Re: Update - long!
- From: <sweetpickleNO@xxxxxxxxxxxxxxx>
- Date: Sun, 15 Jun 2008 18:33:11 -0500
Donna, really bad that the port clogged and you had to have another put in.
Do pray it will stay good and you can get your infustion next time you go.
You had enough problems without that. I take 3 mg of coumnadin every night
and so far am doing really well on it. It took a while to get it leveled
out, but have been on the 3 mg for about 3 months now.
The weather certainly does affect your breathing and that makes everything
worse. All the other things just add to the misery.
Will be praying for you, your parents and your niece. Looking forward to
your nephew getting closer by soon will hopefully keep all the other things
off your mind all the time.
My heart really goes out to you.
Don't worry about tomorrow. God is already there!
"Donna G." <DKGBeeker@xxxxxxxxx> wrote in message
Guess it's time for a bit of an update!
Have been quite sick with respiratory issues basically since the week
before my nephews graduation. Didn't know if I would make it up to his
party or not, but did end up making the 5 hour drive. Was pretty sick
then, but so were quite a few others, so at least I didn't feel bad
about exposing others. Had a nice time with family and enjoyed myself
despite feeling so miserable. Just had to go back to my hotel room and
take lots of naps. Always fun, though, to spend time with family. My
nephew is soooooo excited about moving down state and going to the
University of Michigan, that he can hardly stand it! I, of course, will
love having him so close by for several years!
The constant heat and humidity have only prolonged the struggle with the
breathing issues and made things a little bumpy at times, but thus far
have managed to stay out of the hospital, although at times, barely!!!
God bless my pcp and lung doctor who have had almost daily contact with
me to keep me going and to keep me out of the hospital!
Went in to have my infusions the first week of june, and they were
unable to gain access to my port. Of course, they were also unable to
gain access via regular IV as I am such a hard stick! So, this past
wednesday, it was back to the
U of M hospital to have the port assessed and to try to figure out why
it was no longer working. I was so praying for an easy solution, but
that was not to be. Turned out that the port had clotted off, so it was
back to the OR to remove the old port and to place a new one. Got it
done, but with lots of trouble. My BP kept dropping and they had to
keep turning my oxygen up. Twice they actually stopped in the middle of
the procedures and ask me if I was ok, was I feeling weak or like I was
going to black out. Guess my bp and low oxygen levels were really
freaking them out. At one point I burst into tears and told them to
just hurry up and get things finished. I was having enough trouble with
staying calm as they had the sterile drapes over my face which makes me
claustrophobic, and then because of the issues with the bp and oxygen
levels, they could only give me about half of the sedation that they
gave me the last time. I just wanted the stuff off of my face! 7 hours
after I arrived at the hospital, I finally was discharged home! Phew,
was I happy to get home to my own bed and pretty much slept the rest of
the day, except when I got up to take something for the pain and to get
something to drink! I'm thinking I'll just pass on this months infusions
and wait for next months to roll around. The doctor that put the new
port in did tell me that if I continue to have problems with ports
clotting off after such short periods of time, they would have to
consider putting me on coumadin and that is something I really would
like to avoid if at all possible!
My rehab doctor wants me to try synvisc for my knee until the knee
replacement surgery gets cleared by all my doctors. I have to first get
tested to make sure I am not allergic to the stuff as I do have an
allergy to feathers and since the stuff is made from some part of
chickens or birds, they want to be sure before undertaking this.
Am in the midst of making arrangements for another round of rituxan for
the RA. Probably won't happen until about july or august by the time we
get all the paper work done and things approved and then scheduled.
Have had a few more ear infections, but at least not to the point where
I have lost any more of my hearing, thank goodness.
It's been a long few months and I have been a bit overwhelmed with
doctors appointments and such. Told my counselor that if feels like
the only social life I have any more is doctors appointments and I am
tired of them. Want to just pull the covers over my head at times and
say screw it all. The counselor said it was ok to do that and to cancel
appointments for a few weeks if I needed to, just don't do it for more
than a month.
It all gets so old sometimes and I know you all know exactly what I am
Besides the health issues, caring for parents who both have health
( mom = emphysema, dad = alzheimers), I have a niece who has really
become out of control behavior wise. She is only 14 and it is just so
heartbreaking to see. She recently spent 2-3 weeks in a home for
wayward teens to give all of them time to cool down and try to deal with
each other in the family in a better way. Very short lived as my niece
really knows how to push everyones buttons and ended up getting herself
kicked out of school for the last 3 weeks. Ugggh. It is so sad and so
hard to understand.
Sometimes you just cry yourself to sleep over the young ones and the
choices they make!!!
I just pray that she survives this phase she is in, as she really is
making some horrible and unsafe choices in her life!
Well, that's about it. Sorry if it all sounds so whiny, but that is
where my life is these days.
Blessings, good health, pain free days, and comfortable weather to all
of you my awesome ASA family!!!
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......
- Update - long!
- From: Donna G.
- Update - long!
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