Thanks Lori-- I never get fevers ever---this amazes some of the doctors, I
can be on my deathbed but no fevers. I went 5 months uti free the September 5th
I came down with this bad one I got now, my family doc had a culture done then
but had more than 2 organisms as always, so the lab threw it out.......my
family doc gave me 10 days of macrobid and that only slowed it down and reduced
the fowl smell,,after the macrobid ran out then came the horrible bladder pain
again and very fowl smelling urine. Ran a 2nd culture and got pseudamonas
results. Family doc office said call the urologist and tell him because he is
on vacation and can't see me till next Tuesday. So that is where I am at
now,,, waiting in severe pain, thank god for Vicodin. The Acetic acid is
keeping me from the emergency room I think because it backs it off but only for
a while. I always know when I get a bad uti because the pain and awful smell
and cloudy urine plus I get severe Bladder and Body spasms. I
never get bad body spasms any other time. Take care....I will have my wife
flush my bladder again tonight or in the morning. Oh this Quad life is grand
LOL Dan
Lori Michaelson <[EMAIL PROTECTED]> wrote: Hey Danny,
Firstly, I am no specialist except for first-hand experience many many many
times. And, to be blunt and perfectly honest, that is most often the best type
of specialist! :-) BUT you simply cannot be having a raging UTI or you would
be in bed 24 hours a day with a fever with chills that you can not stand or in
the hospital. It has been well over a month now that you have been talking
about having a pseudomonas infection.
Either the laboratory is not getting it right (a GREAT possibility) or it
is not affecting you very badly or you would be in the shape that I mentioned
above. And most definitely not being able to write an e-mail.
Pseudomonas is an aggressive pathogen. It is not like E. coli or some other
ones that can exist for long long periods of time without any symptoms. When I
get an infection I feel like I am going to die... like I said before until the
correct the antibiotic and ibuprofen brings down the high fever ... one that
will not go down until it either kills me or it responds to the medications..
If these goings on with you is not the laboratory (and without being so
redundant) your urologist is a total quack and a jerk. If you go back to him I
am going to commit you to an insane asylum myself! LOL. But seriously!
I would be asking him so many questions or turning him into the state board
for not treating you for a pseudomonas infection. Unless you are
non-symptomatic which seems to be the case or you would not be able to
function.
In any case... none of this story jives.
If you already HAVE a urinary tract infection... trying to flush out your
system with lotsa water, taking cranberry pills and juices as well as vitamin C
is not going to do crap! All of those things are only preventatives... not
treatments!!!
What Miriam said about PICC lines was correct and well written. BUT, if the
laboratory is wrong and the diagnosis is wrong... the LAST thing that you want
to do to yourself is having the most powerful form of antibiotics going into
your system if you do not need them. Because, as you know, if there is a time
when you REALLY need them... they may not work.
----------------------------------------------
Now I will add my two cents about the last two summers (not including this
last one but the two before) about what I had to do to get rid of my two
different infections that were only going to respond to IV antibiotics... and
one better make sure that they are the right antibiotics taboot!
A doctor of course has to order that it has been determined that no oral
antibiotics will work on the type of infection you have. That being the
case... IV antibiotics are the only other option . I am trying to remember the
exact order of events but I believe that my doctor gave me the prescription and
I contacted the area of the hospital that puts in PICC lines and I chose a
day/time (of course as soon as possible) they had open and I could get over
there. Most hospitals only have two specialists that work together in a small
area of the hospital and their only expertise (job or existence there) is
putting in these lines.
So anyway... I go over and have inserted. It goes into the arm and then
thread carefully it into your chest cavity. You do not feel a thing for the
most part except for the pinprick of the entry. But because I am such a baby I
always have them choose a spot where I have no feeling. After it is
inserted... they take a quick x-ray that can be done in your chair to make sure
that it is in the proper place in the chest.
After that, I go home and the home health agency is responsible for coming
once a day to administer the dose of antibiotics and flush the line twice to
keep it clear of clots or anything else. About 90 minutes. Both in the
summers of 95 and 96... it was a 10 day course. The line can stay in longer
and it probably should stay in until another specimen of your urine takes place
to make sure that the antibiotics hit it. Otherwise you are going to have to
go through having the line put in all over again.
Like another person on the list recently mentioned (pardon me as I have
forgotten at this moment) ... one of the IV antibiotics was called Zosyn. Come
to find out later... a pharmacist told my husband that Zosyn was essentially
only a stasis drug. In other words it is not an aggressive attacker as an
antibiotic like one needs to have when they have a serious infection like
Pseudomonas or Proteus Mirabilis (the 2 big bad infections that I was dealing
with that were resistant to oral antibiotics). To be honest... pharmacists
usually know much more about antibiotics and their functions since that is
their job!
So the 10 day course of Zosyn in the summer of 95 was a really bad call on
the part of my doctor... my regular physician at that time. I have left him
since. He was a jerk. Also, because Medicare is my only insurance... it only
pays for the antibiotic.
When you have a PICC line put in... local pharmaceutical companies exist who
make these home deliveries with all the equipment that is needed to maintain
the line. No matter what day of the week it is... they get this stuff out to
you as soon as you have the line put in. But back to insurance... Medicare
only pays for the antibiotic and I was responsible for the syringes for the
flushing, and all the little other things that are needed to maintain the line.
It cost me about $700 out of pocket that summer.
There is essentially only one pharmaceutical company in Tucson that delivers
the equipment, the antibiotic mixture, etc. etc. etc. and they are making money
hand over fist. I caught them in a Texas two-step last summer and we refused
to pay them what we did not owe them. Only one guy was running the show and
when he called us about eight months ago wondering why or what was going on as
far as the payment (because he has a separate billing department of course) we
told him and he backed off like a scared rabbit. I just hope that I do not
need any more IV antibiotics because of the incident. However, they would be
in more trouble if they refused to act upon doctor's orders. You get what you
need first and then the billing happens afterward.
Now, having said all that... I would make ding dong damn sure that the
laboratory is not giving you false positives. As far as I know... you cannot
have Pseudomonas going through your system and not being deathly sick by now.
You do have the right to choose another laboratory or even insist that the lab
at your hospital do it.
I am glad that you are not that sick of course but that just leads me to
believe that you are not dealing with what you are told you are.
If things work out I will let my husband take a look at your e-mail and see
what he thinks that I am sure that he will probably have nothing more to say
than I just did.
Now, tough love again buddy...STOP going to that idiot urologist. You are
wasting time and money and now your life.
He can't be the only one and even your doctor can refer you to another one or
your doctor can take care of this quandary himself. STOP accepting their
platitudes over and over and over again. I can't believe you have let it GO
this far.
In my last e-mail to you a couple of weeks ago or so... I ask you what
symptoms you are having now but you did not answer. Also, where do you live?
Lori
C4/5 complete quad, 28 years post
Tucson, AZ
On 10/11/07, Danny Hearn <[EMAIL PROTECTED]> wrote: Hi Lori-- I know a
while back you had a picc line for antibiotics. Over the years I have only been
hospitalized twice for serious UTI , both those times it was pseudamonas and
each time it took nearly a week of IV antibiotics to get me well--each time I
got so ill with bad A>D> and had most of my white blood cells destoyed.
In each case my Urologist told me to wait as long as i can to see what
happens. Both times I was rushed to the emergency and admitted. Well this Is my
3rd time being diagnosed with Pseudamonas in my Urine culture. We asked the
Urologist how to go about getting a picc line for the IV drugs----the only type
that can help me because this wacko Urologist made me take cipro every single
day for one entire year!! And now the bug is resistant to that.
Anyhow he said you don't need any IV drugs now-----just wait and lets see
what happens......same advice he gave me both other times! My family doc wants
to try to help but can't see me till next tuesday---hope I can survive without
getting deathly sick...I don't know if this stuff can go away on its own, I'm
drinking tons of water, cranberry pills& juice-vitamin c and all the usual
stuff----Plus flushing bladder every 4 days or so with acetic acid when urine
gets way to fowl smelling to stand.
( I know i'm rambling but here is my main question................ How to you
go about getting a picc line ???? does a doctor order it or will emergency
room? I see my family doc next Tuesday about it. Also---with a picc line does a
person just go to the hospital each day or do they come to your home?? Our
insurance will allow 20 nurse visits a year but so far I have never used a
home nurse. Thanks in advance for any advice,,,,,,,,,,,, Dan H.
