Dry Run

May 10, 2012

Well, what to say…..actually now that we have had a couple of days to process this most recent episode in our “liver journey” we can see how fortunate we are to be under the care of the U of IA Hospitals! Yes, we were devastated and still feel “pangs” of, if only, but we also realize that these transplant surgeons are so on top of what is best for the patient.  We have learned since then that this particular liver was about 45% fatty and it would have made it extremely tricky to make the attachment to Charlie given his thrombosis in the portal vein and where the fatty portion was in the donor’s liver. (We certainly would not have wanted them to have started the surgery and then said, “This is not going to work and stopped the surgery!)

So Charlie is still number 1 – before he was released on Monday afternoon he had another CT scan and ultrasound to see the latest situation on the thrombosis.  Meg talked to them yesterday and they are having a meeting Friday morning with all doctors involved to review the latest findings and to decide if they are going to be starting him on coumadin (blood thinner.) 

 

Meg and Doug decided that this gave us a chance to “fine tune” our "when we get the call checklist.” Next time, they will not get on a plane until an incision is made and we “send” them a picture – where upon Doug will faint because his is quite squeamish and miss his plane! I learned that I am very comfortable with Meg’s partner, Jen, being in charge of the “pen” in communicating with “Charlie’s Health Update!” I also learned that Doug’s wife, Michelle, will keep us centered in prayer – when I called to let Doug know the call had come all I could do was cry and kind of loose it – Michelle got me calmed down!

So all is good – I had an early Mother’s Day with both kids. Doug flew home Tuesday afternoon. Meg and I had a fun day of antiquing down in Kalona, Iowa yesterday and she just left for Seattle.  An added bonus is that she needed another suitcase to get her “loot” home so we sent her home with one of ours filled with some of our winter clothes wrapped around treasures! (We certainly hope that we are not here long enough that we need those clothes back!)

We can’t begin to thank all of you for your prayers and for placing us on your prayer chains. We are continually humbled by all of you! We hope that another call will come to you soon – we did also learn that this actually can happen several times before the surgery happens. But, we will not dwell on that…..we will continue to enjoy spring in Iowa!

 Can you believe that it is almost May? And…..we have been here almost 4 months! Pretty soon we should be able to change our place of residence! Or, we can start checking on getting football tickets…..hmmm, all options!!!

Anyway, we had a wonderful time with Sam and Doug. They came in Thursday afternoon and left on Sunday – we sure hated to see them leave.  We did get to do a lot of fun things. The U of IA football team was having a workout in Kinnick Stadium and one gate was unlocked so we were able to get in  and Doug could show Sam a Big 10 Football stadium! ( We did get kicked out!)  Doug did his requisite shopping for Iowa Hawkeye clothes and got to visit some of his favorite places from when he attended school here.

Saturday morning we went outside of Iowa City to the Coralville Dam where there is the Devonian Fossil Gorge. Did you know that Iowa was once south of the equator and was actually like the Caribbean Sea today. As a result of the last 2 floods at the Coralville Spillway, the Devonian Fossil Gorge was exposed. These fossils are almost 200 million years older that the dinosaurs – Charlie says at least as old as he is! It is quite a fascinating place and we did see lots of fossils – Sam was a great explorer.

The weekend passed too fast and we sure wanted to get on the plane with them when they left!

We have been watching the following site – ustream.tv/decoraheagles – it is an eagle cam in Decorah, Iowa which is in northeast part of the state. Mom and Dad eagle have 3 babies that are about 3 weeks old. We have been watching them from the egg stage and it is so fascinating and informative. They have had millions of viewers from all over the world. (Now you know what keeps us busy!)

We have lots of pictures for you this time!

Tax Day Almost

Maybe a liver will come on Tax Day?????? – well, this last Tuesday, we did get a call to be on “stand- by”  (unbeknownst to us, Charlie had been moved to number 2 because of someone with a higher MELD score in his blood type)  – so the nurse called us and said the surgeon wanted to know how Charlie was feeling. They had a liver in his blood type, but they were not sure whether the number 1 guy would be able to stand the surgery. It seems that he was quite sick. The nurse said that she would call within two hours if they wanted Charlie to come. Alas, no call, we figure that the guy needed it faster than Charlie does. (For the record, I have always known that Charlie was pretty “laid back” but would you believe that after we got the “stand-by call” he promptly took a nap! I thought, only Charlie could do that, I, on the other hand, was getting things ready to go and mentally on “high alert!” For the time being, Charlie is number one again for his blood type!

We did take an overnight outing to Des Moines on Wednesday. I met girlfriends from high school and even grade school for lunch. There were 12 of us…it was a fun time. One of the other husbands came and Charlie had lunch with him at another place.  We then spent the rest of the day doing all the things that I like to see and do in Des Moines plus go to Costco and Trader Joes!!!!!!  We ate dinner at PFChangs! We have really been missing that place.

Thursday would have been my Mom’s 103^rd birthday so we visited her gravesite before leaving Des Moines. Then on the way back here, we stopped at various places from childhood - a park famous for their lilacs, a lake where we saw an eagle and its nest, and finally we stopped at Pella, which is a Dutch town with lots of beautiful tulips, buildings that make you think you were in Holland, and a yummy bakery! It was really nice to get away.

Boy did we have a storm last night – I had forgotten what the lightning and thunderstorms are like – wowsa – we were watching a video and knew it was bad out, but then the sirens started going off! We were in midst of a severe storm watch, but not a tornado. We certainly saw a fine display of lightning from our windows!

This Thursday, Doug and Sam are flying in for a long weekend and we are so excited! We are finding that not seeing the grandkids as often as we are use to has been  one of the hardest things for us!

So by for now – we are thinking of you all!

Hospital Trial Run

It has been a while so we thought that we would try to get a blog post off to you all. Tomorrow is our 3 month anniversary of being in Iowa. We truly thought that we would be heading back home sometime soon, wrong, even if Charlie would get the “call” today we are looking at 2 to 3 months from the call.

It is absolutely beautiful here now and really, for the most part, the temperatures have been in the 60’s and 70’s for the past month. Everything is blooming – it really is a lovely time to be in Iowa! The Iowans truly feel that winter was a no-show this year.

We thought that we would do a trial run to see what the hospital is like. Well, not really, but I did take Charlie to the ER on Friday night. He had been having quite a hard week with the hepatic encephalopathy which is common with cirrhosis patients and which needs to be watched carefully. So they admitted him and he was there until Monday late afternoon. His is fine now – they upped his medicine that helps to control the ammonia levels which contributes to the encephalopathy. We are very impressed with the University Hospitals and feel very confident that they will be handling the transplant procedure.

My brother’s 2 children were here with the grandchildren over the weekend and it was so fun to see them. I hadn’t seen my niece, Debbie, for about 4 years.

We just continue to fill our days with outings and enjoying this area. We are so excited – we got a call from Doug and he is coming April 19^th for a long weekend and bringing Sam, our oldest grandson.

Again, we want to thank you all of you for your continued prayers for us – that means a lot to us!

Hopefully, the next time you hear from us it will be to say – “We got the call” and we are on our way to the hospital!

Spring has Sprung or the Ides of March

March 15, 2012

Spring has sprung here, but a liver has not “sprung!” (Actually one liver was available for Charlie, but the nurse said that it was a very “sketchy” one and rejected by this whole 6 state region that we are in!) It is beautiful here – it has been in the 70’s all week and daffodils and crocuses are starting to bloom.  Some birds are building a nest in the eves of the balcony above us so it must be spring! The robins have come back and we only have fleeces, long underwear, sweaters, and turtlenecks to wear! (I did at the last minute throw in a few things for spring, but we thought that we would be on our way home pretty soon…. Also knowing, the Midwest, it could very well snow next week!

We have been here 10 weeks today, but then who is counting??? Charlie is doing very well – he feels good most of the time. He does have some days when he is really tired and just blah (don’t we all?) and we just take it easy then. He is keeping the exercise routine going. He is so good about that and I have been good about it also (notice that I didn’t say very good) – now if I would just quit stuffing my mouth, I might lose some weight!

John and Denise Hulsebus - friends from home - were here for a fun visit. John was born in Illinois and has cousins in IA. It was really fun showing them this area! We visited Herbert Hoover’s Presidential Library which is in West Branch about 10 miles from here and is very interesting. Then we toured around Kalona which is an Amish area where some people still use buggies to get around. Then the last day we toured the Amana Colonies – home of Amana Refrigeration (now Whirlpool.)  Of course, we showed them the University of Iowa Football stadium which is just across the street from the hospitals. Just think that if we are still here in the fall – Charlie could potentially watch a Big 10 football game from the hospital – forget I said that!

The University of IA basketball team did not make the NCAA, but they did go to the NIT. The first game was held here Tuesday night and we decided to go. It was a GREAT game especially since IA beat Dayton. Now Sunday IA plays Oregon in Eugene.

Pictures are of John and Denise at the famous Hamburg Inn #2, a buggy on a country road by Kalona, flowers in Amana, John, Denise, and Charlie in Amana, and then Charlie at the IA NIT game – we got there really early, but the place was later packed!

Well, I am off to the mall to see if I can find some spring clothes – Charlie said that should make it snow for sure! 

Mill Around Mill

February 23, 2012

There is a military command given in a joking manner when you are in place, ready to go and nothing is happening -- Mill Around, Mill. We are practicing it now!

Well, we have been here 7 weeks today and in our minds we are starting to think that we might be spending the summer here! Or maybe even football season…..I really do love the fall season in Iowa! It is not that we don’t like Iowa City (we do very much) or that we are not happy with our living arrangements (we are quite happy with them), or that we don’t realize how fortunate we are (we do feel very fortunate), but……..let’s get this “liver show” on the road!! Charlie has even started making up funny songs about livers! I will furnish it when it is done.

The great weather has continued – today we have had rain which at times was more like snow, but quickly melted upon hitting the ground. We could not have asked for a nicer winter.

We had a delightful visit with Meg and Lucy – she is the happiest child just skipping through the days. She loved the “apartment life” with the elevator, automatic door openers, looking all over the city from high up, etc. She can make everything a fun event. We visited parks, story time at the library, and the wonderful Children’s Museum that is here. It was really great having them here. The time flew by and we put them on the plane yesterday morning.

The pictures of Lucy are on the kids train tracks at City Park, the climbing wall at the museum, and then Dr. Lucy at the museum.

Time Marches On

February 11, 2012

It is a sunny, beautiful winter day in Iowa – very cold though! It is around 15 degrees, but the wind chill is making it MUCH colder!! It truly has been a very unusual winter here.

We had good news Thursday – we got a call from Julie, the transplant coordinator nurse, and she said that they had been “transplanting” and that Charlie is at the top of the list now for his blood type. So I have been getting my bag ready with “to do” things while he is in the hospital and Charlie is exercising even harder.

We have had some nice family times here. Last Thursday my brother and wife, who live in Oklahoma, came up for a long weekend and my nephew and family who live in Minneapolis also were here for the weekend. So we had a mini family reunion. It has been so nice seeing everyone.

Charlie got to be the caretaker this week. I had to have a tooth pulled - it had been on “watch” for a year. The dentist said that I won the tooth extraction of the week award and that that was not an award that you wanted to win. So eventually I will be getting an implant when we get back to CA.

This has turned out to be “movie week.” We have been to 3 movies which is more than we have probably been to in the last 3 years! We saw “Red Tails,” “War Horse,” and “Hugo.” I think that our favorite was “War Horse,”

Meg and Lucy are flying here next Saturday, the 18^th for 5 days. Lucy wanted to see Boppa! We are looking forward to seeing them.

We miss you all and are so thankful for all of you.