Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips – https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back – @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

REPLY
@rosemarya

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips – https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back – @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

Jump to this post

I had my 2 year checkup at Mayo,Rochester May 11,12. My husband and daughter were with. My daughter is my donor and needed to have labs done, too. We stayed at the Kahler close to the clinic and could walk to the clinic indoors. We brought most of our food with and our room had a mini kitchen. Mayo was taking every precaution to keep people safe. My new kidney is doing very well, but I’m showing signs of the BK virus. My Cellcept dose has been cut back and I’ve been having labs done every two weeks. I’m waiting to hear the results from last week’s labs.

REPLY

I stayed at the kahler as well back in March. Plan on staying there in September or October

REPLY
@racing212

I stayed at the kahler as well back in March. Plan on staying there in September or October

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That was the third time we’ve stayed at the Kahler. No more breakfast buffet, but not a good idea for transplant patients anyway. Also, I needed to skip breakfast for testing.

REPLY
@wildcat

Hi @xplantsister

You sent me a private message and I was happy to reply. Did you receive it? I just wanted to check that the information I gave to you was useful. I don't know how to send a private message hence this public one! I hope that's okay.

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Hello @wildcat – I did not receive your message. Would it be too difficult for you to repeat here some exercises that you found helpful when you were early in your transplant recovery, e.g., a few months post-transplant and 6-months post-transplant? The MDs tell my brother to walk as much as he can, but he gets winded very quickly for various medical reasons. We try seated yoga, which he seems to tolerate better and we were wondering if pilates (which you mentioned) might be another alternative. Or, we would appreciate any thoughts on this topic from you or other transplant recipients. Thank you.

REPLY
@rosemarya

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips – https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back – @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

Jump to this post

Good morning @rosemarya ! We are currently at appointment #3 for Tim's annual checkup. It is crazy to see how everything is different, yet the same. I was extremely nervous about traveling here but that actually went smoothly. I did notice that people working in locally owned gas stations in smaller towns don't wear masks, but in the larger/corporate ones they do wear them.

Tim's recent appointment with his neurologist was a telehealth visit. We scheduled his next one as a telehealth also. It was a good appointment, but like the doctor said, there are things you can't pick up on via video.

On a side note, we are staying at the Gift of Life house. When we got our name badges and etc from our room mailbox someone had purchased a gift card to the Canadian Honker for us! What a fun and wonderful surprise!

Many blessings,
JoDee

REPLY
@rosemarya

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips – https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back – @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

Jump to this post

@rosemarya We are basically not leaving the house still except for medical appointments, and walks in our well spaced out neighborhood and a really nice trail maintained by the state, The Granite State Rail Trail. We pass maybe 3 or four couples while walking and we and they walk single file on opposite sides of the trail when that happens.
My husband did go to get a haircut last week. The same day he had to go for pre-appointment lab work at his oncologist. The safety measures at the salon were more protective than at the doctor's! He couldn't even come in the door until his temperature was taken.

My son and daughter-in-law have been isolating but are going on the large annual vacation that all of his wife's relatives go to on the coast of SC. I am not happy about that, I think there will be about 20 – 30 people there and many are working outside of their homes. I suspect there may be pressure for them to go. We told them to not come here. Not only would he feel forever guilty if he brought any germs here, but I would feel forever guilty if either of them contracted the virus while traveling.

Since my daughter and her husband are isolating I am thinking they can probably come. I hope so. They can make the drive directly.

I do have some medical appointments coming in July. I'm a bit apprehensive but on the other hand it might be nice to get out of the house! I am really getting so sick of having groceries delivered. I really have to plan ahead, plus I much prefer to choose my own produce and meat.
JK

REPLY
@rosemarya

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips – https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back – @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

Jump to this post

@rosemarya Hi and great to hear everything went well. I actually have been to Mayo Phoenix a few times now for labs and a Drs apt. Plus some testing on a issue im having with my prostate. I saw a little blood just a few drops while urinating but had a zoom visit with that doctor and following up next month in person. But just as you said Mayo is doing well keeping us safe and I did get tested for covid for a Angiogram test and was negative. I decided back when this started not to go to outside labs mainly because the ones near me were usually crowded and I believe at Mayo labs it was safer.
I've had a couple of IVIG treatments also and everyone is masked plus sanitizing so feeling pretty good about the risk of catching it.

I was a little concerned tho on an article from the journal of Medicine that mentioned a study done in England that is showing certain blood types get the virus more severe and mine was at the top Type A and O was the least likely to get a severe case.

Also, it seems my area in Arizona is having a bit of an increase and even in my area there have been some deaths so im staying vigilant not exposing myself like it seems others are
Still attending Church Services online and only getting out during my morning walks. My wife what a trooper is doing most of the other needs like grocery shopping, Mail box checking etc. I am missing all the things I used to love Attending Church, Golf, eating out with friends so im looking forward to a vaccine it seems is the only solution for us transplant folks. We did do a hotel stay for a few days when I had my angiogram so my wife could have somewhere to wait.
I thought the hotel did great on keeping everyone safe. Staff wore masks and room cleaning was between guest stays. If we wanted towel exchange we would put them in a bag and the fresh one's would be given at the door. Well that's about it.
Have a Blessed Day
Dana

REPLY
@wildcat

Hi @xplantsister

You sent me a private message and I was happy to reply. Did you receive it? I just wanted to check that the information I gave to you was useful. I don't know how to send a private message hence this public one! I hope that's okay.

Jump to this post

@wildcat,i @xplantsister
How to Send a Private Message – Click on this link then scroll down to find illistrated directions for How to Send a Private Message.
https://connect.mayoclinic.org/get-started-on-connect/

REPLY
@rosemarya

@wildcat,i @xplantsister
How to Send a Private Message – Click on this link then scroll down to find illistrated directions for How to Send a Private Message.
https://connect.mayoclinic.org/get-started-on-connect/

Jump to this post

Hello @rosemarya – Thank you for the helpful link. We did manage to connect. Continue well.

REPLY
@rosemarya

Are you keeping up with your routine transplant medical care?

I have safely traveled by car and had my annual checkup for my liver and kidney transplant. My original appointment that was set for late April was rescheduled for June. When it was confirmed that my June appointment was going to happen, I was not sure if I wanted to keep the appointment. Like many of you, I live at a distance from my transplant center. I was afraid of the travel, lodging, eating along the way.
Now, that I have the experience behind me, I am happy that I took advantage of the safe travel guidelines that Mayo has shared. My husband and I made the trip and were able to protect ourselves as we made the 750 mile trip.
The entire staff and patients at Mayo were exceptional in their adherence to safe protocol. I do have to admit, though, that I am happy to be back in my home, safe and secure. I am even happier that I had another thorough checkup for my beautiful transplant!
Safe Travel Tips – https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-safety-tips/

-Since we are practicing safe distancing, There is plenty of room for everybody. New Members Welcome.
Welcome back – @michaelswaim, @jerrynord, @tjgisewhite, @autoimmunecirr, @gphetteplace, @frmike, @jacinta, @jsw, @contentandwell, @benlam11, @brantodd1, @xplantsister, @wildcat, @des46893, @msgtrebholtz, @gaylea1, @joanaiken, @rowdyramsey, @stella25, @ca426, @jeanne5009, @jdlogan65, @jacqualin, @jolinda, @beckyy39, @jodeej, @racing212, @manuelhsilva, @brianna, @danab, @khh, @seahorstmayo, @suzeaz, @birdienanie, @biteme, @lisamb, @1bigblacksuv, and anyone that I missed.

How are you keeping up with your routine transplant medical care? Have you kept up with labs? Have you had a virtual visit? Have you had an in-person visit?

Jump to this post

While I would feel safe at the MAYO – I do not feel the same about staying a week in Phoenix. I am lucky to be able to complete my tests in Las Vegas and do TeleHealth with the MAYO Doctors. Maybe next year will be better. I can say this because I feel fine, and the MAYO Liver and Kidney teams are still reviewing my Labs every other week in addition to my Local Doctors. However if there were any real concerns, I would definitely take the risk and maybe rent a Motor Home.

REPLY
@danab

@rosemarya Hi and great to hear everything went well. I actually have been to Mayo Phoenix a few times now for labs and a Drs apt. Plus some testing on a issue im having with my prostate. I saw a little blood just a few drops while urinating but had a zoom visit with that doctor and following up next month in person. But just as you said Mayo is doing well keeping us safe and I did get tested for covid for a Angiogram test and was negative. I decided back when this started not to go to outside labs mainly because the ones near me were usually crowded and I believe at Mayo labs it was safer.
I've had a couple of IVIG treatments also and everyone is masked plus sanitizing so feeling pretty good about the risk of catching it.

I was a little concerned tho on an article from the journal of Medicine that mentioned a study done in England that is showing certain blood types get the virus more severe and mine was at the top Type A and O was the least likely to get a severe case.

Also, it seems my area in Arizona is having a bit of an increase and even in my area there have been some deaths so im staying vigilant not exposing myself like it seems others are
Still attending Church Services online and only getting out during my morning walks. My wife what a trooper is doing most of the other needs like grocery shopping, Mail box checking etc. I am missing all the things I used to love Attending Church, Golf, eating out with friends so im looking forward to a vaccine it seems is the only solution for us transplant folks. We did do a hotel stay for a few days when I had my angiogram so my wife could have somewhere to wait.
I thought the hotel did great on keeping everyone safe. Staff wore masks and room cleaning was between guest stays. If we wanted towel exchange we would put them in a bag and the fresh one's would be given at the door. Well that's about it.
Have a Blessed Day
Dana

Jump to this post

I've completed a double transplant Last Year – I'm also a Blood Type "A" and read the same article, however I've not seen anything from the Mayo on this. Since I do not have abnormal symptoms and all tests can be completed in town – for right now, I'm not willing to travel. I miss friends, get together's, going out, traveling etc, and with this heat I'm tired of walking circles in the house.Then I stop myself for all the things I'm grateful for, and that includes the Amazing Team that has allowed me to still be here and the Gift of another Healthy Day.

REPLY

You are awesome! Thank you for sharing. I am comstantly amazed at how much alike and how different we are! And do you know the most wonderful part? We are getting the medical care that we need as we protect our cherished transplanted organs.

@cmael, I thought of you while I was in the waiting room in the Charlton lab! I hope that you will see positive results with your labs and sighs of BK virus. Is there a specific lab for BK virus, or is it minitored thru other kabs? (I think I have noticed a BK lab result in my annual labs, but not really sure)

@racing212, It is nice to be close to the clinic, isn't it. On nice days my husband and I like to walk outside instead of the walkway from our hotel. The weather should be pleasant in the fall.

@jodeej, I'm thinking about you and Tim. Hope the visit is going smoothly. Is this a 2 or 3 day visit? What are you choosing from the Honker menu? My choice is Canadian Walleye, and coconut cake for a splurge!

@contentandwell, you are such a good mom. I know that they care as much about your safety as you about their safety. As transplant recipients, we have to be extra careful. We also have an advantage over the rest of the population because we are accustomed to practicing safe distancing and hand cleaning.

@danab, I am happy that you are learning the routine by going back and forth for tests, but sorry that you have to do during these challenging times. Enjoy your blessings along the way, and a safe return to in-person church when the time is right for you. My church has demonstrated a safe reopening with live broadcast for the at-risk population. I will grab my violin and take my already safe seat in 2 weeks when the music director returns from vacation.

@wildcat, We would love to hear from you. What is going on with your transplant care in Scotland?

@benlam11, Thanks for telling us how good it can be when our local doctor works in coordination with our transplant department! I realize that each of our areas are at different locals on coronavirus activity so you are doing the right think to protect yourself. Are you able to get outside and take a walk?

When you share – You are offering support and hope to someone who will read your story. Life is Good!
and You Look Great in that Mask 😷

REPLY
@rosemarya

You are awesome! Thank you for sharing. I am comstantly amazed at how much alike and how different we are! And do you know the most wonderful part? We are getting the medical care that we need as we protect our cherished transplanted organs.

@cmael, I thought of you while I was in the waiting room in the Charlton lab! I hope that you will see positive results with your labs and sighs of BK virus. Is there a specific lab for BK virus, or is it minitored thru other kabs? (I think I have noticed a BK lab result in my annual labs, but not really sure)

@racing212, It is nice to be close to the clinic, isn't it. On nice days my husband and I like to walk outside instead of the walkway from our hotel. The weather should be pleasant in the fall.

@jodeej, I'm thinking about you and Tim. Hope the visit is going smoothly. Is this a 2 or 3 day visit? What are you choosing from the Honker menu? My choice is Canadian Walleye, and coconut cake for a splurge!

@contentandwell, you are such a good mom. I know that they care as much about your safety as you about their safety. As transplant recipients, we have to be extra careful. We also have an advantage over the rest of the population because we are accustomed to practicing safe distancing and hand cleaning.

@danab, I am happy that you are learning the routine by going back and forth for tests, but sorry that you have to do during these challenging times. Enjoy your blessings along the way, and a safe return to in-person church when the time is right for you. My church has demonstrated a safe reopening with live broadcast for the at-risk population. I will grab my violin and take my already safe seat in 2 weeks when the music director returns from vacation.

@wildcat, We would love to hear from you. What is going on with your transplant care in Scotland?

@benlam11, Thanks for telling us how good it can be when our local doctor works in coordination with our transplant department! I realize that each of our areas are at different locals on coronavirus activity so you are doing the right think to protect yourself. Are you able to get outside and take a walk?

When you share – You are offering support and hope to someone who will read your story. Life is Good!
and You Look Great in that Mask 😷

Jump to this post

@rosemarya My last labs had two vials. One was for Cellcept trough level and the other was for the BK virus. I’m still waiting for the results.

REPLY
@rosemarya

You are awesome! Thank you for sharing. I am comstantly amazed at how much alike and how different we are! And do you know the most wonderful part? We are getting the medical care that we need as we protect our cherished transplanted organs.

@cmael, I thought of you while I was in the waiting room in the Charlton lab! I hope that you will see positive results with your labs and sighs of BK virus. Is there a specific lab for BK virus, or is it minitored thru other kabs? (I think I have noticed a BK lab result in my annual labs, but not really sure)

@racing212, It is nice to be close to the clinic, isn't it. On nice days my husband and I like to walk outside instead of the walkway from our hotel. The weather should be pleasant in the fall.

@jodeej, I'm thinking about you and Tim. Hope the visit is going smoothly. Is this a 2 or 3 day visit? What are you choosing from the Honker menu? My choice is Canadian Walleye, and coconut cake for a splurge!

@contentandwell, you are such a good mom. I know that they care as much about your safety as you about their safety. As transplant recipients, we have to be extra careful. We also have an advantage over the rest of the population because we are accustomed to practicing safe distancing and hand cleaning.

@danab, I am happy that you are learning the routine by going back and forth for tests, but sorry that you have to do during these challenging times. Enjoy your blessings along the way, and a safe return to in-person church when the time is right for you. My church has demonstrated a safe reopening with live broadcast for the at-risk population. I will grab my violin and take my already safe seat in 2 weeks when the music director returns from vacation.

@wildcat, We would love to hear from you. What is going on with your transplant care in Scotland?

@benlam11, Thanks for telling us how good it can be when our local doctor works in coordination with our transplant department! I realize that each of our areas are at different locals on coronavirus activity so you are doing the right think to protect yourself. Are you able to get outside and take a walk?

When you share – You are offering support and hope to someone who will read your story. Life is Good!
and You Look Great in that Mask 😷

Jump to this post

Rosemary, my son said nothing is cast in concrete, it depends on the situation. Since things are surging once again I really hope they will cancel going. The south is not doing well and now CO has crossed over from doing well to not as well. NH has done surprisingly well.

It's interesting that the states like NY that had the worst numbers are doing very well now. Obviously the population there has been diligent following the precautions as they have in MA too. It's so crazy that some people think of wearing a mask as infringing on their rights!
JK

Liked by jodeej

REPLY
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