My spouse had a Kidney transplant over 6 yrs ago and encountered his first month of 3 UTI (urinary tract infections) in 30 days starting late Nov2024. The 3rd UTI arrived 12/24 and on 12/26 we were in our local Emerg room at our local hosp per his nephrologist telling him he would require days of IV antibiotic and lab work and oversight inpatient. While in the ER for 7 hours waiting for a room to open, we kept telling doctors, nursing, blood techs , CNA's about my spouse had a kidney transplant, is immunocompromised to Covid19 and other viruses and we wear KN95 masks all the time to prevent Covid19 though we still live isolated like the pandemic just started. That is why we had not had COVID-19 or any upper respiratory or GI illness in over 6 yrs. I would guess maybe 10 % of employees caring for my husband wore masks and the rest did not listen to what we said about wearing a mask repeatedly. An IV and antibiotic drug was chosen by several doctors and consultation with his not present nephrologist and started in the ER with hydration IV too. I felt like we said over and over in the ER and later in his room 'who my spouse was and his immunocompromised health which had us masking' to deaf ears. People did not mask up. I left about 90 min after he was settled in his room and came home to eat first time in 10 hrs and drink a lot of water. I rarely removed my mask while there. I got up 530am and talked to his night nurse to see how his night went. I then explained who my husband was and his kidney transplant journey and how we live very isolated for many years and how we were upset people caring for him did not put on a mask no matter what we said and I started to cry. I was so very upset feeling like we were in a Twilight Zone episode. When I came into the room that day at 1pm the door was closed and a sign 'Per patient request, please wear a mask to enter" and I went inside and stayed 5 hrs watching movies with him to pass the time. He advocated for himself well with insulin given many hours before a meal, the food was dismal /very processed and not a diabetic diet, and several medications were given that he should not have per transplant team and other issues he tried to rectify. He gave up on the diet and insulin problems and said he'd get things back on track at home. On 12/30, Mon he was discharged after 5th antibiotic by IV was done and then another oral antibiotic we picked up at drug store enroute home. Got home 1030am and by 7pm he had his first cold symptoms and 24 hours I had the symptoms. Jan 4th we both tested positive Covid19. I called our primary Dr and he allowed me to get Paxlovid which I took 5 days. I tested neg COVID on 1/12 and my husband is still positive on 1/15 which did not shock us. We both have a deep dry cough when we are awake not sleeping. My husband's normal daily fatigue of years is much much worse. What I find odd is his local nephrologist knows we both have Covid19 but he has not contacted my husband to check on him. I called this Dr on 1/16 asking for his nurse to give a message to the Dr to contact my husband (he thinks this is all overkill, but I don't). This nephrologist has not contacted my husband and it is 1/18. I wrote two complaint 2-page letters to the hospital upper management to release the anger I feel for all that has happened . I was detailed and respectful on all I wrote after days of clearing the brain fog first to write it. I feel so little trust to this hospital for their not listening to us. When people come in for care wearing a mask , out of respect, wear a mask! How difficult is that. I will never know if this issue directly caused us to get positive Covid19, but we had not gone anywhere before or during Christmas week and afterwards through now even. I feel so numb and sad by this experience. What is your experience?
Hospital employees caring for spouse wil... - Kidney Transplant
Hospital employees caring for spouse will not wear mask, we both came home with Covid19 first time 12/30/24
Each and every employee at the hospital should put the mask on when patient requested it. My guess is that ER is such a hectic place they just didn't have enough attention to remind others or remember. Not an excuse but ER is not the same as outpatient clinic as their priority is saving those with critical time sensitive issues.The most important thing is to get better soon. The immunity you gained from being infected did give you better protection against the next exposure. I hope your husband improves soon and finds a better prevention to UTI.
Hello LisaSnow, Thanks for writing and your caring spirit of us. In 6 yrs after transplant , my spouse was fortunate to never have a UTI until late Nov 2024 when the first started, th en 12/4 another , then 12/24 another. I hope the 4 different antibiotics he was on in 35 days killed the stubborn bacteria. The ER while were were there did not appear hectic but maybe they were understaffed due to Christmas. We did not feel like we were ignored and things happened to care for my husband fast. We know the inpatient beds are full often, so we knew there was a 7 hr wait. My issue is : how difficult is it for a caregiver to come in a room and observe people wearing masks to put one on? His chart said he had a kidney transplant and immunocompromised! Thanks for writing. It means alot. You take care too.
Without verbal reminder I don't think the individual staff would know to put the mask on because the patient is wearing one. In our cancer center infusion unit not all nurses or staff wear masks. You would think they all should - given the patient population. Hospital simply cannot force nurses and staff to wear masks wth the shortage of staff and after the hell COVID deniers raised about "violation of human rights". Sad isn't it?I hope his covid symotoms improve each day. Try to take a walk with him outdoors each day.
HI Lisa snow, I did tell caregivers directly over and over please wear a mask in the ER and in his patient room seven hours later. RIght this minute his fatigue is worsening from positive covid19 and his UTI has returned again today after 4 different antibiotics in 35 days. One of these antibiotics was by IV 5 days. His fatigue for years after transplant 6 yrs ago never allowed him to take a walk with me outdoors. All his doctors know how his antirejection meds for 6 yrs have severely lowered his quality of life. THey have no more suggestions to improve that. I have written on this blog in the past about all this. So right now we will probably be soon enroute back to a hospital for the UTI returning again. THanks for finding all I wrote about masking 'spot on in that you understand too. Take care.
I agree with you about those Covid deniers. Interestingly, in dealing with all the Covid issues, most hospitals have since upgraded their air filtration and purification to the highest levels possible - removing upto 99.97% of particles - continuously cycling and processing air throughout rooms. My son works in the automotive fleet industry and those buildings now have these systems in place too - so he never inhales exhaust, etc. But that wouldn't fix what people spread by touch, sitting in chairs, etc. Anyway, it does make me feel a lot better about the air quality in hospitals...at the moment, that is.
HI Darlenia, I know there are some large businesses that are doing more to improve air quality in their HVAC sy stems due to viruses. Glad your son has that in his line of work. Wish more people would do this though. Enjoy your day. UTI #4 is back as of yesterday, 4th in less than 2 months. Waiting to hear from nephrologist now. hugs
Aww....no! Not your 4th uti in less than 2 months! As you undoubtedly remember, my husband had constant utis too and he was finally diagnosed with diabetic bladder dysfunction which meant he was always retaining some urine, prompting utis. They wanted him to cath himself daily. He tried that for a while and then, spluttering and muttering, said, "What the hey, no way!" We found a good natural cranberry/probiotic supplement online which works like a charm (no antibiotics at all). Hubby continues to have a constant uti but it's very low-level and stays that way. Sure, he spends a little time in the bathroom to void himself naturally, but we're okay with that. His team is also satisfied with this. Hubby's appointments are now every 6 months with the urologist, quarterly with the nephrologist. Finally, all is good; he has a mild discomfort when urinating but has had no major, painful infections since doing this. He's now wondering why no one recommended this, instead of simply handing out antibiotics that didn't fix anything and then directing him into self-cathing. Anyway, at the time, I did my due diligence, askingfor feedback about this with transplanted folks on a very large FB kidney site and was surprised to see a good number of folks have been doing this along! Many take the full recommended dosage on their bottles. (My husband's dose was cut in half because of the worry they might interfere with his meds - Envarsus, Myfortic, Prednisone.) If you can, I'd keep this option on your plate to consider - especially if the prescriptions continue to fail and self-cathing is recommended. Heck, nothing ventured, nothing gained. Sending hugs back to you - you will find relief, you're a trooper!
I hope both you and your husband feel better soon. I haven't been transplanted but am on hemodialysis. I got Covid a couple years ago...my husband brought it home from a wedding he went to....and got sick as a dog despite having all the vaccines. UTI's are awful so hope his is gone. The hospital is the last place I want to be.
Thanks for your caring spirit horsie63. Right now the 4th UTI since 11/22/24 has arrived yesterday and we are waiting to hear what his local nephrologist wants him to do. Thanks and it sure is sad that everyone ,so far, feels that a hospital post 2020 March is not where someone immunocompromised wants to be at; but sometimes there is not choice. hugs
So sorry you had this experience. All i can say is that hospitals are not what they used to be. I have gfr 3b and contacted covid. Because I couldn't drink water due to a swollen throat. I went to the ER and was hospitalized for IV hydration. No one who treated me wote wore a mask; they gave me two medications that were not mine; unidentified people came in my room all day long for no reason; I couldn't swallow water, yet they brought me large meals and chastised me for not eating them; I couldn't stand up due to weakness, yet they insisted I shower without help, i could go on, but I won't bore you. I was glad to be discharged. I have no idea where they got the staff for this brand new hospital of a famous chain, but none of them were like the nurses I worked with 25 years ago. Years ago. None of the stuff you and her husband endured would have happened. The same for my case. It's a shame.
HI drmind, Thanks for your caring spirit of my spouse and I and all I wrote. I am very sorry to read your experience and needing to be in the ER and then admitted inpatient. I used to be a diet therapist in a hospital in the Air Force and received over 800 hours of training and hands-on experience. When I saw the meals given to my husband while inpatient and he's on 2 different insulin shots a day, I was shocked at the dismal highly processed foods and the meals were not diabetic though he told everyone he saw about the menu full of sugar. He got so tired of talking about it that he ate around things and knew he'd get his glucose back in check right when he came home. The food was dismal and I felt bad for patients who have no one to advocate for them. Also in my complaint letter to management at the hospital I also discussed my brother in law in VA who died from long covid19. I hope my spouse and I don't come down with that, many people do and it does not matter how severe or mild covid19 symptoms are.
I hope you have an advocate for your health. I truly do. Take care of yourself. Thanks for writing.
So very sorry for the bad experiences you had. I hope all is much better now. I certainly understand where you are coming from. I am a kidney transplant patient too. I was hospitalized for severe diarrhea after losing 20 lbs. in two weeks. Not only that but I also am a MERSA carrier and should be in a one patient room and anyone coming in is supposed to be gowned up and masked. I was put in a hallway with beds so close they were almost touching. Also with the severe diarrhea I had to get a nurse to get me a wheelchair and quickly rush me to a bathroom. That in itself was so emotionally draining. After a couple of days of this, I noticed some of those patients next to me were being moved to rooms that opened up. At least two of those patients had been up walking around and visiting. I was so upset I left the hospital at midnight knowing I would be better off at home. I felt like nothing was done by the letter I wrote to the hospital but the next time I went in, I had wonderful treatment. I always hope that when hospitals get letters from their patients, they are able to learn from them and hopefully they do.
Hello Boosgrnma, Thanks for responding and explaining in detail your horrific hospital stay and reason. My heart aches for what you went through. Did you have an advocate with you? Thanks for your caring spirit of us. I wish you well now and in the future. My mom in NC had MERSA so I know about gowning up to be with her before she passed away from several problems at the same time. All my best on good /great health in 2025.
so sorry for the experience you had. I’m suprised at the no mask thing with hospitals employees I’m in hospital right now because the surgery for a graft for dialysis didn’t happen cause heart problems I just being monitor now but every employee from nurse to cna to dialysis tech to cafeteria worker to house cleaner here have wore a mask I guess that a blessing for me I thought all hospitals protocol were to wear mask esp the amount of Covid and rsv and fly going around . I hope your husband recover soon we know it will take longer then you cause his immune system system it sad when you are doing everything you are supposed to too and he goes to a hospital setting where they don’t seem as concern . I haven’t had transplant yet but I recall talking to transplant team how you have to be careful we can control what we do but we can’t control what others do I understand how that would make you not want to go out but I also understand how it a new life and you want to live and go places but it can be a scary world
Hi Beachgirl32, I am sorry you need to be in a hospital now and hope everyone caring for you continue to wear the masks and you obtain what your body needs to leave for home soon. To me it was the respect not shown when we explained why we needed the people caring for my husband to wear a mask. Like, didn't you learn anything from the pandemic? The caregivers were professional and kind but something was missing it seemed with masking that seems common sense! Not everyone has an immune system that works well that walks in the door of a hospital. My spouse and I have chosen to live as we do 'still' partly because of covid19 and other viruses, but mainly due to how he feels everyday being on antirejection meds and the many negative side effects he has everyday . I've written about all that in prior posts on this blog, so won't go into all that. It's a novel to explain. Anyway, please take care of you! Thanks for your caring spirit.
I'm also a spouse to a man with a kidney transplant. My husband also gets utis and has been to the ER for treatment. Unfortunately, there is a big shortage of doctors and nurses as well as lack of rooms in hospitals in the US today. So ERs are a madhouse, often with patients stacked in corridors or in a big room on stretchers - those in dire need of attention will get priority. In all the medical establishments we've landed (urgent care, hospitals, doctors offices, etc.), the only place where staff still wears masks other than operating rooms is on our transplant center floor- probably because some patients sitting in the waiting room are still are on very high levels of immunosuppressants. They use the standard blue low-level masks, not serious KN95s. (Why is this? Could it be that keeping one's sense of smell can be very important in certain occupations - health, automotive, etc.? Ironically, my nose detected my husband's massive uti - not a test - and triggering action.) Anyway, we handle everything by being proactive. We keep ourselves very up-to-date on vaccines, wear masks and use sanitizers as needed, and generally try to stay out of emergency rooms and so forth. Yet viruses are sneaky. My husband came down with Covid only two months out from his vaccine - old vaccine given at the time since new one wasn't available yet. His case was very light; his nephrologist simply referred him to over-the-counter meds. I never caught it. He is fine today. Also, we are very mindful that, while no one wants to catch an illness of any sort, the vast majority of transplant failure is due to host-graft rejection issues and the wear-tear of immunosuppressants. Knowing this, gives us peace of mind and and ability to function well in the community at large. And, lastly, we spread optimism to each other whenever a health event occurs. I discovered my mind will serve up endless dark calamities if I don't take charge of it. The negativity fed on itself. Actively stepping in and changing the direction of my thoughts has been a very positive step for both of us - brightening my day and my husband's day as well. Hoping this situation is behind you soon and your days ahead, too, will be calm and peaceful and optimistic.
Hello Darlenia, Thanks for your caring spirit and all you wrote here about your experiences with UTI, Covid19 and other things with your husband. The last hospitalization for my spouse was 3 months after his transplant Feb 2019 with a rejection of the organ occurring. He was in a different hospital where his transplant team works for 5 days to reverse this rejection. That was precovid19. He and I always stay up-to-date with vaccinations of all kinds. Our ER when we showed up was not a mob scene from what I looked around and observed. My issue is the respect of wearing a mask when you care for a person with an organ transplant who is also wearing a mask. That is my issue in all th is. Nothing is 100% in preventing someone getting a virus or something , but just the respect of it all bothers me alot. Even at our transplant center when we went Nov 2024, alot of people working there were not wearing a mask that we spoke to, but the caregivers were wearing a mask. It is day 20 for my husband to have symptoms of covid19 at home and I'm watching carefully to see if a change in his lungs occur due to the constant dry coughing he has all day long. We know this cough is very much a symptom of covid19. His fatigue has always been a huge problem before getting covid19 due to the negative side effects he has from the many medications he takes but now the fatigue is way worse and a new thing to observe. My hope is in time, whatever that is, he will feel better and the symptoms he has now will go away. I know being on immunosuppressant meds makes healing slow going. Thanks for writing.
Sorry for your bad experience and glad you both were advocating for him. My experience staying in the hospital the food sucks and I have to be on top of them about my meds or they don't give them on time or try to give me things that could harm my kidney. I do feel bad that you both live such an isolated life. I don't wear a mask even with me having anal cancer on top of a kidney transplant. I also am a Certified Medical Assistant. Now if someone has a cough or I think they could have the flu I wear a mask I am not a complete idiot. I won't live in isolation I fought to hard to get my kidney and I know my donor wants me to enjoy life. I am not saying that living in isolation is wrong if that is what you both have agreed to do to make you feel safe than keep doing it. I am glad you wrote a letter to the hospital and want the doctor to check up on your husband that is what should be done. You keep up the amazing job your doing. Also, might want to look into a urologist for the UTIs I have to take a daily antibiotic to keep from getting constant UTIs. Hugs
Thanks for sharing your caring story about your life. I wish y ou all the best. For my spouse since early transplant 6 yrs ago, the antirejection meds are a huge problem in his body with all the many negative side effects they cause for him . He told me long ago it was worse than being on chemo drugs when he had cancer long ago and went into remission. All his many doctors and transplant team doctors all know about how his body has so many problems being on drugs for the kidney and have tried many times different doses and type of meds for immunosuppresants. He has gone through alot and felt better prior to transplant with GFR at 13. He is a rare story for I rarely ever hear on this blog anyone dealing with ongoing issues that keep a person from living a full life.
Thanks for caring and I wish you all the best. I respect your choices about isolation.
My body reacts differently to medications too. Since my transplant I was missed diagnosis and suffered for a month 1/2 tell someone tested me for Addison disease, had a doctor lie to me put me on prednisone and take me off one of my antidepressants saying I could switch back in 3 months that was 4 years ago. I am still on prednisone. That's caused me to have thyroid issues and low blood sugar. I kept telling my doctors at the transplant center my scar hurts in different spots mine goes from sternum to pubic hair line by the time they finally did a scan I had over 12 hernias that needed repaired. My gallbladder went bad that was the easiest surgery. Oh when I had my transplant they refused to give me any pain meds except Tylenol! I have more but just wanted to tell you so maybe it helps to know someone else goes through a lot too. I know when I hear about others issues it makes me not feel so alone and understood. Hugs
LittleLinda50 , I am deeply sorry to read y our long history of serious problems with doctors ignoring your medical needs and the end result of that! For my spouse, his #1 problem has not been the kidney surgery , but the many medications he takes for antirejection, his insulin problems are worse now due to meds he takes and the many negative side effects he has from these meds that from all my years on this blog (since 5/19) most people, thank Goodness, do not live with in a severe way. My spouse has not had any quality of life due to all this. Now the problem is frequent UTI's after 6 yrs with organ, this is the new problem. So now he is refusing to contact his doctor. He is done waiting for something positive to occur so he can have a semblance of a life. I support anything he desires. We have been married over 45 yrs and I know him deeply. He already went through chemo for 9 months 35 yrs ago and says that was a picnic compared to the first 2 yrs after transplant with so many problems. I won't fight him on this matter of calling his dr. Patient advocate manager called me yesterday about my 2pg letter I wrote to the hospital stay 12/26-12/30 for the IV antibiotics for UTI #3, and they dropped the ball so badly caring for a person who is severely immunocompromised, our trust is gone. I called his dr and he contacted his dr with uti#4 and still the dr has not contacted us back. We are exhausted and tired after 6 yrs.
Big hugs I understand I also am recovering from Anal cancer and the chemo almost killed me. I get the I am tired and I am so glad he has you! I have only my kids and my very small extended family. I am greatly appreciative for all my family but to have a partner through this would of made things nicer. One of my sisters was by my side when the chemo was killing me and while I was in the hospital she was my best advocate! I need to sit down and write a book about everything. I also got divorced the day I had my transplant! We all should write a book about our stories! Hugs
Good lord,your expeience sounds like mine, St Pauls Hospital by chance? Yeah self advocacy is where it is at.
It was in NY State ,and I am very sorry you also had problems with people in a hospital caring for you not wearing a mask. Hugs to you
may I ask where you are located or what hospital you are describing? I can’t believe that the hospital wasn’t more protective.
Feeling safe in public after transplant
Miscroscopic blood in urine tests 
