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!