I am two and a half years post kidney transplant. I have called my transplant center when I have had a fever and been told by the front desk staff that if it doesn't have to do with my kidney they recommend I contact my primary care physician.
Prior to my transplant I was warned by my transplant clinic about avoiding sickness, but when I am sick it doesn't seem like they (at least the staff that answers the phone) are that worried about it.
When I have seen my primary care physician, I have not been treated with any more concern than a normal patient. If she suspects a virus there is nothing she can give and just suggests plain mucinex (without the decongestant) and it takes me several weeks to get over it.
I have three small kids so unfortunately I pick up stuff easily. I have wasted a lot of time and money going to my primary care physician thinking I need to be checked out, only to be told it just needs to run its course, no antibiotics needed. Is being immunosuppressed and sick not as big of a deal as I was led to believe?
I am just curious how you all are told to handle illness. How does your transplant center handle it if you develop a fever or illness. Is there something more I should or could be doing when sick?
Thank you for your advice.
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My transplant center/team took very good care of me for the first year post transplant. Now they require me to contact my Nephrologist for any concerns other than anti rejection medication concerns. Do you have a nephrologist that you see regularly?
Thanks for the reply! Yes I do see my transplant nephrologist every three months since I live near my transplant center. I feel like they take great care of me when it comes to my transplant itself. Prior to my transplant I was warned by them about avoiding sickness, but when I am sick it doesn't seem like they (at least the staff that answers the phone) are that worried about it.
Catching bugs easily is the norm for patients taking immunosuppressive medications. Unfortunately there is still not that much any medical doctor, specialist or not, can do about making the infection better. Unless the viral illness turned into a bacterial infection (you certainly don't want that) there are No medication to treat the cause but the symptoms. Lots of rest, nutrition, vitamin C under maximum allowable amount, will help one feel better and run through the course faster. Prevention is still the key.
If you have a persistent high fever and production that's different from normal, go to urgent care.
I'm five years out now, but I had a pretty rough road the first three years, averaging 2 hospitalizations each year. My team told me to call them if I had a temp of 100.4°F (38°C). I thought they meant just the first 90 days, but when I called the second day of a 101.7° temp at 7 mos post-op, I was told to get to the ER ASAP. It turns out I had a UTI that had spread to my new kidney. I was admitted for three days. Perhaps that experience, along with 18 more UTIs over the next 30 months put me in a different category. ANY time I get a fever over 100.4, I call the Infectious Disease nurse. It's usually been another UTI, but twice it was covid, so she ordered the infusions to combat it. Fortunately I've only had one cold which was pretty miserable and it took nearly a month for me to get over it. But I'm fortunate in that I'm retired, so I have the time to recover. My PCP always defers to my regular nephrologist who defers to my transplant team. They're all part of the same health care group which makes communication easier.
I would recommend asking your post-transplant coordinator to run interference for you. You need to have a definite protocol to follow when you are sick. Ex: call PCP for aches & pains; Call transplant team when temp is above 100.4°, or whatever you decide. I was given a 1/2" thick book of what to do when prior to my transplant, but somehow misunderstood that there was no end date for reporting a fever! I wish you all the best!
I go to my doctor with normal coughs and colds. If they think it’s viral they will always give me an antibiotic just in case it gets worse. Even with our low immune system we can still fight off viral infections. I’ve had sepsis twice , but each time I knew it felt serious so I went to the emergency room. Stayed 9 nights each time, caused by UTI’s. I’ve gotten to know my body very well and have if I’m unsure I go to the ER .
If I am feeling ill and think it’s an infection, first thing I do is call up my post transplant nephrologist and ask for a blood test order. I go do the blood test and if there is an infection they prescribe me antibiotics and/or check for further viruses eg cmv or bk virus. They do have a 24hr number to call if I think I’m in kidney failure etc - it’s an on call doctor at a hospital. They typically tell me to go to the ER but they track where I am. I used them once too for an emergency prescription as I’d traveled and left my meds on the counter. Not my finest moment.
You’ll get used to distinguishing between how you feel with time and getting a sense of how to respond.
If I’m feeling like I have something akin to a flu, I go to my PCP and then they treat as if I were a non transplant normal person. They are a little more liberal with antibiotics or steroids than a non transplanted person but otherwise pretty normal and on same cadence/urgency. When I was really sick and couldn’t get in in a timely fashion or was about to travel, I used to use urgent care. I now have a concierge doctor but for other reasons and that’s made it all easier admittedly, but I pay for that efficiency.
you might want to ask your post transplant nephrologist (note, this is not my transplant center)…and ask for advice and share your challenges.
The Transplant Centers and doctors do a good job of conveying us that if we get sick, it will be bad, but fail to tell us that if we make it to 18 months post surgery, we’re good.
Now I know that’s a broad statement and everyone has their own journey through transplant, but once you are stable and on maintenance level drugs, you’re good as far as they are concerned. They need to transition you out to make room for the next patient.
I know I found it hard to let go of the Transplant Center. Also, a lot of us on this forum got our transplants during Covid. I believe that has added to our anxiety levels.
So, just keep in mind what others have said about the high or persistent fever and try and go with the flow.
You’re not alone. My transplant center doesn’t seem to deal or care with any illness that isn’t long term treatment post transplant either. Always deferring to PCP or urgent care, or ER if it’s bad enough. I will say be your own advocate on what you know you can and can’t have with your kidney but at least run by transplant. For example I didn’t think I could have diflucan since I’m on Tac but was told one dose was okay. When I got the flu I was allowed Tamiflu but at a modified dose. Lots of us can’t get Paxlovid too with Tac. I see other comments saying always ask for antibiotics, I would caution against overuse. Most colds etc are viruses and unfortunately it is true will just run their course. Agree with knowing your body and level of severity to either go to PCP, urgent care or ER. Unfortunately this is life immunocompromised, having to be a bit more germaphobic than average and having things stick around. Covid finally got me after 4 years and while it was mild for me, I’ve been testing positive for over a month!
My husband's kidney care was transferred to his local nephrologist at 3 years post transplant with the center serving as a backup. When my husband has a questionable situation, he contacts his local neph and he tells him what to do. This often means a referral to see his primary, his urologist, etc. It's not unusual for my husband to simply go directly to a "non kidney" doctor for specific situations. In those cases, we make sure approvals/coordination occurs with his neph regarding medications etc. For illnesses involving the sniffles or fever, Mucinex and Tylenol and similar products are generally the common suggestions. (Our center gave my husband a notebook with "preapproved" list of medications he can use as needed. Some transplant centers place their approved meds on their website.) Kidney transplant failure generally occurs because of chronic long term rejection, underlying issues, and so forth - not so much the common illnesses. Yet, it's best to minimize those too. As life moves along, my husband has accrued a lot of other specialists. (He's also had major emergencies - one requiring brain surgery at a non-transplant hospital where the hospital put its own nephs on his care and things went extremely well.) I don't think there's a strict protocol who to see first. We simply ensure that coordination occurs, especially re meds. And we are quick to speak up. As one doctor said, "Please tell me what's going on, it's impossible to read 6 volumes of your medical history."
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