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.

Bummer

Thanks to the lovely winter weather for this weekend, my movers can't get my things from my apartment in Pierre and bring them to Madison.  So, no electric fleece throw, no fleece blankies, and no craft stuff to take with me.  Kind of bummed about it, but certainly don't want them to travel on bad roads--especially pulling Lucibelle (my car).  So now I have to think of something else to do.  I always wanted to write a book, but I doubt that will happen.  I can't draw a stick person, so I won't be doing any drawing.  I can eat very little, so doing a bunch of recipe testing is a definite no.  I can't blog constantly or you will all be falling asleep.

If you have any suggestions--let me know! 

Farewell, Pierre!

Well, I am about as ready as I can be to leave tomorrow. Between 5:45 and 6:00 AM.  I can only take 2 suitcases and a bag on the shuttle with me.  Everything else I have to hope the movers will be able to bring on Saturday.  So hope for good weather.  Keep hoping for Sunday, so that we can leave for Milwaukee.  I think we have taken care of everything we could possibly need to arrange for being gone.  I have to go to the bank in Madison to give them a copy of my ID so that my account is ready.  I also have to sign the leave for the apartment that I will not be able to move into for several months.  But can't do that from here in Pierre.  I actually feel so tired, that I don't even know how tired I am.  Most likely, I will feel that as soon as we get to mom and dad's and I crash on the sofa.  Even the psycho dog won't bother me tomorrow.  For now, need to unplug the TV and put the bubble wrap on it so the movers can just pick it up and put it on the truck. 

I do have some pictures of Milwaukee--courtesy of Google Earth.  So, here is the house where we will be staying and some of the area attractions:

The house on 30th Street, with the hospital in the background.  Guess

that means we'll be hearing lots of sirens and helicopters!

Real bagels just 3 blocks away.  YUMMY!

Bucket List--eat at Chipotle. Cilantro lime rice, the yummy marinated

chicken breast, and a nice warm tortilla.  Maybe just a light smear of mild salsa.

OK, it's actually the No. 1 Chinese Restaurant, but the post is

blocking the 1, so it just looks like "NO Chinese Restaurant."  Is it

even legal to have a strip mall with no Chinese restaurant in it?

I loved the Walgreen's sign right at the turn in to Wal-Mart.  We don't

even have to go out onto the main road to get there--about 3 blocks of

side streets and a cut through a parking lot.

Two places we will not be going.  No liquor stores, and NO Indian food!

Good night, and good bye Pierre!  I will miss my friends, my little Nashers and Gogan buddies, DakotaMart, DakotaMart Pharmacy (Rob rocks!), Scrappin' Ladies, Hogen's Hardware Hank, Red Rossa, Dr. Plumage and Bobbi, and the crazy lefse ladies

Season of Change

I guess my New Year's resolution is accepting change.  No longer being able to work.  Moving from Pierre to Madison, and getting a new liver.  Next week I leave Pierre, and my belongings will be moved to mom and dad's spare garage.  I will stay with them for the few days before we head to Milwaukee to begin the final prep testing for my transplant.  My numbers have remained elevated for long enough now that they would like me to be in Milwaukee should a liver with my blood/tissue match be available.

Check the box when you renew your driver's license, and

make sure your family knows of your wishes.

My apartment in Madison will be available the first part of February.  My stuff may move into it, but I won't be for a while. I will be hospitalized for several weeks, then remain in Milwaukee for observation for a while before going home.  I will have to stay with mom and dad for a bit until the doctors feel I am able to take care of myself without monitoring.

So, here is what my apartment will look like, courtesy of dad's nifty camera work (really--pictures of the closets but not the bedrooms?) and mom's debut as a Price is Right model/Vanna White wanna-be.  Thanks for running over there to do that; I do appreciate it. But I wouldn't be your daughter if I didn't give you at least a little grief.

The kitchen--view 1

 

The kitchen--view 2

 

 

The kitchen--view 3 with Vanna White Hair (mom) showing the pantry.

 

Vanna holding up the wall

 

Living room

 

Private laundry!

 

Master bedroom closet

 

One of the bedrooms

 

Closet in guest room a/k/a the "craft" room"

 

Stay tunes for exciting (or not so exciting) updates from the move and the trip to Milwaukee.  There will be NO surgery pictures taken or posted, so you can open your eyes now, Brandy!

 



Am I Happy or Scared?

I spoke to the transplant center this morning after having my labs drawn on Monday.  My MELD is still elevated.  So as of now, I am #2 on the B blood list.  The person at #1 is a liver/kidney dual transplant.  I will find out tomorrow if I continue to stay in South Dakota, or head to Wisconsin to wait and prep for transplant so when the call comes saying they have an organ, I will be ready to go.

It is good news, in that I will be getting a new liver so that maybe I can feel better after recovery.  On the other hand, someone has to die for me to live.  And I have to live with their spare parts in me.  How do I really feel about that?  I've kind of been grappling with it all day, and it's brought me to tears a couple times.  Then I feel positive that I won't have to feel lousy like today forever.  All while I've been trying to clean, sort, and pack to move.  I can only do so much before needing to rest again.  I hope I sleep tonight, and don't lay awake thinking.  I hate that.

So, until tomorrow after the transplant committee meets and I get my answer, I will pack a few more boxes.  Yuck.

Tiramisu the Easy Way

I love tiramisu, but not things like raw eggs.  In fact, I'm totally not allowed to eat them.  So I came up with this recipe as an alternative.  I have also given the ingredients with both alcohol, and a non-alcoholic substitute since I can't and don't drink.  So choose which way you want to go, or mix it up a bit.

2 eight-ounce containers mascarpone cheese, softened
1 three-ounce package cream cheese, softened
2 cups heavy whipping cream
1 teaspoon rum extract or 1 Tablespoon rum
1/4 cup Kahlua coffee flavoring syrup (like Torani), or 3 Tablespoons Kahlua or Tia Maria
1/4 cup powdered sugar
1/4 cup unsweetened cocoa
1/3 cup finely shredded dark chocolate bar
1 cup very strong coffee, cooled (I use Medaglia D'Oro Instant Espresso Coffee)
2  fourteen-ounce packages Alessi Savoiardi crispy ladyfinger cookies

Whip heavy cream until stiff peaks form.  Whip together mascarpone (as Giada de Laurentis would say:  maas-car-POH-nay) and cream cheeses; beat in powdered sugar, half of rum/rum extract and half of Kahlua/Kahlua syrup.  Fold in whipped cream.

Put coffee and remaining rum/rum extract and Kahlua/Kahlua syrup in a flat container.  Roll savoiardi in mixture to allow each side to absorb just a little.  Do not let set in liquid or cookies will get mushy.  Start by doing about 1 1/2 packages, since it doesn't usually take all of both packages of cookies.

Line bottom of plastic or glass pan (9" x 13") with a layer of cookies.  Do not use metal.  Top with half of filling mixture.  Dust with half the unsweetened cocoa powder.  Layer remaining cookies over filling.  Top with filling and dust with remaining cocoa powder and the shredded dark chocolate.

Cover loosely and refrigerate overnight to let flavors combine and cookies to absorb the flavor fully.  Cut into squares or rectangles.  If desired, dust serving plates with unsweetened chocolate, and top with a dollop of whipping cream and a few shavings of dark chocolate.

It's been a while, hasn't it?

Just noticed I hadn't posted anything since OCTOBER!  Sorry about that.  I was dealing with a lot of stress at work, and it kind of put me in a funk.  Don't have to worry about that anymore since I am no longer working.  I had some health issues earlier this month that put me in the hospital for 5 days.  Basically 5 days of fluid push, so I wound up a tad bloated and had my first bout of abdominal ascites.  Finally got to Sioux Falls to see the liver specialist and had an ultrasound done.  And a lovely paracentesis to remove the fluid.  This is what was removed:



Four 1.1 litre bottles, plus .6 litres in the fifth.  A total of five litres, or just about 1.5 gallons of fluid.  Which  is about 14+ pounds.  With the additional fluid I've lost since then (that wasn't in the abdominal pocket), I've lost about 34 pounds now.  Since 12/12/12.  Not fun!  Fortunately the fluid was clear and had no infection or bacteria.

The foamy white stuff on top is protein.  The loss of the protein required an infusion of two units of albumin.  Infusions are NOT fun.  They cause much bruising, especially since they'd had so many problems finding good veins all month anyway.

If you look at the center of the bruise, you can see a wiggly unbruised line.  That was the infusion needle.  This photo was taken four days after the infusion.  The discoloration had started to fade.

 

Now if only my MELD score would go down.  It had been running 18.  A year ago it was 14 to 15.  In the hospital it hit 23.  We've gotten it back down to 20.  Now I have to re-MELD monthly for the transplant center so they can see where I'm at.  Had those labs drawn again yesterday.

 

I am still weak, and get fatigued very easily.  I am not up to working full-time anymore.  So I am moving closer to Sioux Falls to have easier access to the transplant center by air when the call comes.  Or I can ride with my parents if it's a "you need to be hospitalized, but no organ available right now" situation.  Hopefully I can find a part-time job to help while I apply for disability.  I found a great apartment with 2 bedrooms, and it was completely renovated inside and out last summer.  New carpet, blinds, cabinets, countertops, appliances (including the smooth-top range like the one I have now).  Finally will have space for my craft stuff.  Packing, sorting, and cleaning are going slow but sure.  I have to take regular breaks and drink plenty of fluids.

 

In the next day or two, I should have my tiramisu recipe posted at the request of a few people on Facebook.  For now, time to do a little more work on the apartment before I shower and turn in for the night.  Very tired tonight.  Hope to sleep well.