Rufous McKinney
Senior Member
- Messages
- 13,389
This is so often our given. By agreeing to deal with what needs dealing with, now you will have to recover.
But you'll feel much better with things fixed back up again. So hang in there.
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Mystery: Sudden Worsening P.E.M. - becoming desperate
- Thread starter Howard
- Start date
This is so often our given. By agreeing to deal with what needs dealing with, now you will have to recover.
But you'll feel much better with things fixed back up again. So hang in there.
Judee
Psalm 46:1-3
- Messages
- 4,500
- Location
- Great Lakes
I agree the prospect of going to a deeper level of fatigue than where we are now is always very daunting.
The only thing is, if this is an infection of some sort, addressing that may actually help you come up a couple of percentage points too.
Hoping...
The only thing is, if this is an infection of some sort, addressing that may actually help you come up a couple of percentage points too.
Hoping...
Zebra
Senior Member
- Messages
- 869
- Location
- Northern California
Good on you @Howard for triaging yourself and putting a plan into place for tomorrow. That was no easy feat.
Yes, the hospital stay and its aftermath is going to suck. Big time. I feel for you.
You'll be in our thoughts tomorrow. Best of luck!
Warmly,
Z
Yes, the hospital stay and its aftermath is going to suck. Big time. I feel for you.
You'll be in our thoughts tomorrow. Best of luck!
Warmly,
Z
Hello @Howard....You're probably on your way to or at the hospital by now.
May I caution you not to be a warrior while you're in there? You're a sick man and you need help, so get it while you can. Ask the doctors to smell your stoma....chances are they won't, but will know there is a problem there.
I hope you have every test that can be thought of. And talk to the social worker (ask for her to come by) and see exactly what's available to you in the way of help. Of course you'll need all of your insurance info & the name of the worker...it can get confusing, but please get her name and perhaps your wife can deal with her over her lunch hour.
Surely you can do better than the lethargic help you've been given thus far. No wonder the manager went with you. She doesn't want her help to look bad (an understatement from what you've said). Perhaps they could arrange for a chaplain to visit you at home...never mind you faith, whether your atheist or agnostic, it's comforting.
Besides, he may arrange for a couple of visitors who aren't aggravating to stop by once/twice wk. I have to say that non-denominational thoughts and prayers are somehow comforting. Give it a try, but please don't be Howard the Warrior. You've done your best, now let help arrive and if they want to send you home, beg until it hurts to be kept overnight. It's time. Yours, Lenora.
May I caution you not to be a warrior while you're in there? You're a sick man and you need help, so get it while you can. Ask the doctors to smell your stoma....chances are they won't, but will know there is a problem there.
I hope you have every test that can be thought of. And talk to the social worker (ask for her to come by) and see exactly what's available to you in the way of help. Of course you'll need all of your insurance info & the name of the worker...it can get confusing, but please get her name and perhaps your wife can deal with her over her lunch hour.
Surely you can do better than the lethargic help you've been given thus far. No wonder the manager went with you. She doesn't want her help to look bad (an understatement from what you've said). Perhaps they could arrange for a chaplain to visit you at home...never mind you faith, whether your atheist or agnostic, it's comforting.
Besides, he may arrange for a couple of visitors who aren't aggravating to stop by once/twice wk. I have to say that non-denominational thoughts and prayers are somehow comforting. Give it a try, but please don't be Howard the Warrior. You've done your best, now let help arrive and if they want to send you home, beg until it hurts to be kept overnight. It's time. Yours, Lenora.
I'm sure you are on the edge of your seat
Heading home soon.
Tube replaced. Went well.
No topical infection bedsore (split open, but clean wound)
They wouldn't pursue further based on clean blood work.
Given medicated gauze, ointment.
Tired.
H
Heading home soon.
Tube replaced. Went well.
No topical infection bedsore (split open, but clean wound)
They wouldn't pursue further based on clean blood work.
Given medicated gauze, ointment.
Tired.
H
Judee
Psalm 46:1-3
- Messages
- 4,500
- Location
- Great Lakes
Yes. How did you know?
Happy it went so easily but hoping they treated everything that needs to be treated. (Maybe a little disappointed that they didn't pursue it further.)
Make sure you ask them if you have any other concerns since you're there anyway.
And since you're tired don't feel like you have to give us more updates right away. Just rest.
Rufous McKinney
Senior Member
- Messages
- 13,389
Good news and the worst behind you...just rest up....
Brief Synopsis (final entry)
Heck, this was supposed to be brief, and it's not. It's 784 words. So if you are really really bored, or really really interested, and your PEM is on the wane, by all means, go for it.
Words Inflicted
Exhausting.
THE END?
More Words Inflicted
Kneecaps scraped and bruised, but otherwise, a smooth transport down the stairs and beyond. I do not blame them for damaging me, considering there exist three 90-degree angles to navigate while carrying me down on a tarp.
At the Hospital
Couldn't readily communicate with hospital staff until almost three hours in. Having the office manager from the caregiving agency with me was beneficial. Prior to them allowing him into my room, things started off unpleasantly.
Note: always have someone with you, even a mannequin, it really really helps
Openings
Confirmed clean open wound (split and extending downward from tailbone). Based on blood work, no infection. Area still feels bruised, but I'll have regular nursing visits (going forward - thanks to the office manager accompanying me. He was there most of the day).
Waited eight hours for the tube replacement, which was quite alright.. gave me a chance to recover some physical strength. Napped.
The Tubes, She's a Beauty
The J-Tube replacement came off rather smoothly. The doctor used a different technique than the others, managing to get a fair amount of Lidocaine into the stoma, thus, numbing it up better (If you need details for your feeding tube friends, please ask). Bypassed the fentanyl this time, thus avoiding the unwanted after-effects.
A Discovery, a Theory, and the Steady Beat
What I found most interesting was that upon removing the old feeding tube, and despite having a heart rate well over 100 beats per minute, I DID NOT experience ectopic heartbeats like I usually do.
Anytime my heart rate goes above 91 beats per minute, it skips. But I believe they're releasing pressure and internal fluids through the stoma, my constant intestinal pressure beneath my rib cage (duodenum/transverse colon/stomach area) was also relieved.
So I am almost wondering if perhaps my severe gastroparesis and/or my current blockage (unable to take in any solid foods the past four months), could be caused by this constant pressure into (and underneath) my rib cage. Perhaps my duodenum is so squashed, virtually nothing can pass.
Wouldn't that be something? I will have to research (again) and see if that's actually a thing. It would be nice if I could discuss this theory with an open-minded gastroenterologist, but that's likely an impossibility.
So of course, twenty minutes after the procedure was completed, I was once again having sporadic ectopic heart beats (at 33-second intervals).
Premature Discharge
After that, they tried to send me home without resolving the bed sore issue. So I protested, and they sent a doctor in to see me. She came back, inspected.. left, then came back with specially with medicated gauze pads (and other related supplies) for me to use.. except that I left them on the hospital bed, or in the ambulance, or they flew out the window somehow, while we were barreling down the avenues.
Yes, I sometimes get confused and lose track of things. Oh, and they told me petroleum jelly should work just fine.
Stuck
The only other point of interest (not that any of this is particularly interesting, but of course, I must finish the story.. right) -
Um, the plug would not disconnect from my J-Tube this morning (which is necessary to change out formula and flush the feeding tube system every 8 hours). Yes, it was stuck in place. Like, really really really stuck. Welded in there.
I tried for 20 minutes to disconnect the apparatus, but it wouldn't budge. Then I was concerned that the whole darn thing might pull out of my body if I wasn't careful with my tugging and twisting.
First, I wrapped my heating pad around, hoping the rubber and/or plastic tip would expand. Then, since it didn't work, I tried to ice the darn thing. Then I tried a pair of pliers. More twisting. More dangerous. And then in steps my wife, running late for work. She decides to squeeze, using the pressure already in the tube to force the plug back out the way it came. And after a few spare minutes, it did come out. Hallelujah!
And now I am feeling fine!
I've already written out a 5 billion word essay detailing multiple (positive) social impacts experienced by me. I'll post it over in the usual spot. And yes, it's even a LESS vital read than what you've just read here.
THANK YOU very much for helping me through this life experience. Orchestrating these actions and remembering the details is sometimes overwhelming for me. My brain perceives oddly.
H
Heck, this was supposed to be brief, and it's not. It's 784 words. So if you are really really bored, or really really interested, and your PEM is on the wane, by all means, go for it.
Words Inflicted
Exhausting.
THE END?
More Words Inflicted
Kneecaps scraped and bruised, but otherwise, a smooth transport down the stairs and beyond. I do not blame them for damaging me, considering there exist three 90-degree angles to navigate while carrying me down on a tarp.
At the Hospital
Couldn't readily communicate with hospital staff until almost three hours in. Having the office manager from the caregiving agency with me was beneficial. Prior to them allowing him into my room, things started off unpleasantly.
Note: always have someone with you, even a mannequin, it really really helps
Openings
Confirmed clean open wound (split and extending downward from tailbone). Based on blood work, no infection. Area still feels bruised, but I'll have regular nursing visits (going forward - thanks to the office manager accompanying me. He was there most of the day).
Waited eight hours for the tube replacement, which was quite alright.. gave me a chance to recover some physical strength. Napped.
The Tubes, She's a Beauty
The J-Tube replacement came off rather smoothly. The doctor used a different technique than the others, managing to get a fair amount of Lidocaine into the stoma, thus, numbing it up better (If you need details for your feeding tube friends, please ask
). Bypassed the fentanyl this time, thus avoiding the unwanted after-effects.A Discovery, a Theory, and the Steady Beat
What I found most interesting was that upon removing the old feeding tube, and despite having a heart rate well over 100 beats per minute, I DID NOT experience ectopic heartbeats like I usually do.
Anytime my heart rate goes above 91 beats per minute, it skips. But I believe they're releasing pressure and internal fluids through the stoma, my constant intestinal pressure beneath my rib cage (duodenum/transverse colon/stomach area) was also relieved.
So I am almost wondering if perhaps my severe gastroparesis and/or my current blockage (unable to take in any solid foods the past four months), could be caused by this constant pressure into (and underneath) my rib cage. Perhaps my duodenum is so squashed, virtually nothing can pass.
Wouldn't that be something? I will have to research (again) and see if that's actually a thing. It would be nice if I could discuss this theory with an open-minded gastroenterologist, but that's likely an impossibility.
So of course, twenty minutes after the procedure was completed, I was once again having sporadic ectopic heart beats (at 33-second intervals).
Premature Discharge
After that, they tried to send me home without resolving the bed sore issue. So I protested, and they sent a doctor in to see me. She came back, inspected.. left, then came back with specially with medicated gauze pads (and other related supplies) for me to use.. except that I left them on the hospital bed, or in the ambulance, or they flew out the window somehow, while we were barreling down the avenues.
Yes, I sometimes get confused and lose track of things. Oh, and they told me petroleum jelly should work just fine.
Stuck
The only other point of interest (not that any of this is particularly interesting, but of course, I must finish the story.. right) -
Um, the plug would not disconnect from my J-Tube this morning (which is necessary to change out formula and flush the feeding tube system every 8 hours). Yes, it was stuck in place. Like, really really really stuck. Welded in there.
I tried for 20 minutes to disconnect the apparatus, but it wouldn't budge. Then I was concerned that the whole darn thing might pull out of my body if I wasn't careful with my tugging and twisting.
First, I wrapped my heating pad around, hoping the rubber and/or plastic tip would expand. Then, since it didn't work, I tried to ice the darn thing. Then I tried a pair of pliers. More twisting. More dangerous. And then in steps my wife, running late for work. She decides to squeeze, using the pressure already in the tube to force the plug back out the way it came. And after a few spare minutes, it did come out. Hallelujah!
And now I am feeling fine!
I've already written out a 5 billion word essay detailing multiple (positive) social impacts experienced by me. I'll post it over in the usual spot. And yes, it's even a LESS vital read than what you've just read here.
THANK YOU very much for helping me through this life experience. Orchestrating these actions and remembering the details is sometimes overwhelming for me. My brain perceives oddly.
H
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Hi Howard.....I'm sure you were glad to get into your bed last evening. Still, the blood work may show something and perhaps a doctor will contact you. Glad the ride and ER visit wasn't too onerous.
So the bedsore (or whatever) healed....I'm glad and @Judee , you must tell us about how to make the turmeric paste. @Howard....no fungal infection either? That's really positive news, although the tests may have other answers. I hope note.
How is your mattress at home? I know that I have non-stop trouble with different mattresses, "The Princess & the Pea Syndrome." Is it turned frequently? Does you caretaker (?) put on clean sheets as often as possible? Oh, I'm sure you've thought of all that.
By the way, Time magazine had an article about the severe shortage of nursing home and caretakers in the U.S. at this time. It would seem they aren't paid very much, so we're not getting very much. A shame, to say the least, isn't it? For both patient and caretaker. I mean. It seems our whole medical system and the care of very ill and elderly people is now being rethought. That has to be better news. Take good care. Yours, L.
Well @Howard, your hair sure looks good!! Yours, Lenora
So the bedsore (or whatever) healed....I'm glad and @Judee , you must tell us about how to make the turmeric paste. @Howard....no fungal infection either? That's really positive news, although the tests may have other answers. I hope note.
How is your mattress at home? I know that I have non-stop trouble with different mattresses, "The Princess & the Pea Syndrome." Is it turned frequently? Does you caretaker (?) put on clean sheets as often as possible? Oh, I'm sure you've thought of all that.
By the way, Time magazine had an article about the severe shortage of nursing home and caretakers in the U.S. at this time. It would seem they aren't paid very much, so we're not getting very much. A shame, to say the least, isn't it? For both patient and caretaker. I mean. It seems our whole medical system and the care of very ill and elderly people is now being rethought. That has to be better news. Take good care. Yours, L.
I'm sure you are on the edge of your seat
Heading home soon.
Tube replaced. Went well.
No topical infection bedsore (split open, but clean wound)
They wouldn't pursue further based on clean blood work.
Given medicated gauze, ointment.
Tired.
H
Well @Howard, your hair sure looks good!!
Yours, Lenora
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Yes, I've been told to use petroleum jelly (Vaseline) for a number of things now. It seems to have come back into popularity. I use a new jar each time in case of re-infection. That hated word....or one of them.
The gauze pads were probably the non-stick variety and perhaps your wife could pick some up. I'm just mightily relieved there was no major infection. Smart wife....I hope things go well with the tube from now on. Yours, L.
The gauze pads were probably the non-stick variety and perhaps your wife could pick some up. I'm just mightily relieved there was no major infection. Smart wife....I hope things go well with the tube from now on. Yours, L.
@Howard....thanks for your full report. Smart thing to do. You must feel like a tired, but new man this a.m.
Your mind...well, mine's in about the same place! I was going to suggest that a fairly new gastroenterologist may be more open minded to your questions. They're generally just setting up their practices and are willing to learn and share information. (And they'll spend extra time with you.) If you're lucky, you'll be one of their first patients and you'll be able to deal with anything. Just a thought, of course. Yours, Lenora.
Your mind...well, mine's in about the same place! I was going to suggest that a fairly new gastroenterologist may be more open minded to your questions. They're generally just setting up their practices and are willing to learn and share information. (And they'll spend extra time with you.) If you're lucky, you'll be one of their first patients and you'll be able to deal with anything. Just a thought, of course. Yours, Lenora.
Last edited by a moderator:
Judee
Psalm 46:1-3
- Messages
- 4,500
- Location
- Great Lakes
It's vital because we care so it helps us to know how you're doing...so in that way you could almost consider it a RESPONSIBILITY!!!
er...well, not that you owe us anything but we do care.
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Rufous McKinney
Senior Member
- Messages
- 13,389
Outstanding news.....
Why is that not surprising?
Seems like you do deserve to have such a person.
Rebeccare
Moose Enthusiast
- Messages
- 9,066
- Location
- Massachusetts
We all were! So thank you for updating us; we've been terribly worried.I'm sure you are on the edge of your seat
I don't know...I feel like bringing a mannequin with me to the ER is guaranteed to result in a psych consult! But I'm glad you were able to bring someone good with you, and that this resulted in you getting better home care.
As in, back to your baseline, more or less? No more bad smells from your gut? This makes me very glad indeed.
The tube looks fantastic. No more sweet icky smell! I'm hoping my energy comes back, and I'm especially hoping the feeding tube was the primary cause for all of this.
The bedsore pain is less than ideal, but I've been on the horn with a nursing outfit (and my case manager), and they should have someone here by Monday. In the meantime, they're going to provide care instructions over the phone.
PAUSE
Apparently the search takes quite a while because there are very few bed bound people located 33 miles due north of Sky Harbour Airport (as am I). So I guess my kind of people secretly gather in and around South Phoenix, instead. Heck, I used to gather there too, when I was much younger.