Exit Plans to California

Well, we are starting to get some plans in place for heading home. As it stands now, we are flying home on June 21^st. Meg is flying here on the morning of the 20^th to help us get home. The next week, she, Jen, and Lucy are flying here to pick up our car and then have a road trip to CA.

After I posted the last blog, Charlie did spend a week in the hospital – I took him in for the encephalopathy and after taking a chest x-ray they found out that he had what they called a “hospital infection” or pneumonia. They figured that this was what had set off the confusion again. So he was on IV antibiotics all week.  He has been home almost a week and is doing well.  He has several doctor appointments along with procedures – endoscopy and paracentesis lined up before we leave.

We have decided not to do some traveling around here and that we had best get home and get settled there again. We are going to miss Iowa City – it really is a great place and was just listed in the “Top Ten University towns.” We have loved our apartment and its location, but it will certainly be nice to be home again and to be with all of you.

Last Sunday 3 of my girlfriends from Des Moines came up to visit and we had a fun lunch and enjoyed playing some cards. It has been such a plus to be able to get reacquainted with them!

Doug will be here for a couple of days next weekend on his way to Chicago on business.  I have big plans for him!! We have packed up many boxes that need to be mailed home and he can provide the muscles to help me get them mailed.

Boy have we been having the severe weather – tons of rain (we are in a flood warning) and it is so humid! Last year we did not have hardly any rain and now this one is so rainy that the farmers can not get into the fields to plant.

Looking out the window I see that the latest storm has passed by now on to the next one coming through.

Please keep us in your prayers for a safe trip home with Charlie.

Mary and Charlie

May 15^th - The Roller Coaster Ride has crashed!

Well, it has continued to be a rough ride since the last post and we had a meeting with the transplant team today (Charlie has been in the hospital since yesterday) and the bottom line is that they are NOT putting Charlie back on the transplant list! They feel that he would not make it through surgery. Meg wrote the following for me after she talked to the transplant surgeon – “With the combination of how he reacts to anesthesia and his cardiac problems they can’t risk doing the surgery. The surgery that he needs is quite a bit more complicated than an already complicated liver transplant due to the extensiveness of clots in his portal liver vein system. He would not be able to handle the complex parts of the surgery when he would need to have intense resuscitation.  And…while the transplant surgeon feels confident that he could perform the surgery/reattachment of the donor liver, the anesthesia team does not think it is likely that they can keep him alive during the process. They have determined the risk is too great.

The transplant surgeon assured us that they will facilitate coordinating care in locations where we will likely be – Roseville, Portland, and Seattle – so we will be able to have medical care in place at these locations. He also said that despite how grim it often feels, that he(Charlie) could live quite a while longer – even to the degree of it being something else that could be life-ending rather that the liver.

We are going to take our time in figuring out what we want to do and how Charlie wants to create this next phase of life and go from there. Right now, we are devastated and kind of in shock!

We probably won’t head home to CA until the end of June giving us some time to get out and do some things in the Midwest since we have been so closely tethered to Iowa City.

We continue to ask for your prayers as we start to adjust to this news and we are just very thankful for all of your thoughts and prayers over the last 17 months. We do know that God has a plan for us….

Once we get plans going we will post a blog!

Mary and Charlie

April 24th - "The Roller Coaster in Iowa"

April 24^th – “The roller coaster in Iowa”

This will be an update about the happenings of the last week and let us say there is never a dull moment. Last Wednesday morning we got a call to come in for a standby possible transplant – yes we thought we were at the top, but this list is a “fluid” one in that at any point in time someone with a higher meld score can move past you. So we waited most of the day and it turned out to be another “no-go!” Since he was already in the hospital they went ahead and did another paracentesis and 13 pounds were tapped off!

Now fast forward to Saturday evening, the 20^th, and we got another call that Charlie was the PRIMARY one and that they were not even getting a backup. So we were a little stunned, got the last items placed in the bag that stands ready, and headed to the hospital! The staff got all the things done that are pre-op protocols to get a person ready for a transplant and then we spent the night trying unsuccessfully to sleep! Surgery was scheduled to start at 8 on Sunday morning. Right before 8 the call came that transport was coming from surgery to get him – wow, this was really going to happen and the tears started flowing! We have spent so much time in the transplant unit that it was like a family gathering sending Charlie and I off.

We said our “see you later” etc. and I got settled in the waiting room. Then “all” started going downhill fast! I got a call from the surgeon to let me know that they were having some difficulty getting Charlie’s heart rate and blood pressure stabilized under anesthesia. He said that he would let me know shortly the latest. A little later he came out saying they could not get him stabilized and that I would need to make a decision on whether they should try to continue surgery considering it would be very risky and that he would be back out shortly! Well, needless to say, I was stunned and did not know what to do. Fortunately, the decision was not one that I had to make as he came back out and said that the decision had been made - they all had said STOP! Fortunately, no incision had been made, but he did have all “lines” in ready for action.

All I could do was cry – fortunately, Meg arrived soon after and Doug later that afternoon. We had all hit rock bottom! A couple of days out now we can see how fortunate Charlie was, because the doctors said that he would not have made it through surgery!

The whole team now is trying to figure out exactly what happened – they first thought it was severe aortic stenosis and ran all sorts of heart scans, etc. and, on Tuesday, Charlie had an angiogram. This showed that nothing had changed from the previous known moderate aortic stenosis. The cardiac surgeon said that there was nothing on any of the many tests performed over the last 2 days that would indicate that what happened in the operating room should have happened!!

The plan now is for the cardiac surgeon to meet with the anesthesiologist to hear exactly what happened in the OR and  Charlie is scheduled for a stress test May 1^st. Following this,  the whole team will meet to decide what happens next – hopefully, they will get Charlie back on the active transplant list which is the goal!

We came home last night after Charlie having another paracentesis  - we were all making bets on how much fluid would be tapped off! Charlie actually was the closest – 15.4 pounds!

What an absolute roller coaster of emotions we have been going through!  The kids are back home and now to get Charlie rested up from this whole ordeal. Today he has been absolutely exhausted!  We would so appreciate your prayers that the team can figure out exactly what caused the heart situation and that Charlie will be back on the list ASAP!

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

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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.