How sick will I get while immuno-suppressed?

[Djangosmom]

Happy New Year, everyone. I have a question for those of you that have had a successful transplant and are now immuno-suppressed due to anti-rejection meds. What happens if you catch a cold? Forget Covid for the moment, I know those consequences….. I’m wondering about your basic cold, flu, sore throat or stomach flu. Do I need to go to the ER if I contract any kind of illness? Did you find yourself more susceptible to colds, etc, while suppressed? How severe did your cold get if you contracted one? I had a bullet-proof immune system before transplant; I worked with the public but never got sick, even when my colleagues caught it. Now, post-transplant, I am really worried about getting sick. I need some advice….please?

[YorkyinNorfolk]

Hi,I’ve had a successful kidney transplant for over 19 years and like you worked with the public before and after my transplant in an office environment.

My sickness record at work was good before my transplant & got even better afterwards. I still get colds, sore throats etc but they are no different to beforehand and come & go as they do for anyone else. If I get a full on chest infection (very rarely) I do approach my doctor for antibiotics as I know that I can’t shake it on my own.

Other than that I’ve been very lucky, I take care of myself, keep active & fit, eat well, always take my drugs as prescribed.

If you’re sensible & you were bulletproof before there’s no reason why you can’t continue to be so as long as you’re careful, follow normal hygiene processes to protect yourself. The trick is to self monitor yourself, manage your health, & report anything out of the ordinary as soon as possible to your renal team.

I’ve been very lucky but I suspect it’s not the same for everyone.

Good luck, I hope your health continues to be good.

[Janet_wyatt]

Hello, I am 12 years post transplant. I work in a doctors office directly with all patients sick and well. I had no problem going back to work 12 weeks out. I didn't get any sicker than pre transplant. Covid times of course is constant mask wearing. I have done fine all the way around in regards to getting sick due to immune suppression. I am 47. Transplant done at 35. Hope that helps!

[WYOAnne NKF Ambassador]

I am 22 years post transplant and am now am 71 years old. I am healthy, hardly ever get a cold or sore throat. I do get my flu shot every year and I am sure that help ts. Just take care of yourself, keeping active, staying hydrated, take meds as prescribed and make sure you keep all lab and doctor appts.Make sure if you do experience something out of the ordinary that you report it to your nephrologist/transplant team. Most importantly - be your own advocate. You know yourself better than anyone.

[Djangosmom]

Thanks to all of you. I’m feeling a little better about things after hearing from all of you. I was bulletproof before, but they’ve put the fear of God in me since the transplant….mostly due to Covid. I just began to wonder how transplant recipients moved through life while immuno-suppressed…..do they get every cold that comes along or….? It sounds to me like y’all haven’t noticed a huge change in your immune system?

[Djangosmom]

One more thing….is there any data on immuno-suppressed people who have contracted Covid? How do they do? I’ve also heard that even though I show zero antibodies from the Covid shots, there still may be some protection via T-cells?

[JackN in reply to Djangosmom]

I'm in the same situation regarding antibody test results, and I've been told the same about t-cells. That said, immunocompromised people don't do well when exposed to Covid though at least now we have monoclonal antibodies (beware - only one of them works for Omicron). The good news that there is a Pfizer antibody treatment that is very effective if you get Covid - it's just hard to find. Even better there is a prophylactic treatment that is very effective in preventing us from getting Covid in the first place, but also hard to find right now, called evusheld. My transplant department told me that as soon as they have it we'lll be the first to know.

[Djangosmom in reply to JackN]

Thanks JackN. I have been bugging my transplant team every week since I heard about Evusheld….they keep telling me the same thing you are hearing.

[Traned]

When I was working I caught a cold or flu every year and needed antibiotics to get rid of it. Since I retired I haven’t been sick a single day. 19 years since transplant.

[redpanda67]

I am 17 years post transplant. I worked in a pharmacy for several years, small labs crammed with people, and took public transit to work all the time. I think I have been sick 2-3 times in the last 17 years, none of which required going to the ER. With one exception - the flu. I had never had the flu, always had my flu shot, and had no idea what I had. I skipped my flu shot one year, was completely stressed out from grad school, and was not doing a great job taking care of myself. I thought I might have meningitis because my neck was so stiff, I couldn't move, and I was running a fever. They did a rapid flu test and sent me home with Tamiflu. I was better a few days later.

Immune systems are one component of staying healthy. Washing hands, avoiding sick people, and avoiding germ factories - AKA children, are also important tools to stay healthy. Interestingly I find transplant patients usually get sick less than the general population because we are so motivated to stay healthy we automatically employ "sanitize and avoidance" strategies.

As for COVID - you are correct not all patients make antibodies. It really depends on your dose of immunosuppressants, which drugs you are taking, Cellcept seems to really suppress antibody response, and how many vaccines you have had. Unfortunately, it's difficult and costly to test T-cell responses in patients. T-cells are an essential tool that helps identify the virus and tells B-cells which virus to target with antibodies. They also have some pretty powerful killing capabilities once they have been primed with the vaccine. Immunocompromised patients don't fare as well when they get COVID, but if they have been vaccinated it gives them a fighting chance.

[Djangosmom]

Thanks so much for your responses. They are really helping with my anxiety. By the way, my adult son, who lives down the block, tested positive for Covid this morning. He was vaccinated, but had not gotten boosted. He always wears a mask when indoors with me, but had not been here much since Christmas. 😱

[Sassyansweet]

I have had ( systemic )Lupus since I was 8. I have had my kidney now for 14 months. I gets colds sore throats about the same as I did pre transplant. My immunity system has always been low due to the lupus I get colds easier but I haven’t noticed a difference since I received my kidney.

[Djangosmom in reply to Sassyansweet]

Thanks for your answer. I wish you good health!

[horsie63]

I'm in the very early stages of the transplant process and my husband who went to an out of state wedding on Jul 1 brought me home Covid. I tested positive on Jul 8 and that afternoon my primary doc had me do a round of monoclonal antibodies. I think that is what lessened the severe symptoms I'd been having. I'm vaxxed and have had one booster (will get the 2nd on the 24th) but my fear now is I share an office with an unvaxxed person who has 4 small children at home. I intend to wear a N95 mask while in the office. There's no policy that makes him wear one but I can.

[LisaSnow in reply to horsie63]

To share an office with an unvaccinated person is really a high risk for you. Can you talk to your employer about switching you to a different office or working from home?

[horsie63 in reply to LisaSnow]

Funny it was my vaxxed and booster husband who gave me Covid but no on the office as there aren't any and I do work from home when the threat level is high or I feel unsafe and he's okay with that. If/when I get a transplant it'll be another story.

[Gizmo620]

I had a transplant over 20 years ago and a second one 6 years ago. In terms of getting sick-- you will catch the common cold and other viruses--you just get a little sicker than everyone else due to being immunocompromised. You do not need to go to the ER each time --they only recommend to go to ER or doctor if you have a fever because fever usually suggests a bacterial infection versus the common cold that would require antibiotics. Do not get too worried about catching common viruses or sickness from people as long as you are aware of sick people around you and knowing to stay away