April - Iowa Donor Month

April – Iowa Donor Month – Donate Life

No, we haven’t run away, although we have been tempted! It has been much quieter around here since we last blogged – thank goodness! Charlie has been back on the transplant list for over a month, but no calls! We did meet with the transplant surgeon and the transplant coordinator nurse last week just to get caught up etc.  The surgeon reviewed Charlie’s latest scans and talked over the proposed transplant and we just generally quizzed him about several things. Charlie is number one for O’s – they said that they had transplanted several  A’s, but no O’s.  They are very surprised that we have been here this long waiting – no kidding!! We did feel good about the meeting and keep thinking soon, soon, soon!!

The problem that Charlie is having now is the fluid buildup (ascities) in the abdomen - about every two weeks he has been going in and having the fluid tapped off (paracentesis.) He has been having between 8 to 10 pounds taken off each time! Gee, he is having a baby every two weeks – the days preceding his getting this procedure done, he is very uncomfortable – kind of like a woman in the last month of pregnancy – his back hurts terribly! He feels so much better as soon as the procedure is done.  Another problem is that he is so tired all the time – he is exercising most every day, but he sure does take good naps every day. So the goal is just maintaining the status quo and continuing to exercise!

Charlie’s sister, Diane, came for a week in March. It was so good for Charlie to have her here and to get a little break from my intense scrutiny! Since Charlie was doing well and his sister was here, I went to Des Moines overnight for a get together with school friends! It was so GREAT to get away and we had such a good time playing cards, laughing, and sharing about old times.

Spring is having a hard time coming to Iowa – today was only 40 and I know it was much colder with the wind chill. There is a little green starting to show on lawns, but not a whole lot. The weather report does show it getting warmer and rain, which is very much needed. Got to get the ground ready for the corn crops!

It is donor month here, I am not sure if this is nationwide, but please do talk to friends and relatives about getting registered to be an organ donor!  As of April 5^th, 127,966 people are waiting for an organ transplant nationwide. 16,472 are waiting for livers, 102,566 for kidneys, 1,197 for pancreas, 2,205 for Kidney/Pancreas, 3,509 for a heart, 1,705 for a lung, 49 for heart/lung, and 263 for an intestine! It is truly a tragedy that so many organs are not allowed to be used! Please do help to get this message out – it is a matter of life and death for 127,966!

A big hi to all of you - we miss you!

Pictures for March Post

t

March – Spring is Coming - maybe

2013 is continuing to be a challenging year for Charlie – I remember now the liver nurse at home saying that liver patients can continue on a pretty even keel for quite a while and then wham, their health starts down a slippery slope! That is totally what has been happening to Charlie since I last blogged! Fortunately, in his case, it is a slanted line that he is moving down. The doctors said that many hit the edge of the cliff and just “fall straight down.”  He has been in the hospital part of every week – actually 18 days in February. As his body gets more fragile, it is getting harder and harder to keep medicines that he needs in balance, etc. If one area gets better than another is compromised! An example of that is abdomen swelling (ascites) – he had so much trouble with that back in CA and had to have the fluid tapped off several times until the right doses of diuretics. That was totally controlled until a couple of weeks ago when the doctors changed the dosages because they felt that it was causing him to get dehydrated and confused! It only took a couple of days and he had about 10 pounds of fluid again - no confusion though!  So how do you keep all of the side effects of this disease in check?????? That is what is going on….

Added to this, is that he is temporally on the “transplant inactive list” until he finishes a round of antibiotics. He just spent a week in the hospital when they found out that he had a strep infection which then caused many tests to be done – ultrasound of the liver, echocardiogram of the heart valves, endoscopy, and colonoscopy. All of these were to rule out that the strep might be causing problems in those areas especially it can cause lots of problems in the colon and cancer. All came out negative, but he cannot be placed back on the list until he finishes the antibiotics – I have thought of giving them to him in one day, but thought better not!!!!!  So we wait “patiently” – not!!

Meg and Lucy came the middle part of February for 5 days and that was wonderful.  Nurse Meg took care of Charlie and I played with Lucy! It worked out great, because Meg got a chance to really talk to the nurses and doctors about everything going on with Charlie. (He was in the hospital 2 of the days they were here.)

We have had several snows and more is coming this week! We actually love seeing it snow and wish that we would get more!

Charlie’s sister is coming for a week’s visit starting next Sunday. She visited us about a year ago here. I may try to get to Des Moines to visit school girlfriends if Charlie is doing OK.

In a couple of days we will have been gone from home for 14 months – something like this does help you realize what is really important and it is so NOT your possessions! What is really missed is family and friends not your house and all that is in it! 

I will try to add a couple of pictures separately - one of Charlie and Meg and then one of Lucy sitting on Thomas Jefferson's lap at the mall.

One Year and Counting

2013 – wow – a lot has happened this last month – the roller coaster continues! Right after we posted the last blog, actually the afternoon of the day of his 23^rd endoscopy, we got a call to come to the hospital as a standby for a possible transplant.  He was prepped, ready to go, and then in the middle of the night we were told that it was a “no go” for us.  It is such an emotional letdown when this happens, but we have also learned that when calls come we don’t get overly excited about it. We have decided that I will believe it when the big incision is made on him!

We had a fun Christmas with everyone – Meg, Jen, and Lucy came on the 18^th and we got a lot of snow on the 20^th. (Of course, I had to take Charlie to the ER the morning it was snowing and he spent 2 days in the hospital for the encephalopathy.) Doug and family came on the 23^rd. It was so special to all be together again. The cousins have so much fun together and we celebrated Lucy’s 5^th birthday and Nathan’s 4^th birthday. They got to play in the snow and just hang out together.  Doug and Meg both have such a love for Iowa City, having graduated from the University, so they always have their favorite places they want to visit.

Christmas Eve morning we got together for a brunch potluck with my brother and his family – they were all home. So Doug and Meg got to get together with their cousins and it had been quite a while since they had all seen each other. It was pretty wild with all of the little ones from the next generation.

Charlie did really well with all of the festivities over Christmas – of course, he had 8 extra people watching out for him! But….2013 did not start well – New Year’s night I had to call 911 for him – he was going into a coma with the hepatic encephalopathy. In the ER he was intubated and then spent 2 days in ICU and 4 days in a regular room. His ammonia level had skyrocketed to 297 (normal is 30 to 40) and a multitude of tests did not show anything….the only thing the doctors could come up with, besides the fact that he has liver disease, is the same old problem of trying to get the medicine for the encephalopathy adjusted for him. Not enough causes confusion and too much causes confusion and this can change daily! I was ready to ask them if they would keep him there until a liver comes! The nurses all love him and his “quirky humor” and they would take great care of him!

Also, during this time we found out that he was temporarily on the “inactive transplant list” – the hits kept coming there for a while. However, after several tests, this has all been resolved and he is back on the active list! Hallelujah – now we have 3 main goals – 1. Get Charlie to gain some weight (I sure wish I could give him some of mine) he only weighs 175, 2. Keep him exercising, and 3. Keep him rested! He came home from the hospital one very weak frail guy!

Some fun news – we have a new grandchild – an apricot, fluffball, labradoodle! Doug and his family got this little one just 2 weeks ago today. His name is Snickers and he is adorable! We have been doing Facetime with them and just love watching him bounce around!

We do have a new computer so we will see if we can figure out how to get some pictures in this blog entry.

It has been pretty mild here except for that one snow, but the next couple of days are going to be very cold (zero degrees) and possibly snow tomorrow – we sure hope so! Actually tonight it is suppose to be 6 below zero and windy!!

We miss you all!

Merry Christmas and Hapy New Year

Merry Christmas from Iowa City

Never in our wildest dreams did we imagine that we would be spending Christmas in Iowa and, as it stands right now,  we will probably see the start of spring here!! No, there has not been a transplant yet for Charlie, in fact, we haven’t even had a “standby call” since September. 

We decided that the blog will be our Christmas letter since we left our Christmas card list, etc. back in Roseville – that was definitely not something that we thought that we needed to bring along with us last January!

We just had a very special visit with friends from Eastern Washington – Rose and Bob Gray. We call them our “travel friends” – we met them on trip to Russia in 2004 and since then have been so fortunate to be able to travel together over 6 times with them from Africa to Machu Picchu!  We had a fun time chatting about our travel adventures and planning ahead to trips that we all want to take in the future. It is always hard when people leave – we want to crawl into their suitcases!

We have not had any snow yet, but it has been down in the “teens” at night. Hopefully, we will get some once the families all get here. Meg and her family arrive on the 18^th and will be here until the 26^th and Doug and his family come on the 23^rd and will be here until the 28^th. It is going to be so great to all be together again. It was actually last year after Christmas when we were all together in Portland that we got the call from the doctors in Iowa that we needed to get to Iowa City!

Charlie has been feeling well the last month – mainly, he doesn’t have a lot of stamina which is to be expected. This Thursday he will have his 23^rd endoscopy and then on Friday a heart CT scan followed by an appointment with the heart doctor.

We have the apartment decorated with a 4 ½ foot Christmas tree and then a little table top one. Again, we did not think about bringing Christmas decorations so Meg had Lucy make us some for the tree and then I have added a few. We have some poinsettias around so the place is looking quite festive! Oh, we also strung lights out on our balcony! All we need is some snow……..

It has been quite a year and looking back on it we so realize how fortunate we are that Charlie has stayed in relatively stable health, to be under the care of fantastic doctors at the U of Iowa Hospitals, to be living in a great apartment in a LIVELY downtown setting, a loving family willing to make frequent trips to Iowa City bringing grandkids so we can get our “grandparent fix” , and last, but definitely not least, all of you supportive friends who have emailed, called, sent cards, and have kept us in prayer. It truly has made this year much easier along the way. Yes, we certainly do get discouraged and truly wonder if the “call” will ever come and periodically, one of us will say, “I want to go home!” or “I want to see the grand kids!”  But….2012 was good!

Last time we gave you an address, but we now have one at our apartment. It is: 

           201 S Linn #908 Iowa City, Iowa 52240

We will try to add some pictures and hopefully, will have an easier time than we did last time.

                                Merry Christmas and Happy New Year

Pictures for Happy Thanksgiving Blog

Happy Thanksgiving (Almost)

Happy Thanksgiving (Almost)

 

Well, what can we say - uh, it is November and it is just over 7 weeks until Christmas!! And…..we will be here in Iowa for Christmas! In fact, we are looking at being here until February at least. You know we really just have to laugh about this – can you imagine the dust that has built up in our house? I certainly hope that I didn’t forget something in the refrigerator that has now grown a great case of mold on it! We may have a whole science experiment in the refrigerator!

October started off with a visit with our good friends, John and Denise Hulsebus, from home (they were here in March also) – they took the train from Roseville leaving on a Sunday and arriving in Mount Pleasant, IA (about an hour from here) on Tuesday around noon.  We had a great time with them and we feel like it is such a blessing when we get to see friends!

Mid-October I drove to Des Moines for the day to have lunch with my girl friends – there were about 12 of us there. Some of us have known each other for a very long time – I won’t say how long other than to say it has been since grade school! It was really fun. I got a chance also to visit Whole Foods which just opened there this fall and also the big mall.

October is birthday month for Charlie and I and we got the biggest surprise ever (no, not a liver, but the next best thing) – on the weekend between our two birthdays, Meg and Doug surprised us by flying here. We had been out shopping and upon arriving back at the apartment there they were!! Needless to say, we were stunned, thrilled, shocked  speechless  - the later being rather rare for me! They came on Friday and flew back home on Monday.  We still can’t believe it and it was such a fun weekend.  The morning before they came, we had both commented that we were feeling very weary of all of this and that we so missed the kids and their families! We are so thankful for them and they were so thrilled that they were able to pull it off without out us guessing – of course, they did not tell their children until the night before or we would have known!!

Charlie had his 22^nd endoscopy a couple of weeks ago – 4 varices banded and then last week had an ultrasound, lab work, and visit with the liver doctor. The result of all of this is that he is staying relatively stable and his fatigue etc is to be expected as the doctor said, “You have liver disease!”

October was truly a beautiful month here and we so enjoyed the beautiful trees and cool, crisp weather. My favorite time of the year has always been fall and Iowa truly has beautiful ones! But…winter is approaching, we have had several frosts.

As we said at the start, we will be here for Christmas (at least) and both families are coming here to be with us! Once we realized that there was no way we would be back home by then, the family all made plans to come and we are very thankful! Once they get here we hope that we will have snow!!

Several have wondered what our address is so here it is: P O Box 5278 Coralville, IA 52241.

We wish you all a Happy Thanksgiving – we are hoping that Charlie is in the hospital and that we are eating Thanksgiving dinner there!