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Hi, @dotygl.
I am so sorry for what your husband and you have gone through. As a kidney transplant patient myself, I too , have noticed the laxity sometimes in healthcare workers not taking proper precautions to protect those of us who are immunocompromised. Many workers don't wear masks. Some ask if I would like for them to don a mask. Of course, my answer is always yes. But I think they shouldn't even have to ask. They should automatically have on a mask when interacting with immunocompromised patients. That's just my opinion. I basically live in masks and never leave the house or go around people (individuals or groups) without having my mask on. I am concerned about my safety every time I have a doctor's appointment, lab draw, or diagnostic scan. I was absolutely petrified on New Year's Eve in 2023 (just one month after my transplant) when I had to go to the emergency room. It was packed with people who were obviously sick with respiratory illnesses. After checking in, I sat out in the hallway instead of in the waiting room. Fortunately, they called my name immediately, and the nurse took me to the room through a back entrance, bypassing the waiting room. I was so thankful for that. Anyway, I take my precautions and, to date, fortunately, I have not had any infections -- no covid, no cold, no flu.
So, we just need to keep doing what we’re doing to keep ourselves safe and healthy despite the carelessness sometimes of the staff. I do hope that you will write that letter to the CEO and other administrative offices. They definitely need to be made aware, and we need to keep advocating for ourselves. Best wishes to you and your husband. Hugs!
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Thanks for responding as the first person on this. I am pretty close to shutting down my MayoClinic account due to people not responding to my "truth". Your writing delays that action. I don't recall what I wrote now in detail but 1/14 when I felt well enough being with covid19 symptoms still, I mailed two complaint 2 page letters to high management of the hospital. My spouse has the kidney transplant 6 yrs plus now and we both tested positive covid19 first time ever on 1/4. I tested negative 1/12 and he tested positive 1/15. We both have a deep dry cough all day long, but not when we sleep (glad about that). His normal fatigue he has always felt being on the 3 antirejection meds is worse now due to 3 UTI's since 11/22/24 and a 5 day hospitalization for IV antibiotic to kill the stubborn bacteria and now positive covid19. We have lived 'isolated' long before covid19 arrived March 2020 and still do live like that date now. I went into my first in life depression May 2020 due to living isolated like we do and I'm an extrovert in alot of nonprofit work committees and other activities in groups of women. I have yet to resolve and improve the depression regardless of the hundreds of things I have done or tried. Living isolated is robbing the spirit of my soul and long time friends of 25-40 yrs are now in the rearview mirror. I've learned now they were "fairweather friends' and either cannot handle how I live, they disagree with my choice to live as I do because of my spouse' kidney transplant or something else. Each friendship that ends that I nurture "big time" since I have no family, and that did not matter. I've had 6 yrs post transplant to figure out how to feel different and remove the depression out of my life, but it's a constant shadow. THe transplant clinic we used in VT I feel did not give full disclosure on side effects of the anti rejection medications some people have. This alone has been the major problems for my spouse. He is in dark mood swings and depression, fatigue, tremors of the entire body and other negative side effects he never had before taking the meds. He says his emotions about everything are dull/numb. Meds for him over 6 yrs have been changed in type or doseage without changes to the negative side effects. He never was on dialysis and felt better at age 59 with GFR at 13% than he does with a functioning kidney. THat function took 14 long months of rejection, hemoglobin problems and CMV. THe meds have severely made his diabetes management much worse. Most people I've learned using since May 2019 "HealthUnlocked" similar to this but out of England and way more responsive to people in the same boat fast; most people have a positive experience after the first 6 to 18 months of problems most people have with kidney transplant is past them. For my husband, it's been a downward spiral of problems. He has not had one good day. He feels worse daily since transplant 11/18 than he did going through chemo treatments 9 months 2x a month for HOdgekins lymphoma cancer when he was age 30. WE saw his transplant dr in VT Nov 2024, a routine annual visit, and she had not one suggestion after our 10 min explanation of all that was wrong with my spouse' health being on these immunosuppressant meds plus 2 different insulin shots to improve his quality of life. THe QOL is zero. We are out of ideas on how to move forward and live outside the thick glass bubble we feel we live in. Even his local nephrologist he sees every 3 months, he has yet to contact us to see how my husband is doing with his first ever covid19! I called the dr to please contact us, spoke to his nurse, and still zero . I am just blown away. I know this is long, but I seldom get a listening ear. I wish you , truly, all the best in your transplant journey and hope it is opposite of my husband. Biggest hugs!