“We have a plan. Let’s not deviate from the plan.”

Those encouraging words we heard at clinic yesterday keep ringing in my ears.   


Fred couldn’t sleep last night.  I finally dozed off at 1:00am and then woke up at 3:00am and knew he didn’t feel well.  I asked what was up and he said he felt like his stomach was lead and then he bolted for the bathroom.  He was suddenly and violently ill for the next two hours.  The vomiting ceased at 5:30am but tummy troubles continued, accompanied by a fever.

The fever hovered around 100.8.  We pushed fluids, trying to keep him hydrated and his doctor agreed on fluids and watching the fever.  Then he started having problems with balance, slurring words, flapping hands where he could not even text, and his fever jumped, so we texted the doctor that we were headed in to the ER.  Fever was 102.8 at triage and they took him back right away.  He was very weak and actually needed help to the bed.

We have only been told that initial tests show systemic inflammation and stress to his organs.  They are running more tests and will definitely be admitting him.  Poor guy.

We know his is in good hands here at KUMed and we pray for God to guide the fine caregivers and physicians to make wise decisions and give him the best care possible leading him to a successful transplant.  We pray for strength, courage, and grace under pressure while we are reminded once again to trust in His plan.

One of our many blessings is the support we have in all of you.  Thank you.  I will post updates under this blog as I find out more.

First Clinic Appointment

Monday’s Clinic Appointment.  Glad we were in the dark.

So, I wrote this last night and then around 3am Fred got sick again and things changed.  Fred was happy with this, so I am going to go ahead and post it to let you know about yesterday's visit.  We are in the hospital ER floor right now.  Will update in a few.

Fred had his first routine liver clinic appointment at KUMed on Monday.  His clinic appointments back home usually involve a lab draw in the morning, a run-through of current medications and vitals, a chat with his transplant coordinator, Kevin (love him) and a visit from the hepatologist managing his case (especially love Dr. Han and Dr. Saab).  It ends with a plan – which is usually “stay the course.”

I know I mentioned before that we knew his AFPs (Alpha-Fetoprotein [tumor markers] in his bloodwork) had been rising dramatically for months.  I think normal is something like <40 and he was soaring over 1000.  We had worried for almost a year as they kept rising with every blood draw – indicating his cancer was revving up.  But MRI’s could not pinpoint an area of concern (visible tumor) so they could not “treat” it.  We were very …  happy (?)… when they finally discovered a new tumor inside the liver and could treat it with Radio Frequency Ablation (RFA).  Fred had the procedure on 2/25/16 and we were told by UCLA it was a “success.” 

What we didn’t know was …  Fred’s RFA was a “success” because they had good margins treating the entire area of concern.  He had no bleeding. No complications.  MRI immediately post procedure looked good.

What we didn’t know was …  his new (and fabulous) doctor at KUMed had ordered another AFP test this last blood draw (last Wednesday). 

What we didn’t know was … if this AFP test came back as levels still soaring up around 1000 or higher Fred would no longer be considered by KUMed as a candidate for this liver transplant – as it would be an indication that the area of concern inside the liver was not the cause of the rising AFPs.  (Rather, it would be an indication that the cancer revving up was likely outside the liver.) 

What we didn’t know was  … this labwork/clinic appointment was providing the doctor with pivotal information. 

Thank God we had no idea.  I mean it.  Thank you, God!   --  as we (me,  the highest strung person on the planet)  -- have enough to worry about.

What happened was … Fred’s AFPs WERE ASTONISHINGLY LOW GIVEN TIMING OF TREATMENT – 76.5!!! Yippee! 

We were told the good news  -- that they were quickly trending down – an indication that the cancer that was revving up was inside the liver and had been treated successfully.  After confirming that the labs deem Fred to still be a good candidate for transplant, we were told the alternate scenario. (Cue the music:   dum    dum    DUM!)    Well played Dr. Gilroy!  

This visit … ended instead with the good doctor saying: “We have a plan [transplant].  Let’s not deviate from the plan.”

Praise the Lord!   

Happy Easter from Kansas City

Happy Easter!

Just a quick little post to say all is well, but not much to report.  Fred is feeling pretty good and I’m extremely thankful for that and the continued support we receive from our friends and family.   

We woke to heavy snow, which turned to rain by 11:30 when we went to Easter service at a small local church around the corner.  By 1:00 we were off to brunch with the sun shining, but still about 40 degrees out.  The high comes around 6pm!  The weather here is insane and all over the map. Quickly. 

We have settled into a routine where the week days are primarily spent in the apartment.  I work.  If the weather permits, Fred takes a walk to grab a newspaper at the local Kwick-E-Mart, reads, naps when tired, and catches up on TV.  We eat well with me cooking all the time and I occasionally call down to the leasing office to see if the gals are interested in what’s on the lunch menu that day.  We try and hit the fitness center a few times a week for light cardio and weights to keep somewhat in shape (although not like when I am teaching).    We tried a local vegan restaurant in the basement of a Unitarian Church.  Fred liked it.  Yay!  I was excited beyond belief and would eat there every day if I could.  Ginger mushroom street tacos with eggplant and fermented cabbage anybody?  (Oh, how Fred indulges me!)

Another Museum!

So, this weekend I indulged Fred and we checked out the National World War I Museum and Memorial.  Not my thing at all.  I am not a history buff and I hate war. Period.  But Fred, on the other hand… well this is right up his alley.  He is a history fiend.



We took an elevator up the 217-foot Liberty Memorial and then walked 45 steps to the cold and windy observation tower -- for a spectacular view of downtown.

It rained all morning, which was fine by us as we were in the fitness center.  By the time we showered and were out the door, it was only windy and cold.  Huge bonus that it wasn't raining. 

The museum has incredibly comprehensive artifacts from the first World War with all nationalities represented.  The exhibitions ranged from weapons, to uniforms, to documents, a series of trench recreations … something for everybody.  Even me.   

That's right.  He found the ONE motorcycle in the museum.

Business as Usual

Fred has a routine clinic appointment tomorrow.  Beyond that it will be business as usual until we get the call.  I have to mention that this whole experience is surreal.  We are trying to keep a sense of normalcy while we just wait.  And while we wait, we do not lose sight of the circumstances in which a liver becomes available.  We fully realize it comes in the midst of another family's tragedy and that brings up so many mixed emotions.  All in God's timing.

A Look at Kansas City

Room

Well, some of you may have missed my updates about Fred’s fever and hospital stay. I apologize.  That is because I posted them as things unfolded; however, I posted as comments under the same blog.  It just seemed easier as it fell under the same topic. 


After a barrage of tests and a four-day stint in the hospital Fred was really glad to be back at the apartment Tuesday afternoon.   He was not 100% when he came home, but some tasty  mild food and decent rest brought him back to his ol’ self.  Meanwhile, I threw myself into work and the weather took a bit of a turn, so that meant many hours in the apartment.  We had recently watched the movie Room and this prompted Fred  to refer to the tiny (but fabulous) apartment as "room."    At bedtime it was "Goodnight couch. Goodnight bar stool #1, etc."  Next thing I know, we are both doing it!  It had been a long week and I promised the weekend would be all about us.   By Saturday we were both ready to GET OUT.  So, that's exactly what we did. (And thanks to Sheri for some great suggestions.)

 

 

Entertainment

Fred's ID and a copy of our lease satisfied the requirements for a library card. With full access to all sorts of entertainment we strolled around looking at some books but decided to wait until he's done with "Killing Patton."  Instead we checked out DVDs: a Guy Ritchie movie and a comedy and a few CDs:  Jimmy Cliff and Ziggy Marley (to take a break from the local stations in the car).  This card will also give Fred on-line access to media resources during recovery! 


We found a nearby AMC theater, cashed in some gifties we had leftover from Christmas – and just happened to bring -- and saw the movie Deadpool  Saturday afternoon. Good fun and the quintessential "Fred Flick." The weather had been cold but we were surprised when we came out of the theater complex and it was snowing.  The snow melted when it hit the ground and we got even more snow late in the evening. All gone by morning.

  

Sunday we had a yummo brunch at a local bistro a block away from Brush Creek. We decided to walk off the food and took a fffreezing stroll down to the creek.  Brush Creek is a 10.5-mile-long stream that runs from Johnson County, Kansas, through Jackson County, Missouri.  We intercepted it at Country Club Plaza which is a gorgeous shopping district built on the banks of the creek.   No geese.  No joggers.  There was only one other couple walking their dog out there during our stroll … and THIS couple didn’t stay long.  With any luck we can revisit on a warmer day.

 

On to the Kemper Museum of Contemporary Art.  It is walking distance from our apartment, but we learned our lesson at the creek so we drove.  The Kemper is “Missouri’s largest contemporary museum”  -- which leads one to believe there are not many contemporary museums here.  The building itself has interesting architectural bones and the interior was lovely (we thoroughly enjoyed it).  But it was not large.    The temporary exhibitions included a giant room filled with mixed-media pieces that somehow worked ceramics into the art.   Other exhibitions showed off oil on canvas pieces from their permanent collection.  But the Cut and Paste exhibition of collage techniques was super cool and probably my favorite.  Colorful, painstakingly intricate, and really interesting.

Put a Bow On It
So how to end a fabulous weekend?  Well I'd love to say it ended with a phone call from the  Transplant Team to come on down, but it didn't.  We wrapped  it all up at the apartment fitness center for a little cardio and strength training.   And the final call we got last night was the next-best-thing.  We face-timed with Angie and our three dogs!  It was so good to see them happy and healthy.  They didn't have a clue but it warmed our hearts.  Thank you Angie and thanks to everyone for all of your love and your concern and for your comments on the posts.  We enjoy seeing them, but may not always respond.


Also special "thank you" to our friends who have called to cheer Fred on.  You continue to lift his spirits.  And Jerry Albus!  --  he was especially and delightedly surprised to hear your voice.  I'm so glad you two talkers have continued your friendship.

As for me, thanks to this bunch of friends who take my classes .  Your continued uplifting cheer does me good.  I love how hard you are working out without me.  Such an inspiration.  And I love your shiny little post-workout faces. You have no idea how much I wish I was there.

And to those who have called -- especially my sister, Sheri -- you are my rocks.  I love you!


Stay tuned...






 

 

Speed Bump

Fred got a couple of calls yesterday that were good for his spirits.  First, our friend's young daughter called specifically to cheer him up and ease his boredom.  They had a couple of good laughs and her mom even chimed in. Well done, Savanna and Lisa! Then, later in the evening our Burbank neighbor and friend, Grant, called to check in and chat.  Two old guys talkin' about the weather . . .  seriously. Fred was so genuinely glad to hear from you, Grant.  Made him feel like we were back home.




Well, these calls made me think I needed to post an update but it seemed there really was not much going on.  Yesterday, my plan for today was to work most of the day and then blog tomorrow or Sunday.   Well, the best laid plans...

We are presently at the ER at KUMed.  They are running tests and say they will likely admit Fred to the hospital while they try and figure out what is going on.





After a few days of intestinal trouble and a bit of a cough with some phlegm, Fred started to run a fever Wednesday night. It climbed a little yesterday but spiked this morning at 100.9.  We called in to his transplant coordinator as soon as clinic opened. She told us to head to the ER and she would let them know Fred was on his way.  When we arrived, they brought Fred to a room right away and discovered the fever had already climbed to 101.8.





He seems to be quite popular with lots of traffic coming in and out of the room.  So far they are not quite sure what is going on but they are running a bunch of tests.  Blood tests: CBC, lactic acid for sepsis,  and tests to check his liver function, blood culture to be sure no blood infection, ekg, abdominal CT to rule out a cyst.  He is dehydrated and bummed but is in good hands.





We are praying for a positive and speedy resolution so he is in top shape when he gets a his new liver.



Thank you all for your caring and continued support.  I will update when I know more.

Settling In

The view out our car window driving through Kansas was the same for miles.

We are in our apartment in Kansas City, MO (KCMO) settling in nicely and have been blessed so far.  Today, it was really windy and clouding up for possible rain, but we could not have asked for better weather (over potentially treacherous stretches) during our drive.  And for all you "nay-sayers" -- the car also did really well.  Fred had some leg/ankle/foot swelling from sitting so long, but all around he managed and was peppy today after a couple of good night's sleep. 



The apartment is lacking our furry family, but it is really nice, quiet, secure, close to shops, restaurants, and most importantly  only a little more than a mile from the hospital.  The team at our apartment complex are the best.  They worked like mad to have it furnished and clean, with linens, cable and utilities ready for us.  They even had the dining room table set, as though they were staging it.  Adorable!  The manger, Amy, closes the office at 6pm, but volunteered to stay as late as necessary to get us in by that Friday night.  Thank goodness we did not have to put her out, but the offer eased our minds for sure.

I had planned on bringing our Vitamix and juicer, but there was not room for an extra book of matches, so those stayed at home.  (Vitamix? /Shoes? ... Vitamix? ...  Shoes? -- shoes won!) We did some shopping at the local Walmart and Whole Foods, purchased an inexpensive juicer, filled the fridge with goodies and have found a place for everything.


Outside our apartment with Aunt Jill.

We had some visitors already.  My Aunt Jill from Oklahoma drove up with her friend Mary on Friday and stayed with relatives in Paola, Kansas, which is about 45 minutes away. The plan was to be our "safety net" just in case we couldn't get into KCMO in time to occupy our apartment on Friday.  Instead they were able to pop by on Saturday, take a look around the apartment and breathe a sigh of relief that we were not in a sketchy area and had done well.  She followed up her inspection by taking us to lunch at Country Club Plaza.  (Thanks Aunt Jill!)

Meanwhile, back home, we know everything and everyone is cared for by loving hands.  Angie, who is staying at the house and looking after Tank, Biff, and Pizmo,  pushed our morning call on Saturday because Biff was sacked out on her leg and she didn't want to disturb him.  Good call, Angie! Gotta love her for that one.  And Lawrence and Bita came by today to start Fred's vintage motorcycles and have some fun time in the yard with the pups.  They and sent us videos of the dogs (and even one of the Ariel firing up -- especially for Fred).  Thanks you guys!


Fred got the computer and internet all dialed in, so I will return to working remotely tomorrow.  I got the kitchen dialed in, so we can focus on staying healthy while we wait for "the call."



Thanks for all of your love and support.

"Active and Local"

We are on the road at present. Google Maps puts us under 6 hours to KC.  We have contacted KUMed and Fred is confirmed "Active and Local" on their transplant list. Yippee!

Flagstaff

Tuesday evening Fred was running a fever. Probably from trying to do too much! Thank you to my sister, Sheri, for the heads up. She hugged him goodbye and then pulled me aside to let me know. (You were spot on.)

Thank you to my friend Lisa for staying and helping me to get him to lay down and for pumping him with fluids while I kept going.

I was up till after 2am trying to wrap up a few things at the office.  Needless to say, we left a little late yesterday.

We made it to Flagstaff on 4 hours sleep. Our hotel let us know AFTER checking in that they were shutting off water for 4 hrs, so we switched hotels and slept well last night.

We are now headed out bright and early.  Amarillo here we come!

It's Official!

Celebrate!!!
Just a quick update:  It is official.  I just got a call from KUMed.  They received word from UNOS that the exception went through.  Fred has been listed with a MELD score of 31 and that puts him  at the top of their list for blood type O-positive.  They will activate him as soon as we are within 6 hours of the hospital!