So things didn't get better...I slipped further and last Tuesday I went to my scheduled appointment...when she saw me the choices were go home for a matter of a few hours or days. or come up here where I've been for a week and hope we might stretch that...a bit. My pulmonologist has always played straight with me and though they don't like putting dates on things like this, I kind of asked "days" and got a bit of nod, "weeks" and got a slower nod and when I asked month, there wasn't really one. The primary, much more optimistic is telling me to figure on being at the boy's birthday party at the park next month and watching Indy and Monaco on Memorial Day; that July 4th or another road trip aren't out of the realm of possibility. I'll take whatever I can get, but am still a realist. I'm not sure I'll get here again...between the whirl of family, trying just to deal with a lessened ability and also I have to admit that mentally, the diminished oxygen I'm receiving is having an effect. Before if my sats dropped below 94 I was in pain and at 92 it became intense...a 7 to an 8 on this lovely scale everyone likes. I'd let my numbers rise and then "go" again, or turn it up, or find another cannula. This last few weeks I was up to 4 lines to try and shower.
They have come up with a pain regimen that alleviates that and right now I can be in the low 90's or even the upper 80's and not hurt, so they've been able to reduce my usage back to something more "normal" for someone to have at home. That will help a lot.
The best guess is that the tumor (number I heard the other day was 18cm and quadrupling regularly) is doing some other things as well, or the cancer is spreading and masking itself as the IPF. Not sure how much I'll be able to "get around" once I'm home, but being there is wonderful!
I have most everything dealt with except for tagging some books as to which grandparent or relative they came from; if I can get beyond that I'll try to do it to some of my favorites as well. I found a Library of Congress article that said as long as you use name brand 3M Post-It notes it won't react with any paper or ink; use of any other brand can (and they showed some sad examples of eaten pages).
If we can't deal with it at home then I'll come back here to their care center...it's not home, but still nicer than the ward.
I always envied Bing Crosby, flying over to Spain to play golf with some friends and dropping dead from a heart attack. I know none of us get to choose, but wow...
I've learned much from those I've met here; I've seen the world through eyes other than my own; I've seen things I'd never have been blessed to otherwise. Everyone keeps telling me "you'll be around, you won't be gone"...I'd like to think I'd been that good.
In the settling of things my sister asked me "what about memorials"? I asked what she meant and she said she assumed, since I had said no traditional funeral service, that some people would want a place to send money in lieu of flowers. I told her I'd never dreamed anyone would do that for me!
I thought about it a while and then decided that the "Old Rhinebeck Aerodrome" we visited the last summer would be a most delightful thing I could dream of! You can contribute to maintain the place, the aircraft, etc., you can even look through and pick a particular plane or building. When we were there they had just assembled wings and fuselage on a replica of the "Spirit of St. Louis" they are putting fabric on now built from scratch! There is a Liberty V-12 engine there from WWI that they still run that I love very much, along with lots of aircraft. A hangar always needs patching; there's always a tool someone needs...then there's that original Bleriot they still fly as well! Dottie's personal pet is the new Visitor Center that will have more handicapped bathrooms available and a better location than the current. They had broken ground last I knew and had most of their fund, but things never cost what you think they will, lol!
Thank you all for sharing your lives with me! It's been grand!
May the world be kind to each of you!
alan
Tuesday, April 07, 2015
Wednesday, March 25, 2015
Sometimes I wonder...(thinking of the lyrics to "Stardust")
I slipped out on a bitterly cold evening last month just after I last wrote to attend a ceremony for my youngest grandson as he "bridged" from Cub to Boy Scouts. It was single-digits outside and though it's only 15 feet from the front door to my side of the truck when she pulls in to get me, I got a couple of lung fulls of very cold air that made them ache like they hadn't in ages and for longer than they ever had. Usually the pain subsides in 10 minutes or so; this time it was over a half hour before the ache let go and my O2 saturation percent came back up to 98%.
A few hours later, leaving my son's from the "after" festivities, it was the same thing. When I screw up and make them ache that way it usually takes a few days for the "tired" and the "ache" to let go. This time, not only did it not want to let go, but all of a sudden the machine settings that used to maintain me wouldn't: I needed higher settings, more oxygen, more bottles across the board. I had been showering with 3 oxygen lines; it turned into an almost impossible struggle...
I ended up back on antibiotics as well, because I picked up something that night, but even when they and the steroids started to work, things didn't improve. I figured out management strategies to "get by", sometimes not being able to charge the refillable bottles, using my portable in addition to the house machine during the day.
I saw the heart doctor a week after this began and he explained that when your lungs hit cold air they choke off the bloodflow so you don't lose all your body heat; when your lungs are already compromised, you can't give up any bloodflow because you're already not getting enough oxygen. That made sense; he said it's usually a problem for cold weather joggers and runners.
The same week I saw him the "miracle drug" showed up and I started on it.
4 weeks into it a fever kicked up again; I'd already discussed with the pulmonologist the cautions that were packaged with the new drug about it being a blood thinner and that you should avoid other drugs that are and was told that I needed to do what I need to to control the fever. That worked for a few days; the fever went away with doses of tylenol, aspirin and ibuprofen two hours apart. I stopped those on Saturday.
My lungs produce phlegm from the fibrosis every day; some days it's a "productive" cough and I can get rid of some of it; some days it's not, and I can feel or hear the stuff but it never makes it out. On the new drug things seem to have been much more productive, right up until there was pink on Sunday morning and a brighter red in the early afternoon. It faded; I figured I was off the thinner regimen and it was a fluke; Monday it was back and faded again. Tuesday there was a brighter red and a larger volume of phlegm and I started panicking a bit-perhaps I've seen too many movies with portrayals of TB in the last century, but I ended up calling the doctor. I see her next week anyway, she said as long as it doesn't worsen not to worry and add a chest x-ray to the bloodwork I'm having done before my visit next week.
Today there has been some pink again, but no real "red", so I'm going to take that as a good sign!
I've been spending a lot of time reading this last week and watching old movies. I introduced my granddaughter to "The Philadelphia Story" a few weekends ago and she enjoyed it so much I think "Bringing Up Baby" might be in order next time she comes!
I hope life is being kind to each of you!
alan
A few hours later, leaving my son's from the "after" festivities, it was the same thing. When I screw up and make them ache that way it usually takes a few days for the "tired" and the "ache" to let go. This time, not only did it not want to let go, but all of a sudden the machine settings that used to maintain me wouldn't: I needed higher settings, more oxygen, more bottles across the board. I had been showering with 3 oxygen lines; it turned into an almost impossible struggle...
I ended up back on antibiotics as well, because I picked up something that night, but even when they and the steroids started to work, things didn't improve. I figured out management strategies to "get by", sometimes not being able to charge the refillable bottles, using my portable in addition to the house machine during the day.
I saw the heart doctor a week after this began and he explained that when your lungs hit cold air they choke off the bloodflow so you don't lose all your body heat; when your lungs are already compromised, you can't give up any bloodflow because you're already not getting enough oxygen. That made sense; he said it's usually a problem for cold weather joggers and runners.
The same week I saw him the "miracle drug" showed up and I started on it.
4 weeks into it a fever kicked up again; I'd already discussed with the pulmonologist the cautions that were packaged with the new drug about it being a blood thinner and that you should avoid other drugs that are and was told that I needed to do what I need to to control the fever. That worked for a few days; the fever went away with doses of tylenol, aspirin and ibuprofen two hours apart. I stopped those on Saturday.
My lungs produce phlegm from the fibrosis every day; some days it's a "productive" cough and I can get rid of some of it; some days it's not, and I can feel or hear the stuff but it never makes it out. On the new drug things seem to have been much more productive, right up until there was pink on Sunday morning and a brighter red in the early afternoon. It faded; I figured I was off the thinner regimen and it was a fluke; Monday it was back and faded again. Tuesday there was a brighter red and a larger volume of phlegm and I started panicking a bit-perhaps I've seen too many movies with portrayals of TB in the last century, but I ended up calling the doctor. I see her next week anyway, she said as long as it doesn't worsen not to worry and add a chest x-ray to the bloodwork I'm having done before my visit next week.
Today there has been some pink again, but no real "red", so I'm going to take that as a good sign!
I've been spending a lot of time reading this last week and watching old movies. I introduced my granddaughter to "The Philadelphia Story" a few weekends ago and she enjoyed it so much I think "Bringing Up Baby" might be in order next time she comes!
I hope life is being kind to each of you!
alan
Friday, February 13, 2015
A bit of green is showing in my lawn...
though it's still colder than I'd like outside and going to get even colder the next few days.
I'd never intended to let 2 months slip away without finding my way back in here again, but I've been either busy or miserable, without any in-between. The holidays, the family gatherings, the visitors...the respiratory bug I fought from just before Thanksgiving until the last few days...it's been a lovely winter so far!
Finally I seem to have shaken it though; I finished my umpteenth round of antibiotics a few days ago and though I cough a bit of stuff now and then, it is clear and seems to just be my fibrosis at work instead of anything more sinister! I've seen the pulmonary doctor twice since we last visited and had a follow up with the cardiologist this last week, partly an annual because of my episode 23 months ago and partly because if I can get that new fibrosis drug they wanted an echocardiogram done to make sure everything was OK.
Dottie and all of the kids and grandkids are doing well. It's amazing to have been granted another cycle of the sun to watch everyone grow and change. I was diagnosed 2 years ago December and really didn't figure to still be here; instead I'm really not in bad shape for the shape I'm in!
This last week I've finally been feeling good enough again we slipped out to a few movies. Dottie really likes the "Hunger Games" movies, so I got her to the latest in that franchise, then the next day we saw the final Hobbit movie. Yesterday it was bitter cold again, so instead of going out to the movies I got her to watch the first movie to win Best Picture with me, "Wings". Bill and Laura bought me a BlueRay of a lovely restoration of it to replace my old recorded-off-the-air VHS. Quite a treat, recorded with an orchestra playing the original score. It actually holds up very well across the years!
Still no news about the new drug. The pulomonlogist has submitted paperwork and resubmitted, as have I; we're waiting to hear if there are more hoops to jump through or if the company is going to grant me the drug gratis...I can't imagine many can afford $320 a day for it!
I'm starting to cautiously look towards spring and think a bit about traveling a bit once the snow and ice are done for the year. I saw footage a few weeks ago of someone climbing the ice at Niagara Falls from exactly where we were only a couple of months before that...hard to believe I was there in sandals!
I hope the world is being kind to each of you!
alan
I'd never intended to let 2 months slip away without finding my way back in here again, but I've been either busy or miserable, without any in-between. The holidays, the family gatherings, the visitors...the respiratory bug I fought from just before Thanksgiving until the last few days...it's been a lovely winter so far!
Finally I seem to have shaken it though; I finished my umpteenth round of antibiotics a few days ago and though I cough a bit of stuff now and then, it is clear and seems to just be my fibrosis at work instead of anything more sinister! I've seen the pulmonary doctor twice since we last visited and had a follow up with the cardiologist this last week, partly an annual because of my episode 23 months ago and partly because if I can get that new fibrosis drug they wanted an echocardiogram done to make sure everything was OK.
Dottie and all of the kids and grandkids are doing well. It's amazing to have been granted another cycle of the sun to watch everyone grow and change. I was diagnosed 2 years ago December and really didn't figure to still be here; instead I'm really not in bad shape for the shape I'm in!
This last week I've finally been feeling good enough again we slipped out to a few movies. Dottie really likes the "Hunger Games" movies, so I got her to the latest in that franchise, then the next day we saw the final Hobbit movie. Yesterday it was bitter cold again, so instead of going out to the movies I got her to watch the first movie to win Best Picture with me, "Wings". Bill and Laura bought me a BlueRay of a lovely restoration of it to replace my old recorded-off-the-air VHS. Quite a treat, recorded with an orchestra playing the original score. It actually holds up very well across the years!
Still no news about the new drug. The pulomonlogist has submitted paperwork and resubmitted, as have I; we're waiting to hear if there are more hoops to jump through or if the company is going to grant me the drug gratis...I can't imagine many can afford $320 a day for it!
I'm starting to cautiously look towards spring and think a bit about traveling a bit once the snow and ice are done for the year. I saw footage a few weeks ago of someone climbing the ice at Niagara Falls from exactly where we were only a couple of months before that...hard to believe I was there in sandals!
I hope the world is being kind to each of you!
alan
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