Anyone know what could cause the actual kidney to swell?

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/19/2007 10:46 AM (GMT -7)   
I have kidney issues. GFR remains constant at 53.4 (stage 3?), urine a mess w/ red and white cell casts, protien and epithilial cells. But it happens to not be consistent. BUN is low, Creatine is high, and serum is low. I.e. it is a mess, but not fitting into any profiles. I have edema, now mild enlarged heart, muscle spasms, nausea, not hungry, and off and on pain in left kidney (sometimes right).
I and others have noticed that when the pain is severe, I actually have a swollen area on my back where the kidney's are. Dr says it is the kidneys where the pain and swelling are. This pain actually knocks me to my knees. All the x-rays came out fine though. Nothing remarkable in kidneys, not enlarged, no stones, etc. I am told I will need more tests done. It has been over a month like this now.



The doctors aren't saying much other than, your Lupus is progressing/getting worse, it is definitely the Lupus, "hang in there" and they avoid all my questions. So aggravating!!! I never heard of this type of kidney problem. Anyone heard of such a thing?

Post Edited By Moderator (Lynnwood) : 6/19/2007 12:15:42 PM (GMT-6)


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 6/19/2007 11:27 AM (GMT -7)   
Kris, whenever I hear of a doctor who avoids a patient's questions, I question the doctor. You deserve to know everything the doctor knows about your condition. If you're not getting that informtion I'd consider finding a different doctor who'd be a better fit. You can also ask for a copy of your chart so that you can at least get the info you're looking for.

Good luck. I hope you can stop the progression!

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 6/19/2007 1:33 PM (GMT -7)   
Hi kris--
I agree with Pat. I've been to two different urologists, both men, both lousy at diagnosis for failure to run adequate and appropriate tests, though one better than another. Also, you know once you have one problem, that's a bad doctor's answer to everything. Doctors are still telling me my hep is causing every problem I get, even though I have had no virus in my for over 13 years. Anyway, kidney stones and blockages of the ureters are some of the things that cause extreme pain and swelling of the kidneys. Kidney stones are made sometimes of calcium, sometimes of other stuff, I forget. Blood and epithelial cells can be signs of infection, protein is another matter. I have had urinary problems where my protein has been high, eventually I get an infection, then get treated and it goes away for a few weeks then all starts up again and it can go on for months and the steroids seem to make it worse because its harder to clear and infection. I would definitely get a second opinion, especially since you are in so much pain. even the ER might be a better place for getting a preliminary diagnosis fast. Xrays don't show soft tissue, though they will show calcifications. I had a catscan of the kidneys. Remember, you can pass stones. Is there way it could be a medication reaction? Check out the stuff on interstitial cystitis on the web as well. Have they looked inside your bladder with a cystoscope?
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/19/2007 6:32 PM (GMT -7)   
Kris, what kind of specialist do you see for your kidneys? I agree that if your questions aren't getting answered you should go somewhere else for another opinion. "your lupus is progressing" is not an acceptable answer, especially when dealing with major organs. I would think the docs would want to be more agressive and pro-active with this, especially with your labs being out of whack and the pain and swelling and edema, and all the stuff present in your urine. Are they doing anything for your kidneys or giving any meds to try to control the kidney problems? I think it's time to find someone who will give you some answers. Please keep us updated on what you find out. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/20/2007 9:02 AM (GMT -7)   
My regular doctor consults with some nephrologist. I have no insurance so I can't see any specialists-the doctors I see are for the homeless/unisured. I am fortunate for their consulting the matter. I have no idea who the nephrologist is though. I haven't had any test done other than the x-ray of the heart and entire torso region, specifically kidneys and liver. Had liver problems a few months ago and they are still concerned that with the kidney stuff the liver may fail. Not sure how all that works, but the liver has been doing much better. The lesion even went away. The E.R. said that if the kidney starts failing other organs may fail. I didn't know about that.

Unfortunately, there is no where's to go for a 1st or 2nd opinion. No medicine given for the kidneys. Just the ACE inhibitor for the heart -happy about that. Apparently, my heart is not working well because the kidneys - even though they are blaming it on the Mitral valve prolapse and enlargement of the left ventricle. I can figure out for myself what is going on though. The enlargement is new and the MVP I was diagnosed about 2 years ago is/was no big deal. Inhibitor is working thankfully, only have problems late at night and morning. Also, my lungs are doing well I think, only a small cough once in a while and doc seems content with that.

Basically, just curious on what could cause a kidney to swell and hurt like that.

I generally try to figure out the different options to check up on the doctors to make sure they don't miss anything. Unfortunately, I am better at diagnosis than they are most of the time. I guess because I have time to research the mattter. Only the expensive hospitals usually get it right the first time. I can't afford them as they usually don't accept charity care. I may go to the expensive hospital, but they won't keep me over night because of the lack of insurance. At least they may be able to better tell my doctor what is wrong and what to do. It is a crazy process. I like to be "armed and ready" sort-of-speak.

Thanks for your ideas - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/20/2007 2:04 PM (GMT -7)   
Kris, it really stinks that you may not be getting the care or the meds or the tests you need that might help you - I get so frustrated with our health care system when I read about things like this. My understanding is that a kidney biopsy would be able to tell the docs just how bad your kidney disease is and I do believe there are some heavy duty meds they can use for your kidneys, but I've read that some are pretty toxic and I'm also sure they are expensive. It's good that your doc consults with a nephrologist, but I'm guessing only a nephrologist could preform a biopsy.

I'm really sorry you are going through this with major organ involvement with no insurance. Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 6/20/2007 9:34 PM (GMT -7)   
Kris,

Does your state have some kind of program under which you would qualify for some health insurance or help with help insurance? Also most hospitals have programs that will get you set up with their financial departments to work out a way to pay bills (lots of times they cut them down). There's also that link--somebody else can help here, I can't think of it--lots of the pharmaceutical companies help out with the cost of their drugs. Doctor's often help when they can with samples.

The point is, you can't keep ignoring your disease. It is progressing and you need treatment. Do you have any family that can help in some way? I hope that's not too personal--don't answer it, and I'm sorry if it's a sore subject. I just want you to get some real help.

If you live near a teaching university hospital, try calling their professional building or clinic (whatever they call their facility where their doctor's see patients). Explain what you have and what your situation is. Ask if you can speak to a nurse. Talk to the nurse. See if the nurse can have a dr. call you or if she will talk to the dr. on your behalf. You are an interesting patient. Maybe they will want to see you as an "example" for their med students. I'm just brainstorming here, Kris. But you've got to try something. You feel rotten, and you need help.

Please do something.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/21/2007 7:49 AM (GMT -7)   
emmi, I'm so glad you brought these options up to Kris. I knew there had to be something that could be done, but couldn't think of anything. Your foggy brain was working better than mine :) I agree that something has to be done. Kris, I have been thinking about you a lot since I read your post last night and am worried that if they don't treat your kidney issues now, things are just going to keep getting worse. All of emmi's ideas are great and I hope you will check into them. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/21/2007 4:49 PM (GMT -7)   
Hi Kris--

Here is a link http://www.patientadvocate.org for Patient Advocate Foundation. They will help you when no one else will. They can help you get medically necessary medicaid and/or medicare and have some programs to help people who can't afford care. There is a toll free number 1-800-532-5274 and you can call during business hours and speak to a real person who will act as a case manager and help you to get assistance in your area. You seem to be pretty sick. Have you applied for social security or SSI? The patient advocate people helped me alot in getting some coverage for my son and he at least got temporary medicaid to help him get some of his issues taken care of. Every state has some provision for very sick people to get medicaid temporarily at least, but you usually have to go through social security. I hope you call and speak to an advocate and I hope you really persist in getting some help. Please let us know how you are doing. Also, maybe someone at lupus.org might be able to help you get temporary help. Patient advocate is really good though.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/25/2007 11:07 AM (GMT -7)   
Thank you guys so much for your help and concern.  I actually just got on charity care for a year at our local hospital.  Not a good hospital but it is something.   Already get free meds, but it is very limited.  The stuff like prednisone and cellcept I have not been able to get.  I gather it is expensive.  That is why they only treat each symptom as they come up.  The patient advocate program is something new I have not tried, I will give that a shot.  I need an advocate. 
 
My mom's side of the family lives far away and haven't been able to help in any way.  I do live in my mom's home so rent is eliminated - I basically have enough $ for food and bills, but not much more.  Dad side avoids me but lives close.  They don't want to get involved and when I ask for help all I get are excuses why they can't - you know bought a 1/2 million dollar home, going to Hawaii, Australia, etc.  Important stuff, you know.  Need-less-to-say, it has always been this way and I am not exactly close with that side of the family.  My entire family is great at avoiding issues like this.  I have pretty much fought everything on my own, I don't know much else.   This is kind of a first for me to talk with people about my illness and ask for assistance.  I was raised to never talk about problems and to never need for anything.  Wierd huh?  I wish I knew everything and could do everything, but it just isn't possible any more.
 
Tried Social Security 3 times.  Never heard from them the last time - it has been over 2 years now.  I don't have much energy but I'll try to get down there to check things out.  Can they help people temporarily?  That is what I would like.  I really love to work and have a great part-time job.  I would hate to lose it.  May not have much of a choice soon though.  Whatever is going on is really wiping me out. 
 
Thanks again for the help and hearing my tales of woe.  You are all in my thoughts and prayers - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/25/2007 9:36 PM (GMT -7)   
And you're in ours Kris. I know it's so hard to keep pushing when you feel so bad, but some of these suggestions can be done by phone. Hippi, Emmi and Marji had some great ideas. I do know that CellCept is very expensive so if you need to take it, contact Roche, the company that makes it. Drug companies will often give people in your condition free medicine if it's not feasible economically for you to purchase it. I think it's $110 or more a month for mine. I'm not sure about prednisone, but guys, isn't it pretty cheap?

Kris, I'm really concerned about you and hope you get some answers real soon. It's great that your hosital will see you for free for a year. Just keep pushing. I'll be watching to see how things go for you, so please keep us posted.

(((((((((((((((((Hugs)))))))))))))))

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/26/2007 9:06 AM (GMT -7)   
Thanks Pat, I appreciate everyone's help and they are all great answers. Need to try as many avenues as possible. And maybe revisit other ones. I did check the nearest University hospitals a year ago. But then again, that was a year ago. Things change. Not sure if I should bug Social Security or wait until I get these kidney tests done. I may bug them this week. Just for giggles. Wish I could get rid of my sarcasm some days :). I'll keep post. Take care - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/26/2007 9:19 AM (GMT -7)   
Kristin, Pat is right that prednisone is much cheaper than most drugs used to treat lupus. For me, the pharmacy doesn't run it through insurance because it is cheaper to buy it outright than to pay my co-pay. I think it costs me about $7 for a month's supply. I do know that for people with very limited incomes that even that amount can be hard to handle. I'm just surprised that when you get free meds they won't pay for prednisone because it is fairly inexpensive.

You continue to be in my thoughts and I'm really hoping that you get the care you need and deserve. Take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/26/2007 11:59 AM (GMT -7)   
Definitely can afford that. Cool! I'll start on the doctor right away. Also, I called the patient advocate org. and they were very nice on the phone. I will let you know what happens. I feel very optomistic about this! Thank you all so much - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/26/2007 8:52 PM (GMT -7)   
Kristin,

So glad to read your last post! keep at it. and keep posting. no matter if you're up or down, happy or sad, sarcastic or silly as a goose. We don't care, you know that by now! What we do care about is how we are all doing. Hang in there. Oh, and do bug that *wonderful* (uh-huh that's my sarcasm showing now) social security. There is a certain amount you can earn (maybe around $800 or so a month?, can someone help?) even when you are granted disability. So when you get disability, you might not even have to give up the part time job you love!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

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