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,