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I just found out that my daughter has mild left kidney hydronephrosis and was wondering if someone can help me understand what it isView Thread
View Thread
I try to believe I am lucky. I have great insurance. Got on the transplant list in October 2012...and I have the means to make it work. But on the other hand...guys I'm scared. Scared of the surgery. Scared of always being tired and losing my job (then it's a no go for transplant). Scared to use my FMLA...let's face it, doesn't matter how sick we are we should be at work to keep our jobs.
It's hard to be tired all the time and not be able to get what you need done. Hoping once the pools warm up in Florida in March that using energy, getting exercise will help improve strength and fatigue.
Any thoughts? Geez, I'd stand on my head, recite the constitution and eat worms if I thought it would help. Nothing wrong with my brain, desire or sense of humour...that should keep me fighting to live.
My other goal, as soon as I can get past another couple weeks of mandatory overtime with Disneyland Paris (yes, work for the French mouse in Orlando) is to make a web page telling my story and seeking a donor. Not so cool in the family department for a donor...grandmother, dad, brother, self and offspring hit the lotto for PKD also. Thinking of starting with a facebook page.
Team it's a big burden to deal with alone. At 50 I have outlived 2 husbands. Wow eh? My pup and cat are great little companions but not the life companion of my late hubby. We need to network and support one another. I'll say it being alone SUCKS.
Here's the other big, stupid question...I hate being alone. I'd love to have a relationship with someone. Where to meet is the ridiculous problem but beyond that is it fair to involve someone in my dilemma? On the other hand I did tell both my husbands about my situation. One died in a car crash after 9 months of marriage. The other, well we made it 23 years before he had a saddleblock embolism and died.
What a crazy person I am...if this has brought you to figure out how I am, that's fine. I'm going to have to tell my story to get help. Can you believe I'm looking for support, a kidney, ways to help myself, a relationship....and while I'm asking (God, could you give me the strength to either sell my horse or enough mojo to get back on her!)
Ok team....I'll start with the support request here first. Let's chat and take this disease for back corner discussions to supportive strength. Any amazing would be donor's who drop in to read...I'm an 0+. My insurance would pay all and it's legal to reimburse for lost work time, travel, and living needs...I have a horse you can play with. Sorry for the insane honest approach but I'm looking for help/support any way I can find it. I'm baring my soul here team so let's skip the unhelpful responses. Blessings to all who read, whether in health need or just curious...God bless. EquineGem in WIndermere, Fl.View Thread
Take the Poll
Looking for a kidney.
Looking for support.
Looking for any help, relationship, prayers I can get.
Blessings to you too!
Poll Results
Looking for a kidney.
Looking for support.
Looking for any help, relationship, prayers I can get.
Blessings to you too!
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Support50% (1)
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Medical thoughts0% (0)
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Kidneys50% (1)
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Relationships0% (0)
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Horse walker0% (0)
Plans are underway for the first NephCure Lunch and Learn Seminar of 2013, which will be held on February 9th, 2012 at the San Francisco State University downtown Campus. This is a great educational opportunity to learn more about the most recent advancements in FSGS/NS research and treatment options (not to mention, you can ask docs unlimited questions without a copay:)).
If you live in the Central/Northern CA area and would like to attend, or would like more information on upcoming seminars, please contact Patient Advocate, Charlene Mukarakate at cmukarakate@nephcure.org or call 610-540-0186 x27. It is FREE to attend and a light lunch and refreshments will be provided.
For more information, visit: http://nephcure.org/nephcure-lunch-learnView Thread
Plans are underway for the first NephCure Lunch and Learn Seminar of 2013, which will be held on February 9th, 2012 at the San Francisco State University downtown Campus. This is a great educational opportunity to learn more about the most recent advancements in FSGS/NS research and treatment options (not to mention, you can ask docs unlimited questions without a copay:)).
If you live in the Central/Northern CA area and would like to attend, or would like more information on upcoming seminars, please contact Patient Advocate, Charlene Mukarakate at cmukarakate@nephcure.org or call 610-540-0186 x27. It is FREE to attend and a light lunch and refreshments will be provided.
For more information, visit: http://nephcure.org/nephcure-lunch-learnView Thread
Take the Poll
Poll Results
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hopefully it is benign0% (0)
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not sure0% (0)
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not sure0% (0)
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not sure0% (0)
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not sure0% (0)
I'm 23 weeks pregnant with my second child (first is eleven years old and has never had a single health issue, knock on wood) and our OB gave us a call last week to let us know that when he'd looked at the results of our anatomy scan (from a month ago), that our baby girl's right kidney looked "a little swollen." He made us an appointment to get another scan and to see a perinatologist yesterday, which we did.
I'm not certain as to just how to feel about the results of the ultrasound yesterday. While baby's right kidney looked to be measuring about a 5-6 mm a month ago, it is now at 11 and looks to be dual- with most of the cystic area on top, and a normal functioning area at the bottom. The left kidney is functioning normally and amniotic fluid levels are normal as well.
The doctor seemed sort of laid-back about all of this and scheduled us for another scan in six weeks. She also suggested that we see a pediatric nephrologist (we are in Pittsburgh, thank God, an absolutely fantastic hospital town) for a consult at some point before delivery to get an idea of what might come next.
The thing that has me absolutely terrified is the rapid growth of the right kidney. It seems to be getting fluid-filled at an extremely fast rate, and I read on this board that 10mm is some kind of "danger zone." Can any of you elaborate on this? I did ask the doctor if rupture was a possibility and she said "No, but we'll keep an eye on it" which to me meant more like "Maybe" and honestly, if that's the case, I don't like the idea of waiting six weeks AT ALL.
So, if any of you have experience with one dual collecting kidney, or with fluid collection that happened this extensively and rapidly, I would love to hear about your experiences, and also any advice you may have. Thank you all so much in advance for reading this, and also just for being here.View Thread
I have not changed by fluid intake, but I notice that my urine specific gravity on the test strip is consistently higher than it has been in the months previous. I do not seem to urinate as much as I used to at night. I have been chelating for about ten months to rid myself of heavy metals.
I am on thyroid meds, and my flank aches and back pain coincides with my beginning Synthroid regimen. I am always tired, and I crave salt and sweets, so I am suspecting possible adrenal involvement.
I do not know if my recent change in urinary volume and specific gravity is a good thing or not, but I fear that this might be the kidney damage from the heavy metal starting to wreak havoc. I will be going to my pcp next week to enquire about an ACTH stimulation test for my adrenals, which might be the source of my aches and pains and ongoing fatigue.View Thread
For the longest time I have been having polyuria, mostly at night. I have had many blood draws and urinalyses in the past couple of years, with no sign of deterioration of kidney function and no proteinuria or hemotinuria.
I have been on thyroid meds for about three months.
For the past month or two, I have been having regular, almost daily, flank and back aches. For the past several weeks, I have noticed a strong smell from my urine, which is darker, especially in the morning, for the first couple of voids. I also have been having the passing of strong smelling urine at night.
I use dipstick test strips once a week, lately, to test for possible infection, to see if I have blood or protein in my urine. All negative.
My specific gravity has been going up, with no changes in fluid intake, which seems a good thing, given how dilute my urine has been for ages. I should mention that my blood pressure can be low and I have a craving for salt. I am thinking possible adrenal issues, which I will bring up with my doctor. I have been chelating for heavy metal toxicity for some ten months, now.View Thread
An ambulance was called and when I arrived at the hospital, blood was taken and they noticed immediatley that my pottassium level was only 2.0 so I was immediatley given an I.V. of pottassium which is not a comfortable dfrug to have dripping into your veins. It tooks several days and many more Pottassium I.V.'s as well as oral supplements to get my pottassium levels anywhere to even a near normal level.
The Nephrologist came in and said he was ready to give me his diagnosis of Gitlemans Syndrome. He said I would likley need to have my blooed checked every 2 weeks or so and to be preparred to go in for I.V. supplements when needed.
It was noce to have a diagnoses but when I reached for my laptop, I found very little helpfull information on Gitlemans Syndrome. I checked with my sister who is a 30 year medical research coordinator and she was not familiar with it and she asked her employer who is an M.D. and was met with the same response. I went to my primary care physician today to follow up and he had never heard of it either..
I was supposed to have a follow up appointment with the Nephologist that diagnosed me some time this week but I have not been able to reach him or even get him to return my calls.
Thankfully, I have an excellent primary care doctor who ordered a full blood workup while I was there today and sent it to the lab with orders for them to contact him ASAP if there were any numbers to be concerned about. The doctor said he would call be me right away if he heard anything that was cause for concern and tomorrow is Saturday.
For anyone else that suffers from this illness, are the sore muscles the main thing to indicate that an episode is coming on or are there any true warning signs?
I'm just trying to figure out what I am really in for, I'm 49 years old... will be 50 in February if I make it that long....
So sorry for my long rant... I just wanted to give a detailed description of what happened to me. Wondered if others have had similiar situations. Happy Holidays!View Thread
feel more fatiquied with each passing day,The pain on both sides of
my lower back use to come and go,but now is always there.My vision
is becoming a problem and I hurt in most all of my joints.The only medicine I'm on for my kidneys is linisporil 20mg I would appreciate
any advice on where to go or what to do.I have moderate kidney disease
that does not feel so moderate.My anxiety level is bad even though I'm
taking xanax as prescribed I am trusting in God,I would feel better If
someone could please offer any advice,Thank You.View Thread
I am a rapid cycling bipolar I, extremely bad bipolar in all regards. I tried every drug on the market and I was still not stable. I have a Psychiatrist who is renowned, as well as an expert cognitive therapist.
After taking every drug on the market, I had two choices, ECT or Lithium. I was scared to death of both of them, however, I chose Lithium. I went EVERY
3 weeks for blood draws on Creatinin levels. It was always OK, 1.0 - 1.1.
One day I was at the hairdressers and since I've been with him and all the rest for 18 years they know me well. I left and he called my husband and told him something was wrong with me. He closed the salon, so everyone could look for me. I WAS DRIVING A CAR !!! I do not remember anything.
I arrived DOA in complete renal failure, creatinin level 9.0. Two weeks before my level was 1.0, to this day, no one has any idea what happened ?
I only have 30% kidney function and I keep getting sick.
Any advise on helping myself do more to get my life back ? After being housebound for a year, it's time.
Thanks,
AllisonView Thread
My dad takes insulin shots twice a day and a friend recommended
raspberry leaf tea to disintoxicate and soothe the kidneys. Has anyone
heard of raspberrry leaf tea as having these medicinal properties?
I look forward to the feedback...JayView Thread
disease.Can anyone tell me if pain in the
knees,ankles,and hips are symptoms
of this disease?View Thread
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