Wednesday, October 31, 2012

Starting to feel better after my cold. Bill has not gotten it which is a good thing considering the meds he is on. And I think me being sick has been a good thing for him, he's done more for himself and around the house. We managed to get laundry done yesterday. He helped carry the hampers from the bedroom to the laundry room and back to the bedroom to fold. He also folded/hung his clothes. I only helped his after my clothes were done.

We ran some errands today. My tire pressure light had come on when the weather changed and I wanted to get the pressure checked so we ran by the dealer after rehab today. We also hit the bank, got bills paid and cleaned out the car.

We're heading off tomorrow to meet Don and Shirley at their camp in Homossasa. We aren't able to go to their house because of their birds. That's a no-no for transplants. But, they have a mobile home at a nice campground so we're going to go there for a couple of days. We'll come back on Saturday. Short, but it will get us out of town and we haven't seen them for awhile now.

Still need to pack our bags but that won't take too long. I'm not taking the computer because I don't know if there will be any WiFi. But I'll let you know how things go.

Saturday, October 27, 2012

Ending the week the same way we started, not doing much of anything. We did manage to go to the fitness center Thursday and Bill finally did his resistance band exercises and balance walking! Then back to Mayo on Friday for rehab.

We went by Cypress Village to take them some paperwork and visited everyone. They couldn't believe that Bill was walking with no walker or cane. All of the nurses and therapists, and of course my special friend housekeeper Shirley were glad to see us. Even the director of nursing, director of therapy and assistand director of nursing, plus the social workers were surprised. We had a good visit with everyone.

I have really enjoyed the wind from the hurricane. Wind is all we got. There may have been some showers at the beaches, and all of the beaches and piers were, and remain, closed. We've kept the door open most of the time and it was just lovely. But, all good things must come to an end and it has done me in. I'm trying to catch a cold. My throat hurts, sinuses are draining and my eyes are dry. I don't have any fever, just feel really lousy, and now starting to cough. Took some medicine a few minutes ago so will go to bed before long. As long as there's no fever Bill should be safe, but we will probably be sleeping in separate rooms before long. We'll have to see how the night goes. So, going to turn the tv on in the bedroom and watch the ballgame until we fall asleep.

Goodnight!

Wednesday, October 24, 2012

We've had a boring week so far, rehab Monday, fitness center Tuesday, rehab today. Nothing else done.

Bill actually dried the dishes tonight and did a pretty good job. He did drop a coffee mug and crack it and couldn't remember where some things went, but we managed to get them done and put away.

He's gone to bed for the night and I'm watching the end of the baseball game. It looks like the Giants will probably win, but I'm not really tired yet so will stay up a little later.

If any of you watched the national NBC news tonight and saw the report by Jim Cantore about Hurricane Sandy, he was a little dramatic. One thing the weather people in Florida do is watch the tropics very carefully. This is also a big week-end in Jacksonville. It's the Florida/Georgia football game. People have been parked alongside the road in their RVs until "RV City" opened this morning. So, the weather will be very important this week-end. By most reports, the storm is not coming close. There will be some wind and probably some rain, but they said it will be like a weak nor'easter. There's a front coming across the Rockies that is strong enough to push the storm east. So, it's not going to be as bad here as they made it out to be. Of course it's all subject to change, but right now it's no big deal. I told Bill we should be back at the beach because the waves could be 7 feet which would be awesome, but with the football game, there won't be a hotel room to be found! May have to just go walk the pier!

Sunday, October 21, 2012

Just a quick update tonight. We've had a lovely day. The weather was perfect and we went to Castaway Island Nature Preserve. It's a small preserve on the San Pablo River, which is "the ditch" that separates Jacksonville and Jacksonville Beach. There are very nice walking paths through the woods and marsh with benches and information boards telling about the wildlife of the area, complete with "footprints" to follow on the walkways.

We walked for about an hour total with a couple of rest stops. We were also able to watch some of the aircraft in town for the air show. It had been a long time since we had seen formation flying and it brought back some memories. We decided against going to the airshow itself because of the crowds.

Anyway, we came home in early afternoon and spent a quiet evening, had dinner and got the kitchen cleaned up and now watching the NLCS playoffs. I'm really liking it that San Francisco is winning...at the moment. But, for those of you who really know me, you know I just can't bring myself to root for the Cardinals. Sorry Cardinal friends, but that's just the way it is!

Rehab in the morning and then errands to run. We got our absentee ballots Friday and need to get them back in the mail so they will be counted. And, just a friendly political reminder, it doesn't matter to me who you vote for, VOTE. And now I'm done!

Saturday, October 20, 2012

We've had a pretty quiet day today. Bill had decided yesterday that we needed to start getting up earlier and set a schedule to do his exercises! This came after he got a talking to from his therapist yesterday. He did show some improvement in agility, but she wasn't happy he hadn't done the balance or resistance bands. So, we came home and decided on a time and put everything on his calendar.

This morning we did not get up early, went to bed late so slept late, and then we both didn't feel well. We went out to eat last night and apparently it didn't settle well. We didn't eat the same thing but we did share a dessert and both of us had stomach cramps most of the day.

I did manage to get a few groceries bought and by late this afternoon we were both feeling good enough to eat some dinner. We were going to go to a new park today that is supposed to have some great walking paths. It's also pretty close, on the way to Mayo. The weather is supposed to be fantastic tomorrow, only in the 70s so it may be the better day to go.

We already have a date for his next biopsy. Mayo called yesterday with the day and time. It will be Nov. 12, Emily's birthday, and we have to be there at 7, so he should be the 2nd one. They start at 8 and they usually take 30 minutes. He could actually go on to therapy afterwards at 10:30 since he'll have time to eat some breakfast in between.

So, all I can think of for tonight. It's getting late and we are both tired. We could have gone to bed as soon as it got dark, but forced ourselves to stay up. Goodnight everyone!

Thursday, October 18, 2012

Didn't get anything posted yesterday as you can tell. I was hit with severe diahrea and vomiting Tuesday night/Wedsnesday morning. Only lasted about 5 hours, but it was 5 hours from...well, you get the picture. Plus, the fire alarm went off at 3 am for the building across from us and there were fire trucks and strobe lights, so it wasn't a pleasant night for me. Bill slept through all of it!

We did make Bill's appointments yesterday but it would have been nice to have had someone here who could have taken him instead of me! One of the big drawbacks to being here without family around! I haven't heard anything from Stephanie about the test results, but I checked his on-line account and the Prograf is within normal limits so I don't think anything will be changed. Since she knows that I look at the reports, she may have thought that I would look.

We had another fire alarm go off for another building last night, only earlier. It was one around the corner and the fire truck could not make the turn so had to back all the way down our area. It was one of those super long trucks with the high lift bucket on it. This time we could only hear the alarm if we opened the door, and, since we went to bed at 8:30 last night, it was before that.

We both apparently needed the extra sleep. I woke up about 7 and Bill woke up about 8. I know I needed the sleep because of the sleepless night on Tuesday. I've noticed, and he has too, that Bill is requiring more sleep than before. This is most likely due to the stroke since he should have a lot more energy from the transplant. We're going to start making ourselves get up earlier to see if that helps him any. He just goes from the bed to the recliner and I have to make him do anything, like his walking.

He sees Debbie tomorrow after rehab to check his balance and he hasn't done any of those exercises so it should be interesting! He also hasn't worked with his resistance bands for his arms and shoulders.

I don't know if I've said anything about this before, without going back and looking, so I'm just going to repeat it if I have. Mayo does a really good job with training caregivers, but they do have 1 drawback. They seem to forget that we have to live with the patient. It's all well and good to tell us that we can't be the "partner", but they don't have to live with and deal with the consequences. This isn't just my opinion. I've talked to some other caregivers and they are dealing with the same things. One even told me that she's been told she's NOT his mother and to stop telling him what to do! We all have gotten tired of nagging them to drink or eat or exercise. And like Bill reminds me, he's grown and has been making decisions for 69 years!

OK, all for today. I have the dishwasher going and need to buy some groceries, pick up around here, entice Bill to exercise and knit. I would like to put the knitting at the top of the list, but if I do I won't get anything else done so it will have to be my reward!

Tuesday, October 16, 2012

Praise the Lord, back to 0 so no rejection! All of his lab numbers look good except they tested for the wrong medication. Instead of testing for Prograf they tested for Cyclosporine. So tomorrow he has to have labs done before rehab.

I don't know if I mentioned it or not but Bill hit his elbow on the bathroom door at the hotel the other night and has a nasty looking skin tear. I bandaged it and Stephanie looked at it yesterday. She covered it with a clear patch that is medicated and wrapped it in gauze. I needed to change the gauze tonight and the patch also came off so I had to put another one on. I think this stuff grows new skin while protecting the open wound.

There's another man in the complex who has had a stroke. We see him a lot when we're getting the mail. He's still in a wheelchair and has a lot of difficulty with speech but is clear enough most of the time. He has watched Bill's progress from the LVAD through the walker stage to today. When we saw him this afternoon he told Bill that he is an inspiration to him. Could be another reason God decided that Bill needed to have the problems he has.

Bill is more aware of his limitations each day and sometimes it really bothers him. He realizes he's still weaker than he should be and he said that he can't think clearly half of the time. So, I'm watching for any signs of depression again. So far there are none and since he realizes his problems it may help when we talk about it.

Today was laundry day and we are both pooped! I fixed a horrible dinner so we may have to have a late night snack! It was just one of those nights that things didn't turn out right. We've also lost our local cable channels and Comcast doesn't have them fixed yet so that throws things off. You can tell we are in a real rut when we watch certain programs at certain times every day!

The weather was lovely today. Got down to 59 last night and I've had the door opened most of the day. There had been a nice breeze but it has stopped now. Supposed to be nice again tomorrow too.

All for tonight. I'll let you know about the tests tomorrow.

Monday, October 15, 2012

Biopsy went well today. We saw Dr. Patel and we hadn't seen him since his first biopsy as an out-patient. This was one where he couldn't move at all on his own. He said he could have cried when he saw him walk in! We won't have the results until tomorrow, so there's really nothing else to report. Our day was pretty lazy after having to get moving so early this morning.

We're getting ready to head to bed. Goodnight!

Sunday, October 14, 2012

We had an absolutely lovely week-end. We packed a suitcase yesterday and grabbed all the meds and hit the road. Drove down to Daytona Beach via the coast road. From Jacksonville Beach to Flagler Beach the view isn't that great, mostly mega-mansions. But from Flagler Beach south we were right along the Atlantic. There was a tropical depression skirting the area and it was windy and the waves were huge with lots of them.

After lunch we headed back north. We had decided to stay in Daytona but it was Biketoberfest and there wasn't a room to be found. Lots of motorcycles but no hotel rooms. Stopped at the pier in Flagler Beach and the waves were so strong at times we could feel the pier shifting. Unlike the pier at Jacksonville Beach, some of the planks have been professionally personalized. There was a marriage proposal on one but most were memorials. I didn't ask but I think that as the planking needs replaced the new one can be purchased and inscribed, which is actually a neat idea.

On the way back home we decided to see if we could get a room on Jacksonville Beach. Stopped at the Quality Inn Suites and got a King suite. All of the rooms are oceanfront with private balconies and we were on the 5th floor. I could have sat on the balcony all night. The waves were still pounding after dark and all you could see were the whitecaps. I wanted to leave the door open all night, but it was too noisy! I did hear the wind off and on all night and when we woke up and I looked out it had been raining. But, we dried off the chairs and had our coffee on the balcony. The waves were still big and the sky was dark with storm clouds and absolutely gorgeous. The only thing that would have made that stay better was to have some lightning!

We got home about noon and haven't done much of anything all afternoon. Fixed some dinner a little while ago and watched the ALCS ballgame. Getting ready to watch the NLCS game, at least part of it. We do have to get up earlier tomorrow. It's biopsy day and we have to check in at Mayo at 8 am.

We both needed the getaway and I would have been fine if we had come home last night. Just getting away for the day did wonders for me! Maybe that will hold me until the first of November when we head off to meet Don and Shirley at their camp in Homassa for the week-end.

I'll let you know how the biopsy goes, and of course on Tuesday when we get the results.

Saturday, October 13, 2012

Good Morning!

Our week was much better than last week. Except for a little soreness in my jaw (and still waiting for the bruise to show itself) my mouth feels fine.

Bill's stomach has behaved itself for the most part except for Thursday afternoon and it didn't get as painful as before, or have the diahrea hit as hard as usual. The only thing he had different was a milkshake in the afternoon. The last time it acted up he had cereal for breakfast. Can lactose intolerance develop late in life? He was never intolerant before but that's the only thing I can think of.

We're going to go exploring today. We both have cabin fever so we are getting out of town. Don't know where we are going or if we are coming back tonight or not. I'll let you know how it goes when we get home.

Have a good week-end!

Tuesday, October 9, 2012

Finally got my tooth pulled today. It didn't hurt at all and we were home within 2 hours of leaving the house.
The people who signed in in front of me were probably wondering why I got called in first, but I didn't need to have the xrays done. It's a little uncomfortable now and my cheek hurts more than the socket but Aleve has worked. Took some before the numb wore completely off and will take some more when I go to bed. Hopefully won't have a bruise on my cheek...everyone will think Bill whacked me!

We've narrowed down his stomach discomfort to one of his meds, we think. He was fine this morning until I gave him his "after breakfast" pills. He said within 10 minutes his stomach cramped. The antibiotic that he takes can cause stomach cramps. He has to take an antibiotic for the rest of his life. His donor was exposed to the CMV virus which is a mega-virus. Bill had never been exposed to it but because his immune system is being killed by the anti-rejection meds, he has to take the antibiotic. I'm going to track it for a few more days and talk to Dr. Yip Monday at his biopsy to see if there is another one he can take.

We've gotten a taste of fall weather which was wonderful. It was only in the low 70s today and tonight is supposed to get into the upper 50s. I've had the air off and the patio door open all day but turned the air on now. The bedroom gets stuffy if there is no good airflow. The ceiling fan doesn't do much without the air/heat on.

All for tonight. It's just about time for meds and vitals.

Sunday, October 7, 2012

Thank God this week is over!

Bill finally started feeling better yesterday afternoon and ate off and on all day today! Even had seconds tonight for the first time in I don't know how long.

It's a good thing he's turned the corner because my tooth has really acted up today. Nothing is helping, not pain meds or Orajel. And, the dentist is not open tomorrow. So, we're going to get up early Tuesday to get there by 8. Bill has some Lortabs and I may take one tonight when I go to bed so that I can get some sleep. But, I've taken so much Aleve I'm almost afraid to take anything else. We'll have to see when bedtime comes.

We're going to try something this week. Bill had always been in charge of his medications, filling his weekly box, and such. I spent some time yesterday typing up his med list and specifying which box each goes in and then the times they are to be taken. His will need replenished Tuesday or Wednesday and he's going to see if he can do it.

I'm also going to type out a daily routine, as far as meds and vitals go, so that anyone else can see when things need done. I don't know if Bill would be able to do it himself, but if someone else has to do it for some reason, it will be in the front of his transplant book. And that book can't be missed!

All I can think of for tonight. Hopefully we'll both be able to sleep!

Friday, October 5, 2012

I'm glad that this week is almost over, and can soon be put behind us!

I have not been able to get my tooth pulled, but the antibiotics and Aleve are working and I'm pain free. I was supposed to get it pulled yesterday, but Bill was still having his stomach problem and I spent quite a while on the phone with our coordinator to try to find the cause. They finally gave him a laxative similar to what you take for a colonoscopy. He finally is getting empty and seems to be feeling a little better.

He did not go to rehab today since he wanted to stay closer to the bathroom. I told them that I discussed his weight loss with Stephanie and she said just to monitor it. But, it's doing no good to stay close to the bathroom because the water is off while the irrigation for the landscaping is being worked on! They usually let people know that the water is going to be off but this time they didn't. And of course, I was doing laundry when they shut it off!

As I said, I'll be glad when this week is over!

Wednesday, October 3, 2012

We've had a trying few days. Bill had a stomach upset most of the week-end and the meds given for that have turned things the opposite way now. Hopefully you'll be able to figure this out without me being too specific.

He did see the physical therapist Monday instead of having rehab and she was pleased with his progress. She's going to work more with him one on one instead of having him in group. There are too many people and he gets distracted too easily to move from one place to the other without needing prompting. But, she was pleased with his progress and gave us some exercises to do at home.

This afternoon I had a shooting pain go through a tooth and actually thought I was going to be sick from the pain. Not even having children was this painful. Found a walk-in dental clinic that was open until 7 and found that a molar needs to come out. He was going to go ahead and pull it tonight but Bill was overdue for his meds (we were there 3 hours by then), so tomorrow I'm going back to have it pulled. He went ahead and started me on antibiotics and told me just to use Ibuprofen for the pain, but it's not touching it at all. The entire side of my face hurts, into my ear and down into my throat. Laying down is horrible so I'm going to try sleeping on the loveseat. If that doesn't work, I'll just lay my head in my arms on the kitchen island. I have a feeling it's going to be a looonnng night!