At home covid test positive: What should I do next?

Posted by hello1234 @hello1234, Oct 19, 2022

Hi all,
Coughing, runny nose, headache. I just took and at home covid test and it's positive. Does anyone know the process from here? Is there a way to coordinate monoclonal antibodies infusion locally here in Florida? Does the transplant team coordinate the infusion or is that something I need to do? Has anyone gone through this process?
Thanks everyone!

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@hello1234

Hi @jennifer0726 😊
Thanks for letting me know your routine! That was my routine too until I got covid. I was just enjoying life a little tiny more than complete isolation in my social bubble with my parents. I started eating out at very off times when the restaurant was empty, in a quiet corner, etc. Unfortunately, I did go to some doc appointments with Mom and no one was wearing a mask in the waiting room. I always sanitize after pumping gasoline. I wear my mask in the grocery store. I feel like I will never be able to smile at a stranger passing by because my face will be covered. After this experience, I want to glue the mask on to my face! After 90 days, I am definitely going to get my Evusheld booster. I think Evusheld may have saved you! The only reason I didn't get my Evusheld booster on time, was my concern about my BK virus diagnosis. When I asked about getting the Evusheld booster, I received mixed messages. Of course, no one knows for sure how all of this works together in the body.
Thank you so much for letting me know I am not alone in this. It sounds like we are both handling the situation similarly except you received your Evusheld on time and I got covid. Definitely get your Evusheld boosters ❤

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Hi @hello1234
I wonder if getting the monoclonal antibody infusion will act like Evusheld until you are able to get your second round. I would be very interested to know if you develop any natural antibodies due to your current infection. I think you were like me and did not get antibodies after Covid vaccinations. If you get tested definitely let us know! ❤️

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@gingerw

@hello1234 Not a transplant patient, but severely compromised with blood cancer, end sage kidney disease, and autoimmune conditions.

I mask outside of my house. At store, gas station, any medical appointment, eating out. And use antibacterial hand sanitizer all the time. Sometimes I wear disposable gloves for pumping gas. Can't be too cautious, is my opinion. Eating out at offtimes, same with store visits. Learned a long time ago that I get my smile "go to my eyes" to convey my emotions.
Ginger

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Excellent advice @gingerw 😊
When you eat out at off times, do you wear your mask until the food comes? Do you eat outside or inside?
Also, how do you "vet" your dinner companions? Is it okay to ask friends of friends if they are vaccinated, and what do you think of asking if they would take a covid rapid test before meeting them for dinner...is that over the top? Or is it best to just say no when I am invited to a meal out when I don't know everyone really well. (Or should I sit near the people that I know are safe?) I usually just say no, but I would also like a little social life. But after this "covid week of misery", I am thinking of going back to "no thank you". I keep weighing my mental health and my physical health priorities when it comes to eating out. Before transplant and before covid, eating out was a favorite pastime!

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Hi @jennifer0726 😊
Yes, I agree with you! I am hopeful that my monoclonal antibodies infusion will kind of act like "Evusheld protection" until January when I will get my real Evusheld booster.
I don't know if I will be able to test for natural covid antibodies because I am chock full of monoclonal antibodies infusion. The test will look awesome if I test now. And I know the same thing is true after the Evusheld shot. The covid antibodies test comes out wonderfully after Evusheld because they just gave two shots of antibodies. I have to say that I don't think we will have immunity against catching covid. I think it's an ever-changing virus like the common cold with mutations and variants so you can keep catching it. (My girlfriend with Evusheld in Philadelphia caught covid three times so far!). I am hoping that the Evusheld works like the vaccine in healthy people, to keep our chance of a severe outcome to a minimum. I will tell you that I am extremely grateful for the monoclonal antibodies infusion. When this started I had a very scary deep cough that truly concerned me about possible pneumonia. After I went to the hospital, 24 hours later it was a light dry cough and I knew I was going to survive this without a hospital stay. Major difference in the outcome! ❤

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@chickytina 😊
I didn't realize that you are a new transplant (May 2022). Congrats!!! I forget, did you receive a liver or a kidney? And how have things been going so far for you?
You may want to discuss Evusheld at your next transplant doc appointment. I am pretty sure that it doesn't matter what level immune suppression you are taking. Actually, the newer the transplant and the higher the immune suppression level, the more I think they will encourage you to get some covid protection. (The vaccine probably won't work with high levels of immune suppression). When you can, double check with your doctor or portal your nurse to get their thoughts on Evusheld for you. With a working husband and son out in the world, it may be helpful to you to have a little protection. ❤

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@hello1234

@chickytina 😊
I didn't realize that you are a new transplant (May 2022). Congrats!!! I forget, did you receive a liver or a kidney? And how have things been going so far for you?
You may want to discuss Evusheld at your next transplant doc appointment. I am pretty sure that it doesn't matter what level immune suppression you are taking. Actually, the newer the transplant and the higher the immune suppression level, the more I think they will encourage you to get some covid protection. (The vaccine probably won't work with high levels of immune suppression). When you can, double check with your doctor or portal your nurse to get their thoughts on Evusheld for you. With a working husband and son out in the world, it may be helpful to you to have a little protection. ❤

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Actually I am a bilateral lung transplant. It has been going very well. I had possible begins of rejection back in July (picked up on my bronchoscopy), which was handled with mega doses of antirejection medication.
I had an issue with my pulse being too erratic after the transplant. It would go from 90 to 140 to 70 to 200 within seconds and I would be just lying down. Prior to the surgery, I had a fast heart rate due to having issues with trying to keep my oxygen level above 80. They put me on medication for AFib and this has evened out my heart rate.
The main other complication that I have had is that my pressure has/ been too low. I always had a bit low blood pressure (would go down to (74/46), but with the meds it was going lower causing me to be dizzy up to 10 times a day and passed out once. Since I have been on medication to raise my blood pressure, I am having less dizzy spells.
However, I am waiting for the patch to come in the mail to record my heart rate for 2 weeks. I will then mail that in and after a couple of weeks they will give me the results. I don't feel different most of the time when my heart rate is fluctuating or when my blood pressure falls, so they are trying to see what exactly is causing the dizziness.
I had asked the doctor the last time about the new vaccine, but he said because I had 4 prior to transplant that I don't need it now. I am very careful with everything since COVID is what was the last straw for my lungs. I will discuss with the team when I go for my monthly appointment tomorrow. Thanks for the idea.

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Hi @chickytina 😊
It sounds like you are dealing with your new transplant challenges similar to the way I try to approach it. As each new challenge arrives, the transplant team goes to work and makes another tweak to the cocktail. Unfortunately, it's not an exact science so each of us needs to get all of our different meds customized correctly over time. That's what it sounds like you are going through now. (It's stressful, but it's an ongoing process).
I am amazed to hear that there is a "patch" that will record your heart rate for 2 weeks. That sounds incredible. Please keep us posted on what they find!
Regarding Evusheld for you. It didn't register with me that you had your 4 vaccines PRIOR to transplant and immune suppression. Therefore your docs probably feel confident that you had a nice immune response. It's worth asking about, but now I understand their lack of urgency about it. ❤

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@hello1234

Excellent advice @gingerw 😊
When you eat out at off times, do you wear your mask until the food comes? Do you eat outside or inside?
Also, how do you "vet" your dinner companions? Is it okay to ask friends of friends if they are vaccinated, and what do you think of asking if they would take a covid rapid test before meeting them for dinner...is that over the top? Or is it best to just say no when I am invited to a meal out when I don't know everyone really well. (Or should I sit near the people that I know are safe?) I usually just say no, but I would also like a little social life. But after this "covid week of misery", I am thinking of going back to "no thank you". I keep weighing my mental health and my physical health priorities when it comes to eating out. Before transplant and before covid, eating out was a favorite pastime!

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@hello1234 Yes, I wear my mask dining out until the food comes. Outside if it is nice weather, and there is a low-traffic area. I do vet who comes to my house, who I eat with. I won't let my husband's former daughter-in-law and her four kids visit, they haven't been vaccinated. Nor will I let just anyone in the house. Deliveries are done on the porch. I only eat with those who have been vaccinated, and will eat in a quiet location in a restaurant.

I go to meetings in our little town, always masked. People know I am immunocompromised, and don't question the mask at all. It is a safeguard for me.
Ginger

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@gingerw
Thank you Ginger😊 for sharing your detailed plan for staying safe against covid. After a week of being sick with covid, I think your plan is very prudent and correct. If you don't mind, I am going to adopt some of your ideas. I need to be clear with people that I am immune suppressed.

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@hello1234

@gingerw
Thank you Ginger😊 for sharing your detailed plan for staying safe against covid. After a week of being sick with covid, I think your plan is very prudent and correct. If you don't mind, I am going to adopt some of your ideas. I need to be clear with people that I am immune suppressed.

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@hello1234 I live in an area where so many refused to be vaccinated. It's a personal choice, I get that. And so is my taking charge of my health.

I have had four doses of Covid vaccine [Pfizer], 2 doses of Evusheld [the first was in February, before the full dose was determined], plus a dose of the bivalent Covid shot. Oh, and my flu shot. I was told that if I was to get Covid, it could literally be the death of me. My husband continues to take trips, wandering on his motorcycle or in his Jeep, and socializing. He is not surprised when I ask him to take a home Covid test. He feels I am going overboard, but he understands.
Ginger

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@hello1234 -I hope you are continuing to improve and feeling better.
I expect we all struggle with the questions you are asking. And it is all a very personal situation-risk vs reward.
I believe that I was blessed to receive my transplant and I take precautions in many ways-using hand sanitizer whenever I get back in my car after going to drug store, pumping gas, grocery store, etc. However I do not mask unless I’m in closer quarters (Dr office for example) indoors. I do eat out in more spacious restaurants. I even went to a comedy show last week (theater seating).
I also believe that I should live a life where I can enjoy the things that bring me joy-mentally, physically and emotionally. This includes seeing (healthy) friends and family and attending special event. Is this risky? Maybe. But I can also tell you that back in January I ran into a cardboard Amazon box in my house and because of my thin skin (prednisone) I had to be driven to the ER and get 22 stitches in my calf. I also had to be put on extra antibiotics due to risk of infection. This accident occurred at home.

I have never let my prior cardiac and pulmonary health issues limit me. They influenced my choices, but didn’t define me. I am trying to continue this approach post-transplant.
It won’t be perfect, but I am a very active person and need to remain that way for my mental and emotional health as well.

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