Still wearing a mask.

[Hawk12]

I am three years out from a deceased donor transplant and still wear a mask when out in public. At my last lab draw I saw someone who had his transplant around the same time as me and was surprised to see that he was not wearing a mask. My question is whether I’m the outlier or is he?

[Bassetmommer]

Depends on you and him. Do what is best for you and do not worry about what others are doing.

[Hawk12 in reply to Bassetmommer]

Good advice Bassetmommer!

[Darlenia]

My husband is 3+ years post transplant. He doesn't routinely wear a mask, but will if he sees the need to do so - in very crowded areas such as airports, concerts, etc. If he hears of someone with a viral illness, he simply stays away. My husband and I are very proactive about keeping our immunizations up to date and more. We also keep hand sanitizers (which we use a lot) as well as masks in our cars and in my handbag. Sunscreen is kept in our car too. They're always in easy reach. Our neph is fine with how he's handling matters. We socialize with a liver transplant patient (post 15 yrs) and he does the same thing we do. We're comfortable with our approach; others may not be. A few may still confine themselves to their homes. My husband needs to "get out of the house once a day" (his words) to keep him happy and motivated. As far as I know, there are no hard and fast rules about any of this.

[Hawk12 in reply to Darlenia]

Thank you Darlenia!

[ShyeLoverDoctor]

I am one year and 4 months post transplant. I’ve had neutropenic fever twice and been hospitalized for it, when your white count is almost non-existent which is very very dangerous. They inject you with medicine to make your body produce white cells.

I still wear as mask whenever I go out. I buy pretty ones with bright colors or patterns.

My neurologist does and makes his office staff as well as patients wear them, most of the people at the phlebotomy lab do, My nephrologist does but cannot require his staff to, only some do, he doesn’t make the policy, my dermatologist will put one on when I see her without asked. I tell EVERY medical professional who is treating me, “Please put on a mask I am a transplant patient.” I don’t care if they’re a lowly phlebotomist or a tech or a nurse or a neurosurgeon, I have asked all in my time.

I had one nurse get very mad at me when I would not pull down my “fancy mask” as she called it to take my temperature until she put on a mask. One doctor was very clearly put out, took close to ten minutes of searching the office to find a mask, and I never went back to her.

My vet left the room, went and put on a mask and said “Sorry” after I said I was a transplant patient so I’m not scooping my cats’ litter and couldn’t tell him if their stool was normal or not. Didn’t even have to ask him. I do sometimes get sick of asking, once in a while, but I will not led an MD get by without wearing one, they should truly know better.

Yesterday I had my birthday lunch at an outdoor restaurant. I went to hug my sister in law who I haven’t seen this entire year who held up her hand and said “I’m getting sick I have a scratchy throat and I haven’t had a covid booster.” (REALLY.) Accompanying me was my friend who is on dialysis, also wearing a mask. We walked past her and I took a seat at the far end of the table and THEN she pulls out a cloth mask and puts it on. Shame on her for not at least wearing one until after I’d said hello. Come on! Good thing I had mine on!

I met another transplant patient in a hospital lobby and asked why he wasn’t wearing a mask. He said “There’s so many treatments for Covid now, my doctor says not to worry, I’m more worried about a cold. If I see someone sneezing, I just move away.”

I don’t care what anyone thinks.

I had an Emergency Room nurse tell me “Covid’s over.” I’ve had an Uber driver and a hairstylist tell me the same thing. My response was, “Not for me it isn’t.”

If other people don’t care, fine. Transplant patients were wearing masks even before covid. My family doesn’t care, fine. I intend to protect myself.

My family really really wants me to fly back east to join them for Thanksgiving but I refuse. My brother said “you can wear an N95 on the plane” and I responded “Is everyone else going to do that?” (We’d be together from Wednesday to Saturday) He said great point. His wife told me they will require everyone to have had a flu shot and a Covid booster before coming. She’s never had Covid either, he has.

An outlier? An outlier who chooses to try to avoid illness? I’m proud of my behavior and I make no apologies for it. It means I am taking care of myself.

Oh, and I make it a point to THANK medical staff for wearing a mask because I am a transplant patient when I see them, usually at the reception desks when one is and several others are not. Let the others overhear it. I was once in a hospital lobby bathroom and I saw a nurse washing her hands, wearing a mask, and I thanked her for it. She replied “Of course” and I said “Some of the nurses aren’t.”

[Rupmh in reply to ShyeLoverDoctor]

We operate the same way. It’s not over for us immunocompromised folks. We mask up when we go out all the time as a precaution.

[Hawk12 in reply to Rupmh]

Thank you Rupmh!

[ShyeLoverDoctor in reply to Rupmh]

That is wise.

[Hawk12 in reply to ShyeLoverDoctor]

Thank you ShyeLoverDoctor!

[ShyeLoverDoctor in reply to Hawk12]

Any time.

[Eyak1971]

I put it in the same category as smoking. I choose not to and wish that it was not part of social practice but it is generally lawful. But heaven help you if you tell anyone not to. As a society being healthy takes a second seat to doing anything we feel we want to, no matter how it affects others. So it comes down to an individual choice and your own gut feeling. If you do become seriously ill because of someone's lack of courtesy to respect your health issue do not look for others to condemn the culprit. Your life and others are not that important in today's selfish world. We reap what we sow. Keep in mind this all was preventable. We are our own worst enemies. You either value life or you do not.

[Hawk12 in reply to Eyak1971]

I agree with you Eyak1971. Sad but true!

[ShyeLoverDoctor in reply to Eyak1971]

Yes. People in Japan would wear a mask when they had a cold to prevent them from infecting others, years before Covid-19 even happened, if you did not know that.

[Eyak1971 in reply to ShyeLoverDoctor]

Thanks for sharing. Respecting others health or otherwise has long gone from American society as a whole.

[Hawk12 in reply to ShyeLoverDoctor]

Yes, different culture!

[GG801]

I’m 42 years post transplant. I still wear a mask in crowds. You do want feels right to you. It’s your health.

[Hawk12 in reply to GG801]

Thank you!

[Winner76]

Hi

I’m 4 and half years post and never wear a mask, maybe I should. I go on planes and concerts without a mask but everyone is different. Your immune system is at its lowest in the first year , I got sepsis twice. So do what makes you comfortable and if wearing a mask helps you live your life then do it .

Good luck

[ShyeLoverDoctor in reply to Winner76]

We can lose our transplant with ANY serious illness, not just Covid-19. It doesn’t matter how many years out you are.

I personally know of a 12 year old girl who lost her transplant from an infection traced back to her new puppy. Her parents waited a year, then got a pet for her because she really wanted one. “Should” they have done it?

I hate wearing a mask, but I do it anyway. Would I like to stop wearing it? Sure I would. Do I enjoy bugging people to wear a mask around me? No. I bug them anyway. Would I like to go places where there are a lot of people so my risks are increased? Sure I would. And, masks are not 100% even if both people wear them!

But I’ll be damned if I’m going to increase my chances of going back to living hooked up to a machine for four hours a week, feeling horribly drained, not being able to have more than 32 ounces of fluid per day, not being able to eat what I want, waiting years for someone to die so I can get another kidney and a third chance at a semi-normal life, because I did not wear a mask.

Having a transplant almost killed me. I had a serious reaction to the opioids post surgery. Do I want to take that risk again? No, I do not. I live in fear of needing another operation and taking them again.

“Should” you wear a mask? That’s your decision to make. You’re an adult and you know the consequences of getting sick, including losing your new kidney as I remind you.

If I can reduce my chances of ending on up dialysis again by wearing a mask when I leave the house, then I will. it’s your choice whether you do or not.

[Hawk12 in reply to ShyeLoverDoctor]

Well put ShyeLoverDoctor!

[Hawk12 in reply to Winner76]

Thank you!

[Warthog81]

I am 42 and in the UK and 4.5 years post transplant. I keep an eye out as to what the levels of COVID locally are and often base my decision on that. I have not flown since before COVID. I try and avoid all crowded places. I have only used a local small shop and post office, tend to wear an FFP3 when I go in the shop. I also mix with as few people as possible though I am fairly reclusive in nature anyhow so that is easy for me to do! I also do not eat out as I worry about the staff maybe having COVID, flu or a cold and breathing on the food or touching it.

[Hawk12 in reply to Warthog81]

Thank you Warthog81!

[Suziekjos]

I am almost 9 years post transplant. I ALWAYS wear a mask when I leave the house since COVID arrived. Do whatever feels most comfortable to you. Good luck!

[Hawk12 in reply to Suziekjos]

Thank you!

[modernmusic]

I don't know who's the outlier, but he's the foolish one. I'm 18 months out from deceased donor kidney transplant and 78 years old

[Hawk12 in reply to modernmusic]

I was fortunate in that I got my COVID vaccination prior to my transplant, and to my knowledge have not gotten COVID.

I have been sick only twice since my transplant, once after my youngest brother and his wife visited right before Easter and I didn’t wear my mask and I think that my sister-in-law had a URI, and then around Labor Day, when my wife caught a URI from our grandson and passed it to me.

I didn’t get very sick with either, but both times developed severe nausea that took weeks to go away, even when the URI symptoms were gone.

[Redbone55]

Good Morning everyone. I am 3 years post transplant and I often struggle sometimes with this decision of when to wear a mask. In some situation I wear a mask (like around crowds, Hospitals, groceries stores i.e.) then there are other times when I just don' feel like wearing one sometime the mask bothers me due to allergies sometimes. A lot of times I want to breath in some fresh air. I do try to make sure that I am away from people when I do not have a mask on. Yes we want to protect ourselves and our New Kidney, but I feel that everyone level of comfortability is different. Let me just say that at one point you could not get me to go outside of my house without having a mask on (this was the height of COVID) guess what I still manage to contact COVID 3 x. So at the end of the day I say Just LIVE YOUR LIFE the way you see fit!!! Be BLESSED!! ☺️

[Hawk12 in reply to Redbone55]

Thank you Redbone55!

[JackN]

I'm 14 years out and rarely wear a mask. I've had Covid twice and both times it felt like a common cold. When I've had it my nephrologist has taken me off one of my two immunosuppressant meds for a week to strengthen my immune system just a bit to no ill effect.

But, I am 14 years out. I suspect people much closer to their transplant date may have a different risk profile than I do. FWIW I'm 64.

The general message here is correct; do what's best for you.

[Hawk12 in reply to JackN]

Thank you JackN!

[Capecorp]

My husband is almost 3yrs post transplant and regularly wears a mask. Plane journeys, crowded places, doctor’s offices and anywhere he hears coughing or sniffles. We do a lot of handwashing and sanitizing too. Even with these precautions, he has had Covid and caught a few colds but has been fine, thank goodness.

[Hawk12 in reply to Capecorp]

Thank you Capecorp! 😊

[Advocate4life]

Hi, Hawk! I completely agree with Bassetmommer and we pretty much follow the protocol that Darlenia shared. You do what makes you most comfortable and never mind what others are doing (or saying). Yes, there are actually people out there who will share their opinions if they see you with a mask on. I'm all about educating them ; )

[Hawk12 in reply to Advocate4life]

Thank you Advocate4life! 😊

[Cabrilla]

I’m 9 months post-transplant and I am a healthcare provider in a family medicine clinic. I was back to work about 2 months post. I see patients 2 days a week and do admin/teaching the rest of the week.

I wear a surgical mask most of the time at work. Initially I wore an N95 when seeing patients but my transplant team felt it was ok to downgrade to a surgical mask after 6 months. Now that it’s flu season I’m back to the N95 with patients again.

I don’t typically wear a mask when socializing but will put one on crowded spaces with poor ventilation.

I get my annual flu/covid booster and have all the other vaccines—pneumonia, hepatitis, etc.

So far I’m doing well and haven’t had any major illnesses.

[Hawk12 in reply to Cabrilla]

Thank you Cabrilla! 😊

[Merlin_Way]

I've been masking since March of 2020 in all public places. My Covid fear lasted a long time because I live with an octogenarian (I'm in 40s). Found out about kidney disease in 2022 after becoming very sick, luckily received a transplant in '23. So I've been a hardcore mask wearer for over four years, and plan to forever. It BLOWS my mind every time I enter a medical building and see that here in Baltimore, maybe 10% of the people are masked.

In buildings where there are sick people, old people, and immunocompromised people. I was very angry at 'the breathers' for the first two years of pandemic, and have slowly learned that anger is not helping MY immune system, so I just let it be. The person you saw in a waiting room is not too bright.

[Hawk12 in reply to Merlin_Way]

Thank you Merlin_Way! 😊