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.