trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
There was a time about a month or more ago that a few of us on this board seemed to be experiencing the same symptom....we thought it was kidney pain---it was back pain of a different sort than we had had before.
I went and had a urinalisis and some usual blood work and everything was normal. So I thought it must have been an overuse issue.
Today I went for my GB ultrasound and my doc added a renal US. Welp, NOT normal. It is always un-nerving when you get a call on your cell phone from your doc's nurse a few hours after a test and of course it is 4pm FRIDAY!!!
Turns out I have "moderate (in another section they wrote PROMINENT)hydronephrosis of the right kidney with diffuse dialiation of the pelvicaliceal system. There is no mass or nephrolithiasis demonstrated" In plain English---there is moderate enlargement of the right kidney with enlargement of the ureter or stretching of the ureter. They cant figure out why coz there ain no mass or stones to make it stretch so.
So---I speedily figured out the next step--a CT scan --- and was able to get myself in---miracle! Coz I will be away from home for the next 4 weeks!!
They are gonna fax tell the doc my results asap. I leave on sunday though.
So----I would like for the folks who were having similar pains to PLEASE follow up. Renal stuff aint something to take lightly.
I am thinking for my own case---it has to do with endometriosis, adhesions and also recent surgery. They removed the right ovary by tearing it away from the the right ureter to which it was attached via TONS of adhesions. That surgeon was a butcher, but it is possible things could have gotten swollen and then stretched by any surgeon...see how nice I am?
Anyhow---endo can grow on your ureter and adhesions can block your ureter. And you might not even know.
So go get an ultrasound or CT scan or something so you can know more about what is happening to you in there.
If anyone else has experience with this who did not have a kidney stone (or even if you did) please let me know,
Take care now, Michelle
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Up!!!!!
I am so freaked out people. Looks like I might miss my long awaited trip---my kidney is really messed up and failing.
I am so upset by this I can barely see straight.
Anyone have experience with this?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sheesh, Trailsey.
The universe is conspiring to keep you from your vacation!!!
What can be done about this anomaly?
Thanks for the heads-up. I for one don't spend much time thinking about my kidneys. I'd be hard pressed to even tell you where they ARE!!!
Keep us posted, please.
Michelle (the other one)
Posts: 3193 | From Northern California | Registered: Apr 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
HI Trails,
I just wanted to respond seeing that nobody else has so far and that you're so upset.
I do not have the same experience, but I was very freaked out (and still am to some degree) by the fact that my eGFR is very low for my age, it was 67 in May, the last time it was measured.
Normal is about 100 and kidney disease is 'official' at 60.
So, I can understand just how panicked and upset you are, especially as you have the kidney swelling, etc.
Let us know what you find out. I hope that you don' t have to remove the kidney.
Hugs DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey there dear one,
I am so sorry that this is happening to you...I know that things have really sucked for awhile.
I am however pleased that you went in to try and figure out what the problem was...and that you are making progress with that.
I have to say, that traveling right now might not be such a great idea. If this was staying the same...just the regular yucks...I might think that you were stable.
BUT, this is increasingly progressing for you and has turned into a very serious issue that in my opinion deserves another evaluation as to if the trip is a good idea at THIS time.
I want you to know that my door is open to you if you need to stay in this area for the proper treatment, OK?
I also want you to know that if you do decide to miss this trip, and need someone to hang with, I am here for you.
Now, as far as common symptoms...as you know I have been experiencing many of the same pains that you have. It has been very difficult to believe that this is all a herx or just a flare of new symptoms for me.
It sure has felt as if something else is going on...but all labs and tests have been inconclusive thus far. So, I have been doing my best to ignore things, hoping that eventually, they will resolve.
Knowing that this isn't always the wisest solution...but also knowing that I have done what I could to make sure that nothing was critical for ME...I am ok with that...at least for now.
It has also helped me tremendously to be able to compare common symptoms with others going through this. By doing this, I at least know that many of the things that I have felt are in fact common to Babs.
This is NOT to say that what you are going through is a herx, or simply a symptom flare...we obviously KNOW that not to be the case. But I do feel that because the body is all connected...your extreme condition at this point MUST have been TBD induced and continues to be TBD activated.
We just need to get you stable enough to address the cause along with the repercussions.
Soooo, my dear...
What is the plan? Do you even have a plan at this point? What can we do to help?
Much love, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Oh man. I'm so sorry trails!! That's awful. I can't believe nothing showed up on the bloodwork.
I did have a CT scan about 2 months ago and it was OK. Thank goodness. I think my back pain [kidney area] is from my colon. Having many digestive problems right now.
Hang in there and keep us posted. I apologize for not seeing this last night...nor this morning!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Carol B
Unregistered
posted
Trails- my sympathies to you-it's hard enough to prepare for a month long trip-let alone have a major health issue come up just before leaving.
I know you are not in the mood for this right now I'm sure, but it may be a blessing in disguise-what if you had been away and things went haywire during you trip ?
My last routine cat scan showed gallstones-one doc said tons of them, another said since I was assymptomatic not to do anything about them. There was also a cyst on my kidneys- to be watched at this point. I feel like a ticking bomb.
Meanwhile I am having a lumbar MRI done Tuesday because of back pain-but I think mine really involves the spine .
Please keep us posted. Sorry to hear all this. Carol
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posted
I have had a similar pain. First on Dec 2004....the CT Scann ordered by my urologist showed "fullness of the collective system" means both urethers that exit from the kidneys and "end" in the bladder were dilated...I saw the film and instead of "thin tubes or cilinders" coming out from my kidneys it looked like "inflated tubes" almost like if a bubble were inside the tubes. At the same time The CT scann revealed a intestinal lesion.....At this point part of the pain was definitely coming from my intestines...it resolved after stopping mepron and starting the bartonella treatment.
My urologist dismissed me saying you have no obstruction and the fullness of the collective system, since your bloodwork and urine are normal could be that you were born with it. Go to the GI for your intestines....the same old story.. When my LLMD saw the CT Scann results he told me "lyme does that too"....
Now, since January after a UTI treatment my urine was somehow cloudy and definitely the pain was in the lower back even thought one more time my bloodwork and urine analisys even a urine "citology" was ok.......for some reason the pain and the cloudy urine dissapeared with long term diflucan.....not only the pain and the cloudy urine but the fatigue too.....was it candida in my urinary tract or borrelia....I don't know since diflucan helps for these two infections.....
The only thing that I can tell you is that the pain would come and go and even when driving it hurted......I thought it was my colon....To describe the pain : was not acute and was like having the sensation of a little balloon getting inflated. At the very end I was "spotting" from my urethra a very, but very little amount of a yeast like discharge.....let us know what worked for you.
Don't know why candida or yeasts were never reported in my urine tests....
Posts: 983 | From The sky | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
You are all so dear and wonderful and sensitive and compassionate. I was sobbing reading your replies. I am overwhelmed with your kindness and concern.
Update: My doc's nurse is trying to get the CT scan report. It is taking hours--it is saturday and everyone is closed...including the doc office, but my LLMDs office is so dedicated. I LOVE them.
Here is my current plan unless the CT scan shows something explicitely different than what we all believe is going on:
I most likely have a chronic obstruction from endo or endo related things or from lyme or lyme related things. My report is different but similar in scope to yours lymeblue!!
I will get a referral to an awsome Urologist in Seattle at University of Washington who I will see on Tues for a full work up. (on their website it says hydropherosis patients will be seen ASAP) If the doc thinks my kidney will just be the same old stable unhappy camper, then I will continue with my trip further north and make an appointment to insert a stent or do whatever else might be necessarry in 2 weeks when we return to Seattle and when I have a week to just sort of hang out.
My Endo friend called me and discussed the stent thing---she has had lots of them. I could get it done BEFORE the trip, but that would mean I couldnt kayak or do much of anything. It doesnt take surgery most times, phew. Also if the pain gets bad or I am nausious or vomit then I can and should walk into an ER and they can put in a stent right there. I am trying to not have one if it isnt necessary since it prevents one from doing many recreational things.
The emotional turmoil from the prospect of NOT going on this trip is more than I can bear right now. It is more significant than it might seem to the outsider. For many many years each and every time I have tried to get away and enjoy my life something crazy happens and I spend the time in surgery or at docs offices.
I am so sure that most of you can relate to this.
I will let you know as it continues to unfold.
In the meantime I continue to pack and prepare and research medical crap.
You are all very precious to me, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
HAPPY trails isn't doing too well right now I read! darn it all.
Trails, look at your glass HALF FULL right now; you've been down the HALF EMPTY a lot this year & last.
Think of POSITIVE things instead of the nasty stuff. Continue packing and looking forward to the trip that your moral needed & still does now; more than ever!
posted
Good to hear from you again, Trails. Hang in there and keep us posted, OK??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Trails~ I give you a great big electronic hug!!! I hope you get to take your trip! AND I hope your kidney will by OK!!!!
Enjoy the NW. I used to live up there...
Hugs...Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Trails, I am so sorry you are still having so many problems..
My mommma hen thing says stay home and be careful but I know how much you want to go ..Just be careful..Take a lot of cranberries and water and make some cocktails along the way. Also some OTC pain meds.
I have a partial blockage in my right kidney..Discovered after severe pain, possible passing of stone but undiscovered, and a kidney infection. They did a radioactive dye test.. Guess I now glow..It empties slowly but passes on the 10 minute test..But I constantly have mild pain there..
Even on good days, I can tell you exactly where the rt kidney is..
Of course I will only be tested kicking and screaming so not sure it is lyme related.
Just be careful of rapids and rough water..It might be painful if you hit too much..
Hugs..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
CT scan was not read by the radiologist as they said it would be!! INstead a doc on call tried to read it...but he wasnt very clear to the my doc's secretary.
said: there is a lot of calcification in the pelvis. Problem with that is that he did NOT say WHERE in the pelvis RENAL pelvis? that is the ureter up close to the kidneys...or inside the ureter or WHERE?
So I am thinking now it may be a stone or stones. That is actually good news as that would mean something relatively simple.
Still planning to leave in the morning.
Still planning to get an appointment in Seattle.
oh how differnt our lives would be if we were just plain old healthy.
Thanks for all the encouragement and well wishes everyone. You guys are truly the best, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I just found out that my GFR went from 68 in May/June to 58 now. It has gone down 18 points, or 18 percent in a year (kidney function).
Below 60 is listed as stage 3 chronic kidney disease. I hope there's been some mistake.
If there is no mistake, I want to know why this is happening.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Kidneys were a worry of mine when all of this started, I got a cat scan done, but everything for all organs was negative...which is interesting because I have GI issues like no other.
I hope you are doing better Trails.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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