UTI experiences,what are they? Appetite lost?

[GardnerADK]

My spouse received his kidney transplant 5.5 years ago and this week has his first UTI infection and is on "Cipro" antibiotic 5 days with a refill if needed. About 2 days prior he lost his appetite and foods tasted "off". He is diabetic on insulin before every meal and at night before bed too. Curious what your experience has been with a UTI. After 42 hours he finally ate a homemade low sugar banana apple muffin I made since I make them weekly for myself. We were supposed to leave today for our vacation but cancelled so he could be home to recover. I see positive changes from the antibiotic, but this will take time for his low energy he always has to be his "normal energy" . Thanks

[ShyeLoverDoctor]

Immediately post-transplant (I’m talking still in the hospital, it was likely from the catheter) I had a UTI. I was on IV vancomycin (a powerful antibiotic ) for ten days. They put a PICC line in my arm and I had to go to an infusion center 4 hours at a time! Never made anything taste different. Never any symptoms - no burning urination or anything like that.

[GardnerADK in reply to ShyeLoverDoctor]

Thanks for responding and I hope your journey post transplant is a great one. THis is the first UTI my spouse has experienced in over 5 years and the "Cipro" antibiotic is working well but causing high blood sugar numbers which is not good. Thanks for writing.

[Darlenia]

Ugh. My husband started getting utis regularly after he went on dialysis and continued post transplant. (At one point, all the antibiotics eventually led to him getting c-diff, a serious superbug.) Utis can be particularly hard on seniors - sometimes producing weakness but also bizarre behavior. Very scary when latter happens. But symptoms eventually do reverse, thankfully. If your hubby gets more utis, you'll probably want to find a reason why that's happening. We finally discovered that my husband gets them because his diabetes created nerve damage leading to urinary retention. That, along with the immunosuppressants and probably the high sugars, creates a breeding ground for bacteria in his case. He has finally found a way to keep his utis in check using a probiotic with cranberry in it; it was approved by his transplant center. Sending encouragement your way. Your hubby should turn the corner soon.

[GardnerADK in reply to Darlenia]

Thanks for writing me Darlenia about your husband's UTI experiences. How long has he had the donated kidney? Was he diabetic before the transplant? Thanks for writing me back. This has been my husband's first UTI in over 4 years and I hope this is not the new trend for him. He lost his appetite before receiving the antibiotic last Fri and for 42 hrs did not eat any thing. Since taking the med, his appetite is slowly returning back and food does not taste "off" and the low grade temperature he had the first 3 days has ended too. I know about c-diff from my experience with my mom in the hospital and that is a bad bug indeed.

[Darlenia in reply to GardnerADK]

My hubby is 3 years post transplant. Unfortunately, he lost his kidneys to T2D. As he was approaching dialysis, he became very serious about taking care of himself, keeping an eye on sugars and carbs and dropping a lot of weight. He controlled his diabetes so well, he went off insulin completely, amazing everyone. But that action came too late. - he was forced on dialysis, the only way they could bring down his swiftly rising blood pressure. That's when his utis appeared. His uti symptoms were largely urgency and pain, yet not being able to pee. He was constantly in the bathroom, but nothing to show to for it but more misery. (Your husband's situation (fever, lethargy) is common too. The worst, imo, is when someone gets dementia type symptoms.) My hubby was given lots of antibiotics over time, including intravenous meds, that eventually culminate in c-diff. The utis cleared up in time for him to get a transplant, but then everything returned including the diabetes. Antibiotics were resumed. Self-cathing was recommended, but my hubby resisted and, just in time, discovered cranberry probiotics worked wonders! Interestingly, the c-diff experience actually prompted us to check into probiotics for utis. Probiotics were recommended as an additional thing to use to recover from that situation. So, on a wing and a prayer, we thought it might work for utis too. And it did! Your husband's case seem to be a single episode. I suspect it will stay that way. If not, just know that things can be done to turn it around. Life is very good for us today. I think yours will be back on track soon too.

[GardnerADK in reply to Darlenia]

HI Darlenia, thanks for sharing this arduous difficult journey your husband's health has experienced and you with him helping however you could. My spouse received his transplant due to polycystic kidney disease and never was on dialysis. The first 14 mos after transplant was filled with assorted serious problems including a low grade rejection. The rejection was resolved in a week in the hospital, but while there found out the hormone from the kidney that tells the bone marrow to make more red blood cells was not working, so I had to give him a medication by shot 3X a week for 8 mos and finally that resolved, then before resolution for that he had CMV. He was so very weak and lethargic 14 mos. That was late Jan 2020, then covid19 arrived mid March 2020. All of 2019 we were isolating due to all these problems and his immunity was so low. We still live like March 2020 to this day! His controlled diabetes that he had 7 years before transplant worsened due to antirejection med side effects and it has been difficult to keep his glucose where it should be, but he tries very hard. His energy was 'better' before the organ transplant compared to 5.5 yrs later. From my research on fatigue and depression and organ transplant, this is common and not enough research has been done on the topic from what the assorted medical articles I've read using my college online library sources. Everyone is different and my spouse who had cancer 34 years ago says he feels like he is on chemo everyday due to the side effects from the medications. All his doctors know what is happening without new ideas to change things for him. He just feels lousy all the time and this was before the UTI came (first one in over 4 yrs). So I truly appreciate your telling me your journey with your husband. I wish you both the best.

[Lady1984 in reply to Darlenia]

hello would appreciate it very much if you could share what the brand of probitics ur hubby is taking for the uti and also what kind of things he is doing to reverse his diabetics plzzzz .. i’ve recently been diagnosed with type 2 daiebtes xx

[GardnerADK in reply to Lady1984]

Hi Lady1984, My spouse took 5 days of an antibiotic his nephrologist ordered . I call it "Cipro" for short name. He is not taking any probitics (probiotics). He does eat Greek yogurt for breakfast. He was diabetic before transplant and was taking one insulin at night, slow release "Levemire" for 7 years and nothing more and kept his A1C numbers in the right range. He never took another insulin before each meal (Novolog ) until he was on antirejection meds, which can easily cause your blood sugars to run high for some people no matter what they do to try to get the numbers lower like exercise and eating. So my spouse was diabetic before the transplant and it worsened being on antirejection meds. Y Ou are better to talk to your doctor about the new diabetes diagnosis about what you could do about that. I wish you all the best. My husband is doing well now after he took the 5 days of medication for the UTI, but we wait and see what happens next. This UTI was new for him. I wish you all the best.

[Lady1984 in reply to GardnerADK]

thank you for getting back to me ..

[Darlenia in reply to Lady1984]

Hi Lady1984. Sure! I'll be happy to share what worked for my husband. My husband managed to eliminate antibiotics for his utis by switching to to this supplement: 21st Century Cranberry Plus Probiotic Tablets. His transplant team agreed to it but cut his dose in half so he takes 1 tablet daily. All his issues from utis quickly disappeared (although they are still there but at insignificant levels). He goes to the bathroom normally. He's been doing this for two years and everything has remained stable. Interestingly, several transplant people in a FB group are also using this or similar products - some at full dose. As always, ask your transplant nephrologist or his approval this and the dosage recommended for you.

Regarding diabetes - my husband did get off ALL diabetes meds at one point. Diabetes is caused by high glucose which is fueled by sugars and carbs (which turn into sugar). It narrows (plaque) and stiffens vessels of all kinds. His doctor told him to say away from sugar and to eat no more than 100 net carbs a day. (Carbs minus fiber equals net carbs.) He learned that high carbs items include flour-based products such as noodles, breads, cakes and more; rice; potatoes; sweet fruits including bananas, etc. A popular saying is "for carb management, avoid most white foods". As alternatives, we use zucchini (chopped, sliced, spiralized) to replace noodles, we used cauliflower rice for rice or mashed cauliflower for mashed potatoes and so on. We often use another vegetable (green beans, carrots, etc.) to replace potatoes in meals too. In the fruit category, we switched to strawberries, watermelon, cantelope, and other "berry" type fruits. Flour for baking can be replaced with superfine almond flour or coconut flour. Interestingly, our dinners have become more flavorful! If you really think about it, flour and rice and potatoes, for example, don't have much taste. So spaghetti made with zucchini is very, very good! If you are like to follow recipes, Keto recipes are very helpful in food preparation - keeping your carb intake very low. Also, it's very important to read labels when you're shopping for groceries. Keep in mind that net carbs (carbs-fiber) is what you are working with. Many grocery stores like Aldi are now carrying low-carb breads (some also sell low-carb cakes), but again check the labels to make sure. Unfortunately, it's sad that immunosuppressants encourage diabetes. Many transplant patients struggle with it. Make sure, however, that a doctor follows you doing this. This type of diet can easily lead to weight loss, requiring adjustments in prescriptions, etc. My husband remains slender today, although he is forced to take a small dose of insulin. He continues to watch his sugar and net carb intake carefully. I truly hope your diabetes is mild enough that you come off insulin completely! Indeed, there are some transplanted folks have have done so.

[Lady1984 in reply to Darlenia]

thank you ever so much for taking ur time to give me this info appreciate it so much

[EmTexas]

I have PKD and used to get regular UTIs . The trick is to catch them early. I’ve since had my native kidneys removed and not a UTI in sight - admittedly it’s not been that long…5 months.

I recognize the sign for a UTI, I can feel it immediately. I rarely have sharp urine feelings or the need to pee often but I just feel off and start to feel some vague pain. If they reach your kidney, that’s not great and candidly you develop a pretty horrible fever with chills. I had even more UtIs prior to transplant. Generally though if I treat it fast (I just call up my nephrologist and they send me for labs), I feel better within a day or two. I honestly hate cipro as it gives me a headache but it’s one of the most effective for kidney infections - I tend to get the bacteria tested to see which type of antibiotic works best.

I’ve rarely had to cancel plans, sometimes a dinner one night…but the two times it went into my kidneys (pre transplant)- those were beasts and the fever chills felt scary. Prompt treatment and things tend to improve pretty rapidly (3 days or so) . I always get a lab test after to ensure the infection was killed.

[GardnerADK]

Thanks EmTexas for commenting on UTI's. I hope your journey without your native kidneys goes very well. Take care!