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Gena, I'm glad to hear you're feelling better. Take it easy on that lawn work! Ruth |
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| | | From: Willow | Sent: 11/16/2008 10:20 PM |
I'm glad that you are feeling better Gena. Those first few replies to your message were a bit harsh in my opinion. I understand why you would be hesitant in going to the ER. I have been called a "frequent flyer" at the local ER because I have so many complications that cause me to end up in the hospital. It's not a good feeling when you get the "Oh, its her again" look from the ER staff. Although its not legal to be treated that way, it still happens. |
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Please understand. No one on here intends to come across as harsh. We are all very supportive and understanding where pain is concerned. The advice to get off these boards and get thee to a doctor NOW was intended to be strong, and stern sounding because we care. The pain was described as excuciating, and that is nothing to play around with. None of us here are properly equipped to diagnose any symptom. In fact it is forbidden. The best we can do is to tell someone to quit typing on the boards and go seek the help of a medical professional. Quickly, as in the case of excruciating pain. If you come to us and tell us of your pain, we can offer our sympathies and support, but if you ask us what we think you should do about the pain , the best and only logical answer we can give is get medical help. To step into the role of doctor and tell someone what we think is wrong irresponsible and the worst kind of support there is. Please accept our apologies if the answers given seemed harsh. Some of us have been dealing with our PKD for several decades. Myself, 26 or maybe it's now 27 yrs. We know that serious pain is something that warrants immediate medical attention. As much as we care for all of you, we can't diagnose you. All the best and all my love too, Maggie |
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| | From:  pkdLin | Sent: 11/16/2008 11:12 PM |
We know what Gena needed and how to say it. Most of us have known her a long time, and I have known her many years before she even came to this sit and we are friends. Thanks for asking! No thanks for being harsh on us. Gena likely has a different history and experiences from you so don't confuse the two. You will get to know how much we really do care so be more patient please. Lin
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| | | From: Willow | Sent: 11/17/2008 12:16 AM |
I am not confusing anything. I realize that everyone with PKD is different. i was trying to let Gena know that I understand her hesitation. I don't think that I was harsh on anyone, just sharing my opinion like everyone else. I wasn't questioning your friendship with anyone just sounded a bit mean to me, no reason to get all bent out of shape. |
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I, too, have found that illness seems to always strike on the weekends and at night. What is with that?
Or else on the doctor's day off...
Erin |
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| | | From: pkdLin | Sent: 11/17/2008 11:30 AM |
| Willow, No one is bent out of shape but it's always good to not read between the lines. Sometimes a new member comes on and things seem different than they really are. It's good to get to know members before reading between lines or judgeing, commenting on something wrongly. Helen and I have been here a very long time and know some of the members longer and better than anyone else. We both also email back and forth to Gena privately so know more than the average posters (about Gena). The advice we gave her was spot on and the best for her situation and was done in her best interest. I'm sorry if you disagree. Had it been something serious Gena would have avoided going because in the past she has gone for little or no reason and was critisized for that. It's hard to read but one post and know all about something or their situation so in the future try to keep things like that in mind. Helen and I aren't mean or we would not be managers here. Anyone can disagree with advice and that's ok; we don't mind here unless it's mean spirited. Lin |
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Willow, to back up what others have said, words can be a red flag. to use a term like "excrutiating" would indicate, to me at least, pain that is so debilitating that a person would be writhing in agony, doubled over or in a fetal position. a person in that type of pain would not be sitting at a computer posting a message. when a person uses that term to describe just about any pain, even the pain of a cold sore, as Gena has, the word loses its meaning. it may sound harsh but we are here to support each other in real issues and often do veer from PKD. one of the problems that we see when a person posts frequently about real or imagined illnesses is that these posts are read by newcomers who may be frightened already and do not need to imagine that all these things will happen to them too. from all I know of Gena she is a healthy woman who has been blessed with a kidney transplant. as she said earlier in her post, she was doing yard work and washing windows earlier in the week. in this case a cyst popping is PKD related. many of our members including myself have had that experience and it sometimes hurts more than other times. often it requires no medical attention at all, particularly when there is no fever. as Ruth brought out, emergency rooms should not be used in place of a pcp. it strains all our resources through our health insurance costs and our taxes. |
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to back up what others have said, words can be a red flag. the word "excrutiating", to me anyway, indicates the kind of pain where a person is writhing in agony, doubled over, in a fetal position barely able to move, severely burned or other traumatic events. when a person uses that word to describe the pain of a cold sore it kinda loses its meaning to those familiar with the writer. a person who is truly in excrutiating pain does not sit at a computer and type out a post. they do not concern themselves about whether to wait till later when the pcp is in his/her office. they are lucky to be able to get to a phone to make a call to 911. from what I know of Gena she is a healthy woman who is blessed with a kidney transplant. she indicates that she was doing yard work and washing windows earlier in the week. a ruptured cyst is common among PKD patients. some hurt more than others, often they require no medical care at all unless there is fever. often they can happen and the person does not even know it. as Ruth said, emergency rooms should be used for true emergencies and not in place of a call to a pcp. it strains all our resources in the form of higher insurance costs and higher taxes. as a support group we try to be a positive force in teaching each other how to have a wonderful life with PKD. many have more pain than others and more disability. those of us who are generally healthy, those of us blessed with the wonderful gift of a transplant, should be a big part of that support network by reaching out to those who are in pain or are disabled. |
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Hi-
This is an apology- not directed to anyone in particular but
just in general. In an earlier post, I said that people can't diagnose
themselves (not even doctors...) without appropriate testing and maybe the
intervention of a specialist, and to go to the ER if there's anything wrong-
don't try to diagnose it as 'life or death' or not, because with some things
it's hard to tell. I do totally stand by that. I do think "Better safe
than sorry.
But - I apologize if I sounded like saying people should use
the ER instead of a regular gp, if it is regular hours, and they can call
or go to their regular doctor instead. (Or if it's something that one is
familiar with enough to know it can at least wait til morning.) It does
tax ER's when people use them instead of a gp, for things that are obviously
minor, or if a gp is available. (If you do need an ER, any reasonable gp
should be able to tell with a call or emergency GP visit- if it's something
they can handle or if they need to send you to an ER for a better workup.)
I didn't mean to suggest that people should use ER's instead
of gp's for every minor complaint- not at all, and right on LIn- that does tax
the health care system.
I apologize if I gave the wrong impression-- I just meant that
if it's not office hours, and your instincts tell you that a symptom is not
normal. It could be chest pain, persistent stomach pain,
weakness, high fever, unusual pain somewhere-- anything that you find
unusual. (And I think most people can't type when they're in excruciating pain.
I knew when I had an infected ruptured cyst, because the pain was - while not
quite excruciating- not quite 'tootache' pain-- I could stand up, I could
walk - still it hurt so much I couldn't think of anything but 'this hurts' and I
went to the ER. I didn't think it was life or death, but it was a Friday night
and I couldn't get to my neph til monday- and I it was too painful to think,
much less sleep. Sure enough it was an infection. It doesn't have to be
life or death but it does have to be 'out of the realm of anything that even
could be 'normal')
But - the first call should be to the GP. You don't
have to be passed out with pain to go to an er, and many serious things are more
"this is unusual' than 'this is painful'--> so don't deny yourself health
care out of fear of 'bothering the ER" if your gut tells you 'this is not a
normal thing for me' be it pain or tingling or whatever. (Strokes aren't usually
painful- just really unusual sensations that persist.)
Call your GP or regular doctor (or neph or etc.) first if at all
possible. I always think "better safe than sorry" but-- I didn't mean to
imply that anyone should abuse an ER by using it in place of ordinary
medical care, or for ordinary conditions.
I apologize for any confusion, and it is a confusing
thing if you're in pain over a weekend- then it's maybe better safe than sorry.
Or if it's something that could be a super-time-senstive thing like a stroke or
heart attack, or fever of 103 or more, or really unusual sudden
symptom. (Or if your gp says "you're fine" over the phone. Nobody can diagnose
over the phone. My father's cardiologist told him he was 'fine' over the phone,
when he was in near-fatal cardiac tamponade. She thought shortness of breath and
weakness were normal for a person his age. Which is why I say "better safe than
sorry" At his next visit she saw him and said "MY god, why didn't you tell
me it was this bad?!? You have to go the ER right away!" - phone diagnosis is NO
diagnosis at all. Call the doctor, and if they don't tell you to go to the ER,
they should at least tell you to come see THEM asap- just to see with their own
eyes and bp monitor and stethoscope, etc. what is wrong.)
But- the first call should be to the GP- or neph
or whomever your regular doctor is- because they have the most
knowledge of your case and will best know if you should come to them, or go to
an ER. If its a holiday, or weekend and it's something disturbing- and
your doctor isn't there- that's maybe the 'better safe than sorry' - it's a
matter of discretion- BUT YOUR FIRST CALL- should be to your regular doctor, and
your next stop should be to either them, or the ER- whichever they recommend.
But you should be seen by someone. Many hospitals also have satellite
clinics or 'adult ambulatory' clinics, for 'minor' conditions but ones that have
distressing symptoms- like regular but bad bronchitis, or etc. It might be
good to have the local walk-in clinic or etc. for times when your doctor is out
of the office, but an ER would be too extreme.
Again- I apologize- I did not mean to imply that anyone should
abuse emergency services if regular gp or even a substitute local walk-in clinic
is an option "just because an ER might be faster" or 'is closer by' or
etc. That is a problem in emergency medicine- people knowingly using ER's
when they know they could wait a few hours and call the gp, or could go to
a less pleasant, but more appropriate- local ambulatory care clinic
instead. Sorry.
thanks,
-jeanne
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| | | From: barb | Sent: 11/26/2008 4:46 AM |
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I remember that when I was on dialysis whenever there was a problem with
the graft, it ALWAYS happened at 12-12:30 A.M.
barb
In a message dated 11/16/2008 9:53:15 P.M. Eastern Standard Time,
[email protected] writes: I, too,
have found that illness seems to always strike on the weekends and at
night. What is with that?
Or else on the doctor's day
off...
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Yes, Barb, stuff always happens in the middle of the night. It's crazy.
Erin |
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| | | From: barb | Sent: 12/7/2008 5:49 PM |
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Gena, thank goodness things turned out ok.
Barb
In a message dated 11/15/2008 5:35:23 P.M. Eastern Standard Time,
[email protected] writes: -----------------------------------------------------------
New
Message on Polycystic Kidney disease chat &
community
-----------------------------------------------------------
From:
Gena739
Message 7 in Discussion
I want to Thanks everyone for there
advice!! Well , I did go to the ER , they listened to my stomach and
gave me a Cat-Scan..along with all of what I already know, they said it isnt a
kidney stone which they suspected. .the Dr. said he's puzzled.. they asked me
about a thousand questions including if I had any trauma to the area on my
left side.. when he pressed all over.. the pain was under my left rib and I
jumped.. I told him it went around to the mid back,, I couldnt believe it ,
but my husband said he saw my old Nephrologist there..since my dialyiss days)
he said "I had some fluid in my Cat Scan and that a cyst probably broke,no
blood, I said.. What do I do ,nothing? He said. take tylenol for pain and he
put me on Antibiotics. .I said why? He said.. just incase you get a possible
infection from it! P.S. The pain subsided af ter the Tylenol! The other Dr.
said see your primary Dr. this monday to follow up! Sorry for the Post
before, I guess I was just nervous! Thanks again! Btw..all my
blood test s came out fine!
Gena
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HI.
It's actually typical for a person with PKD to rupture 20-40 or more cysts per year. Often without any symptoms, but sometimes, for larger cysts or cysts that 'communicate with' -- connect to blood vessles or nerves, sometimes with hematuria (blood in urine), sometimes with pain. I have pain, deal-with-able pain, all the time but when I do too much, it gets really bad. I presume I ruptured a few cysts, but as long as the excess pain goes back down to 'normal pain' in a week or so, it's okay. If it stays painful for longer, I will go to the ER to check and see if it's infected. (One time it was, the last time it wasn't) I've only been to the ER for it twice in about three years, cause I don't like to use emergency services.
It's fairly safe to presume excess pain is ruptured cistys, only in a more painful area. You still might do best to check for infection- but usually you will get the prophylactic or treatment antibiotics and the "take a painkiller, there's nothing to do for it'.
While cyst ruptures are not pleasant when painful or infected, it is good to know that they're common and that- other than checking for infection, they're not otherwise 'dangerous'- there's noting to do for them besides antibiotics and even then, if it's not infected, like mine, last ER visit, you might not even need them-- it's not a dangerous thing. It's just scary or disturbing to have sudden pain.
On the flip-side, while cyst ruptures are common in PKD, for people who are not on dialysis or don't have transplants or renal replacement therapy- actual loss of kidney function has few symtptoms, and isn't 'painful' as such, so people without rrt, it's important to get kidney function tested even if there is NO pain, or symtpm.
thanks and glad it worked out okay, Gena,
-jeanne
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