I was hired for a fully remote position and have been working from home for over a year. Prior to that during Covid at a previous job I got medical exemption to be fully remote. I’m federal, and with the new Executive Order it looks like I’ll be forced back into the office. I told my transplant team and the dr said there is actually no medical justification for remote work in kidney transplant patients. But I’m about to get listed and it’s my understanding that if you are sick when they find a match, you’ll have to give that up. I’m terrified that will happen and it will be years until another one becomes available. This is my life and livelihood. When I had Covid one time I tested positive for a month. I know I can mask up and be careful but I’ve been doing that my whole life and still get things constantly. I’ve been living like a hermit. I’m just crushed thinking how scared I’m going to be every single day - what am I gonna pick up now and will that jeopardize my transplant?
Does anyone else take public transport and/or work in a crowded office daily? What tips do you have to stay healthy? I’m actually shocked my team isn’t more sympathetic to my situation.
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SOct91
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I am so sorry you can't keep doing remote work. My best advice to you is to just take precautions and tell your team exactly what you said here. I was lucky and found a living donor but I know that fear of becoming sick. I was working at a retail store and cleaning houses so I was constantly exposed. I also had school age children. I did take echinacea and generic version of air born to help keep me healthy. Good luck and big hugs
In Europe, they do not restrict you from living absolutely normal life. No mask-wearing is advised except in situations where you see somebody really sick near you. From the very first day, they tell you: go to restaurants, go to school, go to the office, watch movies in the theaters, fly, etc.
Though, I understand everybody's situation is different and the immunosuppressant load is also different. Why don't you ask your team about your exact risks in your specific situation? Maybe, they will calm you down a little or they need to explain you why you cannot be listed as one in need of a remote work?
I’m in London . Was told we have given you your life back , now go and live it. Anxiety or negative thinking should be considered as much of a concern as getting unwell because it’s so a life limiting .
Absolutely. Quality of life is our major goal. We trusted once our bodies to our team and they proved they knew how to handle with them. Why wouldn't we trust them if they tell us: no need to lock your bodies at home, it is safe to live a normal life just using your common sense.
First 2 years are the worst,you pick up alot but truth be told I picked up covid from the hospital at transplant and then picked up three other things the next hospital stay so they are the worst disease spreaders and I am very very cautious when I need to go there! I wear a mask always at work in a vet clinic in winter months and same in public in cold and flu seasons,never do buffets or work shared snacks. Would never fly in first 2 years or crowded places with close contact of people.
so you’re waiting for the call for a kidney. I worked full time in an office and used public transport . If you got the call and were sick they would weigh up the risk but you can’t live like that. The best advice is wash your hands regularly that’s how the germs are spread. Are you on dialysis?
Thanks for sharing. In transplantation there are many moments that make you anxious. New ones pop up every day. I would suggest building a support system of friends and family and maybe a therapist. You already have one here but people or persons you can physically see and maybe hugg during trying times. will be beneficial. There will be medication side effects and the fear of kidney rejection. The fear of disease due to immune suppression is only the beginning MS and cancer patients have similar fears and yet they are among us all the time. Their lives and ours do not stop. The one thing about the next 4 years is to remember we have a voice and that voice gets louder with more people by your side. Build your community at work. You would be surprised how many people feel just as anxious about the immediate future health wise. Even in your family there are probably members who may be concerned. When it comes to health in America any government decision can be a difference between life and death. We learned that important lesson during covid. We either live together or die alone.
I know you’re scared but try to remain calm and remain vigilant with masking (K-95 minimum), vaccinations, hand washing and avoidance of obvious sick people. Stress will definitely affect your immune system. I worked as a floor nurse in a hospital while on the List and was also on peritoneal dialysis. You will get through this with both positivity and vigilance.
I’m rooting for you and the CALL will come! 11.5 years and counting since I’ve received my Gift Of Life ❤️
As a government employee, it should not be difficult to get reasonable accommodations when it is required. So, when the time comes, ask your HR about reasonable accommodations which might be moving your work space to a less crowded area of the office?
I work full time in an office with 31 other people. No one wears a mask, including me. I had my transplant in March of 2021 in the middle of Covid. I have only gotten sick once since the transplant. I did not get it from someone at work. I got it from my husband at home.
Hi. I am also on the transplant waiting list for the past 4 years. I understand completely your concerns about not wanting to be sick when that call comes. I still wear a KN95 mask when I go out regardless of where. I also carry sanitizer wipes to clean surfaces I need to touch, tables, shopping cart handles , desks etc. so far 🤞this has kept me from getting sick. I also carry hand sanitizer and use when I can’t wash my hands.
I found it's important to be analytical about matters - doing that reduces fears and anxieties and smooths the path ahead of you. My husband received his transplant during the Covid epidemic, June 2020. We eventually realized that the vast majority of transplant rejections aren't due to viruses picked up at the workplace, they're due do to allograph rejection (one's immune system attacking the transplant) and/or the generally wear and tear of the immunosuppressants on that organ. Of course viruses and bacteria may also contribute but, often, there are vaccines and medications to handle them. While precautions must be taken very seriously early on, one can indeed return to a relatively normal life after one's immunosuppressants are reduced and one is stable. Our transplant center encouraged us to do that - advising us to enjoy life and be mindful as needed. He has since experienced a cold and Covid - both very minor in scope, his transplant is fine. He keeps himself up with vaccinations, getting adequate sleep, and more. He also has a rule, "Get out of the house daily!"
As you noted in your post, it's also easy to worry about the consequences of being sick when one gets "the call". Well, that happened to my husband. He got the call, hurried to the transplant center, and was literally turned away at the operating room door. The transplant was called off due to a low-level uti. We were devastated. Although we were reassured by others that we would hear from the center again, we chose not to hear it. We were so sure we wouldn't get another call, that we emptied our travel bag and put it away. Much to our shock, immediately after my husband got off the antibiotics for the uti, he received another call. The transplant was a success. Sometimes we pay too much attention to the negative messages our mind gives us, when it's better to focus more on reality. Many are turned initially, but calls will continue to happen for most. My advice is don't worry too much. I suspect that good outcomes are in your future.
EDIT to add: I hear you all loud and clear on living a normal life post transplant and enjoying the gift. I should have added I’ve been through this before - and have absolutely lived an amazing life thus far for over 30 yrs, schooling, getting married, travel... It’s only now that my kidney is failing that in trying to save it initially, they pumped me with infusions and extra immunosuppressants so I have no ability to build antibodies now and am extra suppressed. It’s the part where if I’m sick and have to give up an opportunity for a kidney and wait more years that I’m scared of. Im NOT on dialysis yet and am trying never to be and I want to return to the amazing life I do have!
Thanks for the suggestions, I’ll just keep masking/handwashing/sanitizing like I always have.
I'm a retired Federal employee who had a similar work situation and successfully obtained a "Reasonable Accommodation" from our human resources office. I understand your concerns. Reasonable accommodation is not linked to telework policies, but is handled by HR, who informs your supervisor of the required accommodation. Working 40-plus hours per week in close office quarters, sharing a bathroom, breakroom, hallways, etc. are higher risks than other, occasional contacts. Remote work will lower your stress significantly, which will help keep you healthier. I'd be happy to share with you drafts of two personal letters I used for the request process. What's a good way for the two of us to communicate privately? I don't know if there's a way on HealthUnlocked ...
Good Morning I definitely understand your concerns I have been transplanted for 4 years in January. I have returned back to work FT in a residential home for disabled individuals. However, I am working in my own office, I do have to come out to use the restroom, lunch breaks etc. however, when I am out of my office I wear a mask. I practice safety precaution. However I do understand your concerns because I still have them everyday as well. Sometimes we just have to get back to some type of normalcy in our life, because sometimes it can become depressing. Good Luck!!
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