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]>
> <[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

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