I have had PKD for 10 years, on HHD for nine. I have had six infections since 2008, five requiring hospitalization for three to 10 days. I have had 3 hospitalizations in last nine months. One doctor claims it is a kidney cyst infection with no medical evidence to support the theory. Other doctors believe it could be a fistula infection. Some dox don’t know what to think. One doc keep pushing for bilateral nephrectomy, which some urologists are hesitant to perform without cause. Does anybody have any comments or advice ont this subject. I don’t want to die fom sepsis, but I can’t see going through major operations only to find that I’m still getting infections. Any comments would be appreciated.
Hi Debby,
You may have missed the post about Dr. Agar being on vacation. He’ll be back in a couple of weeks. In the meantime, it may be worth contacting the PKD Foundation to see what others have done in similar circumstances. Nephrectomy is a pretty major surgery. Do you know how large your kidneys are? Do you have pain from burst cysts as well as the mystery infections that might make the surgery worth it to you? Often folks with PKD find that even though their kidneys have failed, they still make enough EPO that anemia may not be a problem. And, they may still make some urine. So, loss of these functions–if you have them–might be part of the equation. I guess I have to wonder if an Infection Control doc might be able to figure out the source of your infection, which might help to make your choice more clear.
Thanks for your comment. I will wait a few weeks until Dr. Agar has a chance to respond. I have not had any symptoms of kidney cyst infection, including pain. This is one of the main reasons I question the diagnosis. Nephrectomy is serious surgery. All of the body’s blood travels through the kidneys, so when you remove them, the arterial clips have to be perfect. Patients have bled to death after surgery. There is never enough time to repair the damage in post-op recovery. Most of my trusted advisors believe surgery should be a last resort. I feel my fistula should be redesigned first since the access is usually the cause of infection in HD patients. I also would like to try prophylactic antibiotics for a while. I do not feel that surgery should be performed due to a guess or theory by one doctor. By the way, the doctor who told me to have bilateral nephrectomy has dropped me, along with her urologist who was to perform the surgery. The hospital will have to find new specialists if I have to be admitted for the 7th time.
A brief answer (St John’s) … during a spare moment on vacation in Newfoundland.
While both lower and upper urinary tract infections are common in people with APCKD – both before and after reaching dialysis-dependent ESRD – clearly there are many other potential sources for recurrent infection, especially after commencing haemodialysis or peritoneal dialysis (in your case home HD).
Some of these infection risks include access-related infection (more common with catheters then fistulae) but, if you are using AVF self-cannulation techniques (esp. the buttonhole technique), there is some data now that suggests a higher rate of infection with buttonhole vs ladder cannulation techniques. While I am a ‘friend’ of buttonholing, I know some of my colleagues are not and I think the jury is out on the issue of infection rates. I think buttonholing, when done well and when done by well-trained patients or staff, is fine. When done poorly – and now that more units are adopting buttonholing, the risk of poor technique (far more critical in buttonholing than in laddering) is rising – then the buttonhole will attract poor publicity and result in negative vibes. If this happens, it will be a shame as the technique, well done, is sound.
If you are buttonholing, make sure that your technique is checked by a BH-familiar staff member.
I assume that other septic foci (heart valves with a trans-oesphageal echo) and bones (a chronic focus of osteomyelitis by bone scan) have been ruled out.
You don’t mention organisms … these can give a clue to the source of a potential infective focus. Skin organisms (staph especially) would suggest an access source while gram –ve organisms might be more likely from gastrointestinal or urinary sources … and in support of the doctor who was concerned about a urinary source, he is right that, especially in patients with APCKD, chronically infected cysts can be the source of recurrent and intermittent new or re-infection episodes.
As regards infected PCK’s … yes, they do happen! And not always with pain or with outward evidence for something ‘kidney-related’, though your lack of renal-associated symptoms is, I agree, suggestive of other infective foci. In defense of the nephrologist who felt that recurrent cyst-derived infections were the problem, he is right that the kidneys could be the source yet not be clearly symptomatic.
However, the access, in a home HD patient, does remain the most likely culprit.
The organisms causing your infection are a key ‘must-know’ to reach a logical ‘most-likely’ source diagnosis. This is information I do not have.
Have we ever done nephrectomies for recurrent infection with urinary-type organisms in dialysis patients? … Yes. Though I also agree with those who say it is a step of last resort as the surgery is potentially complex and can be life-threatening surgery. So, mind you, are recurrent infections – especially if blood borne (septicaemia) and if involving heart valves (endocarditis) or bone (osteomyelitis).
To know what is right for you … what direction to take and how to resolve the problem … I would need to know far more about you than I can via an internet Q&A site. You do not mention, for instance, if you have coincident diabetes – something that would make a lot of difference to your clinical picture, its interpretation, and to any advice/outcome expectations from your advisors.
The conflicting answers you have been given simply reflect the difficulties faced in both the diagnosis of and the subsequent management of the re-infecting dialysis patient. Don’t be too hard on your doctors. It isn’t easy. It is rarely black and white and is often very unclear and confusing … not just for you with what appears a changing set of opinions, but for the doctors too, with changing circumstances, differing bugs and conflicting clinical signs.
One thing is sure. If you are on the transplant list … though if you have been on HHD for 9 years, I suspect you are not … this ‘infection issue’ must be cleared up first. But, recurrent infection (in the end, likely cyst-related) is one of the underlying reasons why we have been pushed, on rare occasion, to considering – and undertaking – nephrectomies in APCKD patients who would otherwise be on the transplant list yet who are intermittently reinfecting with urinary-suggestive organisms, if only to ensure transplantation can proceed. I would add that when we have done so, the results have been excellent without loss of life or major complication … though I admit that we may have been lucky, both in choice and outcome.
I use the ladder technique. I am not diabetic. I cannot get on a transplant list until infections cease. I was on a transplant list 8 years ago but HMO made it impossible to proceed.
The infection almost always seems to start during dialysis. For example, my temperature can be 97.5 before HD and rise to 101 or higher afterward. The bottom on my fistula arm also is extremely hot when the infection is noticed. I do not have any urinary tract infections and no history of them. Being polycystic, I have cycts in a number of organs. For all I know, the infection could be derived from a pancreas cyst. This is why surgery seems unwarranted at this time. Every doctor who examines me asks if I have pain in the kidney region, which I don’t. They always act surprised. They believe that if I truly had a kidney infection, I would be in some type of pain. I have no pain.
The fact that the episodes are dialysis-related seem to suggest access-related sepsis.
Renal cyst infections do not always have obvious signs or pain (and I do note that you have had no pain) but, if the episodes relate to dialysis, then the old saying … ‘if it looks like a dog, and it barks like a dog, then it likely is a dog’ likely applies.
As I previously said, we have done nephrectomies for re-infecting cysts in APCKD patients on dialysis - mainly to clear them for transplantation - though most times (but, not always) renal cyst infection is clear.
Again, as previously noted, have your puncture technique checked out. If you are buttonholing, ensure that scab-removal techniques are meticulous. Consider following the Toronto experience (as we do) and use the post-dialysis application of Mupirocin (or possibly, if you are not in North America, MediHoney). A ‘white cell’ scan may help localize cyst infection if it is seriously considered a candidate focus.
Beyond this, it isn’t possible, via an Internet site Q&A forum, to be more specific for an individual case … but, as you mention ‘many doctors’, all I can do is suggest you stick with one doctor - one you trust and can relate to - and work through the process of focus identification and isolation to a rational conclusion.
Remember though, this is not always as easy and straight-forward as it might seem to you that it should be. It can be very, very difficult - not only for you but for your doctor - to chase down the infective site. On face value though, it would seem from your posts that it is more than likely access-related.
Good luck, and I hope it can be resolved for you.