I used to get infections that put me in the hospital where all kinds of tests were done - usually going home after 6 days on IV antibiotics with a diagnosis "fever of unknown origin".
after my transplant the infections continued and fearing damage to my transplant I looked into having my native kidneys removed.
the bad news is nephrectomy is major surgery, not to be taken lightly. the good news is I felt better from the nephrectomy than I did from the transplant. I never felt great after transplant the way some people did. I guess my kidneys were harboring infections and removal was the way back to good health.

Never had a cyst infection, but (okay, hate me now), I also don't get UTIs or kidney infections either.

How does your doctor confirm these cyst infections? Does he run a CT, MRI or nuclear imaging test and verify that a specific cyst is infected (in which case there is a specific protocol for treating an infected cyst) or does he just assume that every kidney infection involves an infected cyst if it doesn't respond to the standard 3-7 days of whatever antibiotic he's chosen off the shelf which may work for the average patient but is NOT the recommended course of action for a PKD patient? Cyst infections are not common, so I wonder about this semi-annual cyst infection issue (kidney infections I understand, but chronic cyst infections truly are rare).

Our kidney infections (just infections, not involving cysts) can be more difficult to treat/manage than in the average patient because we have all sorts of nooks and crannies where an infection can linger in the kidney that are not necesssarily readily accessible (we have areas that have some relatively slow flow of urine because of the compression of the cysts and others where there is no activity due to an overabundance of cysts (but there is still some kidney tissue present that can get infected). This is why certain types of antibiotics are recommended and a longer than normal course of antibiotics is also recommended for PKD patients, especially those who get chronic infections and do not respond to traditional therapy. We are NOT the average kidney patient and our doctors need to stop assuming we are.

Here's a link that may provide you some additional information about kidney infections and cyst infections and the recommended course of treatment:

http://www.ncbi.nlm.nih.gov/books/NBK1246/

There are two separate sections that talk about cyst infections, so be sure to read both; one is in the diagnosis area towards the top of the article and the other goes into much more detail in the treatment section.

I hope this information helps. If you need the antibiotics to treat your infection, then you need to take them, period. An infection is much more dangerous than the antibiotics are and leaving an infection untreated can lead to sepsis, rheumatic fever which affects the heart and a whole host of problems you don't want to consider.

I wish you well.
Ruth

The way it usually plays out is:
* I have kidney pain that doesn't resolve on its own
* I run a low fever, usually 99.1 - 99.5
* See my Nephrologist
* He puts me on antibiotic
* Fever is gone within a week
* Pain mostly subsides within a month
* Dr. has me stay on antibiotic until pain is gone plus on month, which is 4-10 months

A couple times I have ended up in the hospital because the pain became unbearable (usually comes on quite suddenly) or I spike a fever while on the antibiotic.

The only time they test my blood and try to determine the specific bug I have is when I am in the hospital. They never find anything in my blood, I suspect because I am on an antibiotic.

In the hospital they always do CT's. The report shows stranding.

I have never had a cyst drained and tested. Not sure I want to.

L,
Has anyone ever explained where this "stranding" is occuring and exactly what is means? From what I can tell from some online searches, it refers to the fat surrounding an organ, particularly the digestive tract and an excessive amount of fat stranding can be an indication of an infectious disease process (although there is some mention of perinephritic stranding with a kidney stone process). Very little metion is given to the kidneys in any of the references I found. Here is the one that provided the most and complete information:

http://radiographics.rsna.org/content/24/3/703.full

http://radiographics.rsna.org/content/24/3/703.full.pdf (same article but with pictures)

If you nephrologist or internist/GP can't explain what stranding is in reference to you, please ask a radiologist at the hospital or center that performed the test. It shouldn't cost you anything to ask the question; you deserve answers. And while you're there you definitely want to get a copy of all CTs and scans you've had for your own files; the radiology file room can usually put them on a disk for you, sometimes for a small fee...and don't forget to get a copy of all the reports as well).

Diverticulitis is a known complication of and/or can occur in conjunction with PKD and can be acutely painful. While the most common location for it is on the left side of colon (descending colon), it can also occur in the tranverse colon (across the top or your abdomen just below the ribs) or the ascending colon on the right side. The pain of acute diverticulitis (inflammation of the diverticuli, which are outpocketing in the colon, basically areas where the wall has pouched out from the normal colon wall) can be incredibly painful and is often described as the type that will double you over, and can occur in the abdomen as well as flank (side) and back). Since the colon runs in the abdomen along side the kidneys, which are retroperitoneal, the pain could easily be mistaken for acute renal pain and occur with a fever. My brother (who also has PKD)had severe diverticulitis at a very young age (it probably explained the severe problems he had as early as elementary school; his case was extreme case in that he required surgery in his mid 20s and hasn't had any problems since; for others often diet, fluids and exercise can help limit the flares).

I do not understand the reason for the additional 4-10 months of antibiotics if your kidney infection (as confirmed by an true urinalysis, culture and CBC showing increased white count and particular types of white cells), resolves in a couple of weeks. 4-10 additional months, especially after all your labs are back to normal seems like serious overkill.

Blood work and a urinalysis/culture should be done EVERY time a kidney infection is suspected, not only to confirm if you in fact have an infection, but to determine what antibiotics the infecting bacteria is most suspectible to (antibiotics can be started before the 24-48 hour culture results are back and then changed if the bacteria grown shows it's not suspectible to whatever you've been prescribed). Failing to do blood work or a full urinalysis (the nitrite/nitrate strips carry an exceeding high false positive and false negative rate depending on the brand) is a sign of your doctor's absolute disregard for his patients care and well being. While none of us want to get more labs done more than we need, the urinalysis and culture show the true nature of the infection and what bacteria is present (and if you're constantly being re-infected by the same bacteria, then it's probably time to try a new antibiotic) and the CBC (and associated renal panel) will also show if you have an infection (increased overall white count and what particular white cells are involved indicate specificity of an infection) AND how it's affecting your kidneys (an increase in creatinine is perfectly normal when you have an infection of any type, but your levels should return to normal when your infection resolves).

Quite honestly, based on your nephrologist's lax treatment of your infections and his failure to follow even basic protocols, not to mention his bizarre follow-on with 4-10 months of antibiotics for no reason, I would start looking for a new nephrologist, one who understands the baseline protocols for indentifying and treating kidney infections in ANYONE, let alone a PKD patient. This doctor obviously either doesn't know or doesn't care. And he most assuredly is not looking for anything to explain our symptoms or explaining his theory of 4-10 months of antibiotics (prophylactic antibiotics only create antibiotic resistant strains of bacteria, which he most assuredly is causing!). He doesn't seem to understand basic medical principles, let alone PKD (we do not need to be on antibiotics our entire lives, which it appears you nearly are based on his whim and fancy and no medical reason to back it up (especially as he does no labs!). And he is doing nothing to diagnose and treat the sharp pain you may get post infection. It does not necessarily mean a new infection, let alone one in a cyst; it could be a cyst rupture or a stone moving around or something entirely unrelated to the kidney, but because of the enlarged kidney and our body's sense of referred pain, is felt as direct kidney pain. Acute and if needed, chronic pain management would be much more appropriate than bombarding you with more antibiotics! Our kidneys can hurt for any number of reasons; infections are only one of them (and infections are a very different pain from a cyst rupture or stone or other form of pain).

In addtion, it may be time to ask your internist or GP for a simple x-ray called a
kidney-ureter-bladder (KUB). This will show any kidney stone(s) you may have in either kidney, something that may and often does not show up on an ultrasound or even standard CT, especially depending on its size and consistency. If you have one, a urology consult would be in order. PKD patients are prone to developing kidney stones as we have a lot of areas in our kidneys where the various minerals in our urine can stagnate and crystalize and turn into stones insteaad of being flushed out with the urine (and this is particularly common if we don't drink enough water or take particular medications). A stone can easily get trapped in the kidney and be unable to get out (a stone in the kidney can be as painful as a stone trying to make its way down the ureter and escape) and stones can be contributing factors for infections and pain. And while yes, some stones shown up on a standard CT (without contrast, generally only uric acid stones do), most get lost in the background clutter and our kidneys have a lot of clutter. Small stones or ones made of any number of other substances, to include the most common calcium oxalyate stones, may not appear on a CT (which are usually 5 mm slices of the body...and a 4mm stone that is missed on a CT can still cause intense pain if it's rattling around poking at your kidney and associated cysts). However, virtually all kidney stones, regardless of type, will show up on a basic x-ray called a kidney-ureter-bladder (KUB). And since Urologists are the functional experts on the urinary system and they are the ones who treat kidney stones and structural abnormalities of the kidney and associated ductwork. Just so you know, my one kidney infection was caused by a kidney stone (3 cm wide so it wasn't going anywhere other than remain in the renal pelvis (where the urine collects before it spills over into the ureter and goes into the bladder) and it did not show up on any ultrasounds, or an IVP or a CT, but lo and behold, it was blatantly obvious on the x-ray (the report of which my doctor failed to read when I was an in-patient for the kidney infection (systemic infection as I waited too long), and when I had a recurrence of the pain and landed in the ER two weeks later, the ER doc told me why, your kidney stone is still there--um, what kidney stone?!). I ended up changing firing that doctor (as he denied the stone existed and wanted to perform all sorts of invasive testing instead) and managed to get in to see a nephrologist who walked me right over to the urologist and they sent me to get the stone zapped with sound waves (lithotripsy) and voila, stone gone (a bit more complex, but a happy ending). But that stone had been growing for years and I had put down the pain associated with it to the pain of a previous back injury (relatively same location although much more acute) and declined the x-rays my doctor at a previous assignment wanted to perform (which would have identified the darned thing years earlier and saved me a whole lot of pain and a massive infection that seriously damaged my left kidney).

I would also recommend a consult with gasterotenterology (GI docs). You may have diverticulitosis, which requires entirely different treatment than what your nephrologist is providing and does not show up on a CT without the liquid contrast (sometimes) or during a colonoscopy. Colonoscopies, while they sounds dreadful, really aren't at all. I truly dreaded mine. But the worst part is the preparation and that is done in the privacy of your own home and there are tips and links I can give you for how to minimize the adverse effects of any preparation your doctor prescribes to clean out your bowels in preparation for the procedure (I wish I had them when I did mine) and a standard colonoscopy is still the gold standard for thoroughly checking your entire bowel, appendix (it gets a peek too as it sits at the junction of your small intestines and ascending colon, on the lower right side) and often a peek inside the lower end of illium, the lower end of your small intestines where it meets your colon. I highly recommend the regular colonoscopy and not the virtual ones; if something is found on virtual colonoscopy (and for the CT version you have to drink some form of a barium solution that sticks like glue to your innards after going through all the same prep procedures) and if something is found, you have to make another appointment and go through the prep again and go through the regular procedure in order for the doctor to look at whatever was seen, biopsy it as needed (BTW, you want to sign to have any needed biopsies done at the time of your colonoscopy and not take the "wait and see" approach and then have to repeat the test in a year or so; the blessing of these procedures is they can nip a problem in the bud and it never becomes anything serious, but if you wait and see, you may never come back (high rate of patients who don't return) and you're just goign to worry for X months/years about what the finding may be. So while the doctor can see everything, let them diagnose and biospy anything suspiscious--and you are blissfully asleep or so sedated through the whole process that you really will not care. And yes, it's basically pain free, just a little gas afterwards (and everyone in the recovery room has gas, so don't worry about that!). And once you wake up, you get the full report and know immediately what the results were (minus any biopsy results if any were done). Barring any problems, you're good to go for another 10 years or until your turn 50, whichever comes later!

Please do reconsider your relationship with your nephrologits. He may be conventiently located and as nice as can be, but he is NOT providing you anywhere near the basic standard of medical care you need. I don't know where he came up with some of his ideas, but they are by no means conventional (or prudent) and are not in your best interest.

You're right on the blood cultures; by the time they try to do the blood cultures (which if done properly requires blood drawn from two separate sites, ideally on two arms), you've been on antibiotics for weeks and the infection will be long gone (especially since you're being hospitalized at that point for pain management and not sepsis or an infection, despite your doctor keeping you on massive doses of antibiotics). I have NEVER had a blood culture done as no one has ever suspected sepsis (even though I probably was a bit septic with my one kidney infection that caused a 103 temp and some weird visions, but it was blatantly a kidney infection and no one needed to run a blood culture as my urine was pink and the urine culture grew quite a beautiful specimen (I don't recall what; it wasn't e coli). My nephrologist still routinely runs a urinalysis, protein/creatinine ratio and throws in a urine culture (to be done regardless of the results of the UA) on a semi-regular basis just to be sure I'm not harboring some silent infection (after all these years he's still suspicious). I also get a CBC monthly and the rest of my labs at least quarterly if not more often.

Our bodies can respond to a cyst rupture or other kindey incident pain (acute or chronic) and a fever. Even my infrequent liver cyst ruptures cause sever acute pain and fevers even though there is no infection involved; it's the body's way of reacting to some highly unusual event. While you may well be getting a kidney infection every year, I really do not think your doctor is treating you properly with these massive antibiotics, especially as he's not doing any testing at all to confirm any infection (urinalysis, culture or blood work in the form of CBC and renal panel) either before or after treatment.

I would really start looking for a new nephrologist and the next time I got an infection, I would seek care from my primary care provider, demanding those tests up front and after the treatment finished to ensure the infection is gone. And for pain, treatment, it can be done in or out of the hospital (prefence is as an outpatient after getting the acute pain under control in the ER so you're not exposed to more needles and sick people) and is obviously is more than appropriate. There is absolutely no reason you should have to suffer in pain. But you also shouldn't have to suffer from the treatment of an incompetent nephrologist who is not doing basic labs and just throwing more antibiotics at the problem because he assumes without checking that everything is an infected cyst!

I hope this helps and I really do wish you all the very best.
Ruth

PS Refrigerated probiotics (not just the Culturelle which doesn't have much in the way of active cultures compared to the refrigerated products) will help to offset the adverse digestive side effects of these long-term antibiotics and replenish the normal flora that resides in your digestive tract. By keeping you on the antibiotics for months and months on end, your doctor is causing your digestive tract to work harder and most likely causing you malabsorption issues because the antibiotics indiscriminately kill all bacteria, the good along with the bad. Our bodies need the good bacteria to properly digest and absorb our foods and the refrigerated supplements are truly the best source for replenishing your internal supplies (plain yogurt with active cultures can help as well, but the refrigerated form of supplements available at Whole Foods or other health food stores are the best and are guarenteed to have all the active cultures you need without added sugars, sweetners or anything else you don't need). Keep on a lower shelf in your fridge where it's consistently cold and use by the date on the label. Gentle hugs... :)

I can't shed much light on the infection issue except to say that my husband, who had PKD, rarely--if ever--had an infected cyst. Is your white blood cell count in the normal range? I assume your doctor checks that in chemistries.

I would like to ask your help to raise awareness about this disease.
There is a new (and short) animated video that the PKD Foundation has posted on YouTube that explains in a very simple way what PKD is about. The hope is that many people will see it, understand the disease better and, hopefully, make a donation to the PKD Foundation to go towards research for a treatment. The more people who see it, the better! Thanks for any help!
www.youtube.com/user/PKDFoundation

Thank you, I saw the video the other day. Very nice. I actually live in KC, the home of the PKD Foundation. I have helped them out a few times. My company is also there PR agency.

I also have the added benefit of much of the PKD research is going on in KC.

There is also a biannual event where information about the latest research is shared. I wish they held it annually. My doctor works with some of the researchers and is one of the presenters. :)

My doctor does check my WBC. It is elevated when I am put on antibiotics.

The reason my doctor gives for being on the antibiotics so long is that after short courses, the infection quickly returns. It was probably knocked down but not out.

My doctor says that once you get sn infection inside a cyst, it is hard to get out. Because there is no blood flow inside the cyst, the drugs have to leach in slowly.

The alternative is being on IV antibiotics at home which he is trying to avoid. He has changed the Meds several times looking for a more effective drug.

I'm absolutely appalled to hear your doctor is one of the presenters at the medical research conferences sponsored by the PKD Foundation. It just makes me question what in the validity and veracity of the research and quality of the medical professionals the PKD Foundation supports. In your case, your doctor is not following any basic medical protocols, so he shouldn't be practicing medicine at all! Maybe he spends so much time doing research he's forgotten the basics of medicine?! Whatever the case is, he needs to be fired as your nephrologist as he's causing you much more harm than good.

If he's one of the PKD specialists at KU then you need to find a clinical specialist who knows basic medicine and doesn't live in a lab. They should have some of clinicians in the clinic, neprhologists who's focus is medical care and not solely research. If not, you really need to seek care elsewhere, some place where the doctor(s) does not have tunnel vision and continues to use a FAILED treatment plan time and time again!

If you show signs of an infection, standard protocol is to run a urinalysis and a culture, run a CBC and a renal panel. Order antibiotics and change them if needed if the culture shows the bacteria grown is not susceptible to the currently prescribed antibiotic. And IF the short-term course of antibiotics NEVER is enough, then STOP using a short course of antibiotics and go with a longer term right away (e.g. insted of the standard 3-10 days, go right to 30 days). STOP using the short course and creating an antibiotic resistant strain of bacteria, then retreating the infection with what is most likely the same damned antibiotic!

What your doctor is doing FAILS over and over and over again, but he doesn't change his treatment protocol, so he obviously doesn't LEARN from failure. You need to and leave. He is not good for YOU. He may be a great researcher, but he is an abysmal clinician and will end up leading you straight into early kidney failure with this constant use of antibotics (they are hard on the kidneys, some more than others...and the ones that should be used for cyst infections are the ones that are harder on the kidneys!).

You need someone who is going to treat you appropriately and find out what is actually going on in your kidney. If you do indeed have an infected cyst, then your doctor needs to try to identify it and treat it directly (rest assured, it beats all of these antibiotics and this endless round of hospitalizations because your doctor doesn't know what he's doing!

I simply do not comprehend the concept of no urinalysis and no culture and no labs other than check the white count...it's basic, common sense medicine and needs to be done BEFORE all those damn antibiotics are given.

I'm really concerned your doctor is mistreating you, seriously mistreating you, by failing to perform basic tests, then just using antibiotics for up to 10 out of the 12 months every year because he "thinks" you have an infected cyst, without any evidence at all. He doesn't appear to know what he's doing and quite frankly, he doesn't seem to care! Just hit her with more antibiotics--that's his solution for all that ails you. And despite the fact that it's more than evident a short course of antibiotics is not effective, he continues to put you on a short course of antibiotics each and every time and continues to follow a FAILED treatment path time after time after time. This doctor does not learn from failure and you need to protect yourself from him and his failed treatment attempts. He has exhausted his limited medical toolkit (as he's by no means a clinician), and despite a vast amount of resources and research available that gives him a plethora of options, he's chosen to ignore the rest of the world, has tunnel vision and stays with a failed approach, risking your short and long-term health in the process. He needs to be fired as his approach will never change. After all these years, if he hasn't figured out that this failed approach doesn't work, there's no hope for him...and he'll bring you down and lead you into renal failure faster as a result. Please, please, find a new nephrologist!

Best wishes,
Ruth

PS I saw a PKD specialist at Johns Hopkins, but she was the CLINICIAN (Dr. Watnick), wheras Dr. Germino was the lead researcher up there (Hopkins mandated he see a minimum number of patients, but he also kept up with the latest on clinical medicine as well; he's now the deputy director of NIDDK at NIH). There is a enormous difference between clinicians, who see and treat patients on a daily basis and researchers, who rarely if ever see patients. Some centers require their researchers to see X number of patients per month, but all too many of those patients suffer from substandard care because the researchers are so out of touch with basic medicine and clinical practice, having been back in a lab for years on end with little to no patient contact. One of the reasons some of the PKD researchers enjoy the PKD "conventions" is because they actually get to put a face on all the research they do...otherwise we're just test tubes and slivers of tissue samples or a sequence of genes. In your case, you're being treated by someone who needs to stay in the lab and leave the clinical practice to a true clinician--you need a new nephrologist! Take the glow off the fact he's a presenter at a scientific conference...he's at best a mediocre clinician and is causing you harm, not health!