Sunday, Oct 5
John left this morning for trail work at Franklin Falls. You learned about that in last week’s blog – but not that what they were constructing is called a trail turnpike. At the end of the day, photo on left, John’s crew had built and placed 2 log rectangles in a slightly sloping (and often wet) section of the trail. John is straddling a ditch on the uphill side, and as that was dug (mostly by Kaylee – in orange), rocks were tossed into the center section. The pieces are laid end-to-end with cross pieces seen just in front of Kaylee’s feet. Large rocks are put in first, then smaller ones to fill the voids. The work was not finished at the end of the day so the section got some flagging and waited for another crew.
On the right and a week later, John is pictured on the finished turnpike near the upper end of one of the boxes. The 2 cross pieces, and all the rocks, are covered with gravel brought from the parking lot with a powered totter. Use Google search with images and this set of words – trail log turnpike – to see lots of other related photos.
Monday, Oct 6
This morning started out early with the annual maintenance visit for our Culligan systems. Turns out when we were having all the trouble last November with our water-holding tank, the repairman with John’s assistance bypassed the softener and we did not realize it, until today. That means we have had no softened water for almost a year. Guess that’s why we weren’t using salt!
I have had all sorts of problems with the CPAP, but made it through last night without quite as bad an experience as the night before. Still cannot get my pillow positioned right with all the paraphernalia around my head. I did take my friend’s advice and set up the mask ahead of going to bed in the dark, and then connecting the air hose at the start of the night. If I have to get up to potty in the night, I only remove the air hose and not the entire mask. I also changed the crazy Velcro settings that were way too tight and managed to stay in bed for 7 hours, but wasn’t sound asleep by any means. I had many unusual dreams about things (all okay) but that I wouldn’t normally have. I don’t think I remember any nightmares in recent years.
The pillow I was/have been using and even had at both overnight sleep tests, will not work with the headpiece on this Eson mask. I switched to a smaller airplane one, and think I will switch even further down to one from economy class that is not as big. I was flying first class on someone else’s dime when I got the larger one.
Tomorrow is also my day to go to the sleep-doctor and the respiratory gal if I can call today and arrange it. I want to switch headgear to a friendlier one. My claustrophobia is getting to me. I called at 9:00 a.m. and never heard back. Called again at 1:15 p.m. and found their computer system was down, so apparently my message was never delivered.
We had one of our largest tomatoes for BLTs today. It is over 1.25# and here is my proof. John says it is not our largest, and we are not sure of its name. We had three large varieties, Big Boy, Celebrity, and Fantastic, which we think this is. The name above the plant was blown off the fence–perhaps it is called Fantastic or Super Fantastic, which they certainly are.
Tuesday, Oct 7
Good news for a change on my CPAP machine/mask experience. We left at 11:45 today and went to my sleep doctor’s office (45 mi away) for a consultation with the doctor on the results of my second sleep test that occurred 9/20. First, I had to go through an assistant who asked me to describe all my sessions with the machine. I did, and I also asked her if she could read my SD card and give me a report to be sure it was recording properly. She said she couldn’t because their computer system was down. I asked what the software was and she said Encore. It was obvious I was extremely disheartened with the news. She said she would discuss what I had told her with the doctor. Before she left, I gave her a copy of the color graphs I had from data on my own 3 days on the machine, but was hoping to get a check on their software with my SD card. I had printed and taken the results of a SleepyHead graph (from my data) provided to me by my technology aware friend from my long ago Idaho days, who also uses a CPAP machine of the exact same model, but with a different mask. She took them away and the doctor came back and had the graphs with him.
The beginning of the conversation with him was if I had started using the mask and my reactions and response. That set me off on a rant. He asked what was wrong with my experience. I’d already shared all this with the assistant, but I gave him a playback of the past 3 days of pain, suffering, and my lack of decent sleep. After listening to all my complaints, in a very concerned and understanding voice, he said, “Well, we need to get you a different mask that is more comfortable.” Then he told me my results (which I already knew because I had requested from a technician at the sleep center, that both report copies be mailed to me, and I had studied them in detail. I remembered many of the details, some of which I said to him, in the process of the description of my second sleep test. I asked him about the timing on my awake time and if the ramp (controlling the air pressure was reset). As he looked at the data, he observed that yes it was, but that I had only gotten 5 minutes sleep in that last couple hours from waking up and going potty. My total sleep time for the whole night was 3 hrs 14 min. I knew that from the reports, and I asked him if the sleep time was sufficient for useful data. He seemed surprised I knew the timing and said, “You are completely right.” (I doubt he knew I had seen the results). He also mentioned that it was more than enough time for them to gather what they needed. He continued discussing my situation, saying I did not have a serious sleep apnea problem in the first test (nor the second) with the CPAP in place). However, I do have a serious problem that might affect my heart, with my blood oxygen saturation level lowering to 79%. On the second test, it came up to a minimum of 89% with the CPAP engaged and for all but one minute of my time, it was in the 90s. For that reason alone, I am a candidate for a CPAP machine because of my heart history. Related reading at this link: Hypoxemia
During the time we were visiting, the assistant returned and asked for my SD card, as their computer, like Lazarus, had come alive. She took it away and returned with the report. Meanwhile, he had looked at the graphs I brought in, and was happy to know I was going to be able to keep track of my own statistics and that I wanted to. He mentioned that he was not familiar with SleepyHead, but he thought there was an alternative available through the Philips Respironics folks website. I have not looked yet since coming home. I did ask him if I could get a copy of the software; he said no, because it allowed machine changes to be made and they did not want people messing with the settings. (I realize I can also make setting changes on the machine, but am not supposed to.) In parting, he said I was proceeding well, and to keep it up with the trying the new mask; that slowly my nights would be better and I would get used to the system. He gave me 3 possible ones to consider: a nasal pillow (made by ResMed), Nuance Pro, Swift Fx, and WISP. That first one was good to hear, because I have one made for a female for my old machine. The last one was great to hear because that’s the style my friend has and I had seen a picture of his face with it on his head.
With all that news, I thanked him and ask if he could Fax the prescription over right away so I could call the Medical Supply place to go by and pickup a mask on the way home. No problem, he would. He wants me to come back in December, but I can call anytime with questions.
From there we drove to Costco for gasoline ($3.399/gal), late lunch, and shopping for a few things. While sharing a Polish sausage, piece of combo pizza, and a very berry sundae (made with yogurt), I called the Medical Supply place about the CPAP mask change need. I got a very helpful person, Alyssa, and I first asked for my Respiratory Therapist, who wasn’t there. Then I asked for her boss, by name, because we had met him last week. He was not there either, so she asked if she could help. I said, “I surely hope so.” I told her we had just come from my sleep doctor and he had faxed my prescription over for a change in mask(s). She said she would check to see if it was in. It was, so she told me to drop by and try them on to see which I wanted. (I could only take one, but had a choice of 2 of the 3 mentioned above.) I turned in my Eson mask. Once done in Costco, I drove back by the place. I had carried along my nasal pillow ResMed mask that came with my CPAP machine. I couldn’t get it to fit on my machine, so I hoped I could get a converter. I also had my new machine, and the mask along with me. We walked in and there were 4 women present. I asked which one was Alyssa. Alyssa had just gone back to the warehouse. I said — oh my, and proceeded to tell one my story. Her name is Kelsey. She listened and said she could check and help me. Meanwhile another gal, Alejandra found two masks on the counter between her desk and the missing Alyssa’s desk. We decided they were meant for me. One was a ResMed and the other a WISP. When I saw the ResMed (nasal pillow), I asked if it had changed much over the years, and they said, not really. I pulled out my old one and ask Kelsey if she could look at the tubing to see if I could maybe get a converter for it to fit my machine. She pulled out a piece of connecting plastic from the hose, and hooked it right up with the hose on the new one. I didn’t realize that part was removable. So, that fixed it and made it usable on my new machine. I knew I wanted to take the WISP so we went over to fit it to my head and nose. There are 3 nose sizes. Petite, S/M, and XL. She looked at me and said you probably will take the petite. I laughed and said I have never been a petite in anything in my life. We put it to my nose, and she measured (by looking), and said, that’s perfect; you have a small nose. Then to satisfy my curiosity, I tried the next size up, and it was too big. It was probably the size on the Eson, or possibly larger. Regardless, I was happy, and she said, “I will go in the back and find you two other petites you can take along. You’ll want to change them once a month, and when you come back in 3 months, we’ll give you 3 new ones.” The last thing that happened was I mentioned the plastic on my face would likely irritate me. She said, “Oh, I can go see if I have a “fabric” frame and change it. Sure enough, she did. While still on the discussion of plastic, I asked her how best to clean the nosepiece. She said — didn’t your technician give you a “can” of wipes when she fitted you for the mask last week. Nope. She did not, and John was there to agree. She said, “Well, she should have. I will get some for you (they are called CPAP Mask Wipes).” I have now heard from my friend there is also a cleaning spray one can get.
Wednesday, Oct 8
Reporting in this morning on my sleep last night with the new WISP mask for my CPAP machine. Last night I started with resetting it to work right with the machine. It still is probably a little tighter than necessary, but I had to tighten it to keep it from leaking. It is SO much better than the previous one. I can touch my eyes and even intake water from a glass without removing the mask. It won’t just slip over my head, however. I have to unhook one side. I made it 5 hours before having to get up, and then once up, I decided my nose needed to be blown and my eyes needed some drops, and my head needed a rest from the head gear (even though it was much better than the first mask). I went back to sleep and got about 2.5 hours more sleep without the mask.
Being Wednesday, I’ve got a busy day. Food bank music and SAIL exercise class are on today’s agenda. I carried some tomatoes and other produce to a few folks. One house on my way to town I left some onions, squash, tomatoes, and apples, and in exchange received two jars of plum preserves from some plums we had shared. From there on to the Food Bank where I gave more tomatoes and apples to my banjo buddy who with me entertains the Soup Kitchen crew. Today was especially neat because while we played Five Foot Two, the office assistant stood up and started doing a Vaudeville routine. She grabbed a broom and borrowed a hat from a patron. She got a roaring ovation. Then we entertained for over a half hour, and had many people singing along. It was a fun day. For lunch today, they fixed a Shepherd’s Pie that was scrumptious. It was baked in mashed potatoes, with carrots, yellow squash, and included very tender roast beef. They served some sort of squash, cut up with dark green peeling and light yellow inside, but I didn’t like it. Then a nice green salad with cherry tomatoes, with parmesan sprinkled on top, and for dessert, they served an apple chocolate sauce covered cake. We visited with one of the patrons as we ate, and he said he was going to his car to get his guitar and serenade us while we ate. He plays his guitar left-handed. The first song he did was one he wrote himself. It was quite well done. Then his second song was a Roger Miller song, and he did that well too. That encouraged a couple of people at our table to talk about how much music makes the world go round and makes it a happier place for people. From there, I took one of my graduate student friends out to my car and shared more of our tomatoes and apples. On to SAIL class with more tomatoes and apples. On my way in, I gave a large tomato to the bus driver (from Hope Source that gives rides to disabled people). He was surprised and happy to receive it. Some of the biggest ones really excited people and they went quickly, one each to several people. There were only 3 apples left at the end, so I asked a gal who depends on a walker and a ride by the Hope Source folks, with a lift for wheelchairs and walkers on a bus, if she wanted the 3 little tasty apples. She did, so I found a bag to put them in for her. I left there with my planned leftover box of large, medium, and small cherry and yellow pear tomatoes for another music group member who cannot be there tomorrow, and their house is on my way home.
Once home I decided to try out my other CPAP mask (a nasal pillow one) that I got free with an older machine, now that I had the ability to connect to my new machine which records statistics on an SD card. That worked well, so I will use it tonight to see how I can get through the night. It is MUCH more lightweight than any of the other masks, and I assume will be my mask of choice for most of my time. We’ll see. I still have to try the WISP again to be sure to get its head gear completely adjusted to not cause me any discomfort when using it with my favorite pillow.
Thursday, Oct 9
Memories of last night’s horrible CPAP mask experience:
(1) 11:30 – 2:00 used the ResMed from a previous purchase from this provider (that was given to me). It is a ResMed Nasal Pillow model.
(2) 2:10 to 5:30 used the “new” WISP mask again.
Regarding (1) Okay. I tried setting up the ResMed mask earlier in the day. Tonight I started with it adjusted and reclined on the pillow. The back white plastic piece is bumpy and painful. The upper headgear and facial gear straps are covered in cloth. Overall it is better (less intrusive) than the WISP, however the nasal pillow didn’t leak air while I was sitting, yet, it did while in my sleep position. I had to tighten the headgear to manage the leaks. I could not go to sleep. There seemed to be air escaping from the connector to the nasal tube. As well, I had trouble with air escaping my mouth on its own, and not because I was opening it. It was as if it was forcing it to open. I did my best to try to make this work from 11:30 to 2:00, but finally, totally exhausted, I gave up and switched to the WISP.
Regarding (2) The WISP mask seemed okay at the start, but still difficult with having pressure from the pillow on the back piece of fabric gear. I’m going to change to a small foam pillow tonight. I had more trouble with air leaking from the actual bottom side of the petite nosepiece plastic when turning my head ever so slightly. I managed to make it until 5:30 and then removed and slept w/o a mask until 10:00 a.m. (with a short wake-up when John got up).
Talked to my neighbor Jerry Anderson this morning. Jerry is the one I exchanged dates for doctor visits with because he goes south for the winter and was running out of time here. I’ve had his cell# and now have his address in AZ. He seems to have more apnea symptoms than I do but comparing mask issues can still be useful.
Being a Thursday, I went to play music, today at the Rehab. We had a great turnout of players and audience. Megan was able to be there with her big bass, Ellen on clarinet, me on fiddle, our new singer Bob (from the Food Bank), Evelyn on banjo, Gerald on Guitar, Manord on his banjo guitar, Maury on guitar, and Minerva on guitar. We made lots of music and had a lot of participation, including our little walker-supported and singing dancer, a resident named Helen. What’s so cool is she knows the words to the songs and dances along singing. After we played, I shared 4 types of tomatoes with the group. From there off to Briarwood to deliver more tomatoes, and got two blueberry muffins from a resident in return, on to the Senior Center to take a little sack of yellow pear (small) tomatoes to Katrina, who cannot have red tomatoes because of the acid.
Finally, I stopped by Pam’s (the bulk harvest contact) to pick up 25# of potatoes but ended up with ~35# for $2.00 ($.05/pound is not a bad price). The remainder of my $2 goes to pay for potatoes to be donated to the Food Bank. When I was there, Pam had a back trunk full of bags of potatoes for them. I guess my donation would pay for 6# of potatoes. Rather amazing. These are from the volunteer efforts of a local LDS church. Anyone in the community is able to participate, and we have for several years. We had a LDS band member who invited our group to his ward’s potlucks, celebrations, and chili feeds — we played music in exchange for a good meal. This was an outgrowth of that connection and continues after his death.
Back to the CPAP affair:
On my way home, I called the medical supply place with a question about my CPAP mask. I left my number and a request for Kelsey to return a call. I was probably 7 minutes from home, but I left both numbers. As I parked my car at home, the cell phone rang. They could not put me in touch with her, but tried to help me. I would have rather talked to Kelsey, but I tried to explain my question. The woman I had on the phone’s interpretation of their policy of trading masks was that only one trade was allowed in the first 30 days, and I had just used mine this week. That is not what I thought after visiting on Tuesday. Kelsey will return my call tomorrow morning. Meanwhile, the other helper answered my question about the other masks I had not taken. I was under the impression I could only evaluate one at a time, and therefore I could bring this one back if it didn’t work (next Tues). That mask was by ResMed and is a nasal pillow type called a Swift Fx. I have my fingers crossed for a call in the morning.
Friday, Oct 10
Goodness… another rough night with the CPAP. This time I started with the new WISP mask on at 11:00. I slept intermittently, awaking at 1:10 and at 2:10. I made a few adjustments for a leaking around the lower part of my nose piece, which seemed to relate and depend on my position (best with head straight ahead–not to either side). For the last 4 years since my illness, I have slept on my back with an upward tilt. I USED to sleep on my right side. At 2:10 I awoke and had to go potty– had a runny itchy nose, and completely readjusted all 4 headpieces. I needed to put fluid (moisture tear drops) in my eyes, and dry my nose. I decided the mask had gotten off center, and that’s likely why the leakage was occurring. I changed my pillow from the little foam I started with back to my normal one. At the first, my air was doing fine. When I tightened the 4 straps, I put more pressure on the fabric on my cheeks. I think that mask will not work because with the Cherokee Indian blood in me, I have high cheekbones that get in the way of those facial straps to the nosepiece.
I honestly believe I never got back to sleep. I noticed the times and at 30 minutes and 45 minutes and I hit the ramp to reset the pressure with hopes I could fall asleep more easily. I was still fighting the mask at 4:30, when I gave up, and removed it. I knew I had to have some sleep to get up and travel to the doctor with John for his visit to an internist, regarding a colonoscopy. I went right to sleep and slept for 3 hours. I am tired now at the end of the day, because I never took a nap.
Morning call to my CPAP medical supplies provider. I asked to speak to the gal I couldn’t reach yesterday. She wouldn’t be in until noon, so I decided I would call back after noon. Meanwhile, I got a call from Alyssa prompted by my late afternoon call yesterday. This was a wonderful surprise, but I was running out of time to talk for needing to go with John to town. However, she listened to my sad story of woe and impressions of what I thought was supposed to happen, and she said not to worry. They wanted me to be happy with a comfort zone that allowed me to use the machine. While normally I would only get one change of mask within the first 30 days, they would make an exception and for me to come by Tuesday, while down there to see my cardiologist, and they would fit me for the lighter head piece mask, Swift Fx, by ResMed with the nasal pillow feature. A big burden was lifted and I thanked her and told her how much I appreciated all the support she had given me, starting last Tuesday. She told me they could not resell the mask once it was used. I imagine they can rent it out, however. I think I will ask if they can honor a doctor’s prescription, maybe paid for by my secondary insurance as a mask to switch with in the future. I would prefer having at least two masks, depending on my mood, or even if I switch to the nasal pillow and decide I don’t like the nose part of that one. I need to ask if I can change to a new mask at my 3 months time. They are supposed to change every 3 months on the rental agreement. I don’t know if it is a change and I kept the old mask, or an exchange and I have to turn in my current mask. So much to learn. However, I’m happy to be looking forward to the change this Tuesday after my cardiologist appointment. Meanwhile, I will keep trying to use the mask until Tuesday.
Saturday, Oct 11
First, I need to review my CPAP experience last night. I put on my mask about 11:00 and adjusted it in front of a mirror to be sure I was symmetrically set up, unlike last night. Problem always is that the reclining sleep position causes differences in the fit. I awoke hourly, and had a few noises to contend with. I may have made a strap adjustment. Mostly, the sound from the machine was the normal inhale sound and exhale sound the unit makes…sort of a groan in two tones. Around 3:00 I awoke to high-pitched squeaky sound from the nosepiece. I shifted the nosepiece and finally got rid of the noise. Then, however, by 4:35, I had to get it off my head. I was not able to continue. So, then I continued without the mask and slept until 9:00, with a slight awake time at 7:00. I’m much more rested than yesterday.
Early morning before the wind started we took a walking tour of the Northeast Woodlot on our property. We have small wooded areas on all sides except the Southeast side. I shall give you a small picture description of our route.
We started on our way for John to show me the very large cottonwood tree that fell in yesterday’s winds while he was working relatively close by. Behind him, he heard the cracking of the falling tree, and scurried in the other direction. Sadly, it did not come all the way down, but hung up on two other trees (one young and one near dead itself). The combination is hazardous and there is no way for John to remove any of it. The trunk of the big dead tree (about 3 feet thru) failed about 4 feet from the ground – sort of like breaking a bread stick. When John lived with his parents, his mom would claim anything like this leaned toward Fisher (small country crossroads). This one actually leans toward Seattle, or mostly west. He also showed me some of his handiwork near the neighbor’s fence line where he has been cleaning off trees that have fallen on the old fence. I wanted to take some photos of the autumn colors, although they do not compare to the beautiful pictures below from friends in New Jersey and Ohio (but of a place in West Virginia).
Here you go: First, the lovely yellow cottonwood leaves around the little irrigation stream on the NE side of our property.
The partially fallen tree.
John is clearing some of our property to have a reduced fuel load if there is a fire but in this section he is hoping to prevent another “tragedy of the fence line.” The photo below is of the partial skull of a small deer. Near the tree (above) and old barbed wire fence has been nearly flattened by fallen trees. There are many wild roses and others sorts of shrubs there. We think the deer bounded into this mess and could not get out, thus dying there.
In the photo below, the 3rd log from the left (smallish one) was across the fence and that’s where the deer was found. [Smaller trunks on the right with bark are from the clearing and thinning operation of 2013.]
Growth is relentless and the leftovers from downed trees makes a nice pile and that makes a place for the quail to go. We’ve many such piles, and lots of quail.
The foreground plants are rabbitbrush. The blooms are now old but 3 weeks ago they were still being visited by bees.
Winds got to 39 mph gusts twice today and we also got .02″ of rain at the airport (5 miles south). I ran out with my rain jacket and moved under the eaves some boxes of magazines and other things from the garage that didn’t need to get wet. John worked through it down at the lower end of the pasture. Says he was under Alder trees and was somewhat protected. Walking back would have just gotten him wetter. He didn’t go to Franklin Falls today – poured there – but will go Sunday. It is not to rain then.
The next photo is from a morning email from Bill Howard (our best man). He describes it: We are currently vacationing at Pipestem State Park in south-central West Virginia; the fall scenery is magnificent. Yesterday, despite steady rain, we took a long hike in the woods.
Below is from another email this morning — it’s from Elise my friend in Andover, NJ, actually taken at Heater’s Pond, in Ogdensburg, NJ, 10/11/14. She took on a nice hike around a lake about 10 mi from her home, in northern New Jersey.
Hope your week was fine.
Nancy and John
Still on the Naneum Fan