Kidney/Pancreas
Isolation from Covid 19
February 12, 2023
in Kidney/Pancreas
Hi all - I am 21 years post pancreas-kidney transplant. I am 57 years old. It is now 2023 and I have not reintegrated into society. My transplant team advises I still need to follow protective protocols such as masking and social distancing. The challenge is that not many folks are still being cautious. I've had four full doses of Pfizer vaccine, 1 Moderna bivalent booster, and two complete doses of Evusheld. Am I alone in this isolation or has anyone else been dealing with this? Also has anyone on this forum had Covid 19 and did you have to be hospitalized? I would love to know anyone else's experience in this matter.
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Hi,
It looks like we have some things in common. I also am a Kidney/Pancreas transplant recipient. I'm a few months short of four years. I still take precautions, especially when I am on an airplane (I wear my mask from the time I step in the airport until the time I leave). I also have been vaccinated (Pfizer). I did have Covid twice, but I did not have to be hospitalized. Praise God! The first time I had Covid was in February '22, and the second time was July '22. I did receive the monoclonal infusion each time I was diagnosed, and my transplant team advised me to remove one of my immunotherapy medications for a certain amount of days. Overall, I am back to being active with my work and social life, but I still wear masks and adhere to precautions like using hand sanitizer and physically distancing myself as much as possible.
Transplant Patient
Hi!
I am 14 and 13 years respectively from my kidney and pancreas transplants. I am fully integrated and have been really since the first year… I was def more cautious initially and a little weak. I had some initial hospital visits due to infections but lately my issues have been more related to side effects (dermatology cancers, blood pressure issues and kidney function impairment) vs infections. My center doesn’t really tell me to take huge precautions anymore! I don’t eat oysters or raw veggies like salad and I avoid drinking tap water but I do fly often and I join social events even w children! Life must go on and we must of course be grateful and of course be as cautious as we are comfortable with. I hope you can start venturing out a little more step by step - happy to connect 1x1 as well.
I received my kidney transplant in May 2020 ( right in the middle of COVID ). I had taken the Pfizer vaccine earlier in the year. Since I was on the transplant list I wanted to be as cooperative as possible. However, after the transplant, a doctor, who will remain anonymous, told me the immunosuppressant meds pretty much eliminate the benefit of the vaccine, but not completely. So I remain hypersensitive to keeping myself in a figurative bubble. I did let myself relax my precautions and I was visiting friends in Phoenix last summer, and all three of us tested positive to a variant. I went to Mayo Clinic out of caution. Well, my creatinine had jumped up to 4.0, so I stayed in the hospital for hydration and a took a cycle of monoclonal infusions.
My only symptom of COVID was exhaustion. Once I got hydrated and waited to finish the infusion, I was good to go. My personal Nephrologist reassured me that there was not likely any permanent damage to the kidney.
Transplant Patient
I also got covid as a transplant recipient post vaccine and only felt tired for a day or so. It was a breeze compared to what it could have been without the vaccine….
Transplant Patient
I’m 2.5 years out with a liver transplant (transplanted right in the beginning stages of the pandemic!) I haven’t had Covid. I’m up to date on my Covid boosters, and following the recommendations of my transplant team. At this point I don’t think there’s anything I would not do strictly because of germ risk. My husband and I mask in public, and sanitize our hands often when we are out. Other than the more obvious precautions, we’ve really integrated pretty seamlessly back into normal for us life. I’ve heard a lot of stories of transplant recipients in situations similar to mine who got Covid and faired fairly well so if we were to get it I’m not as worried as I was in the beginning.
Transplant Patient
@MrsPurina - Congratulations! 21+ years, post, post Kid-Panc is outstanding!
Re: life in the COVID era - I'm in a similar boat - I take all the necessary precautions and still wear a mask when I'm around people. I'm fully vaccinated & I shudder to think how it would've been for me, if I wasn't. 😲
I did actually have a run in with the COVID beast last fall. At the time I was fortunate to be able to be treated with monoclonol antibodies (MAB) right away. These days, there are more limited options available to transplant recipients & other immunocompromised folks (like, Evusheld is no longer a good option/treatment).
All of us should have a discussion with our respective transplant teams/doctors to be prepared with a plan of action for treatment options.
When I was down with COVID, the first few days were really scary. In fact, due to the intense coughing etc, I somehow managed to burst some blood vessels in my abdomen wall. That resulted in a massive hematoma within my abd wall. It was intense pain & I needed to be hospitalized for 11 days. The hospitalization was mainly for pain management - nothing was working & morphine and other heavy duty meds needed to be administered via IV with constant monitoring. Anyway, I was sent home after I was able to transition to oral meds. However, even at home I experienced constant intense pain for almost 45 days more. I was on high dosages of Oxy & diloudid etc at home. Even now, although there's no pain and discomfort, I can still feel the hematoma - I was told it will take a long time for it to disappear.
I wouldn't wish COVID on anyone - there's so much still unknown. I will continue to mask up until I feel comfortable without it. I need to; protect my precious Gift of Life, honor my donor hero, think about making living a full life without stressing out loved ones.
Good luck to you!!
Thanks to all for sharing and answering my post. This is the kind of info I've been hoping to find. I do not personally know anyone who had a solid organ transplant, so I feel relieved to connect with people in such a personally similar situation. I lost my job in 2020 when the pandemic came. Since then, I'm still isolated and based on the replies I've read I choose to remain isolated for the foreseeable future. It is often a challenge to my mental and emotional health, but I have so much more to be thankful for than being sad about isolation from people. For example, I don't have to keep explaining to people what a 'break through' infection is! Up until May 2020 I was a project manager for an exhibit builder for over 20 years, traveling to shows, vendors, customers facilities, etc. It was clearly not a good idea to continue as such in my immunosuppressed situation. Now I hang out at home and stay as healthy as I can. I've learned that your body ages somewhat faster after you get a transplant and things such as secondary cancers start to happen. I have a husband who is hyper-supportive (if there is such a thing 😜) I am lucky and I am grateful. I'm not one to take anything or anyone for granted. I wish I lived where it was warm all year so I could spend my days poking around the backyard and gardening!
I'm open and ready to answer anything. It will be 21 years this year with the same organs. Lots of ups and downs - hospital visits - er visits - surgeries - just so much stuff that happens over this period of time. I would love to help someone. Thanks.
Transplant Patient
Thanks so much , @MrsPurina
You're in the right place (& you have plenty of experience to help so many on this forum!! Please keep engaging! 👍
@MrsPurina welcome to TransplantLyfe! I am 39 years old and 4 1/2 years out from a kidney transplant. I believe I got COVID in January 2021, but I had 5 negative tests (3 negative PCR). I had a raspy cough and wheezing when I breathed. Right when it got the worst, and I started to get really worried, I turned the corner. I didn't have to go to the hospital or get hospitalized. I think if I got COVID now it would be far less serious for me.
I've gotten shots, boosters, and evushield. I don't mask up anywhere except for airplanes. I've gone back to church and work from home. My 4 kids (2 elementary, 1 middle school, and 1 high school) are all in public schools again (we homeschooled the 2020-2021 school year).
I think it's really a decision that you have to feel good about making, whatever you decide. I'm also a really social person and it was really hard not being able to be around people (and we moved to another state in 2020 as well).
Now I play pickleball with friends 3 times a week at the gym and go to lunch with friends and attend events. But if I didn't feel safe to do so with my medical condition, I wouldn't.
Make sure to check with your medical team and do what feels good for you and your body.
I'd love to see you more around the forum!