Much easier day today!

We tried to watch the home run derby last night, only made it to the end of the first round and didn't see who won the bat off! Both of us slept much better last night and felt more rested this morning.

Our first stop today was with the infectious disease doctor. Bill has to repeat the Hepatitis B shot. Apparently the ones he had from Memphis didn't take because his blood work did not sho any antibodies. Not a major problem and it can be done after we get home.

Since we had 3 hours to kill we came back to the hotel to do some research on medications and just rest. But on the way back our coordinator called and said there was a change in the schedule. Bill was supposed to have his treadmill test this afternoon, but the dr. decided that he wanted to have all of the other tests done first, especially his device check, so that has now been scheduled for Monday. And, our appointment with the nutritionist that was scheduled for next Tuesday was now scheduled for this afternoon. So, Bill could relax because he was really stressing over the treadmill.

We saw the nutritionist and she was very pleased that we were already following a basic healthy heart diet, especially low sodium. After that we saw our nurse practitioner and she was pleased with his overall health. His blood pressure was still low. The first time she took it he was laying down and it was 80/70 which is a very weird reading. The second time it was 80/60 standing. The strange thing is that most people with a pressure that low wouldn't be able to function, yet he's up walking around and talking.

We got back to the hotel about 4 and we've since had supper and got that cleaned up. We're going to try to stay up long enough to watch the All Star game, but don't know if that will happen. Tomorrow is heart cath day so it will be another long day with Bill laying flat for most of the day. Uncomfortable for him. At least I can get up and move around. May take my laptop with me tomorrow so I can update this earlier since I don't know just when he will get released. We will have to see how the morning goes.

Have a great night everyone! Try to stay cool if you're in the heat wave states (and most of you are)!

What a day!!! Up at 5:30 and at the clinic by 7 to start the testing. Labs, chest x-ray and ekg. Bill finally got to eat something then but was very weak. They took 15 tubes of blood, and since it was all fasting labs he didn't have anything in him to boost him up. We then went up to the floor for his pulmonary function test and they were able to get him in about an hour early. He got finished before I had to go to the caregiver class. We then met up just in time for his allergy tests and then could leave for an hour and half.

After a quick trip to McDonalds for lunch and the gas station for a fill-up it was back for an easier afternoon. We met with our coordinator Julie for about an hour and learned so much more than we had learned in Memphis. We were able to get in to see our social worker Elizabeth an hour earlier and that is a good thing since we were with her for nearly 2 hours! She also gave us some homework to do and a wealth of information. We are really on brain overload!

Got back to the hotel and made a grocery list and went shopping. We are both so tired that I don't know if either of us feels like cooking, but we also don't feel like going out. I did pick up some deli tuna salad and egg salad so maybe it will just be sandwiches tonight.

After listening to everything today, we are really disappointed that we went through the process in Memphis. We were not told most of the stuff we learned today about the process. And it seems that the information should be pretty standard at any center. For example no eating at buffets or salad bars after transplant because you don't know who handled the utensils before you and if they were sick or not. Or, no rare meat and unprocessed egg or dairy products, raw fish, etc. Memphis had told us none of this!

But, we will just chalk it up to experience and move on. Tomorrow brings the infectious disease dr and then the dreaded treadmill test, before seeing the nurse practitioner.

Oh yes, we told Julie that his blood pressure is staying very low and when she took it the highest she could get for a top number was 78! They have taken him off the Diovan to see if that is what was doing it.

So, all for tonight. Have a good night everyone!

I should have updated this a month ago! Mayo has said that they will list Bill so we are back in Jacksonville. Testing starts tomorrow and we have full days every day!

One of the drawbacks to being listed here is that we will have to relocate within 2 hours until a heart is available. Another option we have is to get the Heartmate II heart pump implanted. That would only mean a relocation for about 3 months. That surgery can also be scheduled so we would know just when we would have to be here. I have the information on short-term rental properties and after we talk to the transplant folks again and get some questions answered, we will make a decision on that. He could get the implant and still go on the transplant list and would be at the top of the list for awhile so that is still another option.

I'll try to update this daily after we get back to the hotel. I don't know if I'm going to bring my laptop to the clinic everyday. I may bring it on the day of the heart cath since we are pretty much in one place for several hours after the procedure. The other days we are moving around a lot between the clinic buildings.

So, continue to keep us in your thoughts and prayers. We have a long couple of weeks ahead of us!

Got excellent news today from the psychologist! She saw no signs of dementia from the testing that was done. She also doesn't think that he needs to be on some of medications so she is going to consult with the psychiatrist to see what she thinks. The thing that bothered her the most is that I was in the testing room with him the last time in Memphis. She said that that was entirely inappropriate. She wanted to know the name of the Dr. and where the test was administered. I don't know if she is planning on calling them or not.

We have to make 1 more trip to the clinic in the morning. They added a pulse ox monitor tonight while he is sleeping and we have to turn the device in in the morning. Then we will hit the road to come home. We are both ready to sleep in our own bed!

The drs. have said that they will contact us, probably next week, to let us know what is going to be the game plan. So, when we know something, I'll let everyone know.

Easier day today. Only 1 appointment and it was this morning so we had the rest of the day free. Today saw the pschiatrist and she's concerned that Bill has been on the Aricept and Namenda as long as he has. From what Dr. Salguerio has said it is because of his age and it's being used as a memory enhancer. She did agree that he had a major depressive episode in the past but she's concerned about the drugs.

Monday he see the psychologist for some tests and then he is finished and we'll head for home Tuesday.

Tomorrow Don and Shirley, Bill's sister and her husband are coming up from Brandon for lunch before heading home to Clearwater. It will be nice to visit with them for awhile.

Probably won't update anymore until after the appointment Monday. Have a good week-end and Happy Mother's Day to all the mothers reading this.

Whata long day! Started out with registration at about 6:30, followed by labs and then EKG and chest x-ray. We then had about a 2 hour break before we saw anyone from the transplant side. Saw 2 nurses and then spent an hour with Dr. Yip.

As always there is good news and bad news. The good news is that he was pleased with Bill's overall health and the medications he's on. He did add 1 new medicine and tweaked another one but made no other changes. Depending on the results of the psych evals tomorrow and Monday, he will decided if Bill will be listed for transplant, recommended for the heart pump which is the device that Dick Cheney has implanted, or just managed for heart failure. If he thinks that Bill would be a good candidate for transplant we would come back here in a month or so for some more extensive testing. Also, if he is listed, and he moves more toward the top of the list, we would have to spend several months here in Florida.

Now, for the bad news. Because Bill is O+ blood type, which is the most common, the waiting list for those hearts can be several years. Since he had been on the list for 2 years in Memphis, we already know it can be a long wait.

He did want Bill to try walking more to see if that helps his fatigue. Starting at 10 minutes twice a day. He said it wasn't the speed walked, or the distance walked, but the time walking. So, he's going to try that. This is also to try to build stamina because he wants to do a pulmonary treadmill test if we come back.

All in all we learned quite a bit that we hadn't been told before. The 3 drs we would see if he does get included in the program are pretty well known in the medical world. Dr. Yip is the head of the department, another one has written the textbook that all transplant drs. use and the other one came from the Cleveland Clinic which is one of the premier transplant centers in the nation. So he would be in excellent hands.

So, it was a really busy day and we are really tired. We've had an early dinner (I love crockpots!)and as soon as it gets dark we may hit the hay. We have to be back at 8 in the morning but that is the only appointment and then we may hit the beach and do some shopping.

I'll update everyone tomorrow!

It's a good thing I decided to call home and check messages! There was a call from Mayo changing Bill's 1st appointment time from 9:30 to 7:10! We would really have been late!

We drove to the clinic today. What a huge campus, but well marked and easy to get to. We'll see how it is in the morning when it will be shift change. We don't know when his other appointments are since the message said that we could pick up a new schedule at our first appointment.

After checking out the clinic today we drove on to Jacksonville Beach. Didn't go to the beach, just drove around and looked at the sights. Since we're supposed to have a lighter day Friday we're planning on going to the beach then. But, with the schedule changes, who knows what we'll do. Bill's sister Shirley and her husband Donald are coming up from Clearwater Saturday. She's judging a musical contest in Brandon tomorrow and Friday and will only be about 60 miles from here. So, before they go home, they're going to come here and meet us for lunch.

All for tonight. I'll post more tomorrow after we start seeing the doctors.