Things are finally settling back down for us, and I for one am ready for it!

Bill saw our nurse practitioner Thursday and she thinks his arm and shoulder pain is bursitis. Nothing showed up on the xray. She's given him another round of prednisone and a mild anti-inflammatory. She's only taken 2 of those and he said it's already feeling much better. It was so bad Friday that it was hurting him from his elbow to his neck, so I'm glad it's helping. I think part of the problem is also the way he sleeps. He curls up into a little ball and he sleeps mostly on his right side which is the arm that hurts.

The overnight O2 test was done last night. We just happened to see the rep from the company supplying the oxygen while we were at the dr. and told her what we found out in Memphis. She took all the info and contacted the dr. for the script for it and brought it yesterday afternoon. She's going to pick it up sometime this week-end. I thought it would probably bother him last night but he slept all night and didn't get up at all. The last time he had one of these done it was at Mayo when he was evaluated for the transplant and it was a box that he had to carry with him if he went to the bathroom. This one was a watch which was much easier. We already have it packed up and ready to go.

Our weather has gotten warm again and will be 72 Tuesday with severe weather forecast. Then the high Wednesday is 47. I saw 2 robins yesterday morning and thought that even the birds are confused by this weather. It wouldn't surprise me to see the trees budding. I picked a dandelion in December!

We were saddened yesterday to find out that our friend Abner from Jacksonville passed away early yesterday morning. He and his wife became good friends while we were there. The men were in rehab together which is how they met, and of course Faith and I met in the waiting room! He had been very ill for several months and was in hospice care. I wish we could be there for her, but they have a lot of family there. I've told her we will be there in spirit.

That's about it. We should hear something this coming week about the test results so hopefully I can let you know if he's going to have to keep the oxygen for night use only. See you next week!

It's been a long day, with 3 hours spent driving. Left the house at 9 this morning and got home at 2:45.

We really liked this dr. She was very "common". By that I mean she spoke our language and didn't have the "I'm the dr" attitude. She is wheelchair bound so that put her on our level and the entire appointment was more like just a friendly visit with a few medical things thrown in.

Bill does have COPD and emphysema. She said that is clearly shown on his chest x-ray. The PFT (pulmonary function test) showed that he takes air in well but he has trouble expelling it. His walking O2 sat was 92/93 without oxygen and she was pleased with that so he can do away with the daytime oxygen if he wants. She thinks he may have trouble at night so she's ordered a home test to check this. But, I told him if he has to wear it at night it won't bother him since he'll be sleeping! She did give him 3 different inhalers to use to help with this. It will just be getting him to use them!

As far as the nodule goes, she wasn't overly concerned with it. She says sometimes the lungs fold and she suspects this is what has happened. Why it happens she didn't say. But, she's doing the follow-up CT scan and a PET scan in April to see if the size has changed. She also said the PET will show if it is actually a cancerous tumor. We will have to overnight in Memphis instead of driving back and forth because the scan will be done and then we will see the dr. the next day after it has been read.

So, that's it. I'm relieved somewhat. Of course we can call her if something else happens before April, but I don't think that will happen. But, I didn't think this would all happen either, so who knows!

He's been complaining about his right arm hurting the last few days, so he's going to see our regular dr. tomorrow. He says it's just a dull ache in his upper arm and shoulder so it could just be the way he's been sleeping. But, since it's going on 4 days now we're getting it checked out.

I'll do my regular update Saturday and let you know what we find out tomorrow. For now I'm taking some Tylenol for a headache. I still have a few phone calls to make to ones who need to hear these results. Thanks for all the good thoughts and prayers!

 

This has been a crazy week, but what in our life is normal anymore? Bill has done well this week and hasn't needed to use his oxygen much at all. He still gets somewhat winded when he moves, but it could also just be habit. I had noticed that for months he would breathe really hard but when I would ask him about it he immediately stopped. So it might be more habit than anything. 

Emily's family didn't have any water for the first part of the week. A company working for the railroad hit the water line and the entire housing area they live in was without water from Sunday until Wednesday. So, they were here showering and doing some laundry, which of course kept me doing laundry to keep the towels available. 

We had an ice storm Tuesday night and the kids were out of school Wednesday. It wasn't a really bad storm, but the roads were bad enough that the buses couldn't run. We were forecast to get quite a bit of snow from the storm that is now hitting the east coast on Thursday night into Friday morning. I had already stocked up on groceries before the storm on Tuesday so we were ready for anything. The storm started with freezing rain about 11 pm and we got way more ice than they had predicted. It was snowing really hard by 4:15, but by 10 it was all over. We only got a couple of inches of snow, compared to the 4-6 we were supposed to get. If you're wondering why I know the times, I'm a storm junkie and couldn't sleep, so I was up and down. The forecast had been so dire that the schools announced closings before any of the precip started.

We did lose power a little after 10 yesterday morning so we were running on generator power until about 2. We knew that the air conditioner wouldn't run in the summer, but we thought that the furnace was hooked in to run. This was the first time we had to use the generator in the winter and the furnace did not run. It didn't get too cool and we didn't need to have a fire. Just kept the coffee going. So, this spring, when the weather is nice, we're going to have the generator switched from manual to automatic start and have both the air and heat connected. It will cost a little bit of money, but it will be worth it in the long run.

Bill's appointment in Memphis is Wednesday but I don't think we'll have to worry about the roads. It's supposed to get well above freezing from tomorrow on so they should be clear. I'll post again after the appointment to let you know what we found out.

All for this week. If you're in the path of this storm, hunker down and stay safe and warm. Until Wednesday or Thursday...

We got home Wednesday afternoon and the trip home was uneventful, just long. We left our hotel in Alabama at 5:09 am and pulled into the driveway at 2:05. We only stopped once for gas and breakfast. We ordered pizza for supper and were in bed by 7:30! 

Thursday I got some groceries, only a few to get us through the week-end and picked up and restarted the mail. Yesterday everything caught up and I had absolutely no energy, so didn't do much of anything.

We were able to get the hose for the oxygen concentrator and got both of the tanks filled before leaving Florida. I've got to get a thank you card out to JC Home Medical Supply. They were fantastic. My sister has suggested that we switch suppliers and go with one that is nationwide. That way there won't be this problem again.

Bill has done well without the oxygen, although he still gets a little winded when he's active. The Dr. gave me some numbers to work with to show when he needs the oxygen and when he doesn't. He wants him weaned off of it if possible, and I know Bill wants off of it.

Stephanie called Thursday and said that Dr. Leoni wants Bill to see a pulmonologist sooner rather than later. No-one is coming out and saying anything about what was seen on the scan, which bothers me. I would rather know what we are facing sooner rather than later. Evidently there is something in the written report that is causing some alarm. 

We were told that it would probably take 8 weeks to get an appointment, but again, when Emily read what the report said to the pulmonologists office, they were able to schedule him for the 27th. I'm to let Stephanie know Tuesday and then she will cancel the ones at Mayo. The dr. we are seeing is in Memphis and has been affiliated with the transplant program there. Of course we would rather be at Mayo, but if this is something that will take multiple visits or treatments, it's better for it to be here...or we would have to move. 

I noticed that we weren't home 2 hours and my throat was hurting and I was all stuffy so maybe we do need to move from this area. There are a lot of breathing/lung problems here because of all the chemicals used on the cotton fields. We are told that they are not harmful to humans, animals or houseplants, yet when they are spraying, whether it is at the beginning of the growing season or during defoliation, the houses around the fields don't have any plants around them and I can feel my throat closing just to breathe it. Something to think about.

We don't have any plans for the coming week and will probably be staying in. The weather has again been 60 and today it's 40 and we're looking at a high of 30 on Monday. Other than doing what needs to be done, we're staying in where it's warm.

Until next week...

It was a very full morning, but we are finally back at the hotel. Dr. Leoni was pretty happy with the way things were going. He said he didn't see anything alarming in the scan or the echo and his x-ray looked almost the same as the one they did in November. He also didn't hear much in his lungs so he doesn't think he will need to stay on the oxygen for an extended time. He doesn't have asthma or COPD. He does want the CT scan of his chest repeated in 3 months and they may schedule it for May when he has his annual check. He also doesn't think he needs to come back at the end of the month to see the pulmonologist, but he would like for him to see one at home, whether it is Memphis or Jonesboro.

We are both pretty relieved and the appointments were the few parts of this trip that nothing went wrong, even though Dr. Leoni was running late. He is also covering the hospital today and there was a transplant overnight.

It was raining when we left Saturday morning and rained off and on all day. We didn't have the heavy rain we thought we would. When we got to our hotel for the night, the oxygen concentrator fell over and broke the one part that our technician told us not to break! It's the end of the hose that fills his portable tanks. As we were unloading the car yesterday I discovered that I had left the bag with Bill's blood pressure cuff and other medical items in the hotel room. So, had to call them and tell them to hold it since we were coming back through Tuesday. Then, I tried yesterday afternoon to see if our company works with a local company and didn't get anywhere.

The food I have eaten the last 2 days hasn't agreed with me. I don't know if it's just from stress or what, but I have been miserable both nights. I desperately wanted a Coke to settle my stomach last night and the machine wouldn't take coins or paper money or read by debit card! Hopefully tonight will be better. When we left this morning I realized I had left the room keycard on the desk...just as the door latched!

I found a medical supply place that can replace the part and I gave her the information she needed to get a copy of the prescription. The last I spoke with her she was waiting on it to be faxed. And, just a few minutes ago, the company called from home to see just where we were to get a replacement for it! I told her that I was already working on it and she said she would call them and get a fax # and do it RIGHT NOW! So, I'm just waiting on the call back and I'm ready to program the address into my navigation system.

Hopefully the trip home the trip home will be uneventful with nothing breaking and I'll remember to pick up the medical bag. 

Thanks for all of the good thoughts and prayers...they worked! I'll let you know when we get home!

Bill has had all of his tests run that Mayo wanted and we are heading there Saturday morning. He has appointments all Monday morning and then we go back for more appointments on the 26th with one of the lung Drs.

The CT of his chest shows "something" on one lung. Best case scenario is that it is from the pneumonia. Worst case scenario is that it is a cancer. Because of the pneumonia the radiologist wasn't able to tell and he recommends a follow-up in 2-3 months. I'll let Stephanie know this when we are there and they may schedule something while we are there, or when we go back.

He's been feeling better and has been able to walk instead of using a wheelchair the last 2 days for his appointments. Emily got concerned looking at his labs this morning because his blood sugar had been all over the place the last couple of days. But, the Prednisone could be responsible for that.

He's not real thrilled about having to go back at the end of the month, but I reminded him that it was his idea to go and get checked out. So, we'll just see how things go. 

The hardest part will be taking the oxygen. The part of the machine that fills the portable canisters is really heavy and I'm not sure I can get it in and out of the car. I haven't tried the other part. If he didn't have to sleep with it, I think he could get by with the 2 travel canisters, but I don't want to take that chance. So, I'll figure something out!

Tomorrow I'm getting the recall on my car taken care of and then travel money, pack, stop mail, keys to the neighbor and who knows what else. I'd like to get a haircut but I don't know if that will happen or not. 

I'll probably wait and update this after we are finished with his appointments on Monday. Good thoughts please!

Bill saw the dr. this morning and she was pleased that he was doing better and looked better. She said his chest still sounds tight and he's still wheezing some, but not like he was before. He's still getting winded some, but had a good night last night.

He's sitting without his oxygen now to see how he does without it.

I heard from Stephanie and she talked to Dr. Patel who wants some tests run. They also want to see him in the next couple of weeks. We can have 1 of the test run at the dr. office, but the others have to be done at the hospital. He's really leary of the hospital now, but I told him it will be on an outpatient basis and they are non-invasive. They want a chest CT, a Pulmonary Function Test and an Echo. The PFT can be done in the dr. office. Once those tests are done they will schedule some follow-up appointments at Mayo. I told Stephanie that Bill would feel better going to Mayo than Memphis. Since things will be done last minute, I'm hoping that we will be able to get rooms at the last minute.

I'll update again when we know when the test will be done. It's looking up for now...finally.

Bill didn't have a good night. He did a lot of coughing and wheezing. He was also tired most of the morning, but did perk up after a while. His blood pressure has been up today and he's getting winded more and more. I'm so glad we're going to the dr. tomorrow. I have a feeling she will want to ship him to Memphis.

He's fine as long as he sits still, but going to the bathroom seems to trigger something. I still haven't figure out that correlation.

His appetite has been good and he's in good spirits, except when he's moving around. I haven't seen that look of terror in his eyes for the last couple of days, and he recovers faster than he did before. 

That's about it for today, only so so, no better but no worse either, except for the high blood pressure, but it comes down so I think it is also from the shortness of breath.

I'll post again tomorrow after we go to the dr. I'm going to pack a suitcase tonight, just in case we have to go.

We've had a better day today. Bill has only had to have one breathing treatment and has only gotten winded once. He was able to clean himself up and get dressed without getting winded or sitting down to rest. He also said that he feels much better today.

We found out last night that if Mayo wants him in Memphis we can call the local ambulance service, tell them that he's a transplant patient and as long as he's stable they will take him straight to the med-evac helicopter based next to the hospital here. We can bypass this hospital. There is also a chance, depending on where the evac planes are located, that he could be flown straight to Florida.

I noticed yesterday that at times he's almost running moving from one place to another. I don't know if that is a cause of the shortness of breath, or a result. It could be that he's hurrying to sit down so that he can breathe, or it could be that he doesn't realize how fast he's walking. So I keep reminding him to slow down and he's done much better today, at least so far.

I got the laundry finished today and got the house undecorated. Still have to get everything back into the attic, but the major part of it is done. I think Bill feels bad that he can't help right now, but he's never helped decorate/undecorate much anyway so I don't know why he's feeling bad about it!

Well, he just had a little spell. After questioning him it seems like a bowel movement is triggering something. He did the same thing yesterday. He said he's not having to strain,but that seems to take something out of him. He recovered quickly and got some more junk coughed up. Still a good day altogether.

Hope everyone is having a good day, too!

Our old year did not end well, and the new year is not starting out well. Bill is not getting better. Wednesday night he started having shortness of breath when he was walking, and all he was doing was walking to the bathroom. It happened again when he walked to the bedroom and again from the bedroom to the bathroom. I measured it in steps and it is about 20 steps from his side of the bed to the commode. He would just be gasping for air and the look on his face was pure terror that he couldn't breathe.

Yesterday morning I took him to the dr. and we had to have a wheelchair meet us in the parking lot. Thankfully our daughter works there! We were there all morning. Had some labs done, but weren't able to get x-rays or EKG because of the short hours. It was decided that he should be on oxygen at home. So, a wonderful medical supplies rep came in on her day off and got everything ordered. They also wanted us to have a nebulizer, but insurance wouldn't pay for it since he doesn't have a diagnosis of COPD. So, she worked with her office and we got the machine at cost for $50. The plan they have right now for him is to use the oxygen and the nebulizer, both as needed. But they would prefer the oxygen 24/7 and the nebulizer every 4 hours. They also increased the antibiotic (length of time, not strength) and added some prednisone. He's to go back Monday morning for a chest x-ray and EKG. Of course they said if he still has problems to take him back to ER since it is a 4 day week-end. They did say they would take to Mayo before the day was out, but I haven't heard from them.

I was in total brain overload yesterday by the time the oxygen was set up and I was shown how to use it. It is very simple, so far, and I managed to get his 2 small tanks filled with no problems. I have the technician's # and he said as long as I call with a problem before 10 the night before or first thing in the morning, he will re-arrange his schedule. He said oxygen patients get priority. The concentrator running all the time has now shattered my total silence quiet time in the morning. I suppose I could sit at my desktop computer instead of using my laptop in the recliner, but it's just not the same. Some how being curled up with a cup of coffee in the dark is more appealing than sitting at the computer stand. I suppose I'll get used to it.

One thing we found out yesterday is that Bill's bloodwork from the hospital was NOT normal, as the Dr. had told us. It shows there is some fluid at the bottom of his heart which could easily explain the shortness of breath. That could also be 2 things. It could signal that congestive heart failure is beginning with this heart, or it could be that he is now trying for some reason to reject the heart. They repeated the test yesterday but won't have the results until Monday. Again, because of the holiday.

I asked Bill when I took him his meds this morning if he wanted me to call the transplant cardiologist on call at Mayo and see what they suggest or if he wanted to just wait until Monday. I told him it was only Friday and he said he thought he could wait. I told him I didn't know if I could. I'm so stressed right now!!!

He just came out of the bedroom and said he wanted to discuss something with me. He wants to go to Florida. I don't think I can get him to Florida right now, but I can get him to Memphis and let those transplant drs. take a look at him. They can then confer with Mayo better on a plan. We did notice that he was not as winded walking out this morning. On one hand he wants to continue to wait through the week-end, but on the other hand he wants to just get in the car and go. We have decided that we are going to see how he does through the day as far as his breathing goes and tomorrow call Mayo. I told him that if I drive him to Memphis, he will have to go through the emergency room. But, I can take him to our ER, have Mayo call them and tell them to ship to Memphis and he will be a direct admit to the cardiac unit. That is the way it will go and we will take it from there as to how and when we get to Mayo. 

So, we've started the new year with a good cry and a heart to heart talk (no pun intended). I know this isn't the upbeat post, but right now, or at least when I started it, there was nothing to be upbeat about.

We didn't have too much gunfire in the neighborhood last night, far less than usual. The police had put the word out that there would be zero tolerance for gunfire inside the city limits and they would be patrolling the neighborhoods. I heard some, nothing extremely close, and it didn't last long.

I hope your new year is starting out better than ours. I wish you happiness, health, and all things good for the coming year. My word for the year is CHANGE. Or at least I think it is change. My words for the last 2 years have not been good choices. But, I need to make some changes personally, so we will see if I can make it happen.