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 <[email protected]>
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 <[email protected]> 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 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 <[email protected]>
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
--
"Petting, scratching and cuddling a dog could be soothing to the mind and heart
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
