Saturday, April 28, 2018

It was another week of Bill gasping for air every time he moved from one room to another. I don't know how to make him understand that if he moved more, even for 5 minutes, his breathing would get easier. He is drinking enough, I think, but now I'm having to make him eat. He'll just tell me that he's not hungry if I ask him what he wants to eat, so I've just started fixing him something and taking it to him. And, I know, that defeats the purpose of him moving!

The week has been damp and rainy for the most part and we've both been pretty miserable. Between the rain and the high tree pollen we have both been coughing and stuffy and nothing seems to help. Bill is using not only his maintenance inhalers, but his rescue inhaler, zyrtek, Flonase, and Benadryl to try to stop his drainage. I've used his rescue inhaler a couple of times and Flonase and Benadryl and still feel as stuffy. If I'm not stuffy, my nose is draining like a water faucet. It will be a pleasure to get to the good sea air Monday!

I've started keeping a stress diary, to see just what stresses me more than usual and what I can do to fix that. My blood pressure has been in the normal range most of the week. Yesterday was the first day in several that I felt good. I didn't have a headache when I woke up, I felt rested and had some energy. I don't know if the B12 finally kicked in or just what it was. There were a couple of times that could have been bad, but it just didn't faze me...until last night. 

We tried using the oxygen mask while Bill was putting his pajamas on. He was gasping for air and not getting anywhere. He had used his rescue inhaler and was still getting no relief. So, I got the mask out and put it on him so that he could just breathe through his mouth. And he pulled it off and threw it across the room, at least as far as the tubing would allow. So I reconnected his nasal cannula and put the mask back in the package and left the room...without saying a word. I know that he has a hard time remembering things but I get so tired of repeating the same things to him that will help him if only he will listen.

At one point yesterday we were talking about his walking and his eating and I finally said, "You know I'm right, but you aren't going to believe it until it comes from a dr. are you, after all what do I know, I'm just "the wife". And he agreed! So, it will be interesting to hear what Dr. Patel has to say Wednesday.

Except for laundry and packing, we're as ready as we can be to leave in the morning. Brianna is coming to get the cat this afternoon. She knows something is up as she's been very clingy the last couple of days.

That's all for this week. Sorry for the long rant, but that's how it is here. I don't know if I will update this after we see the dr. on Wednesday and get all of the test results, or if I will just wait until we get home Friday and do a regular update. It will probably depend on what we find out. Just check late Wednesday to see if there's something new.

Saturday, April 21, 2018

I don't know what I'm going to do with Bill! All he does is walk from the bedroom to the bathroom to the couch. And, unless he has to use the bathroom, he doesn't move all day. If I'm up and moving around he'll ask me to get him something from the kitchen, and then, especially in the evening, when he's getting ready for bed, he's so short winded that he has to use his rescue inhaler and just sit and breathe before he can do anything. I know that he will just MOVE, that will all get better. He won't even take his dirty dishes from breakfast to the kitchen, just sits them on the end table next to him. 

Although I think it was just allergies earlier in the week, I was beginning to think that Bill was starting to relapse again. since he wasn't breathing well when walking and coughing more, but when I suggested that he may need to have labs drawn again, he flat told me he wasn't going to the dr. So, I've just monitored all of his vitals and they've been good, although I've gotten a couple of super low blood pressure readings, but took it again and got better ones. I guess we'll just see what the Mayo labs show.

I made him a schedule this week and, without him really knowing I did it, I got him to do a little more moving around. We've gotten into a rut that we eat in front of the television all the time. I decided that we're going to start eating at the table. He told me that he had been thinking the same thing, but when I set the table Thursday night, he said he didn't think we were going to start that soon! Except for me eating my breakfast there yesterday morning, that lasted 1 day. He did fix his own cereal yesterday morning, but the bowl sat next to him until I carried it to the kitchen at some point in the afternoon.

That's the emotional side of me talking. The intellectual side knows that COPD and emphysema are horrible diseases with no cure (Bill also talks about when he gets "over this" and feels better again the things he will do) and it is hard for him to breathe and do things. But, the "inquiring mind" side of me has read as much as possible about living with them and everything points to moving as the best thing that can be done. It's just getting him to do it! He's still talking a good game of using his treadmill and driving his car, but the car hasn't moved for a year and he doesn't have the energy to walk to the apartment to use the treadmill. We have a young man coming to do some work this week-end and I may see it we can get it moved into the house so maybe it will get some use and it will help him.

I know that some of this is also my doing, it's easier for me to just do things and wait on him than to let him do it. But, it seems like now I've having to tell him when he's worn the same clothes for 3-4 days in a row and that it's been a week since he's shaved. He was always one to be clean shaven and neatly dressed and now some days he looks like a bum...but he's my bum. So, the campaign to get him to move more will kick into higher gear this week, or he won't be able to walk 10 steps at Mayo. And they won't be happy about that.

I have my cardiologist consult finally. I put in an online request last week-end and got a phone call Monday. We did the preliminary paperwork over the phone and the scheduler was surprised that there was an opening on May 14. She didn't tell me to dress comfortably or have a driver with me, so I think this is just a consult. I would imagine she will want to go ahead and do an EKG and maybe a chest x-ray with some bloodwork. Bill said he would just stay home and not go, which surprised me, but that would mean that someone else would have to go to sit with him if there is any testing done. So, something else to think about. The appointment isn't until the afternoon, so as long as he's covered for lunch he should be OK. Emily suggested I ask my friend Phillis to go with me just to have some other ears, and it would give her a break from her husband who is starting to show some signs of dementia, but I think I would just enjoy the alone time. We've got a little time yet to decide.

Our excitement for the week, since last week had storms and tornadoes, was an earthquake! It wasn't very big, 1.9, but it was centered only about a mile away at the entrance to the golf course. There was a big boom and the house shook like something hit it, or a big piece of equipment was being unloaded, or a tree trunk hitting the ground, but, there was nothing. Joe and I were both looking all around outside when it was finally put on Facebook that it was a quake. I don't think there have been any aftershocks . This is the first one we've had in quite a while.

I have noticed that my little "happy" pill needs to be taken on a pretty tight schedule. I feel much better, more relaxed when I take it first thing in the morning. I've also been taking it with my night meds to help me sleep better, and it has done that, but I've noticed that I'm getting short-tempered in the evenings. So, it may be one that needs to be taken on a 12 hour schedule and not just twice a day.

I started taking some vitamin B12 this week. I don't know that it's had any effect yet. Thursday I had lots of energy and felt good all day. I washed all of the throws and had them out of the dryer and folded and back on the couch by 6:30. I also dusted, swiffered all of the hardwoods and vacuumed before Bill was even out of bed, and was finished with that by 9. That energy was all gone yesterday and I woke up tired again. But...another weather change is here. Went from 80 on Thursday to 60 yesterday. I haven't looked to see what it's supposed to be today.

This coming week will be for getting ready for our trip. It has always seemed like this one was so far in the future I didn't need to be doing anything to get ready and now it's here! So, I'll be busy this week with that.

All I can think of for now. Sorry this isn't more upbeat and boring, but such is life. It is what it is. See you next Saturday!

Saturday, April 14, 2018

My goodness there have been computer problems the last 2 days! Yesterday my laptop just.locked up and it took over an hour for it to reboot. This one is only a year old (got it after the hard drive crashed in my other one). This one is just like it, except it came with Windows 10, which I had gotten used to. But, I digress. This morning when I brought up this blog, there was no dashboard for me to go to my post list, or the reading list of blogs I follow. Finally, I don't really know what I did, but I got to where I could actually do something with it!

We've had a decent week. Bill has been discharged from Home Health. The last visit was Wednesday and our goal of staying out of the hospital was met. We will definitely request this company if we need home health services again.

I still don't have the referral for the cardiologist. I'm going to request it myself since it has now been 2 weeks and Emily told me last night that the nurse is just too busy to get it done. I'd like for it to be before we go to Florida, and we leave in 2 weeks. After that we're into the 2nd week of May before it can be scheduled.

I feel much better than I had for a long time. My pressure has gone down. The last couple of days it's been in the 130s/90 range. I've also had energy this week and have gotten some things done around here. I've also noticed that little things are not bothering me as much, such as not being able to access something on TV that we are subscribed to. Instead of getting angry about it, I just told Bill I would deal with it later. Still haven't done it, but it's not a big deal! Before, I would be channeling my grandfather who was famous (at least in the family) for his quick temper. 

The memorial service for our niece was this week. There was a formal service at the church and then an informal one at a park. We haven't talked to Bill's sister since the services. They have held up quite well through all of it. I was wrong about her age earlier, she would have been 43 in August. Her birthday was a few days after mine.

That's really it from here. It's storming this morning, although I think we are at the tail end of it now. It didn't get bad here, but a small town in the northwest part of the state had a tornado. I have some friends that live there, an older couple. I worked with the wife until she got remarried and moved to the mountain. I haven't heard anything from her online, but that could just be because they don't have any power. As for our area, I think everything is OK.

Until next week....

Saturday, April 7, 2018

Here it is the end of the first week of April and I'm listening to the tapping of freezing rain on the windows! We are right at the line of the wintery mix and rain. It's not going to last and it's not going to be a major event...but it will probably keep us from going to the Pancake and Sausage breakfast at one of the schools. It's not a fundraiser for the schools but for the local Kiwanis Club. We haven't been in years and Bill thought it sounded good. But, we'll probably stay in now. I'll know more after the sun is up.

Bill is "cured"! Of course he will still have the pocket of pneumonia in his lower lung that we will always have to watch, but he's over this bout. He feels good, his white count was excellent Wednesday and he doesn't have to go back. He did have a little problem with thrush over the week-end from all the antibiotics but I had some Nystatin and started using that and we took him off the Doxycyclene for a few days. She also took him off it completely yesterday when I saw her and just told me if he starts to get symptomatic to start him on that again, and it may be something he will have to take like he does the Bactrim. 

I told him Thursday afternoon that he looked like he felt good. He had told me that he did, but he looked like the old Bill. His eyes were clear and focused and I could tell that his mind was clearer than it had been in a long time. His appetite has come back and he's actually interested in things again. He still hasn't started doing his word puzzles again, but maybe soon. I actually think he misplaced the one he was using but he has an entire box to choose from.

I went back to the dr. yesterday and it was actually a waste of time. My thyroid levels all came back normal. The cardiac consult has not been scheduled yet. I know the nurse tried last Friday, but it was good Friday and that office was closed. But, nothing had been done this week either. My pressure has come down, although it's really hard for me to tell. I get reading still in the 172/100 range so Amy checked it when she drew Bill's labs Wednesday and she got 126/74, yet when she took it with our machine it was 162/88. When I took it yesterday before the dr. it was 158/88 and at the office it was 145/83. So, we just going to assume it's about 15 points different, at the least. I'll change the batteries this week-end and see if that changes anything, or maybe we just need to get a new one. We'll see. I do feel better with the other blood pressure added, the extra potassium and the anti-anxiety. I'm not waking up as tired as I had been and have a little more energy.

My sister and mother both wonder why a stress test would be suggested...especially since I'm already under a lot of stress to begin with. I would imagine that the cardiologist would want to consult first before doing any testing. And as much as I like Dr. Shala, I may tell them I want to go to a different dr. The group Bill was with before the transplant as a dr. that specializes in women's heart health and I think I want to go to her instead. So, I'll call them first thing Monday morning and let them know that. I also know where that office is. It's in the same building as Dr. Burbeck and across the street from the hospital. They don't do the testing at the hospital, there is a huge test area that covers an entire floor for any scans, mris and such, so it's all in one location. Dr. Shala's may also be in the a complex like that, but I would rather be in one I'm familiar with. Ryan said that he and Amanda would go with us just in case I can't drive home, and someone needs to be with Bill to monitor his oxygen and just keep him company so that he doesn't panic in an unfamiliar place on his own.

That's been our week. We've watched baseball as much as possible and just stayed in. We did go out for lunch one day this week, and Bill has wanted food from different places in town. I've gone and picked them up which is just easier, but at least he's showing interest in things again.

So, maybe next week I'll have an appointment and then it won't be long before we head to Florida. Have a good week!