Wisdom from transplant patients pre Covid?
I am really curious to hear from people who had their transplants PRE Covid and how you managed infection control? Covid is surging again but there are other respiratory illnesses also on the rise. I’m wondering what you did to protect yourself when mask wearing, social distancing, frequent handwashing weren’t the norm? Also there is increased risk for bacterial and fungal infections- how did you cope with that risk?
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@katebw, what an interesting question. It just so happens that I've got an interesting place to steer you towards for a collective answer from transplant members like @rosemarya @coastalgirl @powderpuf @dglass4040 @2011panc @contentandwell @IWantToBelieve @dave12 @peterm53 @cehunt57 @silverwoman who offered such advice before the whole pandemic thing started.
This blog post was written collecting top tips from members:
– Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
Which was inspired by this 2016 discussion:
– Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/
Which was then made into this video:
Hi @katebw 😊
It is great to hear from you! Colleen provided the perfect link regarding "hacks and tips for staying safe after transplant".
The truth is pre covid and post covid protocols from our Transplant Infectious Disease docs are exactly the same, except for the fact that post covid we are constantly surrounded by infection all the time we are inside with strangers. So the world is now like being on an airplane all the time in public. We now use the "close quarters, dirty airplane" rules everyday we spend with the public. So going to the grocery store is like going on an airplane ride for us! Wearing a mask, don't touch the surfaces, stay away from sick people., etc. I never thought about it like that before, but we are all on an airplane of infection every day. Covid is highly contagious and it's every where. It seems like my friends and family members are testing positive all the time (and they get a different subvariant multiple times). Coronaviruses are difficult to handle with vaccines and monoclonal antibodies because they are constantly mutating like the common cold and the flu. So the vaccines and treatments need to be revised on an ongoing basis which is very expensive. It's difficult to predict what's needed for the next subvariant coming down the pike.
No wonder I am stressed out by covid. 😊
@katebw, @hello1234 provided some good information. Here is my 2 cents worth. I had my transplant in 2005. I received good instruction about being immune suppressed and on how to take care of myself post transplant. When the pandemic started it was a good reminder to “dust off” those protocols and step it up as much as possible. It was kind of like the transplant was good training for the pandemic. The big difference was that I couldn’t be sure that the general population out there would be equally prepared. My husband has asthma and allergies. His doctor said “getting COVID would be very bad for him.” He ended up having to retire from a sales position involving face to face interaction with customers. We (my husband and I) made some changes to increase our self protection such as streaming events instead of going to them (like church). We ordered things online for pick up or delivery instead of shopping. We face timed with family & friends for social activities. Even our Dr. appointments were done with video conferencing. We increased hand washing and wiping down surfaces of things with antiseptic wipes. If we had to be with other people, we stayed 6 feet apart as best as possible and masked. Examples of those situations are going to the clinic for bloodwork, having service technicians here to replace a hot water heater, going to a mechanic for car work. When the vaccines and boosters became available we got everything as recommended by our medical teams. I also received Evusheld. These things were all a bit challenging but we discovered some benefits too. We put very little mileage on the car and saved a lot on gas costs. We got outside and started walking around the neighborhood more. We started reading everyday. To sum it up, as a Christian believer I think when God closes doors, He opens other ones or perhaps He provides windows to use.
I actually found precovid a bit more of a challenge because mask wearing wasn’t the norm and sometimes dodging coughs and sneezes became somewhat of a gymnastic exercise. I tried to make sure I received adequate rest, stayed hydrated, and I would scan a room as soon as entering and stay clear of anyone that coughed or sneezed. When in large seated crowds, I opted for the end seat on a back row to avoid anyone sitting behind me that would cough or sneeze. I would frequently wash my hands and always use saline spray at the beginning of each day and at the end of the day before going to bed.
At least during Covid the masses have been constantly reminded of safety precautions and makes people more aware. I think masks will become the norm for those that are more compromised and will hopefully keep us all a bit healthier.
Wishing everyone their best life forward.
Happy New Year!!
Hi @coastalgirl 😊
It is so nice to meet you. You have made some excellent points! I received my kidney transplant during the height of covid in 2020 so I never experienced the stress of keeping safe pre-covid.
I went to the eye doctor yesterday in Florida for my check up. No one was wearing a mask. The sneezing receptionist, the coughing guy in the waiting room, etc. I wore my N95 and told all three technicians and the doctor that I was a kidney transplant. They asked me if I wanted them to put on a mask and then they happily complied. Pre-covid they probably wouldn't even have a box of disposable masks at their desks. You are absolutely correct that now, we have a slightly more educated population about the spread of respiratory infection. Unfortunately, Florida is one of the rebellious states against science and data. So many of the citizens fight the idea of a courtesy mask to protect the vulnerable, but the doctor offices are usually responsive upon request. Which organ did you have transplanted and how is your state doing with covid?
@hello1234, I want to commend you for being proactive! You have demonstrated how we must be our own best advocate for our safety! By telling the receptionist that you are a kidney transplant recipient, she knew what she needed to do!
Did she ask about your transplant experience?
Hi @rosemarya 😊
Thank you so much for your very kind response! Yes, I am definitely my own advocate when it comes to exposure to infection.
After experiencing covid, I learned that I had to be more assertive about my own safety. I thought I was being super careful, but I got sick. It was scary.
Unfortunately, with these new highly contagious variants, it only takes one brief encounter.
Also, the FDA update that we can no longer depend on Evusheld and the monoclonal antibodies infusion treatments brings my concern to the next level.
Today, I took my elderly mother to her eye doctor appointment (different office and different doctor). Again, no one was wearing a mask in the waiting room and none of the staff was wearing a mask including the doctor. I told them I was wearing a mask because I was an immune suppressed kidney transplant patient. At today's office, no one offered to put on a mask. It seems that each doctor sets a different protocol in their offices regarding masks and the reaction to a masked patient.
The only doctor office that I go to that has a sign on the door that masks are required is my local nephrologist. His patients are kidney transplant and elderly dialysis patients so he understands the importance of protecting his patient population from respiratory illness. I truly appreciate his advocacy for his patients. It is a comfortable, safe office to visit.
I hope everything is going well with you so far in the new year! ❤ Thank you again for your encouragement, it means a lot!