Hello Again

All Good, But A Case of the Blues

I feel like I owe everyone an apology.

 

We have been good.  No calls, but no hospitalizations either.  However, I had completely withdrawn.  Not healthy.  We already felt isolated and somewhat alone out here and I think I have fed into it instead of nurturing my faith and a positive attitude.  Although we have had really lovely visits from my sister and then my Aunt Mary and Uncle Paul (details to follow), I have made absolutely no effort nor felt the desire to reach out to anyone. Not by phone, text, email or blog.  I feel I know what the question will be: “Have you heard anything?” and the answer is “Nothing.  Not a peep.” 

 

In comparison, my work has been easy as it is virtually anonymous thanks to email and remote access.  And although I work in a small and wonderful family office, we don’t get into the personal aspects of this experience.  It is safe that way and a great escape.

 

In the midst of all this, Fred had (and hence I have had) over a week of sleepless nights and a week of severe unsettling weather.  I missed two good friends’ birthdays, managed to catch a bad bug, feel like crap, and work up some sort of hideous abscess/infection on the side of my face.   I lost my second contract to teach as I will not be back in time for Summer Session.  That one sent me into a real spin and I feel I may be through with that part of my  life if we don’t make it home by September, so I can teach in the Fall.  Waa waa waa!

 

Well, I am not a quitter!  I have prayed and meditated and am ready to get over it!  Pitty party of 1 is hereby cancelling her reservation.

 

We Had More Visitors!

I need to shout it out BIG to my Aunt Mary and Uncle Paul!  They came out to visit almost a month ago.  It was so kind of them ... and for us, it was chicken soup for the soul. They arrived on a red-eye May 13^th and spent the first night in a hotel by the airport, but we got to hang from Saturday to Monday -- three whole days.  Mary is my mother’s sister and she was born in Kansas City, MO in a hospital only blocks from us.  We spent most of the time just visiting.  First, they came up for a look around the apartment and they came bearing gifts:  a Whole Foods gift card, some organic garlic nuggets, a tea towel from The Royal Botanical Gardens, a vegetarian cookbook, “River Cottage VEG” (to keep) and a favorite cookbook from their hippy-ish days, "Recipes for a Small Planet"  (to snag recipes from).  Thank you!  Then, we took a trip to the Plaza for lunch, a stroll around the fountains, and a look at the hospital where Aunt Mary was born.  Then a nappy and a meet up at their hotel for coffee and sweets.

 

Aunt Mary, who is a retired Episcopal Priest, had asked Saint Michael and All Angels Episcopal Church in Mission, Kansas, to add Fred to the church’s prayer list when we started on this adventure.   Mary also happened to be baptized in that church and so we joined them for the Pentecost Sunday service.  There was red everywhere, including many of the parishioners, and the service was just beautiful.  We continued with more food, more parks, an evening at the apartment with easy breezy miso dinner, and more great conversation.  They live in Northern California and most gatherings in our adult lives have been in a large family setting. 

Paul and Fred connected for the first time and we all really got to enjoy one another as adults.   Let’s face it, they got to see more of what I see in Fred. 

 

Highlights of May

I already mentioned the cold, the abscess, and the insomnia.  I got over the cold, found a clinic and a round of antibiotics for the infection on my face, and Fred finally got some Ambien.  (There was difficulty because Fred's doctor here moved on to Utah and he has not seen anyone else on the team, so nobody wanted to refill it.)   He seriously went over a week without sleep and with horrible itching.  Once he slept, I slept.  Aaahhhh!

 

Somewhere in the middle of being sick, we had our 27^th Wedding Anniversary!  Can you believe it?  Sometimes it feels like we only met yesterday, and others like it was a lifetime ago.  This is my half-life point:  married as many years as I was alive before we got married.  Well, needless to say, I rallied for some shopping, a movie, and a nice meal with some cool jazz at the restaurant, Chaz.   (OK, so it was an early dinner with half-priced appetizers in their lounge, but tasty food and a cool vibe nonetheless.)

 

Last month, we also drove out to see Swope Park on a whim.  We strolled through a trail in an old hickory forest, but not too deep or off the path because baby happened to have on her snazzy silver sneakers and the trail was all wet.   The bugs --   mosquitos and ticks and God-knows-what else -- are out, so I’m  not sure how much more of that we will be doing!

 

Speaking of wet, we were part of a pretty heavy 7-day torrent of thunderstorms that hit the midwest.  Kansas City metro area (where we are) was actually on high alert on one of those days and we got quite the storm.  There was a flash flood WARNING (sever conditions imminent) and a tornado WATCH (severe conditions favorable) in our area, with reportedly up to 70 mile gusts of wind.  It was quite the storm.  They evacuated vendors at Union Station (about 6 minutes away) and they evacuated the airport (about 25 minutes away, moving everyone to the garage.  I saved this link to an article: click here  https://weather.com/storms/severe/news/severe-weather-forecast-plains-may26-27

I also managed to capture a pretty good video of the lightning off the balcony one of the nights. 

 

This weekend, we went out to Lakeside Speedway, so Fred could soak up the sound of revving motorcycles and suck in the smell of gas and oil in the air.  Too bad this video does not have smell-o-vision.  Yuck! But he misses tinkering with vintage motorcycles so much that he really needed this.


The racetrack is about 25 minutes away.  We arrived what we thought was a little late only to discover the rain had wreaked havoc on the track and they were still prepping it.  Warm-ups had not even begun.  We got our tickets and came back to the apartment for a few hours.  When we returned to the raceway, we did a “test” call/text to verify we had phone service.  All good.  So, we enjoyed the races for a few hours when I noticed NO SERVICE on my phone.  Oh no!  Had we received a call?  This would be disaster.  We rushed back to our car to get as close to civilization as soon as possible.  As we did Fred’s phone blew up.  Thank goodness it was only our friends with some trouble starting Fred’s bikes at home.  Looks like we will not be venturing very far in the future – our little “test phone service” cannot be trusted.

 

Moving Forward With a Positive Attitude!

We went to the Liver Transplant Support Group meeting last Wednesday night at KU Med’s Transplant Center.  The group is open to pre- and post- transplant recipients and their families.  We happened to pick the bi-annual potluck meeting as our first.  It was super casual and less structured ...  perfect!  There were only post-transplant recipients at our meeting and what a warm and friendly group they are!  BUT, the group only meets 1x/month on the first Wednesday of the month  …  AND they don’t meet in July because of the 4^th of July Holiday.  Next meeting ... not until August!

 

On to the Cancer Survivor’s Park for a National Cancer Survivor’s Day rally yesterday.  We met the nicest woman who turned out to be a nurse and Director of Cancer Services from KU Med.  She was full of encouragement and turned us on to some other support resources that  we are checking out today.  Thank you, Cath! We also reached out for information on a Liver Transplant Mentor from the Gift of Life group.  I think we will be all dialed in for local support -- soon!

 

Meanwhile, it has been over 3 months since Fred received his MELD exception here.  While we were out here, UCLA let us know in April that they decided to re-list him.  We spoke with them last week and they told us they will be requesting a MELD 34 at the beginning of July.   [FYI, liver cancer patients cap at a MELD 34 exception (meaning this is the highest score they can ever get unless they medically receive a higher MELD which would mean they were extremely ill and had taken a horrible turn).  For most regions in the country, the chance of receiving a liver transplant with a MELD between 28-34 is pretty good.  However, back home, in Region 5 (California, Utah, and Arizona) – and also in New York – they have been transplanting in the UPPER 30s.  The rules/system changed last October and there is not enough information available yet how this new rule has affected the numbers in our region.  We are not sure if this MELD cap of 34 will EVER be “good enough” for "the call" back home or how long that wait could be.  Are they still transplanting in the high 30s?  Or has that changed?   All cancer MELD exceptions greater than 34 (unless they were medical MELDs) dropped to 34 in October and new cancer patients went on hold for 6 months.]  We have to believe we are in the right place that God brought us out here for a reason.  Time will tell. 


That said, UCLA spoke with Fred’s transplant coordinator out here.  Even though it supposedly will not change Fred’s place on the list here, KU says they are going to make the same request to increase his MELD to 34!!!  (After all, it is a fluid list and somebody could be listed here with a MELD greater than 31 before Fred receives his transplant.)  Fred has been so sick since 2013 and diagnosed with cancer since 2014.  We want to be sure he gets every advantage due to him as most cancer patients would agree --  you feel like a ticking time bomb!

 

Speaking of a ticking time bomb, we are told the re-transplant is a difficult case and they may be waiting for a more pristine liver for Fred.  Well, I cannot and have not ever been one to just sit on my hands, so we have also reached out to UNMC (Nebraska Medical Center).   They are in the same region as Kansas, but have a different Organ Procurement and Transplantation Network (liver procurement source network).  Although UNMC does not do as many transplants or have as large of a population as they do here, they did train some of the doctors at KU Med and have been doing transplants at their center longer than here, at KU Med.  They are “aggressive” in their approach (meaning they transplant risky and complicated cases), however, UNMC, has to review Fred’s records before deciding if they will even consider him and they are super busy.  They currently do not have openings for evaluations on their schedule until July.  It is a longshot, but, it is only a 3-hour drive and like KU Med, Nebraska Med has an excellent reputation.  So, my thought is we might as well dual list in this region (if possible) while we are incurring all of this hardship and expense of the relocation.

 

Also, in the meantime, I have created a vision board with the commitment for me to stay positive.  It contains images of the Organ Procurement and Transplantation Network for KU Med (Midwest Transplant Network), the local Organ Procurement Organization (Donate Life Kansas),  the Transplant Center at KU Med, the surgeons (Drs. Schmitt and Kumer)  -- and of course us and the home and dogs we long to return to.

 

Signing off, for now, with a promise of hope and more frequent posts – and a BIG thank you for your love, support, and prayers.