Re: [QUAD-L] Breathing Probnlem

[Jeffrey Gaede]

 Hi, Greg. I was also wondering something after speaking with someone about 
your email over the weekend. You mention going back to this ablation and how it 
seems like everything started after that procedure approximately 8 months ago. 
Then at the bottom you mentioned that you get exhausted and haven't been able 
to go out for almost 3 years. I'm just curious about the tie-in of the ablation 
8 months ago but having this difficulty breathing to the point of not going out 
for 3 years? Jeff

On Monday, January 10, 2022, 08:49:16 AM PST, Aaron Mann 
 wrote:  
 
 Greg, so sorry to hear you're going through this. I can't remember if I 
brought it up before, but have you had a MRI of your injury site done? Looking 
for possible spurs growing into your spinal cord. Probably 25 years ago a buddy 
of mine was having issues with his arms and breathing. After looking at over 
everything they did a MRI of his spine where he had his injury and found that 
there were bone spurs growing into his spinal cord at the injury site. 
Apparently, this is something that can occur on some of us.

I will definitely keep you in my prayers and hope that our doctors keep on 
hunting for what may be going on. Have you reached out to actual rehab centers 
to try to get their specialists involved?
 Aaron Mann

On Tue, Jan 4, 2022 at 1:20 PM Eric Olson  wrote:

How frustrating!  I wish I had answers or even suggestions.  When you first 
told us about this, I thought it was a heart problem.  I'd suggest a second 
opinion, but it sounds like you've already done that.  I know this doesn't help 
but I'm praying for you 

On Mon, Jan 3, 2022 at 6:53 PM Greg  wrote:

  
 Just spent another three days in the hospital because of my breathing problem. 
I'm having a hard time inhaling without there being heavy pressure. And 
breathing like I just run a marathon. This time they did another CAT scan and 
at least found out my lung blood clots are gone. They also did a heart Echo, an 
ultrasound of my heart and it came out fine. They also did a sniff test, and it 
showed my diaphragm was pretty good. When I breathe feels like a rubber band 
around my chest. Then I start breathing very heavy and my shoulders go up and 
down just cuz it's so hard to breathe. It started seven or eight months ago, 
right after I had an ablation of my heart to fix a flutter. I had to be 
intubated, and right when I came out I was breathing like this and they thought 
I had too much CO2. So I was on a respirator for a week or so. But after that I 
still have the breathing issues. Since then I've had to be on a respirator at 
night just to help me breathe easy enough to sleep.
 
 I've been to at least three lung doctors, a couple different heart doctors, 
the neurologist, a blood doctor, the quad doctor. No one can figure it out.
 
 I thought maybe it was just getting older, muscles and lungs getting old, and 
my spine is curving a bit, but it happened so fast right after the heart 
ablation.
 
 I am scheduled for one more test, a stress test on my heart, I just hope they 
can find something. I can't keep breathing like this it's constantly hard to 
breathe and then gets really hard times. Like I've run a marathon with someone 
sitting on my chest.
 
 About 3 years ago I had a pleural effusion, where fluid fills up between your 
lungs. It kept coming back and I wood drain about a liter and a half a fluid 
once or twice a week. But I had a procedure to fix it. I keep saying that's 
what it feels like, but they all keep saying there's no fluid anymore in there.
 
 I get so exhausted just typing a few words, haven't been able to go out for 
almost 3 years. Just too tired and breathe too hard.
 
 Any ideas,
  thanks Greg
 
  

  

Re: [QUAD-L] Breathing Probnlem

[Aaron Mann]

Greg, so sorry to hear you're going through this. I can't remember if I
brought it up before, but have you had a MRI of your injury site done?
Looking for possible spurs growing into your spinal cord. Probably 25 years
ago a buddy of mine was having issues with his arms and breathing. After
looking at over everything they did a MRI of his spine where he had his
injury and found that there were bone spurs growing into his spinal cord at
the injury site. Apparently, this is something that can occur on some of us.

I will definitely keep you in my prayers and hope that our doctors keep on
hunting for what may be going on. Have you reached out to actual rehab
centers to try to get their specialists involved?

Aaron Mann


On Tue, Jan 4, 2022 at 1:20 PM Eric Olson  wrote:

> How frustrating!  I wish I had answers or even suggestions.  When you
> first told us about this, I thought it was a heart problem.  I'd suggest a
> second opinion, but it sounds like you've already done that.  I know this
> doesn't help but I'm praying for you
>
> On Mon, Jan 3, 2022 at 6:53 PM Greg  wrote:
>
>>
>> Just spent another three days in the hospital because of my breathing
>> problem. I'm having a hard time inhaling without there being heavy
>> pressure. And breathing like I just run a marathon. This time they did
>> another CAT scan and at least found out my lung blood clots are gone. They
>> also did a heart Echo, an ultrasound of my heart and it came out fine. They
>> also did a sniff test, and it showed my diaphragm was pretty good. When I
>> breathe feels like a rubber band around my chest. Then I start breathing
>> very heavy and my shoulders go up and down just cuz it's so hard to
>> breathe. It started seven or eight months ago, right after I had an
>> ablation of my heart to fix a flutter. I had to be intubated, and right
>> when I came out I was breathing like this and they thought I had too much
>> CO2. So I was on a respirator for a week or so. But after that I still have
>> the breathing issues. Since then I've had to be on a respirator at night
>> just to help me breathe easy enough to sleep.
>>
>> I've been to at least three lung doctors, a couple different heart
>> doctors, the neurologist, a blood doctor, the quad doctor. No one can
>> figure it out.
>>
>> I thought maybe it was just getting older, muscles and lungs getting old,
>> and my spine is curving a bit, but it happened so fast right after the
>> heart ablation.
>>
>> I am scheduled for one more test, a stress test on my heart, I just hope
>> they can find something. I can't keep breathing like this it's constantly
>> hard to breathe and then gets really hard times. Like I've run a marathon
>> with someone sitting on my chest.
>>
>> About 3 years ago I had a pleural effusion, where fluid fills up between
>> your lungs. It kept coming back and I wood drain about a liter and a half a
>> fluid once or twice a week. But I had a procedure to fix it. I keep saying
>> that's what it feels like, but they all keep saying there's no fluid
>> anymore in there.
>>
>> I get so exhausted just typing a few words, haven't been able to go out
>> for almost 3 years. Just too tired and breathe too hard.
>>
>> Any ideas,
>>  thanks Greg
>>
>>

Re: [QUAD-L] Breathing Probnlem

[Eric Olson]

How frustrating!  I wish I had answers or even suggestions.  When you first
told us about this, I thought it was a heart problem.  I'd suggest a second
opinion, but it sounds like you've already done that.  I know this doesn't
help but I'm praying for you

On Mon, Jan 3, 2022 at 6:53 PM Greg  wrote:

>
> Just spent another three days in the hospital because of my breathing
> problem. I'm having a hard time inhaling without there being heavy
> pressure. And breathing like I just run a marathon. This time they did
> another CAT scan and at least found out my lung blood clots are gone. They
> also did a heart Echo, an ultrasound of my heart and it came out fine. They
> also did a sniff test, and it showed my diaphragm was pretty good. When I
> breathe feels like a rubber band around my chest. Then I start breathing
> very heavy and my shoulders go up and down just cuz it's so hard to
> breathe. It started seven or eight months ago, right after I had an
> ablation of my heart to fix a flutter. I had to be intubated, and right
> when I came out I was breathing like this and they thought I had too much
> CO2. So I was on a respirator for a week or so. But after that I still have
> the breathing issues. Since then I've had to be on a respirator at night
> just to help me breathe easy enough to sleep.
>
> I've been to at least three lung doctors, a couple different heart
> doctors, the neurologist, a blood doctor, the quad doctor. No one can
> figure it out.
>
> I thought maybe it was just getting older, muscles and lungs getting old,
> and my spine is curving a bit, but it happened so fast right after the
> heart ablation.
>
> I am scheduled for one more test, a stress test on my heart, I just hope
> they can find something. I can't keep breathing like this it's constantly
> hard to breathe and then gets really hard times. Like I've run a marathon
> with someone sitting on my chest.
>
> About 3 years ago I had a pleural effusion, where fluid fills up between
> your lungs. It kept coming back and I wood drain about a liter and a half a
> fluid once or twice a week. But I had a procedure to fix it. I keep saying
> that's what it feels like, but they all keep saying there's no fluid
> anymore in there.
>
> I get so exhausted just typing a few words, haven't been able to go out
> for almost 3 years. Just too tired and breathe too hard.
>
> Any ideas,
>  thanks Greg
>
>

[QUAD-L] Breathing Probnlem

[Greg]

Just spent another three days in the hospital because of my breathing 
problem. I'm having a hard time inhaling without there being heavy 
pressure. And breathing like I just run a marathon. This time they did 
another CAT scan and at least found out my lung blood clots are gone. 
They also did a heart Echo, an ultrasound of my heart and it came out 
fine. They also did a sniff test, and it showed my diaphragm was pretty 
good. When I breathe feels like a rubber band around my chest. Then I 
start breathing very heavy and my shoulders go up and down just cuz it's 
so hard to breathe. It started seven or eight months ago, right after I 
had an ablation of my heart to fix a flutter. I had to be intubated, and 
right when I came out I was breathing like this and they thought I had 
too much CO2. So I was on a respirator for a week or so. But after that 
I still have the breathing issues. Since then I've had to be on a 
respirator at night just to help me breathe easy enough to sleep.


I've been to at least three lung doctors, a couple different heart 
doctors, the neurologist, a blood doctor, the quad doctor. No one can 
figure it out.


I thought maybe it was just getting older, muscles and lungs getting 
old, and my spine is curving a bit, but it happened so fast right after 
the heart ablation.


I am scheduled for one more test, a stress test on my heart, I just hope 
they can find something. I can't keep breathing like this it's 
constantly hard to breathe and then gets really hard times. Like I've 
run a marathon with someone sitting on my chest.


About 3 years ago I had a pleural effusion, where fluid fills up between 
your lungs. It kept coming back and I wood drain about a liter and a 
half a fluid once or twice a week. But I had a procedure to fix it. I 
keep saying that's what it feels like, but they all keep saying there's 
no fluid anymore in there.


I get so exhausted just typing a few words, haven't been able to go out 
for almost 3 years. Just too tired and breathe too hard.


Any ideas,
 thanks Greg

Re: [QUAD-L] Breathing

[Greg]

Thats how I feel, my mother has it.
But the ER, heart, and lung doctors say my heat and lungs are in great 
shape.


Greg

On 7/29/2021 10:18 AM, Eric Olson wrote:

Greg,

I had a diaphragm pacer implanted about 20 years ago.  They never 
could get it to work.  They said I was an "anomaly"  You sound like 
someone with COPD


On Tue, Jul 27, 2021 at 11:04 PM Jim Lubin > wrote:


I knew someone who was a C2 quad dependent on a vent to breathe
and changed to a diaphragm pacemaker. She wrote an article about it
https://files.wearesrna.org/newsletters/j5/journal-5-11.htm


She suffered from depression and stopped eating then passed away a
few years ago.

On Tue, Jul 27, 2021 at 5:28 PM Greg mailto:g...@eskimo.com>> wrote:


I'm still having problems with my breathing, I'm not on trech
now, I was last year for a week or two. I am on a respirator
but only at night, sometimes during the day if I'm really out
of breath. I've been to so many doctors they just can't find
my problem. My oxygen levels are fine, but I feel like I'm out
of breath. Sometimes it feels like a heavy chest, sometimes I
feel like I've been running around the block, and other times
I just don't feel like I'm getting air.

My next test is an EMG. To test the diaphragm for electrical
currents. And they also talked about a sniff test.

My breast feel like they're big enough, I'm just breathing
real hard. I have had blood pressure issues, often in the
70s/40s. So I am taking a blood pressure medication.

They're also talking about a diaphragm Peacemaker. Is anyone
ever had that or know someone who has? I worry that will make
my breathing not natural, like making me take breaths when I'm
trying to breathe out xcetera.

It all started the day after I had a heart ablation to fix
A-Flutter on my heart. But that shouldn't have anything to do
with it, except I was intubated. I left the hospital and had
to go back that night my breathing was so hard. They thought
it was a CO2 buildup, but that's gotten a lot better.

I haven't had a good breath in about 2 months now. At least
one that felt normal. I don't know what's worse not breathing
well for being on that darn ventilator. I don't want to go to
trech again.

Greg

Re: [QUAD-L] Breathing

[Jim Lubin]

I knew someone who was a C2 quad dependent on a vent to breathe and changed
to a diaphragm pacemaker. She wrote an article about it
https://files.wearesrna.org/newsletters/j5/journal-5-11.htm

She suffered from depression and stopped eating then passed away a few
years ago.

On Tue, Jul 27, 2021 at 5:28 PM Greg  wrote:

>
> I'm still having problems with my breathing, I'm not on trech now, I was
> last year for a week or two. I am on a respirator but only at night,
> sometimes during the day if I'm really out of breath. I've been to so many
> doctors they just can't find my problem. My oxygen levels are fine, but I
> feel like I'm out of breath. Sometimes it feels like a heavy chest,
> sometimes I feel like I've been running around the block, and other times I
> just don't feel like I'm getting air.
>
> My next test is an EMG. To test the diaphragm for electrical currents. And
> they also talked about a sniff test.
>
> My breast feel like they're big enough, I'm just breathing real hard. I
> have had blood pressure issues, often in the 70s/40s. So I am taking a
> blood pressure medication.
>
> They're also talking about a diaphragm Peacemaker. Is anyone ever had that
> or know someone who has? I worry that will make my breathing not natural,
> like making me take breaths when I'm trying to breathe out xcetera.
>
> It all started the day after I had a heart ablation to fix A-Flutter on my
> heart. But that shouldn't have anything to do with it, except I was
> intubated. I left the hospital and had to go back that night my breathing
> was so hard. They thought it was a CO2 buildup, but that's gotten a lot
> better.
>
> I haven't had a good breath in about 2 months now. At least one that felt
> normal. I don't know what's worse not breathing well for being on that darn
> ventilator. I don't want to go to trech again.
>
> Greg
>

[QUAD-L] Breathing

[Greg]

I'm still having problems with my breathing, I'm not on trech now, I was 
last year for a week or two. I am on a respirator but only at night, 
sometimes during the day if I'm really out of breath. I've been to so 
many doctors they just can't find my problem. My oxygen levels are fine, 
but I feel like I'm out of breath. Sometimes it feels like a heavy 
chest, sometimes I feel like I've been running around the block, and 
other times I just don't feel like I'm getting air.


My next test is an EMG. To test the diaphragm for electrical currents. 
And they also talked about a sniff test.


My breast feel like they're big enough, I'm just breathing real hard. I 
have had blood pressure issues, often in the 70s/40s. So I am taking a 
blood pressure medication.


They're also talking about a diaphragm Peacemaker. Is anyone ever had 
that or know someone who has? I worry that will make my breathing not 
natural, like making me take breaths when I'm trying to breathe out xcetera.


It all started the day after I had a heart ablation to fix A-Flutter on 
my heart. But that shouldn't have anything to do with it, except I was 
intubated. I left the hospital and had to go back that night my 
breathing was so hard. They thought it was a CO2 buildup, but that's 
gotten a lot better.


I haven't had a good breath in about 2 months now. At least one that 
felt normal. I don't know what's worse not breathing well for being on 
that darn ventilator. I don't want to go to trech again.


Greg

Re: [QUAD-L] Breathing Tube

[Don Price]

 Greg:
Those plastic breathing gadgets aren't very accurate or scientific. They're 
meant as an incentive to get people to work on deep breathing (something we all 
should do.) Many years ago, when I was in rehab, my Respiratory Therapist made 
me use one of those. She knew I was bored with it so she brought in one that 
was designed for children--it had several colorful balls in it that you had to 
raise up. I got bored with that one quickly too. Anyhow, I know those things 
are inaccurate because I figured out a way to "cheat" and get the slider up to 
the top every time. My cheat involved altering the way I inhaled into the 
mouthpiece of the device. I'd place my tongue on the middle of the mouthpiece 
and inhale so that the air was coming in from the sides of my mouth instead of 
the middle. I'm not sure I can explain it--or why it worked--but it did work 
like a charm! Everyone was impressed with my "lung capacity" when they really 
should've been impressed with my ability to find ways to slack off. Ha!
Happy breathing!
Don.
On Monday, August 6, 2018, 7:36:14 PM MST, Greg  wrote:  
 
   
I’m supposed to use one of those breathing tubes you blow or suck in air. My 
last one I had to blow out, this one I suck in. I thought I was getting it to 
the 1000 line, but after a closer look, its only 500.
 
 
 
What can use guys get to?
   

[QUAD-L] Breathing Tube

[Greg]

I’m supposed to use one of those breathing tubes you blow or suck in 
air. My last one I had to blow out, this one I suck in. I thought I was 
getting it to the 1000 line, but after a closer look, its only 500.


What can use guys get to?

Re: [QUAD-L] Breathing

[Greg]

I knew you could OD on water, but thats bad. Good luck.

While in the hospital, The nurse thought my poop was not soft enough, so 
just before they were sending me down to surgery for the chest tube, she 
gave me a poop softener. A shot. Before I even got to the surgery, I was 
pooping liquid. I was in AD so bad they rushed me back to my room. I had 
never had AD so bad. They ended up bring me to a higher level ICU so 
they could put a chest tube in me right in my room.


Bad week
Greg

On 7/22/2018 2:30 PM, Lori Michaelson wrote:
After the bleeding my body of sodium after drinking too much water 
(despite adding Gatorade and other things to my water) I began to get 
confused starting on June 26. Very confused. I was on the phone with 
my sister in the morning (late warning) and had just finished my 
breakfast bar that I was holding in bed like they usually do. My live 
in caregiver finished washing my hand and had turned around and heard  
a crunching noise and I was chewing my finger! Thankfully she was able 
to pull my hand away from me. After that I began to get worse. The 
next it was a Thursday which was my catheter change day. I was really 
out of it by then and they took me to Northwest medical Center in 
Tucson. I was in ICU for two weeks in the was pure hell.


I had aspirated and got aspiration/pneumonia. Eventually I had to have 
a chest tube and that seemed to take forever to drain out all the 
liquid which included blood. They could not take it out until there 
was one hundred cc or less in a 24-hour period of time. They finally 
did and it was one more day and I came home on July 18.


They did not have a rotating air mattress like I have at home and they 
ordered a rental bed that rotated me from side to side and inflated 
and deflated but the breakdown on my tail bone began before they were 
able to get that. Now it is draining after over 3 1/2 years with no 
breakdown areas because of the great roads here.


Now I am super lonely since I have lost my husband, my golden daughter 
(golden retriever) that my husband and I adopted back in November of 
2009 and she stayed by my side ever since my husband passed away in 
2012 (June). She went everywhere with me and love to "go" whether it 
be to Wal-Mart or to the park or anywhere. I dreaded the day when it 
was her time to "go" for the day she was asking. She was diagnosed 
with multiple tumors on her spleen that were in operable and a miss 
her and everyone I have lost in my life (my parents when I was a 
teenager) then my grandparents, then my common-law husband for 13 
years and then my husband for 15 years.


This is the first time I have never been without living with a family 
member of any type. My one sister and brother-in-law took me and after 
my husband's passing but after 3 years... I guess I began an 
inconvenience to them even though the original "plan" was for me to 
hire morning and evening caregivers 7 days a week which I did. They 
were wonderful and it was a great small hometown where I had a great 
position only five minutes away and life was good until they told me 
that even though they /knew/ I had nowhere to go. They didn't even 
care if I ended up in a nursing home but that was not going to happen 
so I began to look for a living caregiver. However, there was not one 
single even remotely accessible house or apartment in their entire 
area so I began to move back to Arizona where everything was 
accessible. But the first thing that happened to me was a home health 
agency nurse blowing up the balloon in my urethra making it stretched 
out beyond repair.


The great urologist I had since 2006 was not required to do surgery 
that would need to be done to stop the leaking so I had to have 
bladder neck closure surgery and an SP catheter put in. I thought that 
would be the end of it but only five months later a polyp against my 
bladder wall showed up and the new urologist wanted to check it out so 
I had a bladder biopsy done in February of 2017 and it was 
superficial/low grade cancer. He removed it but cancer cells can 
eventually spread and invade the bladder or elsewhere and along with 
my nonstop bladder infections... the consensus is to have my bladder 
removed (a urostomy).


I don't know when that will be.

Right now,, after that 3 weeks in the hospital they want me to see a 
pulmonologist, a cardiologist (I doubt I will need a cardiologist) and 
I need to see my regular physician. Money, money, money since I have 
to pay 20% of each physician's visit since I only have original Medicare.


I wish I had the type of family that would have kept me going way down 
and sharing the care since I can feed myself and operate my computer 
when I am up and around along with my other two nieces and other 
sister and brother-in-law nearby. But nope.


I am so damn tired of being a patient.

That is the longest I have been in a hospital since my accident in 
1979 when I was in ICU for three or four months, then a regular 

Re: [QUAD-L] Breathing

[Danny Hearn]

Wow, Lori and Greg you guy's have sure been through a lot lately, I been in a 
lot of pain and depressed myself and I  don't have it near as bad as some of 
you...I hope you guy's and my Quad friends get to Heaven one day, because many 
of us have been through enough hell here on Earth. I guess we just have to 
fight on long as we can, May God be with you all.     Dan H.*** 

On Sunday, July 22, 2018 4:30 PM, Lori Michaelson  
wrote:
 

 After the bleeding my body of sodium after drinking too much water (despite 
adding Gatorade and other things to my water) I began to get confused starting 
on June 26. Very confused. I was on the phone with my sister in the morning 
(late warning) and had just finished my breakfast bar that I was holding in bed 
like they usually do. My live in caregiver finished washing my hand and had 
turned around and heard  a crunching noise and I was chewing my finger! 
Thankfully she was able to pull my hand away from me. After that I began to get 
worse. The next it was a Thursday which was my catheter change day. I was 
really out of it by then and they took me to Northwest medical Center in 
Tucson. I was in ICU for two weeks in the was pure hell.
I had aspirated and got aspiration/pneumonia. Eventually I had to have a chest 
tube and that seemed to take forever to drain out all the liquid which included 
blood. They could not take it out until there was one hundred cc or less in a 
24-hour period of time. They finally did and it was one more day and I came 
home on July 18.
They did not have a rotating air mattress like I have at home and they ordered 
a rental bed that rotated me from side to side and inflated and deflated but 
the breakdown on my tail bone began before they were able to get that. Now it 
is draining after over 3 1/2 years with no breakdown areas because of the great 
roads here.
Now I am super lonely since I have lost my husband, my golden daughter (golden 
retriever) that my husband and I adopted back in November of 2009 and she 
stayed by my side ever since my husband passed away in 2012 (June). She went 
everywhere with me and love to "go" whether it be to Wal-Mart or to the park or 
anywhere. I dreaded the day when it was her time to "go" for the day she was 
asking. She was diagnosed with multiple tumors on her spleen that were in 
operable and a miss her and everyone I have lost in my life (my parents when I 
was a teenager) then my grandparents, then my common-law husband for 13 years 
and then my husband for 15 years.
This is the first time I have never been without living with a family member of 
any type. My one sister and brother-in-law took me and after my husband's 
passing but after 3 years... I guess I began an inconvenience to them even 
though the original "plan" was for me to hire morning and evening caregivers 7 
days a week which I did. They were wonderful and it was a great small hometown 
where I had a great position only five minutes away and life was good until 
they told me that even though they knew I had nowhere to go. They didn't even 
care if I ended up in a nursing home but that was not going to happen so I 
began to look for a living caregiver. However, there was not one single even 
remotely accessible house or apartment in their entire area so I began to move 
back to Arizona where everything was accessible. But the first thing that 
happened to me was a home health agency nurse blowing up the balloon in my 
urethra making it stretched out beyond repair.
The great urologist I had since 2006 was not required to do surgery that would 
need to be done to stop the leaking so I had to have bladder neck closure 
surgery and an SP catheter put in. I thought that would be the end of it but 
only five months later a polyp against my bladder wall showed up and the new 
urologist wanted to check it out so I had a bladder biopsy done in February of 
2017 and it was superficial/low grade cancer. He removed it but cancer cells 
can eventually spread and invade the bladder or elsewhere and along with my 
nonstop bladder infections... the consensus is to have my bladder removed (a 
urostomy).
I don't know when that will be.
Right now,, after that 3 weeks in the hospital they want me to see a 
pulmonologist, a cardiologist (I doubt I will need a cardiologist) and I need 
to see my regular physician. Money, money, money since I have to pay 20% of 
each physician's visit since I only have original Medicare.
I wish I had the type of family that would have kept me going way down and 
sharing the care since I can feed myself and operate my computer when I am up 
and around along with my other two nieces and other sister and brother-in-law 
nearby. But nope.
I am so damn tired of being a patient.
That is the longest I have been in a hospital since my accident in 1979 when I 
was in ICU for three or four months, then a regular hospital and then rehab for 
a total of 13 months. 
~Lori
On Sun, Jul 22, 2018 at 12:46 PM, Greg  wrote:

  Hey Don,   

Re: [QUAD-L] Breathing

[Lori Michaelson]

After the bleeding my body of sodium after drinking too much water (despite
adding Gatorade and other things to my water) I began to get confused
starting on June 26. Very confused. I was on the phone with my sister in
the morning (late warning) and had just finished my breakfast bar that I
was holding in bed like they usually do. My live in caregiver finished
washing my hand and had turned around and heard  a crunching noise and I
was chewing my finger! Thankfully she was able to pull my hand away from
me. After that I began to get worse. The next it was a Thursday which was
my catheter change day. I was really out of it by then and they took me to
Northwest medical Center in Tucson. I was in ICU for two weeks in the was
pure hell.

I had aspirated and got aspiration/pneumonia. Eventually I had to have a
chest tube and that seemed to take forever to drain out all the liquid
which included blood. They could not take it out until there was one
hundred cc or less in a 24-hour period of time. They finally did and it was
one more day and I came home on July 18.

They did not have a rotating air mattress like I have at home and they
ordered a rental bed that rotated me from side to side and inflated and
deflated but the breakdown on my tail bone began before they were able to
get that. Now it is draining after over 3 1/2 years with no breakdown areas
because of the great roads here.

Now I am super lonely since I have lost my husband, my golden daughter
(golden retriever) that my husband and I adopted back in November of 2009
and she stayed by my side ever since my husband passed away in 2012 (June).
She went everywhere with me and love to "go" whether it be to Wal-Mart or
to the park or anywhere. I dreaded the day when it was her time to "go" for
the day she was asking. She was diagnosed with multiple tumors on her
spleen that were in operable and a miss her and everyone I have lost in my
life (my parents when I was a teenager) then my grandparents, then my
common-law husband for 13 years and then my husband for 15 years.

This is the first time I have never been without living with a family
member of any type. My one sister and brother-in-law took me and after my
husband's passing but after 3 years... I guess I began an inconvenience to
them even though the original "plan" was for me to hire morning and evening
caregivers 7 days a week which I did. They were wonderful and it was a
great small hometown where I had a great position only five minutes away
and life was good until they told me that even though they *knew* I had
nowhere to go. They didn't even care if I ended up in a nursing home but
that was not going to happen so I began to look for a living caregiver.
However, there was not one single even remotely accessible house or
apartment in their entire area so I began to move back to Arizona where
everything was accessible. But the first thing that happened to me was a
home health agency nurse blowing up the balloon in my urethra making it
stretched out beyond repair.

The great urologist I had since 2006 was not required to do surgery that
would need to be done to stop the leaking so I had to have bladder neck
closure surgery and an SP catheter put in. I thought that would be the end
of it but only five months later a polyp against my bladder wall showed up
and the new urologist wanted to check it out so I had a bladder biopsy done
in February of 2017 and it was superficial/low grade cancer. He removed it
but cancer cells can eventually spread and invade the bladder or elsewhere
and along with my nonstop bladder infections... the consensus is to have my
bladder removed (a urostomy).

I don't know when that will be.

Right now,, after that 3 weeks in the hospital they want me to see a
pulmonologist, a cardiologist (I doubt I will need a cardiologist) and I
need to see my regular physician. Money, money, money since I have to pay
20% of each physician's visit since I only have original Medicare.

I wish I had the type of family that would have kept me going way down and
sharing the care since I can feed myself and operate my computer when I am
up and around along with my other two nieces and other sister and
brother-in-law nearby. But nope.

I am so damn tired of being a patient.

That is the longest I have been in a hospital since my accident in 1979
when I was in ICU for three or four months, then a regular hospital and
then rehab for a total of 13 months.

~Lori

On Sun, Jul 22, 2018 at 12:46 PM, Greg  wrote:

> Hey Don,
>
> We had one of those oxygen meters, my levels were always good, 95-96,
> until last week, it was 90. After my chair flipped on the 3rd, I broke my
> clavicle. On the 10th, I was having bad breathing problems. Had to go the
> ER. They found a few liters of fluid around my lung.
>
> Was at the ICU in St. Josephs for 8 or 9 days, with chest tubes. But at
> least while hooked up to monitors all that time, they found the cause of my
> shortness of breath. My heart keeps going into 

Re: [QUAD-L] Breathing

[Greg]

Hey Don,

We had one of those oxygen meters, my levels were always good, 95-96, 
until last week, it was 90. After my chair flipped on the 3^rd , I broke 
my clavicle. On the 10th, I was having bad breathing problems. Had to go 
the ER. They found a few liters of fluid around my lung.


Was at the ICU in St. Josephs for 8 or 9 days, with chest tubes. But at 
least while hooked up to monitors all that time, they found the cause of 
my shortness of breath. My heart keeps going into A-Fib. I must have had 
it for years. Hopefully heart meds will smooth it out some. The beat 
starts to flutter then jumps to 150.


 I was going to text you or the List to see if any of you quads were in 
the area, but they kept thinking I was going home, but they kept finding 
other issues. I wanted to go cruise the Barrows SCI until, but docs 
didn’t want me going that far off monitors.


I got up a few times to go outside, but man am I dizzy from being in bed 
so much and not eating much.


My shoulder is hurting more now than at first. Not a fun month.

Greg

On 7/16/2018 3:12 PM, Don Price wrote:

Greg:

I sometimes get a similar feeling when I'm hot or my blood pressure is 
low (usually due to dehydration.)


I suggest you spend the $15 to $30 for one of those fingertip 
oximeters that measures your oxygen level and pulse rate. Use it daily 
at first to get a good baseline for you on normal days, then use it 
when you feel short of breath to see if you're actually significantly 
lower in 02%.


This is one tool that can help you get an idea if something is wrong. 
Ask your doctor what a "good" level would be for you and what a 
"concerning" level might be. Here's some info I found online (if it's 
on the Internet is has to be accurate, right?):


"Here are some general guidelines to understanding oximeter readings 
and SpO2 values.


A normal healthy person should be able to achieve normal blood oxygen 
saturation levels (SpO2) of 94% to 99%. For patients with mild 
respiratory diseases, the SpO2 should be 90% or above. Supplementary 
oxygen should be used if SpO2 level falls below 90%, which is 
unacceptable for a prolonged period of time."


Best wishes,
Don P
Tempe, AZ


On Wednesday, July 11, 2018, 3:24:54 PM MST, Greg  
wrote:



My breathing has been strange for months now. Like I can’t get a big 
enough breath. So I end up taking lots of fast quick breaths. I can 
take deep breaths but have to force myself. Wearing a binder really 
helped, but hasn’t been helping much lately.


Its mostly when sitting up all the way, or laying down all the way.  I 
have no idea what kind of doc to see, a lung doc or rehab doc.


Anyone else have this issue?

Greg

Re: [QUAD-L] Breathing

[Don Price]

 Greg:
I sometimes get a similar feeling when I'm hot or my blood pressure is low 
(usually due to dehydration.)
I suggest you spend the $15 to $30 for one of those fingertip oximeters that 
measures your oxygen level and pulse rate. Use it daily at first to get a good 
baseline for you on normal days, then use it when you feel short of breath to 
see if you're actually significantly lower in 02%.
This is one tool that can help you get an idea if something is wrong. Ask your 
doctor what a "good" level would be for you and what a "concerning" level might 
be. Here's some info I found online (if it's on the Internet is has to be 
accurate, right?):

"Here are some general guidelines to understanding oximeter readings and SpO2 
values.
A normal healthy person should be able to achieve normal blood oxygen 
saturation levels (SpO2) of 94% to 99%. For patients with mild respiratory 
diseases, the SpO2 should be 90% or above. Supplementary oxygen should be used 
if SpO2 level falls below 90%, which is unacceptable for a prolonged period of 
time."
Best wishes,Don PTempe, AZ

On Wednesday, July 11, 2018, 3:24:54 PM MST, Greg  wrote:  
 
   
My breathing has been strange for months now. Like I can’t get a big enough 
breath. So I end up taking lots of fast quick breaths. I can take deep breaths 
but have to force myself. Wearing a binder really helped, but hasn’t been 
helping much lately.
 
Its mostly when sitting up all the way, or laying down all the way.  I have no 
idea what kind of doc to see, a lung doc or rehab doc.
 
Anyone else have this issue?
 
Greg
 
   

RE: [QUAD-L] Breathing

[Dave Krehbiel]

When I was having trouble breathing, I would do breathing exercises several 
times a day with a spirometer. I think it helped quite a bit.



>From a quick Google search, I think you can buy one for less than ten dollars. 
>You might want to talk to your doctor or nurse or therapist about this.



Good luck, and take care,



Dave Krehbiel

Olney, MD





From: Amy Elizabeth Baldwin [mailto:the.littleq...@yahoo.com]
Sent: Thursday, July 12, 2018 9:38 PM
To: g...@eskimo.com; quad-list@eskimo.com
Subject: Re: [QUAD-L] Breathing




 Do you have a physical rehabilitation doctor??

They usually know what to say when you have a problem like this.

 If maybe they will send you to a pulmonologist, who should have a answer for 
you!

 Many years ago when I went to one he gave me a breathing apparatus where I 
have to suck on a tube and hold air for a few seconds so bro times a day. 

I hope you can get well soon!



 •~•♡•~• LittleQuad •~•♡•~•





Sent from Yahoo Mail on Android 
<https://go.onelink.me/107872968?pid=InProduct=Global_Internal_YGrowth_AndroidEmailSig__AndroidUsers_wl=ym_sub1=Internal_sub2=Global_YGrowth_sub3=EmailSignature>



On Wed, Jul 11, 2018 at 5:24 PM, Greg

 wrote:

My breathing has been strange for months now. Like I can’t get a big enough 
breath. So I end up taking lots of fast quick breaths. I can take deep breaths 
but have to force myself. Wearing a binder really helped, but hasn’t been 
helping much lately.

Its mostly when sitting up all the way, or laying down all the way.  I have no 
idea what kind of doc to see, a lung doc or rehab doc.

Anyone else have this issue?

Greg



---
This email has been checked for viruses by Avast antivirus software.
https://www.avast.com/antivirus

Re: [QUAD-L] Breathing

[Amy Elizabeth Baldwin]

 Do you have a physical rehabilitation doctor?? They usually know what to say 
when you have a problem like this.  If maybe they will send you to a 
pulmonologist, who should have a answer for you! Many years ago when I went to 
one he gave me a breathing apparatus where I have to suck on a tube and hold 
air for a few seconds so bro times a day. I hope you can get well soon!
 •~•♡•~• LittleQuad •~•♡•~•

Sent from Yahoo Mail on Android 
 
  On Wed, Jul 11, 2018 at 5:24 PM, Greg wrote: 
My breathing has been strange for months now. Like I can’t get a big enough 
breath. So I end up taking lots of fast quick breaths. I can take deep breaths 
but have to force myself. Wearing a binder really helped, but hasn’t been 
helping much lately.
 
Its mostly when sitting up all the way, or laying down all the way.  I have no 
idea what kind of doc to see, a lung doc or rehab doc.
 
Anyone else have this issue?
 
Greg
 
   

Re: [QUAD-L] Breathing

[John S.]

You want to see your physiatrist and after you get done with him, there's 
breathing excersizes like that post surgical thing you should be using. 
Definitely call him. 
 
  On Wed, Jul 11, 2018 at 6:24 PM, Greg wrote: 
My breathing has been strange for months now. Like I can’t get a big enough 
breath. So I end up taking lots of fast quick breaths. I can take deep breaths 
but have to force myself. Wearing a binder really helped, but hasn’t been 
helping much lately.
 
Its mostly when sitting up all the way, or laying down all the way.  I have no 
idea what kind of doc to see, a lung doc or rehab doc.
 
Anyone else have this issue?
 
Greg
 
   

[QUAD-L] Breathing

[Greg]

My breathing has been strange for months now. Like I can’t get a big 
enough breath. So I end up taking lots of fast quick breaths. I can take 
deep breaths but have to force myself. Wearing a binder really helped, 
but hasn’t been helping much lately.


Its mostly when sitting up all the way, or laying down all the way.  I 
have no idea what kind of doc to see, a lung doc or rehab doc.


Anyone else have this issue?

Greg

Re: [QUAD-L] Breathing Attacks

[John S.]

If you tell your doctor you are taking overdoses of Tylenol they start getting 
the point. I've taken 40mg of Valium for 32 years. I'm addicted. Does it make 
any difference? 
If you want to stop taking it you will need to cut it back gradually while 
replacing it. I can promise you Zoloft won't do didly sqwat for spasms let 
alone seizures. 
What is difficult for them to grasp is that even though you don't feel the pain 
as before, your body does. When your autonomic nervous system overloads from 
all the nerve impulses your autonomic nervous system starts to malfunction. 
This leads to super high blood pressure and eventually heart and kidney damage 
and failure. Even blood sugar goes awry so obviously, the pancreas is not 
functioning during these events.
I've had to tell doctors if they want to experiment, they can get guinea pigs 
elsewhere. If he won't give you common medications that you need to deal with 
your situation, maybe he can recommend a doctor that will. 
The cause of anxiety attacks in most quads is from the uncontrolled glands that 
spew hormones into your system. Even knowing that your having anxiety for no 
real reason doesn't stop it. Valium and Baclophen will bring the attacks under 
control. 
When the attack affects your breathing, your muscles tense and start 
convulsing, your blood pressure is raising and your heart is going to start 
doing its own sprints. This is the beginning of a seizure that most quads refer 
to as AD or Autonomic Dysreflexia. 
You should have a pill on hand that controlls your blood pressure for these 
events. If it is caused by your urine not flowing, then get it fixed 
immediately. If it is from your bowel being full, empty it. If it is from pain, 
take painkillers. These are the 3 P's, pee, poo  and pain. These are what 
normally set off the AD even though it all begins with you feeling nervous and 
sensative, or ANXIOUS.
I know you are in OZ and doctors there like to discover new ways to treat old 
ailments, but I really think your doctor should address the roots of your 
anxiety. Not the anxiety because it is merely letting you know something is 
wrong. Killing the messenger is probably not going to resolve this issue.
Regardless of what you are addicted to, does it improve your life? Getting you 
off addictive drugs is an experiment in futility if it only leaves you 
miserable and closer to death.
I sure wish you the best of luck. 
john
 


- Original Message 
From: Robert Brennan [EMAIL PROTECTED]
To: quad-list@eskimo.com
Sent: Tuesday, June 17, 2008 8:40:24 PM
Subject: Re: [QUAD-L] Breathing Attacks


Doctor's here are trying to replace Valium with Zoloft.
Probably is effective,i can't even get them to understand my pain levels.
We are probably considered drug addicts,i can't get anything besides NEURONTIN.
Rob.

- Original Message 
From: Merrill [EMAIL PROTECTED]
To: quad-list@eskimo.com
Sent: Wednesday, 18 June, 2008 8:28:05 AM
Subject: [QUAD-L] Breathing Attacks

 
Rather than to think of a drug to lower anxiety
breathlessness, is there a drug you normally take which you have stopped
taking?  I have been cutting  back on my morphine which a day latter gives me
all kinds of bad feelings including anxiety and breathing.
 
Merrill

 Get the name you always wanted with the new y7mail email address.


  

Re: [QUAD-L] Breathing Attacks

[Robert Brennan]

Thank you John.
Rob.


- Original Message 
From: John S. [EMAIL PROTECTED]
To: Robert Brennan [EMAIL PROTECTED]; quad-list@eskimo.com
Sent: Thursday, 19 June, 2008 5:01:47 AM
Subject: Re: [QUAD-L] Breathing Attacks






 Get the name you always wanted with the new y7mail email address.



  Get the name you always wanted with the new y7mail email address.
www.yahoo7.com.au/mail

FW: [QUAD-L] Breathing Attacks

[William Willis]

I take xanax instead of valium. It seems to work better for me. It doesn't give 
as much hangover.


Date: Wed, 18 Jun 2008 12:01:47 -0700From: [EMAIL PROTECTED]: Re: [QUAD-L] 
Breathing AttacksTo: [EMAIL PROTECTED]; quad-list@eskimo.com




If you tell your doctor you are taking overdoses of Tylenol they start getting 
the point. I've taken 40mg of Valium for 32 years. I'm addicted. Does it make 
any difference? If you want to stop taking it you will need to cut it back 
gradually while replacing it. I can promise you Zoloft won't do didly sqwat for 
spasms let alone seizures. What is difficult for them to grasp is that even 
though you don't feel the pain as before, your body does. When your autonomic 
nervous system overloads from all the nerve impulses your autonomic nervous 
system starts to malfunction. This leads to super high blood pressure and 
eventually heart and kidney damage and failure. Even blood sugar goes awry so 
obviously, the pancreas is not functioning during these events.I've had to tell 
doctors if they want to experiment, they can get guinea pigs elsewhere. If he 
won't give you common medications that you need to deal with your situation, 
maybe he can recommend a doctor that will. The cause of anxiety attacks in most 
quads is from the uncontrolled glands that spew hormones into your system. Even 
knowing that your having anxiety for no real reason doesn't stop it. Valium and 
Baclophen will bring the attacks under control. When the attack affects your 
breathing, your muscles tense and start convulsing, your blood pressure is 
raising and your heart is going to start doing its own sprints. This is the 
beginning of a seizure that most quads refer to as AD or Autonomic Dysreflexia. 
You should have a pill on hand that controlls your blood pressure for these 
events. If it is caused by your urine not flowing, then get it fixed 
immediately. If it is from your bowel being full, empty it. If it is from pain, 
take painkillers. These are the 3 P's, pee, poo  and pain. These are what 
normally set off the AD even though it all begins with you feeling nervous and 
sensative, or ANXIOUS.I know you are in OZ and doctors there like to discover 
new ways to treat old ailments, but I really think your doctor should address 
the roots of your anxiety. Not the anxiety because it is merely letting you 
know something is wrong. Killing the messenger is probably not going to resolve 
this issue.Regardless of what you are addicted to, does it improve your life? 
Getting you off addictive drugs is an experiment in futility if it only leaves 
you miserable and closer to death.I sure wish you the best of luck. john 
- Original Message From: Robert Brennan [EMAIL PROTECTED]To: [EMAIL 
PROTECTED]: Tuesday, June 17, 2008 8:40:24 PMSubject: Re: [QUAD-L] Breathing 
Attacks

Doctor's here are trying to replace Valium with Zoloft.Probably is effective,i 
can't even get them to understand my pain levels.We are probably considered 
drug addicts,i can't get anything besides NEURONTIN.
Rob.
- Original Message From: Merrill [EMAIL PROTECTED]To: [EMAIL 
PROTECTED]: Wednesday, 18 June, 2008 8:28:05 AMSubject: [QUAD-L] Breathing 
Attacks



Rather than to think of a drug to lower anxiety breathlessness, is there a drug 
you normally take which you have stopped taking?  I have been cutting  back on 
my morphine which a day latter gives me all kinds of bad feelings including 
anxiety and breathing.
 
Merrill

Get the name you always wanted with the new y7mail email address.
_
The other season of giving begins 6/24/08. Check out the i’m Talkathon.
http://www.imtalkathon.com?source=TXT_EML_WLH_SeasonOfGiving

[QUAD-L] Breathing Attacks

[Merrill]

Rather than to think of a drug to lower anxiety breathlessness, is there a
drug you normally take which you have stopped taking?  I have been cutting
back on my morphine which a day latter gives me all kinds of bad feelings
including anxiety and breathing.

 

Merrill

Re: [QUAD-L] Breathing Attacks

[Robert Brennan]

Doctor's here are trying to replace Valium with Zoloft.
Probably is effective,i can't even get them to understand my pain levels.
We are probably considered drug addicts,i can't get anything besides NEURONTIN.
Rob.

- Original Message 
From: Merrill [EMAIL PROTECTED]
To: quad-list@eskimo.com
Sent: Wednesday, 18 June, 2008 8:28:05 AM
Subject: [QUAD-L] Breathing Attacks

 
Rather than to think of a drug to lower anxiety
breathlessness, is there a drug you normally take which you have stopped
taking?  I have been cutting  back on my morphine which a day latter gives me
all kinds of bad feelings including anxiety and breathing.
 
Merrill


  Get the name you always wanted with the new y7mail email address.
www.yahoo7.com.au/mail

Re: [QUAD-L] Breathing Attacks

[Robert Brennan]

Thanks for reassuring me Dana.
 Rob.


- Original Message 
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
To: [EMAIL PROTECTED]
Sent: Wednesday, 18 June, 2008 10:45:04 AM
Subject: Re: [QUAD-L] Breathing Attacks

You are right you probably are as they probably think I had too compared to 
other everyone else.
I go to sleep doctor and I'm giving Ambien trazodone if 
they want me to get a sleep light I don't think it will 
work.
Dana





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  Get the name you always wanted with the new y7mail email address.
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