We've had a quiet week except for the past couple of days. Bill is having trouble swallowing again and has, we think, started to aspirate some. Since his immune system is compromised, this is more dangerous for him than "normal" systems. Stephanie wants to have another swallow study done to see what the problem may be. This has just come about the last 2 days. When she called this afternoon, Bill got very upset and said he would not do the study, it was just another ploy to keep him here, and they shouldn't have messed it up to start with. Of course there's no reasoning with him on it. I don't know if he will do the study when it is scheduled or not.

Other than that, the week has gone well. For some reason, I've had bouts of hives since Monday. They come and go. I usually only get them during tax season, and it seems like the stress has lessened since Bill is out of the hospital. But, it could be that my body says that it's more stressful since it's just me now. In any case, at least Benadryl takes care of the itching and stops the rash...as long as I take it as soon as the itching starts. It also starts in the same place, the knuckle of my index finger on my left hand.

Anyway, all for now. I'll let you know what he decides to do.

We've had a very quiet anniversary. We both slept well and got up earlier than we had been. We wanted to go to the pier but, since it was the last holiday of summer, it was going to cost $5 to park. Decided to go back tomorrow when everyone else had gone back to work and school.

We've managed to go to all of Bill's choices of restaurants. We went to Applebees for our anniversary dinner. A big thanks to Beacon Church for the gift card they sent for my birthday! We used it tonight and Bill got off really easy!

We tried to go shopping for each other, but couldn't decide what we wanted so came home. There's a computer game that he's been wanting and he may have to order it. I've been thinking about a tablet of some kind but can't decided which one. We've noticed that the display at Walmart now doesn't show the product, it puts out an empty box. Doesn't do much to help you decide if you can't actually SEE the product! I guess that's a sad commentary on our society today. It's too risky to put the products out because of the shoplifters.

So, we're going to try the pier in the morning, maybe go to the support group meeting tomorrow afternoon, and maybe look at some different stores for gifts. Of course we've told each other that we have what we want, just being together.

Bill is finally showing signs of improvement as far as his cold goes. The Benadryl and Musinex have been working. He's sleeping better at night and coughing less. Today his sinuses have not drained as much either.

His PT is going well and he has a consult for OT next week. When they called with that appointment he got rather upset thinking they were coming up with other ways to just keep us here forever. He had not had a mood swing like that since last week. Again just refusing to discuss it past a certain point worked and he finally worked himself out of it. I did remind him that this was his decision to have the transplant and that he agreed before that he would comply with all of the requirements. Sadly, he doesn't remember that, as he doesn't remember a lot of what has happened. Maybe that will come back but I doubt it.

Today was laundry day since there was no therapy and Bill's therapy was folding clothes. Didn't do a great job but it's his underclothes and socks. But, he gave it a good try. He then put the pillowcases on the pillows so he got a little work-out. We also took a couple of small walks to the mailbox and back. It was too hot to do much more than that, but he walked for the amount of time they wanted him to walk.

Since there's not much going on with us as far as day to day goes, I'm going to just throw some things out to you. Several people have asked if we knew how much everything has cost. We finally got a statement today that covers the transplant. I got online and looked up all of the statements and added them together. The grand total so far is $1,203,784.40. We have paid less than $1000 and do have a balance, but I'm waiting on some EOBs to see why Tri-care didn't pay on them. One good thing about the new healthcare law is that lifetime caps were lifted. Otherwise we would be looking at a huge balance. We are also fortunate to have the Tri-care. Between Medicare and Tricare we have paid very little. So, if you hear of a fundraiser for someone needing a transplant, most likely their insurance isn't going to cover everything. Give if you can.

I was also looking at the invoice for his medications. Our co-pay monthly for those is $36.02. Medicare and Tricare pay 100% for the anti-rejection meds. If we had to pay for the meds it would cost $908.93 per month for a yearly total of $10,907.16. That is more than a lot of people live on per year. Another reason to be thankful that we have the insurance coverage we have.

OK, off my soapbox about the cost of transplants. I hope everyone has a good Labor Day holiday. Monday we will celebrate our 22nd anniversary. Each anniversary is special, but this one is especially so. All for tonight!

Our week-end wasn't that great. We've both been stuffy and Bill has been coughing a very wet cough. I don't think it's anything to be overly concerned about. He's not running any fever and the cough comes and goes. It seems to be more linked to sinus drainage, but nothing is stopping the drainage.

We went to therapy this morning and he did well. He has gotten much steadier walking than he had been. He was rather grouchy this morning because I wouldn't let him eat anything until he had his "empty stomach" meds.

This afternoon he didn't want to stop eating! I had to make him stop to take his meds before we could have supper. He ate well and seems to feel better this evening now than he had all day.

We're back into the days when not much is going to be going on so don't be alarmed if there aren't any entries. I don't think you want to read about the TV shows we're watching!

What a nice week we've had! We didn't do too much Weds. or Thurs. Bill finally got a haircut which made him feel much better. We spent both afternoons and evenings with the kids and had a great time getting to know little William. He's a very happy baby.

It was a little hard to get used to someone being in the condo again and every time Bill gets up, I wake up. But that's been the norm for the last 5 years so nothing new. We've also gotten into the routine of meds and timing and finger sticks. He complains a lot about it, but accepts it.

Today was his evaluation by physical therapy and she was extremely pleased with him. She thinks it will only take 2 weeks, 3 days a week, to get him ready for the cardiac rehab. All of the girls were glad to see him and we were surprised to see one of his nurses there. She said she rotates between the hospital and therapy. Debbie, the therapist, did re-enforce the walker rules and the driving rules. They did put driving down as one of his goals. One of the things she had him try was a finger exercise. He couldn't do it and she said that will get his OT consult. Dr. Yip had just requested the PT consult. The OT will continue with his hand rehab. Now we just have to see about the speech therapy for cognition.

The kids left after his appointment and we've been in and out. Bought a few groceries and then went to Walmart. I had a signal light out and I managed to change it myself! Of course Bill was supervising! We've watched the baseball game and will get supper started before much longer. We have found that we are both ready for bed by 9:30 now so it doesn't take long after supper and dishes before we're nodding off.

Bill's 3 meal choices for when he was discharged and could eat was breakfast at Waffle House, lunch at Rosina's (a local Italian bistro) and a steak from Applebees. He had the lunch Wednesday and tomorrow morning we're going to Waffle House for breakfast. I'm not sure when we're going to Applebees, whenever he says it's time. The owner of Rosina's was sooo glad to see Bill. He said that if he had known where to bring it he would have sent us food while he was so sick. We also saw some folks at Mayo today. The leader of the support group saw him for the first time since he was in ICU and she burst into tears when she saw him. We also saw some LVAD patients. I had met some of them while he was in the hospital and he had met one but doesn't remember them. But, that's OK, he'll get to know them again!

We are now out of the "cone of concern" with Isaac. We'll probably get some rain so we may not go many places next week except for therapy. But, I have lots of things I can knit and Bill has lots of puzzle books to work so we'll stay occupied.

All for today. Have a great week-end!

Good report again--no rejection! And the Prednisone has been cut again which puts us 1 step closer to going home!

Bill was released about 9:30 this morning and we went straight to the beach. Walked on the pier for about an hour. Saw a school of dolphin swimming very close to shore and the fishermen were having a pretty good morning. After that we had lunch as a favorit seafood restaurant with Mary-Rose, Jack and little William. It was just as hard saying good-bye to some of the employees as I thought it would be. I at least made some pretty good friends while he was there and they will be missed. They were also a pretty good support group for me.

When we got back to the condo, just as it started to rain, everyone stayed there while I bought some groceries. Mary-Rose showed me how to use the blood glucose we need to monitor Bill's blood sugar. We don't have to give shots yet, just monitor for now. But, if it's trending up I'm to call Stephanie.

Bill did have a little bad time this afternoon. He got some paperwork from the cardiac rehab group and was not happen to see it. There was a questionaire to fill out and he couldn't understand why it had to be done again since it had been done when he had the LVAD. It didn't matter what we told him he wasn't having any of it, even going so far as to say that he knew he would be going back to the nursing home after that. Part of it was because he was starting to dry out and after a couple of cups of coffee he was back to himself. At least Mary saw that I wasn't exaggerating about the mood swings.

We've had dinner and have the kitchen cleaned and the kids just left. I think we are all tired. I still have to clean his wound and re-bandage it and then we will probably call it a night. It may be a Xanax night...for both of us! But, all in all a good day!

We're going out the same way we came in...arguing about meds! Bill did not get his Prograf and Cellcept before dinner this evening. The med nurse was not someone I was familiar with, and after 10 weeks I know most of them. When I questioned her she said they were either given before she came on or they weren't supposed to be given. I made her pull his paper chart and the order was written for them to be held this morning for the biopsy, but nothing was written for them to be re-started! She was going to call the nursing home dr. but I told her he wasn't following him for those meds and to call the transplant cardiologist on call and gave her the number. She got Dr. Hosenpud and said that I was concerned about the drugs not being restarted and he told her to restart them per the previous order for biopsy.

The thing that is really disturbing is that the nurse who wrote the order is one of Bill's regular nurses and this is the 4th biopsy he has had since he's been there. He got his Prograf before I left and she was going to check the timing on the Cellcept because she said he got it at 9. I told her he was supposed to get it before he ate so she was going to check on it.

The biopsy went well today. He used his walker instead of a wheelchair which impressed them. Of course we won't have the results until tomorrow afternoon. Hopefully the Prednisone will get cut another 5 mg which puts us a step closer to home. Dr. Yip asked about going home and I told him that Tina and I had talked about that before and December would put him 2 months out with no Prednisone if the taper schedule continued as it has been. He thought about it and did some calculating and agreed that it is do-able.
We would have to come back in February and then probably not until May and then he may be on a yearly schedule.

Bill has finished all of his therapy and I have discharge notes for PT and speech. I'm to give them to rehab at Mayo to continue outpatient with them. It's going to be bittersweet leaving tomorrow. There are a few people I'm truly going to miss and it will be hard to say good-bye to them. There are also a couple of other residents that we will miss.

On a happier note, we met our youngest grandchild today and he is a sweetie. He talked and laughed and played on Grandpa's blanket he knotted in therapy. He also took a ride in Grandpa's wheelchair. We're hoping to go to the beach tomorrow after we get out so that Bill can walk on the pier again and then have some lunch. The pier depends on the weather, 70% chance of rain so I don't know that we will get there.

All for now, I'll let you know the biopsy results tomorrow.