Getting UTI as transplant recipient

[Kbristow]

Wondering how many transplant recipients get UTI (or more often than before transplant). Never had one until after transplant. Usually resolved with antibiotics (though my doctors always keep me in the hospital until urine culture comes back and they can send me home with the right antibiotics). A transplant recipient friend said her UTI led to 104 degree fever and sepsis(!) and loss of some kidney function. Eventually she was okay again. Wondering what others' experiences are like.

[Tahmed251]

I always have UTIs after transplant its normal thing. In 4 years I had a about 10 episodes of UTIs. Sometimes it comes from not drinking enough water.

[Redoralive]

I have had chronic UTIs since my transplant 3 years ago. 1 lead to sepsis and all of them lead to hospitalisation. Was seen by a urologist and given prophylactic antibiotics which helped slightly but it's just something I've learnt to deal with.

Personally I've found that sex and not drinking enough water puts me at a higher risk.

[DexterLab]

I had one UTI in 4 years. It got nasty, temp over 103. Went to the hospital and got intravenous antibiotics to knock it back. They ran cultures until they found the exact bug causing the problem and could assign the correct normal antibiotic to do it in. A lovely weekend. Good luck.

[LavenderRabbit]

I have had 2 UTIs in 2 years since my transplant. The first one put me in the hospital. What works for me is to have both of us wash up before hand, including scrubbing the fingernails. And most importantly drinking at least 12 oz of water 30 minutes before so I can pee a lot right after. Not sexy, but gets the job done.

[Darlenia]

My hubby had a couple of episodes while on dialysis but his transplant led to constant, never ending utis. He was in the bathroom every couple of hours night and day. Prostate issues were ruled out and the conclusion was that it was diabetes related. Diabetes led to his kidney failure too so they're likely right to some extent. He was told to catheterize himself daily and take antibiotics if he didn't want more utis. My hubby found this completely unacceptable. After some thought, we remembered that his gastroenterologist had prescribed probiotics for an earlier bout with the horrible c-diff. So we ordered a highly recommended probiotic for urinary tract issues online and since then he's been trouble free. And, yes, his transplant center approved it - at half dose of the recommended amount. (Warning - not all transplant centers will agree to the use of probiotics.) In retrospect, we suspect that immunosuppressants destroy the capability of the body to keep the good/bad biome in balance, allowing the bad to surface. Anyway, so far, so good. We hope it lasts forever.

[Jamok in reply to Darlenia]

hi, what was the probiotic?

[Darlenia in reply to Jamok]

Hi. It's 21st Century Cranberry Plus Probiotic Tablets, 60 Count. His center told him to take to half the dosage; e.g. one tablet per day, not the two listed on the bottle. It took three or four days for the center to approve it, I think they involved their pharmacist. Anyway, my husband hasn't had any utis since taking it and his transplant is doing fine. We order it from Amazon. amazon.com/gp/product/B01HC....

[lkhenderson]

I stayed on an antibiotic for an entire year post transplant to assist in preventing UTIs. After I got off the antibiotic I have had about 3 over the next 3.5 years and 2 of them came after trying to take a bath. Def recommend no baths and also bought a very inexpensive bidet off amazon that my husband installed super easily with no electiricity etc. it does not have a lot of bells and whistles but works great.

[Kidme]

After a string of utis post transplant what has worked for me is estrogen cream, just a small amount, used daily. A urologist recommended this but it didn't really work for me until I switched it to daily use. I believe this is being recommended more often now for post-menopausal women . If you're in this demographic, I recommend you talk to your doctor.

[gardengirl97301]

Be sure to drink lots of water in the morning to flush out your kidney. Doctor told me because we have a repressed immune system it is easier to get UTI’s. Since I’ve been drinking more water in the morning and throughout the day I haven’t had a UTI.

[Blue-Quilter]

I actually had a UTI going on when I was transplanted, something I thought would have ruled me out, but evidently not. In the first year post transplant, I had 8 UTI's, one of which landed me back in the hospital because it had traveled to my new kidney. After the 8th one, they put me on an estrogen cream, but it didn't work; I had 3 more in three months. At that point, they put me on a low dose of Macrobid, an antibiotic that is targeted for UTI's to prevent them from happening in the first place. That worked pretty good for a year, then I got a couple more, so they switched me to cefpodoxime. That was this past October, and I haven't had a UTI since. I drink between 2 and 3L of water each day, which is supposed to be enough to prevent them, but evidently not. At 3.5 years post transplant, I'm learning to just roll with the issues as they come up, as opposed to totally wigging out like I did initially! It finally occurred to me that stressing out over the situation did nothing to resolve it. Now I do my research to see if there are any other alternatives, and what the risks are and discuss my findings with my team. Sometimes what I suggest is an option, sometimes it's not because of other meds I'm on or other risk factors I wasn't aware of. I've learned to trust my team. I hope you find a solution if recurrent infections become an issue, but my best hope is that tis was an isolated incident for you. Take care.

[Kbristow]

Thank you all for your very helpful comments.

Question: I fortunately don't experience any pain in urination during a UTI. Do you find that to be true for you too? My doctor said transplant recipients tend to not experience pain as often; that we often don't have the same symptoms as others with UTI.

My doctor also said taking cranberry pills (more effective than cranberry juice) will make the urine more acidic, creating a more hostile environment for viruses.

[Blue-Quilter]

Your doc is spot on! I've had no pain with my multiple UTI's, but then had very little even before the transplant. My UTI's generally start with a feeling of increased pressure in the bladder, and the feeling that I need to pee, even though I just went 20 minutes ago. Then the urine itself is usually cloudy and the kicker is a foul order. If I have the first two symptoms, I watch it closely for 12-24 hours. If it turns cloudy, I take a sample to the lab to get it checked. Oh yeah, that's part of my protocol: I have a supply of sample cups with my info label on them for "just in case." Thankfully, I've only had to do that once since we came up with the plan!

I haven't tried the cranberry pills, but if it means getting off the antibiotic, I'll give it a try! I'll mention it at my next appointment. Thanks for the reminder.

[BabyTee]

My doc said over 50% of patients have a UTI within a year of the surgery at my center.

I am 10 mo out from an SPK Tx (pancreas kidney transplant) and I have had zero infections so far. I am diligent about hygiene, and drink enough h20. My Tx said to be careful about gas and constipation. When constipated, you may not be able to empty the bladder completely. If the bladder doesn't empty completely, then you might end up with a UTI.

SPK patients are more likely to get an infection and are required to drink about an extra L/qt of h2o daily.

[EricaTO]

This reply comes after a couple of months and also contradicts some of the advice of others. So posting FWIW only.

Since my transplant over 2 1/2 years ago, I have had constant UTIs--just about every month. I get symptoms, then a urine test to identify the bacteria and susceptibility, then meds, then am good for about 1-2 weeks, then get one again. The bacteria is not always the same; most frequently Klepsiella but occasionally E Coli or Enterococcus. My Infectious Disease doctor put me on a preventative antibiotic for about 6 months, but stopped when I became resistant to that medication. Recently, a UTI progressed to sepsis, and when in the hospital the ID team visited and provided some thoughts that may or may not be of use to others:

1. There is no good evidence to support cranberry supplements.

2. There is some evidence to support D-Mannose, although only for e coli. But it can't hurt to take it.

3. Water is important but don't need to drown in it; the color of your urine tells if you have been drinking enough.

4. Bacteria feeds on sugar so can't hurt to limit (this was part of a discussion, don't know if any evidence for this).

5. Void every 2 hours to keep your system flushed out.

6. Don't use the bidet (I know this works for some but maybe that depends on your anatomy).

7. If female and past menopause, use vaginal estrogen; evidence supports.

8. Probiotics might help but most should be refrigerated and usually are not sold that way. Also, there many different kinds so hard to know what is effective for your biome.

9. If you don't have symptoms, you should NOT have a urine test. Treatment is not necessary and will just increase the likelihood of antibiotic resistance. (I know this sounds risky but read about this on the Infectious Disease Society website).

10. If you DO have symptoms, get a test. Don't try to flush it out. I did this and ended up in the hospital.

To summarize, these recommendations did not come from me, but from Infectious Disease doctors at a highly rated medical teaching facility. Clearly, you should do what works for you but maybe helpful to discuss these thoughts with your doctor. Wish you all well.