E.Coli/UTI

[TaffyTwoshoes27]

As a result of some symptoms I reported to my Transplant Coordinator (“TC”) because I was recently prescribed Sodium Bicarbonate for the low CO2 result in my blood test, the TC ordered a Urine Culture test for me at LabCorp. It came back with a “colony” of bacteria in my bladder.

I went thru 10 days of a medicine (Cefuroxime 250 mg). Then I took the Urine Culture test again and still have a “colony” of the bacteria in my bladder. Now I’m on Ciprofloxacin, 500 mg x 2/day. I feel very fatigued.

I asked the TC before he prescribed the new drug if the bacteria/infection can get in my kidneys and result in any damage. He said ‘No’. Well, I do my own research and found info from 3 prestigious medical facilities that said if the bacteria in the bladder continues to multiply and “colonize” and is not treated, it can infect the kidneys. Great.

My question is this: Are other Transplant patients given Orders for a Urine Culture occasionally to see how things are going? My TC said that many ppl are asymptomatic with E.Coli and UTIs, but they do NOT order Urine cultures unless a patient complains of a possible symptom. Wouldn’t it make sense to order a culture every 6 months or so just to cover their bases (since the patient can be asymptomatic of the signs of the bacteria: fever; vomiting; chills; low back pain; frequent urge to urinate; burning when urinating)?

I read that UTIs are common — especially with women who are sexually active, but they are not “common” for me. I’m not having sex and I wipe the correct way.

I’m just extra cautious of this new kidney! I’m glad to be off PD - even with the side effects and pills!

Now my TC has contacted the Transplant Hospital’s Infectious Diseases (“ID”) doctor. He said I couldn’t use an outside ID physician because there are issues to be considered with the Transplant and the immunosuppressant meds. The hospital’s ID physician and her NP only work 1 day a week each! The doctor allegedly INSISTS I travel to the Transplant Hospital to see the doctor in person the first time (get this) “b/c the doctor has never seen me in person.” Future appts can be done virtually!

My photo is attached to my file at the hospital. The doc isn’t going to inspect anything on my body (that I cannot do at home: weight, BP, temperature, oximeter). I’ve been seeing multiple Nephrologists and staff for MONTHS at the same clinic in the Hospital since January post-transplant (sometimes twice a week). Until this month, I’ve had routine lab tests weekly! AND the area where the hospital is located just had 2 murders (with guns) of people in that area (in Buckhead/Midtown Atlanta!) this week! Robberies and car jackings are plaguing our city, and especially the Hospital’s area of town (the richy rich section of Atl).

Just venting. Getting really tired of going to doctors and labs!

[Darlenia]

My hubby also endured multiple urinary tract infections, fungal infections, and more post transplant. He had burning, he needed to use the restroom a lot, etc. He was prescribed antibiotics and other meds. They never solved anything. So, after multiple trips to the local hospital emergency room, to the transplant center, to a urology practice for tests and more, my hubby was finally told that he needed to self-cath himself daily since they noticed that his bladder always retained some urine (likely due to diabetes) and that this was the reason for the infections. Well, my hubby was super unhappy with self-cathing as a solution. I tried to make sense of everything and began researching the matter. I found that immunosuppressants often allow bacteria and infections to exist since the body can no longer can round up effectively on them. (This is generally not too damaging as long as they don't become severe and create kidney infections - one of your fears.) Then, the antibiotics can also remove all the good flora and fauna in your body too. But the solution, in many cases, is quite simple - simply take probiotics! This made complete sense to me as my hubby contracted the superbug, c-dif, while on dialysis and probiotics was recommended at that time by his gastroenterologist as an adjunct therapy. So, after researching all types of supplements specifically for urinary tract health, we settled on 21st Century Cranberry Plus Probiotics from Amazon. (There are others - you may prefer something else.) We brought this to our transplant center's attention and the center agreed he could take it - but to reduce the dosage from 2 tablets a day to 1 a day. Interestingly, over just a few days, all his symptoms and issues vanished, no self-cathing needed, and more - he's not had an infection since then. So you may want to consider doing something like this too. But, before you do, please make sure you to get the "green light" from your own transplant team. What has worked for my hubby, may not be advisable for you. I hope you find relief soon!

[TaffyTwoshoes27 in reply to Darlenia]

GREAT info!!! Thanks!!

I was wondering when I'd have to start taking probiotics because I know from the past, before having kidney disease, when I took antibiotics, I always had itching and discharge around my "Va-JJ" (as Oprah calls it). I like that new commercial for the probiotic sold at Walmart where the women are all using the word "poop" because 'women poop.'

Thanks for the info and suggestions and I'll save your answer to show my transplant coordinator or the infectious disease doctor. I appreciate it very much.

Good luck to your husband. Has he been evaluated for transplant?

Bless you for taking good care of him! I hope he shows his appreciation! It always seems like it's something new!

I wish more doctors had better answers instead of the same old suggestions that they give (like your husband told to self catheterize). It's such a shame. I had a great nephrologist when I was diagnosed with ckd, and he said that in Med school, doctors don't get enough education about the kidneys and their part in maintaining bone health, hormones, and very important bodily functions.

The nephrologist I had would try to educate doctors in other fields at the hospital when he visited his patients, and he became sort of a pebble in the heel of many doctors' shoes. They didn't want to hear his information. LOL!

[TaffyTwoshoes27 in reply to Darlenia]

BTW: I'm also having an issue with smelling like urine even though I have showered and changed clothes and changed underwear sometimes twice a day. Did your husband experience this? I'm on the medication now (and it only seems to happen when I am on the medication -- this is the second type of antibiotics I'm on and it's a stronger dose).

Hit me back and let me know your hubby's experience with this urine smelling thing.

Thanks! 👍

[TaffyTwoshoes27 in reply to Darlenia]

I just checked with my transplant coordinator. He said they do not recommend any probiotics because they can sometimes interact with the immunosuppressants He said I can eat yogurt with fruit in it but that is all they will recommend for a probiotic. Ugh!!

[Darlenia in reply to TaffyTwoshoes27]

Not surprised. Some transplant centers allow probiotics, others don't. Our center "straddled" the two views by recommending a half dose, not full dose. I'm not sure what we would have done if our center had given us a solid "no". Sorry it turned out that way for you.

[Darlenia]

Yes, my hubby has had a transplant. He went into complete kidney failure and dialysis in June 2020 and received his transplant in June 2021. When he went on dialysis, the utis surfaced twice, (Hubby never had utis prior to dialysis in his life.) During one of those utis, my hubby did have a urine smell - because that uti was so "stinky" or "ripe" for lack of a better word. They actually gave him antibiotics intravenously to control it. And that later led to the horrible c-dif (with the gastro doctor adding probiotics to the mix of medicine). Finally, everything was corrected. Then, after his transplant, the utis became constant and nothing worked well. My hubby's life became hellish - always in the bathroom every two hours or so, night and day, with no relief in sight. We started to worry that, besides the infections, the meds prescribed could also take a toll on his new kidney. So, our transplant center referred him to a respected urology practice. After investigating, the urology practice told my hubby (and our center) that he should simply cath himself. And that was that. When we found out the probiotics worked, we were aghast about how much time and money, as well as quality of life, was wasted with all the meds and such when there was a simple answer to it all. It was a big "wow!" moment - obviously, the immunosuppressants and possibly even the antibiotics had tampered with the biome in his urinary tract. Super big "duh!". But we are also realistic, we know that should my hubby's bladder continue to break down and increasingly retain urine, he may have to cath himself down the road. He is, after all, a diabetic. But we are living the good, trouble-free life right now! Finally. That's all that matters.

[TaffyTwoshoes27 in reply to Darlenia]

Good for you guys.I just read an article that said that these alleged UTIs can be related to cystitis or a Prolapsed bladder. Right after the transplant, many people complained about having to urinate more frequently and the doctors said it was because our bladders had become weak and we needed to wait until the muscles were strengthened to hold the urine longer.

I've read on this forum where people say that they are getting up three and four times a night to urinate. I think that is very unusual and they should certainly be talking to their transplant team.

The prolapsed bladder or cystitis have never been mentioned by my transplant coordinator or the nephrologist at my transplant hospital. I think that may be the reason I can smell the urine smell, i.e., urine remaining in my bladder. I mentioned the smell to my transplant coordinator and he said he had never heard that before.

The Medical Industry is amazing! If other corporations were run with so little transparency between the customers (patients) and the staff (doctors as well as the doctors' knowledge), the corporate world would collapse.

My Transplant Coordinator is a very top-notch BSN, CMSRN, but he's never heard of anybody having a problem with a strong urine smell post-transplant?

I was on dialysis 6 years. Georgia has a very long list of people waiting for organs. I was accepted to the waitlist in 2015, so I waited 7 years to be transplanted.

My nephrologist never told me the reason I went into kidney failure at 57 years old. He thinks it was from infections that I had thru my life. I remember taking pills for kidney infections when I was 10 years old. I always had a very good blood pressure, but at about 53 years old, it started remaining at a high level.

None of the medical people, including an Internist that was educated at Emory University, told me that high blood pressure would affect my kidneys. The internist looked at my blood work and didn't even recognize that my GFR was 25. She gave me blood pressure medication and told me to come back in 5 months. She gives good doctors a bad name.

Thanks for your reply and the information. Let's pray that your hubby doesn't have to do manual catheterization ever!

[Darlenia in reply to TaffyTwoshoes27]

You're welcome. Hang in there!

[bluekidney]

Hi I am one year post transplant and my transplant team still orders regular urine cultures every 3 months to make sure all is well. My ckd was caused by ongoing UTI’s that I wasn’t aware I had because I didn’t have any symptoms. That caused stag horn calculi that destroyed both native kidneys. This may be why they are still monitoring the urine. All has been well though since transplant. Hope your UTI’s resolve and all gets better for you.

[TaffyTwoshoes27 in reply to bluekidney]

Thanks for your input. It's amazing to reach out and get so much information on this forum.

I think that you're sharing about your UTIs being asymptomatic is similar to my story. I think infections were what brought my kidneys to failing as well.

Good luck with your transplant. I'll talk to my PCP about ordering urine cultures every 3 to 6 months since the transplant hospital says they don't put urine cultures on the lab work orders.

Thanks again!

[bluekidney in reply to TaffyTwoshoes27]

Yes, self advocacy is the way to go. Keep asking especially because you are aware of ongoing UTI issues. Luckily my Transplant hospital orders mine regularly. My PCP will also order them when I have reached out to her about being sick after transplant. she will also check kidney function to rule out any issues with the new kidney.

[TaffyTwoshoes27 in reply to bluekidney]

Well, I have a rather new (for me) PCP. He seems thorough and nice, but I can already tell that knowing much about transplants and kidney function isn’t his forte.He saw my Alkaline Phosphatase lab result (a bit high) and immediately wanted me to have a liver scan (although bone problems — like osteopenia (which I have) is also a cause of high AKP). I talked to my Transplant Coordinator and he said the Mepron I was taking for 6 months post-transplant can cause AKP to be elevated.

I hated to “question” or try to educate my new PCP, but I would have preferred he had asked me to check with my transplant team before jumping to having me undergo one more (of hundreds of) test.

I’m sure we kidney disease/transplant ppl can relate to all the testing and evaluations. I waited 6 yrs on dialysis and 7 yrs on the kidney waitlist. That long wait entailed hundreds of tests, labs, etc., and I don’t want a doctor that willy-nilly jumps at guessing at what causes labs to be out of range.

The final answer about my Alkaline Phosphatase from the Transplant Nephrologist is that kidney patients usu. have a higher AKP, period.

[bluekidney in reply to TaffyTwoshoes27]

Yes that’s very true PCP’s don’t always know about kidney issues, dialysis and transplant. I was on dialysis for 5 years at the beginning my blood pressure fluctuated a lot. It was always a constant battle between PCP and nephrologist. She wanted me on blood meds he said that I didn’t need them but every time I was on the meds my blood pressure always dipped during treatment. It was horrible. He told me I had to stop listening to her because she didn’t know about dialysis patients needs and physiology that I needed to trust him because it’s hard to control blood pressure on dialysis. So I trusted him and all was well the rest of my time on dialysis.

Do you maybe have a local nephrologist you can consult or maybe even a urologist that are more specialized with the urinary issues?

[TaffyTwoshoes27 in reply to bluekidney]

Oh yes. I can throw a stone to downtown Atlanta!

The transplant hospital wants me to have check ups with them for the first year of transplant. Then, I can go to a private practice Nephrologist and urologist, if necessary. I don’t have a urologist — yet, but I’m sure I’ll have to add one of those to the “specialist list.” I also need a dermatologist now b/c the immunosuppressants allegedly make me susceptible to skin cancer. Great. I guess I ought to get the phone book out and get every specialist in existence! Lol

The PCP referred me to a dermatologist (haven’t called yet). I got a new nephrologist because my PD clinic nephrologist doesn’t see transplant patients.

I’m glad I had that GREAT nephrologist in the beginning of this “journey” b/c he gave me lots of great info! I had to leave him when I changed dialysis clinics when Covid hit. My old clinic was a Fresenius clinic with both hemo and PD patients. The hemo/PD clinic had SO many more humans coming in and out of the clinic (and 2 hemo patients had already died of Covid) that I decided to go to a Fresenius clinic with only Home PD patients. I don’t think I ever saw another patient in 2 yrs at the new clinic! Hated to lose my first nephrologist tho. Smartest doc I’ve ever known. I thought of going back to him when released from Transplant Hospital, but he’s close to retirement age.

The Transplant Hospital in Atlanta is a HUGE network of hospitals and doctors! They have over 8 Transplant Nephrologists assigned just to the transplant part of the hospital. But most of their offices are in Atl or far from my house.

I’ve had so many problems with the way the transplant hospital does their billing, I don’t think I’ll ever go to one of their affiliate offices, hospitals or doctors unless ordered to by the Transplant Hospital! It’s a crappy system!

[bluekidney in reply to TaffyTwoshoes27]

The bigger the city the more complex their medical network gets. I finally have also had to see a dermatologist first time in my life. At times I feel it’s a waste of my time. I have to travel almost 2 hours to see him. All my local dermatologists are booked until June of 2023. I’ve developed bad dyshidrotic eczema only on my left foot dermatologist says I will see a lot more skin issues due to the immunosuppressant drugs. I keep being referred back to the dermatologist by the transplant team and I don’t want to be non compliant. He gives me steroids and that’s all he can do since there is no cure for eczema unfortunately. It just becomes never ending visits and labs like you say but I can’t complain this beats dialysis anytime. I can live with the eczema and all else is ok.

[horsie63]

Is cipro a common antibiotic for transplant people? I have refused to take it in the past as it's known to sometime cause muscle "ruptures" especially in athletes. Course I'm no longer doing ultramarathons so it might just be a moot point.

[TaffyTwoshoes27 in reply to horsie63]

Yes, it is, and I’m on the 500 mg 2 x per day. I read those side effects and you are correct about the scary tendon ruptures, joint aches, tendonitis, etc.

There’s a really long list of effective medicines the docs can prescribe.I don’t have a lot of faith in most doctors! It is probably from working as a paralegal in Plaintiff Medical Malpractice.

I don’t care for the “hunt and peck and let’s see what works” mentality of doctors to fix a medical condition without knowing my life’s medical history. But, I’m not a doctor, so I have to just submit to their whims. [Submission….not one of my best qualities.]

[horsie63]

I used to be pretty bad about "submitting" to their so called expertise but as I've gotten over I find myself questioning everything before I do it. When a doc wants to prescribe something new I research first before taking it and if I don't feel comfortable with it I say NO. Statins caused seriously bad daily migraines for 3 months so every time they want me to take them I'm a hard no.

[TaffyTwoshoes27 in reply to horsie63]

See my reply. I shld have replied to you, but replied to my initial post! I get anxious with this medical stuff! Sorry.

[TaffyTwoshoes27]

I hope you’re better now!I was tough thru the transplant evaluations (on the list 7 yrs.) and it seemed the more I questioned and researched and tried to be my best advocate, the less receptive the transplant coordinators and nurses became.

After doing research on this E.coli/UTI issue, there are a couple other reasons that this could be happening, including prolapse of bladder and cystitis of the bladder. Not one transplant person has mentioned these additional probable causes of the e.coli.

Might as well go to Med School, huh? Lol

[horsie63]

The statin episode was several years ago...initially my migraines were monthly for the week of my period but the statins made them way worse. I went through menopause and the migraines mostly stopped. One every now and again and tylenol helps if I catch it early.

[EVee18]

I had a SPK (simultaneous pancreas kidney) transplant in 2018 in NZ, and didn't have any UTIs until 8 months ago when I had my first one (post transplant, although I'd probably only had 2 in 20 years before that). That was pretty mild and was treated with oral abx. However, 2 weeks ago after 2 days of urgent and frequent peeing (I joked to my husband that I was either pregnant or had a UTI, but didn't truly think it was either) I was diagnosed with another one, but this time the infection (Ecoli) spread up to my kidney, so I was diagnosed with acute pyelonephritis which was awful!! I was treated for 4 days in hospital with IV abx, morphine and fentanyl for extreme back and flank pain, antinausea meds since I was nauseous and vomiting, and fluids due to dehydration. Dr Google told me that UTIs (cystitis - lower UTIs; pyelonephritis - upper UTIs) are common occurrences for kidney transplant recipients for various reasons including being immunosuppressed and possibly (I could have misunderstood what I read on this) the transplanted ureter being in closer proximity to the transplanted kidney (see diagram), thus shortening the pathway for bacteremia to travel - in the same way that female ureters are shorter than males making us more prone to UTIs in general.

Kidney transplant

[TaffyTwoshoes27 in reply to EVee18]

Wow! That's serious! (BTW: It is the urethra that causes women to have more UTIs than men. Our urethra is shorter and closer to our anus than the long urethra that men have which is further away).

I am still reeling from my transplant coordinator, with a BSN and CMSRN for certifications and education, told me that the UTI/EColi would NOT travel to my kidneys. I told him I read three prestigious hospital articles that said if left untreated, the UTI/EColi will definitely travel to the kidneys.

I was very, very discouraged and still haven't had a conversation with him about it in person. I did tell him in the email that that's what I had found. He has never said anything else about it. [I feel bad taking his time all the time. He told me the other day he has 300 patients.]. But, that doesn't seem to be my fault. If the hospital needs more transplant coordinators, they need to hire them.)

Get this: He has had me on a strong antibiotic, Ciprofloxacin, for the last 10 days and I scheduled a urine culture for Friday. I wrote him an email Monday to request that he send an Order for a urine culture to the Lab facility. He wrote back and said he didn't think it was necessary to test it again! I was aghast. I immediately called my PCP and asked him to send an Order for a urine culture to the Lab. I don't know what is going on with this coordinator!!

In the interim and several hours later, the transplant coordinator wrote me an email and said he had sent the order to the Lab for the urine culture to see if I still have the bacteria. [I assumed that he had talked to a nephrologist who demanded that he send the lab order to see if I still have the EColi.]

I am very stunned by your story since I was put in the hospital in 2019 for low electrolytes, dehydration and I had an atrial fibrillation (never had a heart issue) after my private nephrologist was telling me I had a virus for almost 2 weeks (his Nurse Practitioner said that viruses don't last that long). I was vomiting and had constipation and once I used a Fleet enema, I felt so horrible, I had a friend take me to the ER. Come to find out, the a-fib was caused from the low electrolytes and dehydration. It scared me to death.

I was likewise stunned to hear that my transplant hospital NEVER includes a urine culture in routine lab orders unless the patient is symptomatic of a UTI. That's just crazy to me. I was asymptomatic. In fact, I called my transplant coordinator to ask him if a new medication he prescribed for me was causing some side effects I was having. He said it sounded to him as if I had a UTI and wrote an order for me to have a urine culture and a urinalysis. The results showed that there was a colony of EColi in my bladder and prescribed medication for 10 days. Then he had me do a second urine culture and the bacteria was still there. He then consulted with the nephrologist and prescribed a stronger antibiotic, which I just finished yesterday.

Well, I go for the urine culture tomorrow. I'm going to cross my finger that it's gone. Once the transplant hospital releases me (at the one-year anniversary from my transplant on Jan 25, 2022), I'm going to ask my private nephrologist to include a urine culture every 3 to 6 months to avoid this from occurring again.

These medical people, am I right? I guess that's why I had a 6-year stint working as a paralegal for attorneys in the medical malpractice field!

Well, hang in there. Thanks for your reply. It was very informative.

[Calebzztop]

Sorry to hear about all the uti's stress and being overwhelmed by the never-ending appointments. ITS exhausting!! The very first infection I had with this 3rd transplant was E -coli infection which went into the kidney and caused a bad kidney infection and my numbers have not recovered yet,7 months later because of my ureteral stricture caused by BK virus in donor kidney. I have definitely had that smell of urine or a maple syrup type smell during antibiotics, uti's and sometimes I just didn't know why..but I can't believe the Dr told you he had NEVER heard of that before?? For me ,this third transplant is like no other...the quality of care, mistakes constantly made and I have to be a constant advocate for myself..but you are completely right,the more you ask or question, the less receptive they are.

My first nephrologist was the BEST! He LISTENED and knew I knew my body best..He was the most intelligent man and the best diagnostic doctor ever.

Now I have the ureteral stricture it's just the same thing done over and over with same result,hydrophrenosis, hospitalization and exchange of pcnu/ nephrostomy tube. My kidney keeps taking hits and getting worse and worse and I had my first ever episode of A fibrillation BAD and I was soooo scared and still am. I just hope they do my retransplantation of the ureter very very soon. They will cut out stricture and use a piece of small intestines in its place. God willing, it works, because it's the only thing left for this kidney to survive .

I hope they can take care of your infections once and for all...obviously we will get one every once in a good while,but not continuous. And I hope you can cut down on appts and how often you need to go in. It is exhausting and frustrating and you just want to have a little break but it is much better than dialysis or losing the transplant too...Thats what I tell myself..though I'm not a candidate for dialysis anymore.

Well again take care and I hope you feel better and I'm sending healing positive thoughts and prayers your way. Stay strong, cause you know you are tougher than most!

Best,

L