I don't know.  Do we just need a break and go home for a while?  Unlikely that we would come back to having to face this all over again. Will we go home and look into people with airplanes that could fly us here if a liver became available?  I don't know what we will ultimately decide.  I guess part of that depends on the surgeon's answers.  He told us March 6 I needed to be transplanted within two weeks.  Obviously, that has not happened,  So--where do we go from here?

Things I never want to hear again

1.  A doctor saying "We'll see you next week."
2.  A doctor saying "Be patient, your time is coming."
3.  Any medical person saying "It's all a part of the disease."
4.  The words "I understand how you feel" coming from medical/quasi-medical people. 

The waiting is about the hardest thing I have ever done.  I am not a patient person--so just being patient is impossible.  Part of the disease--swelling, itching, being cold, numbness, dizziness, sleeplessness.  And trust me, you do NOT understand how I, or any other person awaiting transplant feels.  No textbook can make you understand.  It's something I can really even explain the help someone understand.

I finally said I would try the anti-itch medication.  It took an hour to work, then worked for less than 2 hours.  The Benedryl gel works better!

And I found out that they can't remove my appendix when the do the transplant because of the area in which they are working and anesthesia issues.  Gall bladder, yet.  Appendix no,  I didn't want to worry about ever having my gut opened again if the appendix goes bad.  Oh, well.  So I consoled myself with a small cherry lime Icee.  YUM!

And Marquette won their game, so Milwaukee has gone crazy!  Oh, up 2 points on the MELD score this week.  At least it appears that the kidneys were not badly damaged with the little renal failure scare, and should fully recover after transplant,

Home at last . . . and other good news

I got to leave the hospital 2 days ago to return to "Liver House" as they call it at the hospital.  We were fortunate to get the only single-family home they have.  Tomorrow night we have invited the neighbors (Robin and Dwight) from Worthington, MN over for stir fry.  My challenge is to make it low sodium.  She brought over a cute basket for my "housewarming"--whenever I can go home.  Cute vintage kitchen towels in it.  They are getting as discouraged as we are, just sitting and waiting day after day.  I have been on standby once, and he's actually been prepped twice. 

Went to the doctor today, and my creatnine and INR were much improved.  The total bili was higher. All in all, my score dropped a couple points.  I'm not due yet for an update to UNOS, so I stay at the higher score for a while.  Double-edged sword.  While it's bad that I may move down the list, I also get to stave off the renal failure they were afraid might necessitate a liver and kidney transplant.  With a liver, you run 5 days of steroids.  With a kidney, you get steroids forever, puff up, and get that moon-faced look. 

Finally getting a little tires, so I hope I can go to sleep.

Day 12

Yes, I have now been here (Aurora St. Luke's Medical Center) for 12 days.  Finally got dietary to come up with food I can eat without getting nauseous or vomiting (SORRY!).  They are concerned about my MELD and my creatnine. So we play with changing medications.  I have refused the belly shots that bruise and sting, since they really aren't necessary.  I take the other meds though.  My blood pressure has finally stabilized about 115/65 and no more of the 70/50 stuff.  But medicine to make your blood pressure go up?  I've never heard of that.  But at least I'm not light-headed and dizzy anymore.

I have been argumentative, crabby, whiny, and everything else.  Other than getting the food handled, it's done no good.  So, I changed my attitude today and stopped fighting everything and being belligerent.  As long as they leave my door closed so I stay warm, and the nurses stay quiet going into and out of their lounge across the hall, I will be a good girl.  I have accepted that I am sick and need to be here if the doctors think I do.  The only thing I will fuss about is if they say they are going to do dialysis, move me to ICU, then have Dr. Kramer change the plan.  If they suggest it, I will do it under the following conditions:

1. My things get packed on the cart to move to ICU.
2. ICU brings the bed here to transfer me to IR where they put in the line (oh, lovely sedation on this one).
3. Then I am taken up to ICU to start the procedure.

Otherwise, I will likely not be such a good girl.

Mom and dad brought me some of my projects, so I will be making some more cards.  I finished loom crocheting a stocking cap today and gave it to the hospital for the Oncology department so a chemo patient can have some pride, privacy, and warmth. Someone that appreciates Dr. Seuss that is.  I think it looks rather Seussical--like something Thing 1 or Thing 2 would wear.  You judge:

Funky variegated yarn with a "Thing" on top

Another view that doesn't look so long!

Dinner:  Roast beef and Alpine Swiss on a tomato basil wrap, Terra Exotic Vegetable

chips, and fresh fruit.  I think I'm turning into a fruit plate--I got 4 of them today!

I did banish mom and dad from the hospital so they could stay home and rest or go do something different.  I got them easy, non-freeway directions to go to Red Lobster so they could use the gift card my sister gave them for their anniversary.  Biscuit binge!  Ok, time to put the feet up and get ready for bedtime meds.  Still freezing cold even with the warmed robe they brought.  Need to climb under those 5 blankies on my bed.  Nite nite!

How many ways can you spell 'OUCH"?

So, what have I been doing lately?  I'd like to say having fun, but as you can see, that would be an inaccurate statement.  Let's take a look, shall we?

Me hooked up to the IV, telemetry, and Mahurkar line to remove

the excess fluid from my blood.  Doing the SCUF before the CVVH.

The most uncomfortable I have been to date.  The only thing missing is oxygen, but fear not--that would come later.  At this point,  I was in critical care ICU.  I was moved down to a high acuity ICU bed when they stopped the SCUF procedure. They left the line in just in case they decided to do the CVVH (continual venovenous hemofiltration). That is a 12 to 24 hour process. It removes the blood from the vein, filters it, then returns it to the vein.  The SCUF procedure does not gain me the dialysis points on my MELD score that the CVVH would, although it isn't true dialysis since it only filters and doesn't use any product to cleanse the blood.  So I am currently listed at 24, which gives me my best chance yes at getting a new liver,  just need to find a Type B now,  When they removed the Mahurkar, I moved to a regular room.

Mahurkar catheter attached to large vein in neck.  And yes, it does pinch!

The weight of the Mahurkar in the neck is enough to keep my head tilted to the right, And make it difficult to move, and make it impossible to turn my head.  They promised the removal wouldn't hurt.. Big fat lie. It is still sore more than twelve hours later.

 Best meal I've had so far. Pineapple, cantaloupe, and strawberries.

Not sure if I get to go home in the next day or two,  Depends on tests as usual.  I will try to keep you updated or my parents will update my Facebook. Thanks for all the well wishes and prayers,

Shortcut Block Party Lasagna

This post is dedicated to Mr. Hoing, a former neighbor and teacher, for always pestering me about making lasagna for the neighborhood block party.  We were talking about those parties this morning at breakfast and dad commented they were a lot of fun.  Sure, because he didn't have to do extra spelling words for Mrs. Hoing like Jeff, Linda, and I did!  So to a-c-c-o-m-m-o-d-a-t-e Mr. Hoing's love of lasagna, here is a shortcut version.  It started with Mrs. Mellette's home ec recipe and has been refined over the years.  This version is a shortcut since we don't have access to all the herbs and things that go into the full version I usually make. Know what?  I'm not going to mess with all that again.  This was just as good!

Nice and brown on top!

Shortcut Block Party Lasagna
1 1/2 pounds bulk mild or sweet Italian sausage, browned
1/2 cup chopped onion
1/2 cup shredded carrots
1 three ounce can tomato paste
1 twenty-four ounce can Hunts Garlic & Herb tomato sauce
1 egg, beaten
1/4 cup garlic powder
1 ten ounce package frozen chopped spinach, thawed and squeezed dry
2 cups small curd cottage cheese
1/3 cup grated Parmesan cheese
6 cups shredded mozzarella cheese
1 package no-boil lasagna noodles (no pre-cooking so Greg couldn't snitch them)

Combine sausage, onion, carrots, tomato paste, and tomato sauce in skillet.  Rinse paste can and add that water to the skillet.  Bring to a simmer and let simmer for 30 minutes.

In a bowl, combine egg, cottage cheese, Parmesan, and spinach.  Mix thoroughly.

Lightly spray a 9"x13" deep foil pan with non-stick spray.  Spread about 1/2 cup of the meat sauce in bottom.  Lay 4 noodles, overlapping edges, the length of pan.  Cover with half the meat sauce, half the cottage cheese mixture, and two cups of mozzarella.  Repeat layers.  Top with noodles, and scrape the last of the liquid from the skillet on top.  Cover with remaining two cups of cheese.

Spray a piece of aluminum foil with non-stick spray and cover pan.  Set pan on a baking sheet and bake at 375 degrees for 40 minutes.  Remove foil, and let sit for 5 minutes.  Cut into desired sized pieces.   Devour with much gusto!

The perfect piece of lasagna!  Look at that cheese . . .

By not cooking the noodles in advance, they absorb the excess liquid from

the lasagna, which makes them taste better and no messy liquid all over the pan.

A Sunshine Kind of Day

Wow, what an unexpected surprise! Thank you so much to my Klatt cousins for brightening up our day. The package mail came a while ago, although none of us were expecting any deliveries. Couldn't believe it was for me. Thank you so much Jeri, Penny,  Michael, and Joy for the basket full of sunshine! I now have sunshine yellow nail polish, yellow Play Doh, Juicy Fruit gum (which we all used to get in our birthday cards from Uncle Harold), Lemonheads, a chickee PEZ, puzzle book, gardening magazine, a scrubby sponge, yellow towel set and a bar of 444Farms goats' milk soap in one of my all-time favorite scents--Oatmel Milk and Honey. I think it smells like a bath-fresh baby that just ate its cereal. Plus the oatmeal in it is exfoliating, which I can use with my dry skin. Thanks again to all of you! The day is bright and sunny--and now even more so!

Cookie Nirvana

Oh, how I wish I could claim that I created these; but, alas, I did not.  But it doesn't mean I can't enjoy them in the PT (post-transplant).  I'm sure that Herman, too, will love Nutella.

http://www.tablefortwoblog.com/2013/02/25/nutella-lava-cookie-cups/#

That's all for now.  Going to hit the pharmacy in a bit, then the Icee machine at Walgreens for another CherryLime Icee.  Best flavor EVER!

Herman, Where Art Thou?

Who is Herman you ask?  Herman is what I have decided I will name my new liver when I get it.  Odd--maybe.  But to know me is to understand that!

This summer, the first of my produce was Herman the pickle  I harvested him.  When receiving a transplant, I will receive an organ that the surgeon has "harvested" from the donor.  Got it now?  I know, it's still kind of odd.  But I'm trying to keep things light to keep from going crazy just sitting around, day after day, waiting.

Thursday I will have another paracentesis done to remove abdominal fluid.  Trying to sleep is miserable.  There is NO comfortable position.  I whistle when I breathe whether lying down or sitting.  Not that I enjoy the shot that stings then the needle insertion to vacuum the fluid off into the jars.  They are vacuum jars--no one hooks up a Hoover or Oreck to get rid of the fluid. 

Although my score (MELD) has dropped to 20, I get credit for the time at higher scores, and for the overall length of time since my listing (July 2011).  So I am still number 1 for the Aurora clinic's B blood group.  Apparently, my best chances for an organ match would be from an Asian or African American donor.  Here is how the blood types break down by population:

	Caucasians	African American	Hispanic	Asian
O +	37%	47%	53%	39%
O -	8%	4%	4%	1%
A +	33%	24%	29%	27%
A -	7%	2%	2%	0.5%
B +	9%	18%	9%	25%
B -	2%	1%	1%	0.4%
AB +	3%	4%	2%	7%
AB -	1%	0.3%	0.2%	0.1%

They say that you sometimes get odd cravings from your new organ attributable to the donor.  Great, I'm going to want stir fry or collard greens.  I'll go for the stir fry, but no collard greens!  Oh, Herman, where are thou?  You need to hurry u and get here!

Valentines!

Tomorrow is Valentine's Day, and we're still sitting here in Milwaukee--waiting.  So we went to lunch at Famous Dave's BBQ for a treat.  And we went to KMart, Target, and Wal-Mart since it was a warm (41 degree) day and sunny.  Tomorrow is supposed to be snowy, and Friday is back to the doctor for the weekly appointment.  I'm thinking I won't need a paracentesis, but will wait until tomorrow afternoon to decide.

When I was in the hospital in September 2011, Dr. A (nicknamed Dr. Sunshine) had a heck of a job convincing me I wouldn't be given a monkey liver as a transplant.  Monkeys have creeped me out ever since.  I have decided that sock monkeys are cute.  So for Valentine's Day, mom and dad gave me a sock monkey that I have named Sunshine.  Here you go, Dr. A!

I bought mom and dad some flowers, and dad bought some for mom.  Nice and bright and spring-y looking.  I appreciate everything they have given up and put on hold to be here with me.

I also (partially to break the boredom, and partially because they are so awesome) put together this  Valentine basket for the nurse and support staff at the transplant clinic.  Everyone thought it was cute!
"Operation" bandages, lollipops, heart-shaped Snickers, Conversation hearts, and Dove dark chocolate as the filler.  Plus  a pile of free tickets to the Shrine Circus this coming weekend.  They came in the mail for a former occupant of the house, and were not able to be forwarded.  So we got them.  Since clowns are about the only thing as creepy as monkeys, I stuck them in the basket.

I also got a great Valentine postcard from my friends the Kings, who took a Presidents' Day vacation to Florida.  My little buddy Matthew (who has grown so much) and his sister Lolita wrote me a message in the sand.  I love them all (even crusty old Thomas).  If you are even in Pierrre, stay at the Kings' Inn.  Very nicely renovated and great service  They take great care of my brother when he has to go on business.

On Friday, we saw the awesome Dr.K--who is as nice as Dr. M here in Milwaukee (and both Drs. S, the surgeons), and my liver doc at home Dr. E.   Dr. K said it shouldn't be too much longer.  I hope it isn't.  We're all bored, and want to get back home to our lives.

Pastor Liz, we all hope your installation service was wonderful.  You had a beautiful, sunny day for it  We hope all is well with you and Nick.  Best wishes to you and the congregation!

I Smiled

Normally, any video dealing with transplant makes me cry.  This one made me smile.  I have made the right decision to go ahead with the transplant here at Aurora St. Luke's.

http://www.youtube.com/watch?v=2JVzC_KKsYo

And please, if you aren't already a donor--think about it and share your decision with your family.

Bored

Have you ever been so bored that your butt cheeks hurt from sitting?  We all have.  My furniture and stuff had more fun than we are.  It left Pierre on January 13.  The moving van's motor blew up in Huron.  A pickup from Madison came to tow my car back to Madison and got it in my parents' garage.  The tow truck wouldn't come get the moving van to Madison due to weather.  The next day it hauled as far as Howard.  Then it got pulled by the movers pickup to his house in Madison, then my belongings taken pickup load by pickup load to my parents' garage.  It is now waiting there until I get home and can have it hauled once again to my new apartment.

This past Friday I had labs done and another paracentesis.  This time they took 3 liters, for a total of 19 liters since December--or just a touch over 5 gallons.  My MELD is 21 this week, but a big jump in my creatinine, so I need to reduce my diuretics to prevent my kidneys from drying out.  I guess that means less running to the bathroom, so there is a slight up-side.

Raining today, and supposed to continue tomorrow.  They are getting loads of snow back home, so I'll take a little rain even if it does freeze.  Not like we have anything urgent to do--other than the hospital.  Otherwise it will wait until Tuesday or Wednesday when it dries off.

OK, not much else going on, so until later . . .

Mixed Signals

Ok, I was told to here to Milwaukee as soon as possible because of my MELD score increase and overall decline in health.  So we did.  My parents put everything in their lives on hold to bring me, we arranged all my moving long-distance to take my belongings from Pierre to Madison.  The doctor wanted to see me weekly, and increased my medication to help get rid of fluid, and I've endured two more paracentesis taps to draw off 11 more liters of fluid.  I liked the doctor (Dr. M).  He thought it wouldn't be too long before transplant.  The other transplant surgeon said it wouldn't be long.

The doctor we saw today was totally opposite, acting like "why are you here?"  And she assured she understood how I was feeling about how long it is taking.  No, Dr. Brown, let me assure you that you do not.  You may have dozens of patients on the waiting list--but you have NOT been on the list.  Your child has not been on the list.  She said some patients get transplanted after a month of waiting in Milwaukee, while others wait here eight months.  Eight?  That is NOT happening.  We are not waiting here so far from home for eight months.  We will be going back home and if the time comes for transplant, they will be bringing me by air ambulance.  I will be in my apartment, my parents at home, and their psychotic dog back with them.

Let's get on the same page people!  How can one office be that fractured in its communications?  Make up your minds and let me know, ok?  The only good news was that I didn't need a paracentesis today.  MELD is 21.

We did a little exploring after the doctor.  Lunch at The Chancery Pub whose French onion soup isn't all that great.  Went to Target and got a heated throw for the sofa so I can be nice and comfy.  Then to Pik N' Save to buy groceries.  Yummy fruit.

Numbers, Diagnoses, and Substitute Puppies

Forgot to include in the last post that my MELD score is now 22, which is up 2 points in a week.  Most of that is attributable to the worsening of my kidney function, and a 1.7 point jump in my bilirubin.  Apparently I now have a lovely yellow shade to my skin.  I'm accustomed to doing everything I could to get the number down.  Now we want it to stay there, or go up a couple points to improve my chances of getting a liver more quickly.

I also had to take the orders back to the prep room for my paracentesis on Friday.  All of the diagnoses were listed there.  I knew the non-alcoholic cirrhosis and hepatic encephalopathy.  But also listed were large volume ascites (the fluid in my legs and abdomen), portal hypertension, and renal failure.  That was kind of surprising.

Oh well, I hope the tap on Friday goes better then this last one.  Fingers crossed . . .

Last night, mom and dad were talking about relaxing since they didn't have to let Shiloh out.  Then they immediately admitted that they missed the little brat.  I brought along a stuffed puppy that my grandma made to make me smile on bad days.  So I shared him with dad.  Here are dad and his substitute puppy:

Tree Trunk Legs and What We Did for Fun on Friday

Last week, Dr. M upped my diuretics to the full dosage to try to remove some of the fluid in my legs and abdomen.  Basically, I went to the bathroom A LOT and lost tons of fluid.  You could see my ankles, and even my toes were skinny again.  I thought I had done well.  On Thursday the surgeon's CNP squeezed my calves and I actually yelped from the pain,  And a bruise.  Yesterday, the nurse asked in I normally got swelling in my legs.  She said she could tell I did when she looked at my legs, and said I had "tree trunk legs."  I thought they looked really good.  My neck and collarbones are starting to look skeletal, and I have tree trunk legs.  Yay.  Not what I wanted to hear.  I had already felt lousy all day and only ate a few cucumber slices.  And wound up crying at the doctor's office because I felt so crappy,

Then there is the fluid in my abdomen.  I looked about 8 months pregnant, and having to lay back on the exam table was painful.  So off to paracentesis land after seeing the doctor.  This week they got 4 liters of fluid off.  But it actually took three taps to get it.  The first one stopped after a liter.  They tried going in right by it so they wouldn't have to use more lidocaine to deaden more.  Second tap was a total bust.  More lidocaine injected (ok, a poke, and now some burn).  He couldn't get into the fluid pocket.  Change needle because maybe it was dull.  Still didn't want to go in.  Finally, after wrestling and ramming the needle, they got it in.  Because the pocket lining was deep muscle.  Yep, that's me--totally ripped.  Complete 6 pack.  More like a few tubes of cookie dough with all that fluid.  I know I have a belly button, but it's under the rise of the fluid pocket.  And I get to look forward to this every Friday for the next 4 weeks.  So basically, the next four Fridays will be as much fun as yesterday was--with the exception of mom's trip to Urgent Care after my appointments.

Not quite dark yet, and still a while before rush hour.  In a city you don't know.  With snow flurries falling.  My doctor's nurse had given us the address and hours of the nearest clinic.  We even knew where that road was (turn between Michael's Crafts and the Pik n' Save grocery).  Wait a while.  See doctor.  Get prescriptions for UTI.  Go to Wal-Mart to fill said prescription.  Run down to Boston Market to get turkey and stuffing dinners for dad's birthday dinner.  Stop at Wal-Mart to pick up prescriptions.  Drive home in the dark, in full Friday night traffic, in the snow.  Happy Birthday, Dad!

The bright spot of the week--finding out that Mario Batali may be doing my transplant surgery.  We all knew he had some mean knife skills, and cooking has become old hat, so he's branching out again.  Well, not really.  But Dr. S does wear orange clogs like Mario.  So instead of "I wanna be like Mike," it is "I wanna be like Mario."  And he said he expects a big picture in the blog (not sure how he'd hear about that).  So here is Dr. S, sans orange clogs:

 

I tried to make it bigger, Doc, but then you get fuzzy!

Well, not much else going on.  Just waiting for Edible Arrangements to re-deliver dad's fruit bouquet from Jana.  We were at the hospital yesterday when they tried to deliver.  Watching HGTV and the Food Network.  Tomorrow is "The Good Witch" marathon--really looking forward to that . . . they are so cute.

Not Today

Brandy--EYES CLOSED! This has photos other than paper that social workers like to look at.  Silly girl.

This morning I had labs drawn, then an appointment with Dr. Mawaldi, the hepatologist here at Aurora St. Luke's Transplant Center in Milwaukee.  Very nice guy.  I had a feeling that I would need to have a peracentesis (fluid removal from the abdomen) since I had some swelling.  I did.  My first paracentesis on 12/12/12 drew off exactly 5 liters of fluid.  Today, they drew off 6.89 (basically 7) liters of fluid.  Three and a half gallons in just over a month.  Not good.  Basically my liver has totally stopped functioning at all.

 Drawing the fluid off my abdomen and getting an infusion of albumin.

 Seven .9 liter jars plus .45 liters in the 8th.  No head on this, since they add a

thickener so it can be incinerated and not go into the biomedical waste neverland.

While I was still on the gurney from the paracentesis, one of the transplant coordinators called to tell me that they had a liver from a local donor that was being tested for viability.  If the center ahead of me passed on the liver, it would be mine so I needed to be ready for transplant.  So stay by the phone and wait.  Initial freak out--I mean I had just seen the hepatologist, was in a gown, on a gurney!  Who would get that call?  How likely would that be.  Well, as it turns out, it wasn't to be for me today.  The other center used the liver, so I was told to stand down and wait for another call.

So it's back to waiting, more appointments next week--including another possible paracentesis.  Yay!  Another round of fun in the 50 degree procedure room . . .

Schlamele, Schlamazle, or however you spell that

Yep, it's me, up again in the middle of the night.  The fluid in my abdomen makes it very uncomfortable to sleep, so I'm up.  Friday I see the hepatologist (liver doctor) and have labs drawn, then Monday it is the transplant surgeon, pharmacist, and social worker.  Then I am supposedly ready to go as soon as a liver comes up with my blood/tissue match, and provided my numbers (MELD score) is next on the list and I'm not sick at all.  Just a few ifs that could keep me waiting for a while.

As Laverne and Shirley danced their wacky way to work, we have reached Milwaukee ourselves.  Although cold, no snow, lots of sun, and perfect roads.  Hardly any traffic except at the junction of I-90 and I-94, then again the last half hour as we got closer to Milwaukee.  Road maps?  Who needs them.  Garmin's "Chica" as I named her, got us everywhere we needed to go, right to the front door.  Thanks to the updated maps dad loaded last week, it worked great.  If you don't have one, get one!

So, we started out about 7:45 AM on Tuesday:

 

Yes, that is my beloved pair of lime green flip flops.  I figured they would be good to wear around the house and the hospital, provided my feet fit into them post-surgery.  Who knows?

We did do something rather goofy along the way to get out and stretch our legs and take a break.  We went to the Spam Museum in Austin, MN.  Why?  Why not?  Gotta do something goofy and some time or another!  So, here in all it's glory is Spam Land:

The great wall of Spam!  More than 6 billion cans of Spam have been sold, and the

manufacturing capacity of 44,000 cans per hour cannot "meat" the demand.  In the

US, Hawaii consumes the most Spam; internationally that honor goes to the small

island of Guam and Korea.  Must go well with Polynesian and oriental food.

 It's "Spammy" welcoming us to Spam Land!  He's just a statue.

It's the Spam Cyber-Diner!  Did you know you can order all sorts of Spam from

the comfort of your home?  Or that Spam comes in 30 flavors, the newest of which

is jalapeno, although that isn't as hot as the Hot 'N Spicy flavor?

 Originally, Hormel's products were delivered by wagon.  Now they are distributed internationally.

 A display of products originally sold by Hormel in their store.

 The military was one of the largest consumers of Spam, due to it's sturdy packaging and

long shelf life without refrigeration.  Many soldiers of foreign wars found it in their rations.

Today, Hormel produces many other products, including the DiLusso line of

deli meats and cheeses, sold in some of the best grocery stores and meat markets.

 I love the Herb-ox soup bases, available in single-serve envelopes or in jars.  They are

sodium-free!  And until visiting their "store" I never knew it was made by Hormel.

 The best sauces for oriental food (LOVE the Classic Stir Fry) are from the

House of Tsang, which is a Hormel company.  Guess they made them for their

top consumers of the Spam product!  The newest Hormel product--Skippy Peanut Butter.

 You can purchase almost any flavor or packaging of Spam in their gift shop.

Sir Can-a-Lot of Spamalot!  Spam, Spam, Spam, Spam . . . 

Sunset in Wisconsin near Baraboo, where we stayed Tuesday night.  We did NOT

go to the Ringling Brothers Museum, because clowns are creepier than monkeys.

The photo is a bit blurry since it was taken out the window as we drove along.  It

almost looks like a rainbow right around the setting sun.

As we pulled into Milwaukee and our neighborhood, I snapped a picture of Aurora

St. Luke's Hospital.  This is actually the side, and we are across from the left end.