THREE MONTHS POST-TRANSPLANT

TODAY IS THE FIRST DAY!

HERMAN HAS ARRIVED!

At 3 AM on May 20, we received a phone call from the Milwaukee transplant center that they had a liver.  Being skeptical after so many "stand by" false alarms, I asked if this was another of those.  No, Margie said, this one is viable for YOU.  So mom and I called the air ambulance company and we took off on a $12,000 plane ride to MKE.  A transplant escort vehicle took us to the hospital running lights and sirens the whole way.  You get some odd looks riding in a vehicle that says ORGAN TRANSPLANT TEAM on the side!  About an hour after getting to the hospital, I was on my way to pre-op.

I woke up after 7 PM that night frustrated that my hands were restrained and that I was on a ventilator.  I had to endure that for about 3 1/2 hours.  Then they came to take it out and I coughed it out good!  Think I messed up my wrists from fighting the restraints though.  I was totally looped on pain meds, so I don't remember much other than mom squeezing my finger when I was wiggling it.  She was a bit freaked out by all the monitors and 16 to 20 bottles and bags on the IV stand.  That picture is quite wiggly.

Thursday morning I woke up feeling pretty good.  I called dad and said "Good morning, da-dee!  I think he cried a little.  He would come to Milwaukee over the coming weekend with our car.  I got upset when I didn't think the nurses were emptying my JP drain when I asked them to.  It turns out they were emptying it, but I had so much fluid and blood leakage that it took less than half an hour to fill.  In spite of pumping 16 units (that mom remembers) of blood into me Wednesday and Thursday, Friday morning was back to surgery.  Mom was there about the time I got back to my room, and she was hurting.  She had fallen on her back in the hotel during the night and now has a compression fracture, which she is rehabbing.

The doctors re-opened my incision and fixed the two bleeders and removed the very large hematoma that had formed on the new liver.  Back to ICU with the restraints and ventilator.  Only about an hour that time.  So now I know why my rib cage is totally FUBAR.  Being cracked open for 8 hours total will do that.  Yeah, Dr. P--it hurts because I have bad posture.  NOT!  And he's the physical rehab doc.

The bleeding slowed, I got up and was walking (and dancing) around the nurses station for the next few days.  Then I left ICU and went to the post-transplant floor (icky 8 Center) for three days, then off to rehab wing for 6 days.  Then home for four days.  Then back to the hospital for 3 days.  I think the only reason they let (kicked) me out of the hospital then was that I was being my stubborn, demanding self, and they weren't meeting my expectations.  I can be that way, right Jessica L.

The house the hospital had put us in for the short-term rental was in NO way handicap accessible.  Nor was it adequately furnished, or clean, or even remotely comfortable.  The Aurora foundation and Ogden Property Management have a LONG way to go in learning how to manage rental property.  I did it for 10 years in Sioux Falls, so I do know what it takes.  Plus the parking sucked and we got $65 worth of parking tickets courtesy of the City of Milwaukee.  And I'm still waiting for a copy of the rent invoice, Cristina!

Now I'm back in South Dakota, recovering, getting better labs, and looking forward to moving in with my furniture which has been comfortably been ensconced in my apartment for the last 2 1/2 years.  And it didn't even contribute to my rent--it expected ME to pay for its rent.

So, what can you expect from a liver transplant other than weakness and pain?  Here are a few pics.  Don't look if you are offended by scars!

Yes, after transplant, you can paint your fingernails again since you aren't always waiting for a pulse-ox monitor to be slapped on you--and they don't like polish very well, especially not the OR ones.

The healing incision on my now almost flat tummy.  Cut side to side along the bottom rib, and 3 inches up the center (known as a Mercedes incision).  And I didn't even get the stinking car to go along with the incision!  What a birthday gift!  Yes, I got a new liver to save my life for my birthday.  The big 50.  And that's a shadow from my hand and cell phone, not a bruise.

The Sunday after we got home, we sponsored the radio broadcast of the church service, and had flowers in memory of the donor.  I don't know who the donor was, but I have a very strong suspicion.  I also wrote a prayer for the pastor to read during the peoples' prayers.  I am not a totally devout Lutheran, but I do believe.  Especially after everything I've been through in the last five years.  Here is it, and it is raw:

Dear God,

          Many are the times I lost faith; I thought you had given up on me.  Did you not see my suffering and pain? 

          I was afraid to live and afraid to die.  Then one night you called. It is time. In your grace you filled me with calm.  I did not panic or fear.  I just came. 

          You granted the medical staff the skill and ability to do all that was necessary.  There were challenges and bumps in the road, but now I can look ahead to returning to life.

          Please continue to hold my hand as I recover.

          Bless my parents and family for all they have done for me.  Thank you for all your prayers, thoughts and support.

          Please comfort the loved ones of the donor, who gave the ultimate gift, hold them in your heart and hands.

          Four days after the transplant, I celebrated my 50^th birthday with the gift of life.  Thank you for bringing me back to your light.  I am your child, and you are my Father.

I am doing my physical therapy, getting massages to ease the pain since I don't like to rely on pills, and starting to enjoy doing some of the crafts and things that I used to love doing.  There is life after transplant, it just takes a while to get it going again.  I'm tired of hearing "It takes time" and "Be patient."  But I'm trying.  Not very successfully, but I am trying.  The only thing happening quickly is the weight loss.  The fluid weight I've been carrying for a decade or more is falling off anywhere from 1/2 a pound to 3 1/2 pounds a day.  Makes me a little weak.  But I refuse to use the cane, and my walker is not a clothes rack for old medical embellishments.  Kind of like my drawers.  Anyone need Coban or ted hose?

Off to Omaha!

I finally got my insurance changed to a plan that allows listing at more than one center,  So off to Omaha we go for a week if testing,  They are supposedly accepting the majority if the testing I've already gad done,  We'll see if it brings any action any faster than Milwaukee did.

Still Here

Yes, I'm still waiting for my new liver.  No activity from Milwaukee, and the doctor is kind of giving up on them.  So on to Omaha where they think I will have a better chance getting transplanted at a lower MELD.  I had to change insurance companies to be listed in two places.  Now just waiting for the schedule to go down to Omaha for testing.  They are accepting most of my test results, but I have to do blood work, have an ultrasound of my abdomen, and meet with their doctors.  Hopefully it will improve my chances.

Now my MELD is 24 and I continue to keep up with the paracentesis every two to three weeks.  I have stopped keeping track of the total amount of fluid removed since it was too depressing.  I have very little appetite most days and have trouble drinking all my fluids.  I've had a random virus for the last week, causing all sorts of issues.  Not fun.  Plus I'm having a lot of trouble with sleeping well.  At least I haven't been in the hospital since September when I had a reaction to my flu shot.

Earth to Funky?

Are you there, Funky?  Yes, I'm still here.  I've horribly ignored the blog yet again, but with good reason.  I'm tired of all this crap.  Yes, crap.  My MELD goes up, it goes down, I get false alarm calls about possible transplant, I get sick, I get better, I sleep constantly, I can't sleep.  The only thing constant is that I am cold.

We are now at 566 pounds of fluid removed.  Poor Fat Albie can't even walk, he just rolls everywhere now.  (Fat Albie is the person created by the removed fluid).  The PA that does my paracentesis and his wife had a baby while I've been waiting.  She'll probably be in college by the time I get my transplant at this pace.

The good news is that Sioux Falls is almost fully staffed for their liver transplant center--as soon as the third surgeon comes this summer.  I really hope that I can get my transplant in Sioux Falls rather than Milwaukee for both cost and convenience.  The docs are good in both places, and I know them all, but it would be good for mom to be closer to home for the couple of months I'd have to stay in Sioux Falls for recovery after release from the hospital.

Currently I am on my second round of antibiotics for bronchitis.  I had the worst cough I can remember in decades.  Just about gone now.  What else have I done?  In April I did some fundraising for the new roof on the church.  About $2,000 from the craft and vendor fair, plus got a couple of generous pledges.  I made 72 bars of soap, and it was almost gone.  Just four bars left now between what was sold by mail, at the fair and what we kept to use.  Love me some Rosemary Mint soap!  The big sellers where the two batches of Lovespell and the Coconut Orchid.  I'll make more for the church ladies craft fair this fall.

 Citrus Cilantro swirl soap.  Dad thought the green embed looked like a giant

dill pickle in the middle of the soap, but it opened up with the heat of the soap.

To TIPS, or not to TIPS?

Ok, so last Monday we set a record with 11.3 liters of fluid removed during the paracentesis. I thought we'd get 6 or 7 today. Nope! Record territory again--11.4 liters! Fat Albie now weight a whopping 453 pounds. That's 55 pounds of fluid weight up and down in two weeks--this can't continue.

Fortunately, my creatnine was back to 1.3, so I get some but not all of the diuretics back. That will help. Tomorrow during the weekly call with the transplant center in Milwaukee, they are going to talk about whether or not I'm a viable candidates for the TIPS placement. With a history of hepatic encephalopathy, it's risky. But it can be controlled and reversed. Dr. E said it makes his mind race thinking about doing that to me, but the more frequent and high volume removals of fluid carry their own risks. Under no circumstances am I a candidate for a port and tube for home fluid removal due to infection risk. With the recent bout of sepsis, I whole-heartedly concur! If we do the TIPS, I am insisting on general anesthesia, not local. Here is why:

http://www.nlm.nih.gov/medlineplus/ency/article/007210.htm

PIC it up!

I started feeling less than great on about New Year's Eve.  The 4th and 5th of January I felt downright lousy.  The 6th I felt fine.  I woke up on the 7th with a fever.  Regardless of taking a small dose of Tylenol, I just felt worse and the fever kept rising.  Mid-afternoon the doctor said to rest and hydrate.  By 7 PM, I was starting to become incoherent.  The doctor's office then said to get to Sioux Falls to be admitted.  My blood had an elevated white count, so we started IV antibiotics.  I felt pretty good the next morning, but had another paracentesis to remove 9.3 pounds of fluid.  Fat Albie weighs 398 pounds.  What had happened?  Sepsis.

What is sepsis?  Here is about the easiest definition:


Sepsis

Sepsis is an illness in which the body has a severe response to bacteria or other germs.

This response may be called systemic inflammatory response syndrome (SIRS).


Causes

The symptoms of sepsis are not caused by the germs themselves. Instead, chemicals the body releases cause the response. A bacterial infection anywhere in the body may set off the response that leads to sepsis. 

So after a week in the hospital being blasted with antibiotics, I get to do ten days of IV infusion antibiotics at the local hospital.  It only takes about half an hour, but the PIC line hurts.  The insertion point is sore, and the adhesive is burning and blistering my skin.  The first night I had a major bleed from it, and had to have the dressing changed after one day.  That hurts, too.  I've found that if I use Coban to wrap the lumen to my arm so it doesn't move, it hurts less.  Woke up when the recycled Coban from earlier in the day came unwrapped, so now it is wrapped in Angry Birds Coban.   The PIC line is inserted on the under side of my right arm, runs up the arm and across the chest to the area near the heart.  What is weird is that I can sometimes feel where it is.

 The dressing pulls my skin so badly that it looks like I have wrinkly old lady or

elephant skin.  We change it again the 21st, then hopefully remove it the 23rd.

 I have a feeling I will be using lots of hand sanitizer to get the adhesive off, which will likely burn like a son of a gun.  Maybe lotion will work, too.

In better news, Avera McKennan is apparently close to submitting their application to UNOS for approval as a liver transplant center.  That would be awesome, so we wouldn't have to travel back to Milwaukee.  It would also be much less stressful to be closer to home.  So cross your fingers and anything else that you can safely cross.

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.