Saturday, September 29, 2012

We've had an up and down week. Bill's done well in rehab and on the treadmill, although his leg still bothers him. It bothered him at the house one day and, surprisingly it's not his left leg, but his right one. That puzzles me since the stroke affected his left side. But, he sees the physical therapist Monday so maybe she can figure something out.

He's been a little short tempered a couple of days and it's due to him not drinking enough again. So, I'm forcing liquids in and he's been better.

He finally showed some interest in his computer game this week although he's forgotten most of it and of course he doesn't have the book for it. But, at least he was showing some interest in something other than the TV.

Today was cleaning day and we (I) started to weed things out. My Goodness, we've accumulated a lot of stuff in the last year! Bill was able to help by gathering the trash in the bathroom and breaking down soda boxes. Doesn't sound like much, but for someone who has trouble using hands, it was a big accomplishment.

That's our week in a nutshell. We're going to watch at least part of the Cubs game tonight. Again, they're on the west coast and play late. Enjoy the rest of your week-end!

Tuesday, September 25, 2012

Today I added a new title to my resume! In addition to becoming a nurse, CNA, PT/OT/Speech Therapist, I am now a personal trainer! Bill was on the treadmill today and his leg cramped. As he got it stopped I got him off and over to a weight bench to sit. After a couple of minutes I had him stand and stretch it out before he got back on the treadmill. His leg has been doing that and the girls in rehab are aware of it. No one is sure if it's due to more activity or the stroke and he sees a Physical Therapist again Monday. Maybe she can figure it out.

He did well in rehab yesterday and worked for 1 1/2 hours instead of just an hour. I was talking to our friends from Gulf Breeze and didn't realize how long it had been until he came out! We all went to lunch and then John and Cindi had to go back to Mayo for an appointment. It was really good to see them again. They want us to stop there for the night on our way home. It will add about 2 hours to our 2nd day since we go a little out of our way. Of course, nothing says we can't take 3 days to come home instead of 2. But, that is still a little way off.

We didn't do much after going to the fitness center. It was a gorgeous day, cool and breezy so sat on the patio most of the afternoon. We even ate dinner out there tonight.

His next biopsy has already been scheduled for October 15. Hopefully everything will stay stable with the meds and we'll stay on track to come home. He's scheduled for rehab through December 3, but if we get cut loose before then, rehab will end.

All for tonight. I'm going to watch some more of the Cubs/Rockies game before turning in. I don't like when they play on the west coast, especially since we are on the east coast. The games start way too late for me!

Sunday, September 23, 2012

I hadn't realized that it had been so long since the last post! We had a very boring week, rehab on Weds. and Fri. and a fairly quiet week-end.

Saturday was laundry day and groceries and general picking up. Sunday was just a lazy day. Did do some shopping for some clothes for Bill. He has lost so much weight that none of his clothes fit. So, we got him some new stuff before he walks out of his pants!

This week looks to be quieter than last week since the only thing he has scheduled is rehab. But, some friends are back, at least for tomorrow, from Gulf Breeze, so we're hoping to see them. May also try to have lunch with another couple this week.

Other than this, there's not much happening here. The weather has been great and is supposed to be cooler this week. I'm ready for some good fall weather, although I don't think I'll see it this year either. I saw some pictures on Facebook this week of home and the cotton is ready. I do miss seeing those white fields, but I have not missed the defoliating!

Tuesday, September 18, 2012

Biopsy went well yesterday and got the results today. He's at 1A. He's still technically not rejecting the heart but it's not a perfect biopsy like the others have been. Stephanie said they treat this as no rejection and most transplants move back and forth between statuses. The only medicine change made was to take him off of the Prednisone. Also, his A1C for blood sugar was 5.8, which is better than most people so we don't have to keep track of that any more!

His swallow study was perfect with no issues at all. The therapist said that there is no reason to think that he will have any problems in the future, other than what all of us have at times. He does need to take smaller bites and drinks, but doesn't need to have the thickening added to thin liquids.

We went to the LVAD/Transplant luncheon today that was sponsored by the company that made LVAD that Bill had. The surgeon who did  Bill's LVAD implant was the speaker and he showed a clip of an implant that he said was actually one of the people in the room. Of course he didn't name names, but it was really interesting to see. We saw a lot of people we hadn't seen in a while and met a lot of new people.

We did get some really good news yesterday. I was talking to Dr. Yip before the biopsy and we were discussing time lines. We are going to be able to go home in November! BUT, we would have to come back in December for another biopsy, so I think we have decided to wait until December to come home. We would have to come back in February for a biopsy and then again the end of April/first part of May for the 1 year biopsy. We're both pretty excited about finally having an end date, even though it's not a set date yet. But, if the dates of the biopsies hold true to what they have been, we should be home the week before Christmas. We'll know more as the time gets closer. I'm sure we'll also have to check in with a cardiologist when we get there, and we have to find a new one since Bill's retired this year. But, I'm sure they will tell us what we need to know before we go.

All for now. It's almost time to get us something to eat, even though we're both not very hungry. Good thing we're having left-overs tonight!

Saturday, September 15, 2012

Bill's swallow test went well Friday, only took 10 minutes and they had him swallow 4 different things. I don't think he could have done it that fast if he was aspirating since he would have been coughing.

We had a class during rehab about exercise and meds and how Prednisone can affect so many different parts of the body. Usually I don't like going to the classes because most of them just take some common sense. But this one was informative.

We haven't done much of anything since Weds. other than at Mayo. We did do a little shopping Thursday and every time we tried to go for a walk it started raining. It did rain every day this week, but it's been wonderfully cool, only in the mid 80s. We've only turned the air on at night since the condo gets really stuffy and it's too noisy to have the windows open. Otherwise we've had the patio door open and the ceiling fans running.

We don't have any plans for the rest of the week-end, we'll just see where it leads us. Next week is going to start off with a bang. Bill's biopsy is Monday and we have to be at Mayo at 6:45, then rehab at 10:30 if the biopsy is finished and he feels like going. It should be through his neck again so if it's done in time for him to get some breakfast first he should be ok. We then have to be there at 8:30 Tuesday to get the results of the swallow study. We also have the LVAD luncheon Tuesday afternoon and then rehab again on Weds. and Friday. Whew! I'm pooped just thinking about it.

Can't think of anything else for now. Enjoy the rest of your week-end.

Wednesday, September 12, 2012

A good day at Mayo today. He did well in physical therapy and managed his 30 minutes of continuous walking. He's on track to start the cardiac rehab Friday.

Dr. Landolfo looked at his wound and has released him. It's not draining at all and looks like it is almost closed completely. He said if there are any changes to it to call him.

We have nothing going on tomorrow but Friday will be another long day. He has rehab in the morning and his swallow study in the afternoon. He's not looking forward to that, although it's not invasive. They will give him some different things to eat and drink that have been treated with barium and they will do x-rays as he swallows so that it can be traced. He has decided that they are going to do an operation on it for some reason.

The weather has been beautiful the last 2 days, only in the 80s with a good breeze. We've actually been able to turn the air off and keep the door open.

I'm taking some anti-anxiety meds to see if that will help with the hives. So far it hasn't and this has been the worst day yet. The medicine also makes me sleepy, which is not a good thing. But, maybe once it gets into my system that will change.

I forget to mention in the last post that they re-measured Bill and instead of being 5'11" he's now 5"7 1/2". I know that that is common with age. But, it also changes his BMI. His weight at 150 puts him at an ideal weight. So, we can go ahead now and get his permanent dentures. That will also help his swallow I'm sure since these don't fit well anymore. I still think he looks too thin, but that may be because all of his clothes are too big! Guess we need to do some shopping!

All for now. I'll let you know how Friday goes. We won't have the results until Tuesday and that will be a busy day since we have a luncheon to go to for LVAD patients, and we should get the results of the Monday biopsy.

Monday, September 10, 2012

We've had a very long, but very good day. We started at Mayo at 9:30 and didn't get home until almost 5.

Bill did his 30 minute therapy walk without any "helpers" and, although he got a little wobbly during the last 5-10 minutes, he was able to complete it without having to stop and rest or catch his balance. He has been cleared to walk without aides, but we are still going to keep the walker in the car, and still may get a cane, just to be safe. Debbie, his therapist, wanted to see how he did walking during our down time between appointments so we walked another 10 minutes to the cafeteria for lunch and then 10 minutes back after lunch.

His rehab consult went well and Laurie was so glad to see "Bill". He was having a good day and was very clear in his thought processes most of the time. During his evaluation walk for her he was tired and it showed. He walked slowly and did not go as far as they thought he should have gone. But, Debbie told them that she had really worked him over. Since they knew he could do better they just said that his walk at the end of therapy would show tremendous progress.

He was supposed to start rehab Weds., but he has an appointment to get his leg wound checked that conflicted by about 10 minutes. So, he's scheduled to see Debbie Weds. early and then start rehab Friday. But, we had a message when we got home that his dr. appointment has been moved to the afternoon so I'm going to call them in the morning to see if they want him to do rehab or therapy. I'm hoping he can do rehab since it's at 10:30 and the therapy appointment was for 8:30. Makes it a lot easier to get going a little later in the morning.

The specialty pharmacy also called this morning before we left and I got his meds ordered. It doesn't seem like it's time for a refill on those yet, but he's only got about a weeks worth left. They should be here by Friday.

We're both pretty tired. It's a good thing we ate a good dinner even though it was pretty early. We ate a sandwich when we got home and will probably turn in early. So, all for tonight. Will let you know how the appointment goes Weds.

Sunday, September 9, 2012

The week-end went way too fast! Bill did really good in therapy Friday and can use a cane instead of his walker now. If we're going to be walking a good distance, or for a longer period of time, he's to use the walker, but walking in Mayo for appointments, he's cleared for the cane.

We haven't done much this week-end. It rained some yesterday and this morning but we did get a walk in this afternoon. We've caught up on sleep and I got the condo straightened up.

Tomorrow is his last day for physical therapy and he'll be evaluated to see if he can do away with the walker all together. He also has his evaluation for cardiac rehab tomorrow afternoon. It will be a long day since we won't come home in between. We'll just have some lunch and finish the paperwork they are going to need.

His swallowing has improved again. This is probably something we are going to have to deal with at times. I don't know that another swallow study will show much. He does need to see speech therapists for his cognition and memory and they will also work with his swallow.

We visited the nursing home Friday after therapy and everyone was glad to see us. The therapists were thrilled to see how good he was walking and were pleased to know that he hasn't had any falls. We also saw another couple that were there and they are going home this coming week. But, they are not as fortunate as we are. She is in late stage dementia now and is almost completely bedridden and helpless. This is due to a fall and surgery which is why she is in rehab. She has just refused to try walking. They are both in their early 80s and have been married 63 years. We've exchanged phone numbers and will try to stay in touch. He is going to have to hire someone to help a few hours a day. He is totally devoted to her and he knows that he can't lift her safely.

All for tonight. It's getting late and we still have the last finger stick, meds, vitals, and wound dressisng to do. Sounds like it's more than it really is, will really only take about 15 minutes! I'll let you know how the evaluation goes tomorrow.

Thursday, September 6, 2012

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 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.

Monday, September 3, 2012

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.