Dress Rehearsal Went Well

When Fred went through his first transplant in 1999 he did not actually get his new liver until the third call.  UCLA first called us down and had us wait in the ER while their surgeons evaluated the liver.  After a few hours (which seemed like a day), they told us to go home.  The liver in question was too fatty and not suitable for transplant.


We were completely new to the idea of getting a call that wasn't THE CALL.


The second call in 1999, Fred was called down to the hospital and was admitted right away.  He was started on IV anti-rejection medication, but was told that the liver came from a donor who had brain stem cancer.  That there was a miniscule chance the cancer could be transmitted from donor to recipient, and that they only offered a transplant from a donor with cancer to a recipient who currently had cancer.   Fred was told that someone had jumped over him and was now #1 on the list who also had cancer.  This anti-rejection medication and preparation was to get Fred ready for transplant should the surgeons discover Recipient #1 had cancer outside the liver -- this liver would go to Fred as a backup.  Fred unflinching said he hoped #1 got the liver.  And that is what happened.  They unhooked Fred and told him to go home.


The third call was Fred's liver.  It was the one that was meant to last him all these years.  The third call, he was admitted and brought to OR with no hesitation.


Well, this morning, we had our dress rehearsal for Liver #2.  We got a call from the on-call transplant coordinator for KUMed at around 7:30am.  She said they were in the very early stages of dealing with the organ procurement agency and had been notified a liver was available.  She wanted to know how far away we were from the hospital and told Fred not to eat or drink anything until we heard back.  Then she updated us for Fred to take his meds and have a light breakfast.  She said it could be a while until they knew more.  Stand by.  So we did the drill.  Shower. Pack. Clean. Pray.


At about 10:30 this morning we got the call that the surgeon was evaluating the liver and for Fred to NOT eat or drink anything else.  She would call us back in a couple of hours.  But only 20 minutes later KUMed called to say they were sorry.  The liver that was available was not suitable for transplant.


Feeling grateful for our prior experiences, which kept us cool as a couple of cucumbers.  And, we were definitely relieved to see Fred pop up on their radar. 

Since we last spoke...

I got really sick and it was not just the crappy tots from John's Big Deck.  It was total inflammation and I am 100% sure it was the fumes from the new carpet causing lupus to brew.  Headache, foggy brain, poor concentration, fatigue, pain in my hands, and blood pressure through the roof.  I felt like I was coming out of my skin.  The air purifier arrived on a Monday.  We set it up and ran it in the living room by day and bedroom by night.  That sucker ran 24/7 for at least 3 days before it stopped showing "poor" air quality.  It took 7 days of it running for my BP to come down.  I added some doTerra lavender oil (day and night) to my regime (thank you April Rego -- and thank you for your prayer texts -- they lift me) and now am back to  low-to-normal BP.  We now keep windows open as much as we can during the day.  Keep the purifier in the bedroom.  It goes off strong and reads poor air when we SHUT the windows.  You would think it would run hard all day from the dust, but instead, it kicks on strong at night.  Oh well, I think we have it under control, for now.

Fred is doing really well.  He is in good spirits and feeling as good as he possibly could -- all things considered.  We learned that his tumor markers have continued to come down.  They were 600 in September 2015, almost 1800 in February 2016;  3 weeks after treatment went to 76 and now down to 12!  Woot woot!


I am working,  but staying out of the gym since I read something about the antibiotic-resistant bacteria at gyms.  My body is changing and I don't like it.  On top of that I am cooking up a storm to keep the food healthy and keep us out of germy restaurants.  I am taking pictures of all my colorful creations.  Who knows, I may even start a food blog with recipes if I find there is an interest. 


Fred is reading, walking, watching TV, napping, and keeping in touch with friends back home.  He spoke to our neighbor Grant who had knee surgery last week (we continue to wish him good health and a speedy recovery).  He has stayed in touch with his girlfriends Kristen and Chrisanne, his pals George, Ron, and Ernie.  He has long and frequent conversations with Jerry that he really looks forward to.  And we got a call from his god-daughter, Britt, last night that put him in a great mood. Thanks Britt!






Union Station

We thought about visiting the Harry Truman home, as suggested by our friend Ron, but when we looked it up, the home was closed.  Perhaps it will open as weather gets better.  So, we decided to hit Union Station -- an easy 10 minute drive.  They had an IMAX-like Extreme Screen Theater that was playing "Tornado Alley" (which we were both excited about) and we also thought we'd take in the DaVinci exhibition.  Well it was a bust because I could not get myself out the door in time for the movie and the exhibition had NO ORIGINALS.  It  was all reproductions of artwork, weapons, and other inventions.  Some of the art looked like holograms.  There were also reproductions of his inventions that were hands-on, but I only found them mildly interesting. The kids who were there ate that stuff up, but we were bummed.




Care Package

Fred went down to the leasing office on Wednesday to pick up our forwarded mail, per usu, and came back up with our normal envelope PLUS a really heavy box.  Naturally, he thought I had been working on my retail therapy.  I have no idea why his mind would go there, ha, ha.  Anyhow, sure it was my handy work, he started to open it without reading who it was from and was baffled as he pulled out trashy magazines (US), intelligent magazines (Discovery), and the fashion bible (In Style).  Then came the books:  Shocking Secrets of American History,  Brain Games, New Treehouses of the World,  and my favorite, Find Momo, a book of landscapes, streetscapes and interior photographs that also has a very inconspicuous placement of Momo the border collie in each shot.  Hours of entertainment there!  The package also had a jig-saw puzzle, a face mask, hair mask, candy, artwork from 6-year-old Ava, a special card from 18-year-old Sydney and a lovely card from all.  This fabulousness was from the Stinton's.  Jerilyn -- you completely hit it out of the park ... you rock!




Brush Creek - On a Good Day
The weather has been picking up.  It was pretty but with very cold winds that made a daily walk a very brisk and not always pleasant affair.  The wind has turned my hair to straw for sure.  Well, we finally had a nice day with a high about 72 - no wind chill.  We skipped on down to Brush Creek at about 4:30 in the afternoon and enjoyed about an hour and a half outdoors.  I took a boatload of pictures below.  Indulge me, please.




Goose eating at the Brush Creek entrance closest to us (about a 10-minute walk from our apartment).





Mallard couple under the JC Nichols Pkwy Bridge.  The male (on the right) swam at turbo speed to the female when he saw us approaching.  So cute. So protective.

Not the best shot, but this is the view towards Country Club Plaza from the Volker Fountain.  We are at the end and just above Country Club Plaza.

View of Nelson-Atkins Museum of Art from the Volker Fountain.  We visited Nelson-Atkins when we came for Fred's evaluation in September.  Now THAT'S a museum!

The back side of Volker Fountain has a waterfall and this is the view of it from the Nelson-Atkins side of Brush Creek.  Somebody had written "Would you DRINK from it?" using only dirt.  Had to get a shot of that  ... and my answer, based on the smell alone, is NO.





Standing in front of a huge apartment complex (Fountain View at the Plaza) near UMKC (University of Missouri - Kansas City).   This is the view as we are headed back (a ways) to our apartment.



Back home...

So meanwhile, back home we had a termite scare that my brother-in-law talked me off the ledge about.  Thanks for that one, Bret.  Our good friends, Bita and Lawrence, have walked our dogs for us.  Lawrence starts Fred's motorcycles every week and also fixed a leak in one of the bikes for Fred.  You guys have gone above and beyond and there are not enough "thank you's" in the world to express our gratitude.

My friend, Lisa was picking her daughter Savanna up from her job at the Piloxing Studio and they decided to pop by the house to say "hi" to Angie and the dogs.  But, nobody was home, so they snapped some pictures for us.  These pictures just made us pine for that old craftsman home and those crazy Bumpus' dogs in beautiful downtown Burbank.

And if I wasn't especially missing my boy Tank enough already, I heard the cries and complaining of what I thought was a husky while we were heading out of the lab at the hospital this week.  I had to track him down and found a giant malamute who looked like a fluffier and larger version of my baby.

My boy (left).  I texted my friend, Susan, that I heard this gorgeous boy (right) complaining and I think I leaked a little breast milk. [winky face]

So now what?

So now we live life.  And we wait.  To be honest, I was starting to have fear.  Big fear.  I got it in my head that something had gone horribly wrong.  Human error?  We know there was some kind of a screw up with Fred's social security number that had been fixed.  Had someone erroneously checked some box that said he was not active?  That he was not local? We were told when we arrived that Fred was at the top of the list.  That we were looking at about 2 weeks to a month -- all based on KUMed's past experience -- nothing etched in stone, as nobody has a crystal ball.  It has been two hospitalizations and 6 weeks to the day and no offers.  I spoke to Fred's liver transplant coordinator yesterday.  I had to delicately ask about the possibility of an error.  She assured us both that Fred was active and local.  She let me know that they had had a "dry spell" when we first arrived.  Then, they had some really sick people in ICU whose condition had put them near death and put their MELD scores above Fred's.  The hospital has had recently performed several transplants and she confirmed Fred was back to #1 on the list.  As soon as a liver becomes available in this region that is his blood type and his size, he will get a offer.  We feel relieved and continue to have faith.

Week Four and Holding

Fred, hanging with Mark Twain in the Library District  - Downtown Kansas City.

This would not have happened in LA.

Rough Night Home

It was a rough night home from the hospital.  Apparently, our maintenance man had flipped the fuse to fix the ice-maker and it stayed in the off position.  I did not come home -- spent every night in the hospital with Fred, so I had no idea.  We came home to a stinky fridge and no ice for Fred.  Cleaning a fridge and running out for ice were not what I felt like doing  -- at all.  We reported it to the leasing office and Amy and Vanessa had Kimberly (housekeeping) come by with ice and to help clean the fridge.  Then these sweeties went out and got us a card and a gift card to replenish our losses.  I will continue to say it.  We have been so blessed by the kindness of others.  A big thank you to our 45 Madison Family!

Off-gassing?

Fred is feeling so much better.  Yay!  Me, I have some lupus-like headaches and fatigue.  It makes me wonder if the VOC’s from new carpet in the apartment could be the culprit.  We’ve been here a month (already) and we have not been able to air the place out very well due to the weather.  I feel like it is causing me some inflammation and I am really hoping this is not a precursor to a flare up.  Also hoping it has not contributed to Fred’s incidents.  We are locked into a lease, but did ask if there were any apartments here without carpet.  The answer on that one is “negative.” So, we ordered an air purifier from Amazon and I’m giddy like it’s Christmas.  It should be here today.

MOPACA 2016 – When in Rome…

The MOPACA (Missouri Alpaca Owners and Breeders Association) Alpaca Show was just this last Friday through Sunday.  It was held at the American Royal Hale Arena – a little more than three miles from here.   I can’t remember the last time I made it to an Alpaca Show (try never) so we had to check it out.  We trotted on down to find a small arena housing alpaca ranchers with their make-shift alpaca stalls, a judging arena with ribbons based on fleece and conformation, and some vendors selling woven goods.  Who knew?

The closest alpaca farm listed on the MOPACA website is in Indpendence, MO – about 15 miles away, so it isn’t like we see these beautiful creatures all over the place.  The show had the Suri alpaca (which have dread locks reminding me of a komondor dog) and the Huacaya alpaca (which are like fluffy little camel/llamas).  The animals are quite valuable as they produce a large quantity of fleece which is softer and warmer than sheep’s wool.  Plus, it doesn’t have lanolin so it is considered hypoallergenic.  These guys were the sweetest, cutest things EVER.  Baby left with a new sweater, so the adventure had a double pay-off.

“Finder’s Keepers”

That’s the name of Stephen King’s new book.  It’s on the best seller’s list and Fred decided it’s the next book he has to read.  Why go to the same old library to check out a book?  We hit the Central Library in the Library District of downtown Kansas City, as it came highly recommended by the local librarian.  Built in 1895, this is a beautiful and historic building with a film vault in the basement that has been converted to a theater and a small garden on the roof. 

The highlight was an exhibit, Chasing Weather, that just opened Saturday.  It is a small collection of 17 of photographer and storm chaser  Steven Locke’s best shots along with Caryn Mirriam-Goldberg’s poems about wild weather.  Beautiful.

Side note:  Turned out the Central Library did not carry Fred’s book.  We had to head from there to the local library.  And ironically, once we got the book home, Fred discovered it was the second in a trilogy, so he had to turnaround and head back to the local library to find the first one.  They are transferring it over – hopefully today.  Ha!

John’s Big Deck

We arrived at the library a little early.  It was really too windy to hang around outside and wait for them to let us in so we spotted this place across the street.  We ducked in for a snack that was sub par on a deck that was meh.  All I had was some tater tots and I could not keep them down.  I don’t know why  I am surprised.  It’s a tale as old as time:  if someone broadcasts a big deck, well it’s guaranteed to be unimpressive. 

Signing off for now.  Ending with the hope that this will be Fred’s big week.