Meet fellow Caregivers - Introduce yourself

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let’s use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@bnthrjay

My spouse was diagnosed with bladder cancer, went thru chemo prior to surgery. Spouse had surgery recently to remove bladder, prostate and some pelvic lymph nodes. We are thankful that it went well. Recovery has been very slow. As a caregiver I am struggling a bit with this, have been doing this for a lot less than a lot of people on this site; since January 2020. I have some health issues as well, chronic pain. My adult children have some major issues going on as well. I am trying to care for my spouse as best as I can, adjusting to the new urostomy and help needed. COVID-19 has made it impossible to have family or friends to help out, so I am having a hard time. Often, I am not as patient as I need to be, especially since I am trying to prepare meals that are palatable to him, and just feel overwhelmed. Then, of course, I feel guilty, since so many others have it so much worse.
thanks

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Hello @bnthrjay Welcome to Connect and thank you for being here!
Struggling with, and feeling guilt, are both very common feelings for caregivers. I wish we could take guilt and throw it in the trashcan! We, as caregivers, can only do the best we can with what energy, etc. we have! I like to say we need to remember Wonder Woman and Superman only exist in the comics! There are no superheroes in caregiving….rather just regular, real folks trying their best for their loved ones! Making adjustments is such a constant need and I wish I had suggestions for you. I know my wife's palate changed often with her disease and one favorite food would suddenly become taboo on the menu! I never understood this, but tried to take it in stride and began to try others things. For the last several months she would only eat a boiled chicken breast, white rice, and frozen mixed vegetables (with the green beans removed) 🙂

We can each only try our best and feel free to ask any questions you have and I am wishing you all the very best!

Strength, courage, and peace!
Scott

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@jstoll1247

I am getting ready to start my journey for caring for my husband who is on the heart transplant list at Mayo Florida campus. We are both scared for what the future will bring into our lives in the next year. He is 73 and we are or were very active until the COVID outbreak. It would be nice to know someone who is getting close to the one year Transplant anniversary and talk about what to expect. He is millirone and would like to know if your husband was on this waiting for his transplant.

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@jstoll1247 Hi I received a heart transplant a couple of years ago. I see your Husband is on the list to receive a Heart. I would like to offer my help if you may have a questions about the process.
How are things going? Has your Husband received his Heart yet?
Have a Blessed Day
Dana

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He was scheduled to go into the hospital on September 8th but we had a set back. He went to the dentist for his final cleaning and the dentist decided he needed to take out his last wisdom tooth as a precaution before the surgery. After the extraction his throat was badly bruised and red so they put him on antibiotics for a week and he has been rescheduled two weeks from this past Tuesday. We are both ready for the surgery and the doctors and nurses at Mayo have been outstanding. Appreciate your reply and I will definitely reach out as questions come up. God Bless You

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@jstoll

He was scheduled to go into the hospital on September 8th but we had a set back. He went to the dentist for his final cleaning and the dentist decided he needed to take out his last wisdom tooth as a precaution before the surgery. After the extraction his throat was badly bruised and red so they put him on antibiotics for a week and he has been rescheduled two weeks from this past Tuesday. We are both ready for the surgery and the doctors and nurses at Mayo have been outstanding. Appreciate your reply and I will definitely reach out as questions come up. God Bless You

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@jstoll im so glad to hear you are getting close. It was a great idea tho to be completely ready. Ill be waiting to hear of the next phase and will be available with any questions.
Have a Blessed Day
Dana

REPLY

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best…

Bill

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@billacaregiver

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best…

Bill

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Bill, thank you for sharing this info. You think we would all know this but we forget since we are trying to be superheroes.

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@billacaregiver

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best…

Bill

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Hi @billacaregiver, welcome to Mayo Clinic Connect. I'm glad to see that you're following the Transplants group as well as the Caregivers group. I'm confident that you and your wife will be an asset to the Connect community and have plenty to learn and share. When appropriate, you may also wish to check out the various cancer-related groups.

The pandemic surely made medical procedures more anxiety-ridden, even for the calmest of people. Congrats, first of all on getting a successful liver transplant. May I ask what diagnosis led to her needing a transplant? Was the liver from a living or deceased donor?

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I'm John and I have just joined the Mayo Clinic caregivers group. I have been a Mayo patient since 2012 and have had several operations and procedures there. A native of St. Paul, Minnesota I currently live in State College, Pennsylvania, where Penn State University is located. I joined the U.S. Foreign Service in 1963 and served in many international locations: Italy, Vietnam, Malaysia, the Congo, Jamaica, and Australia. I was also assigned to the White House office of Drug Abuse Policy from 1982-1984. I met my French wife in Vietnam in 1966 and we were married in the Vatican in 1968. I retired from the Foreign Service in 1991 to join Penn State University where I worked in various positions in the Australia-New Zealand studies center and in the Office of Global Programs. I was the director of Education Abroad from 2000-2010. I also taught undergraduate courses in communication and completed a Ph.d. at the age of 59 (is that a world record for oldest Ph.d. completion?). I retired from Penn State in 2010 when my wife began showing signs of dementia. I have been her primary caregiver, keeping her at home with me until a year ago this month when I was hit by a car while crossing the street on foot. The driver, a Ph.D. student in my old college, told the police he was late for a meeting and was distracted since he was eating, drinking and texting. I had to undergo an operation on my right ankle, which was broken, and was hospitalized for two weeks for post-surgery rehabilitation. I was unable to take care of my wife during my hospitalization, of course. During that time our two daughters, who live in Minnesota and California, placed her in a skilled nursing residential care center in our town. She has been there ever since. I used to visit my wife every day for lunch and dinner. But in the covid 19 era, visits have been severely curtailed. After a short period during which no visits at all were allowed, I am now permitted brief visits under strictly controlled conditions twice a week. While my wife's care is generally fine, I am the only person who speaks to her in French. She mostly dozes and remains isolated in her room, although recently the facility has restarted group exercise programs. One of the things I've learned as a caregiver for the past several years is that there is very little information easily accessible to people looking for information on where to find care and how to evaluate care. You're basically left to your own devices to find the appropriate options. Admittedly my wife was admitted to her facility under rushed and unusual circumstances. Nevertheless I have been looking around to assess whether she is in the right place with the right level of care and have been unable to find anyone who can help me think this through. I have consulted friends, the local Center for Aging, gone online etc. without much luck in coming up with information. The local PA Center for Aging seems mostly to work on placing seniors eligible for Medicaid into facilities that will accept government insurance. As a result of all my fumbling around for the past few years, I am pretty much aware of what's available locally. I would like to think, however, that a society like ours with urgent need for medical care for the aging would have better navigational tools to help people like my wife and me know what the various options are and how to assess them. We are seriously considering moving back in a few months to St. Paul, where we have a home. I am depressed at the thought that I will have to begin the search for care all over again. I am somewhat more familiar with the terrain in St. Paul than I was here in Pennsylvania, because I had to find a facility for my mother 20 years ago. But my information is out of date and I dread having to start all over again. I look forward to any tips members of this group have for navigating the caregiver journey.

REPLY
@djangomay2

I'm John and I have just joined the Mayo Clinic caregivers group. I have been a Mayo patient since 2012 and have had several operations and procedures there. A native of St. Paul, Minnesota I currently live in State College, Pennsylvania, where Penn State University is located. I joined the U.S. Foreign Service in 1963 and served in many international locations: Italy, Vietnam, Malaysia, the Congo, Jamaica, and Australia. I was also assigned to the White House office of Drug Abuse Policy from 1982-1984. I met my French wife in Vietnam in 1966 and we were married in the Vatican in 1968. I retired from the Foreign Service in 1991 to join Penn State University where I worked in various positions in the Australia-New Zealand studies center and in the Office of Global Programs. I was the director of Education Abroad from 2000-2010. I also taught undergraduate courses in communication and completed a Ph.d. at the age of 59 (is that a world record for oldest Ph.d. completion?). I retired from Penn State in 2010 when my wife began showing signs of dementia. I have been her primary caregiver, keeping her at home with me until a year ago this month when I was hit by a car while crossing the street on foot. The driver, a Ph.D. student in my old college, told the police he was late for a meeting and was distracted since he was eating, drinking and texting. I had to undergo an operation on my right ankle, which was broken, and was hospitalized for two weeks for post-surgery rehabilitation. I was unable to take care of my wife during my hospitalization, of course. During that time our two daughters, who live in Minnesota and California, placed her in a skilled nursing residential care center in our town. She has been there ever since. I used to visit my wife every day for lunch and dinner. But in the covid 19 era, visits have been severely curtailed. After a short period during which no visits at all were allowed, I am now permitted brief visits under strictly controlled conditions twice a week. While my wife's care is generally fine, I am the only person who speaks to her in French. She mostly dozes and remains isolated in her room, although recently the facility has restarted group exercise programs. One of the things I've learned as a caregiver for the past several years is that there is very little information easily accessible to people looking for information on where to find care and how to evaluate care. You're basically left to your own devices to find the appropriate options. Admittedly my wife was admitted to her facility under rushed and unusual circumstances. Nevertheless I have been looking around to assess whether she is in the right place with the right level of care and have been unable to find anyone who can help me think this through. I have consulted friends, the local Center for Aging, gone online etc. without much luck in coming up with information. The local PA Center for Aging seems mostly to work on placing seniors eligible for Medicaid into facilities that will accept government insurance. As a result of all my fumbling around for the past few years, I am pretty much aware of what's available locally. I would like to think, however, that a society like ours with urgent need for medical care for the aging would have better navigational tools to help people like my wife and me know what the various options are and how to assess them. We are seriously considering moving back in a few months to St. Paul, where we have a home. I am depressed at the thought that I will have to begin the search for care all over again. I am somewhat more familiar with the terrain in St. Paul than I was here in Pennsylvania, because I had to find a facility for my mother 20 years ago. But my information is out of date and I dread having to start all over again. I look forward to any tips members of this group have for navigating the caregiver journey.

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Wow, what a story. You have been traversing a tough road. When you look for a facility, there are key questions to ask. How many people are on duty at night? How many showers or baths a week? My mother was at Madonna Towers in Rochester, MN and I was shocked to learn an incontinent person only received one bath or shower a week. Any more than that was a special request at additional cost. Ask about the activities program. Even people with dementia need things to do: folding laundry, being read to, watching a video, etc. My mother lost the ability to read and was so pleased to have someone read to her. As she said, "I don't know what the book is about but it is exciting." Pet therapy and music therapy are also things to ask about.

REPLY
@djangomay2

I'm John and I have just joined the Mayo Clinic caregivers group. I have been a Mayo patient since 2012 and have had several operations and procedures there. A native of St. Paul, Minnesota I currently live in State College, Pennsylvania, where Penn State University is located. I joined the U.S. Foreign Service in 1963 and served in many international locations: Italy, Vietnam, Malaysia, the Congo, Jamaica, and Australia. I was also assigned to the White House office of Drug Abuse Policy from 1982-1984. I met my French wife in Vietnam in 1966 and we were married in the Vatican in 1968. I retired from the Foreign Service in 1991 to join Penn State University where I worked in various positions in the Australia-New Zealand studies center and in the Office of Global Programs. I was the director of Education Abroad from 2000-2010. I also taught undergraduate courses in communication and completed a Ph.d. at the age of 59 (is that a world record for oldest Ph.d. completion?). I retired from Penn State in 2010 when my wife began showing signs of dementia. I have been her primary caregiver, keeping her at home with me until a year ago this month when I was hit by a car while crossing the street on foot. The driver, a Ph.D. student in my old college, told the police he was late for a meeting and was distracted since he was eating, drinking and texting. I had to undergo an operation on my right ankle, which was broken, and was hospitalized for two weeks for post-surgery rehabilitation. I was unable to take care of my wife during my hospitalization, of course. During that time our two daughters, who live in Minnesota and California, placed her in a skilled nursing residential care center in our town. She has been there ever since. I used to visit my wife every day for lunch and dinner. But in the covid 19 era, visits have been severely curtailed. After a short period during which no visits at all were allowed, I am now permitted brief visits under strictly controlled conditions twice a week. While my wife's care is generally fine, I am the only person who speaks to her in French. She mostly dozes and remains isolated in her room, although recently the facility has restarted group exercise programs. One of the things I've learned as a caregiver for the past several years is that there is very little information easily accessible to people looking for information on where to find care and how to evaluate care. You're basically left to your own devices to find the appropriate options. Admittedly my wife was admitted to her facility under rushed and unusual circumstances. Nevertheless I have been looking around to assess whether she is in the right place with the right level of care and have been unable to find anyone who can help me think this through. I have consulted friends, the local Center for Aging, gone online etc. without much luck in coming up with information. The local PA Center for Aging seems mostly to work on placing seniors eligible for Medicaid into facilities that will accept government insurance. As a result of all my fumbling around for the past few years, I am pretty much aware of what's available locally. I would like to think, however, that a society like ours with urgent need for medical care for the aging would have better navigational tools to help people like my wife and me know what the various options are and how to assess them. We are seriously considering moving back in a few months to St. Paul, where we have a home. I am depressed at the thought that I will have to begin the search for care all over again. I am somewhat more familiar with the terrain in St. Paul than I was here in Pennsylvania, because I had to find a facility for my mother 20 years ago. But my information is out of date and I dread having to start all over again. I look forward to any tips members of this group have for navigating the caregiver journey.

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Hi John this is Ben in Pasadena. My Mom is 101…she lives with me and luckily she is in general good health, although she has dementia and can’t walk anymore. About 5 years ago, she was in.a SNF which was competently run, but unfortunately the unfamiliar surroundings caused her to have a fall and her head hit the concrete,leading to a hematoma around her brain. Fortunately she recovered after we moved her back home but it took a long time. Since then I have a strong aversion to institutional settings. If she needs care down the road I will probably go the palliative route and opt for home hospice. As far as searching for resources I can certainlysympathize. I too have a Ph.D. And yet have a difficult time navigating the system and understanding bureaucratic jargon. One thing I can suggest is taking an online course on elder care. Gerontology is a rapidly expanding field, and I would bet that there must be something on Coursera you would find useful. You can also find course syllabi online which should help point you in the right direction. Good luck!

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@billacaregiver

Hello,

My name is Bill. I’ve been looking for a group to share experiences and concerns with when they arise. My wife and I have been going through the liver transplant process for over a year. Four months ago she received a liver transplant. I was and am happy to do whatever is needed like shopping, cleaning, cooking, hugging, loving and going to appointments. So far things are going well and she is mostly back to her normal independent life. The pandemic does give me some anxiety along with concerns about the transplant since now being on immune suppressants makes her more susceptible to the environment. Like everyone else we cannot do all the things we want to because of the pandemic.

One of my sisters is a retired nurse and is someone to turn to for support.

We are both retired. She works part time from home for a cancer support group helping people living with cancer. I also volunteer for the same group and other non-profits.

One thing I learned is not to worry about things out of my control and to focus on things that I can control.

So that’s it in a nutshell

All the best…

Bill

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Bill, thankful for your thoughts to help with priorities. Your reminders are so helpful! I get stuck on solving a problem, wasting my time trying to fix something all by myself! Team work or leaving an unsolveable problem for someone else to tackle are good suggestions. I hope you and your loved ones have a great September!

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@colleenyoung

Hi @billacaregiver, welcome to Mayo Clinic Connect. I'm glad to see that you're following the Transplants group as well as the Caregivers group. I'm confident that you and your wife will be an asset to the Connect community and have plenty to learn and share. When appropriate, you may also wish to check out the various cancer-related groups.

The pandemic surely made medical procedures more anxiety-ridden, even for the calmest of people. Congrats, first of all on getting a successful liver transplant. May I ask what diagnosis led to her needing a transplant? Was the liver from a living or deceased donor?

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Hi Colleen,

Thanks for the welcome and I look forward to being part of the groups. I don’t think my wife will join at this time.

So, she was diagnosed with PBS Primary Biliary Cirrhosis, some 20 years ago, caused by the immune system attacking her liver. The time came for the transplant and a deceased donor was located. We moved to Rochester MN over four months ago when put on the on call list per advice of the doctor. Also, we didn’t want to travel home then back here four months later because of the pandemic. We’ll be heading home in a few weeks.

Her position at Gildas Club of Kentuckian is IT and I help out where I can in the kitchen, as a photographer, whatever is needed and at events. We are not social workers for client support however Gilda’s Club of Kentuckian has a great staff of professionals, hosting virtual support groups on-line and events. It’s all free. The Club House will open for in person services once it is safe.

Anyone living with cancer and would like to join can go to a local chapter or we take everyone from any state or country. Go to Gilda’s Club Kentuckian. Maybe you could post that information for the cancer group. I hope I’m not breaking any rules posting this information. It’s always something.

On flu shots, yesterday I had the FluAd for 65 and up and she had the normal dose at CVS.

Take care…

@billacaregiver.

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@ceclark41

Bill, thankful for your thoughts to help with priorities. Your reminders are so helpful! I get stuck on solving a problem, wasting my time trying to fix something all by myself! Team work or leaving an unsolveable problem for someone else to tackle are good suggestions. I hope you and your loved ones have a great September!

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Thanks and good to hear from you. You have a great September too.

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@billacaregiver

Hi Colleen,

Thanks for the welcome and I look forward to being part of the groups. I don’t think my wife will join at this time.

So, she was diagnosed with PBS Primary Biliary Cirrhosis, some 20 years ago, caused by the immune system attacking her liver. The time came for the transplant and a deceased donor was located. We moved to Rochester MN over four months ago when put on the on call list per advice of the doctor. Also, we didn’t want to travel home then back here four months later because of the pandemic. We’ll be heading home in a few weeks.

Her position at Gildas Club of Kentuckian is IT and I help out where I can in the kitchen, as a photographer, whatever is needed and at events. We are not social workers for client support however Gilda’s Club of Kentuckian has a great staff of professionals, hosting virtual support groups on-line and events. It’s all free. The Club House will open for in person services once it is safe.

Anyone living with cancer and would like to join can go to a local chapter or we take everyone from any state or country. Go to Gilda’s Club Kentuckian. Maybe you could post that information for the cancer group. I hope I’m not breaking any rules posting this information. It’s always something.

On flu shots, yesterday I had the FluAd for 65 and up and she had the normal dose at CVS.

Take care…

@billacaregiver.

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@billacaregiver, Bill, I am a transplant recipient. I got a liver and kidney transplant from a deceased donor in 2009 at Mayo Rochester. My husband and I lived at the Gift of Life House for 13 weeks in 2009. We live in Kentucky.
I mentor in the Transplant Group. I invite you to check out the discussion topics. Myself or one of our transplant members will be there to greet you.
Congratulations to you and your wife on her transplant.

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@harriethodgson1

Wow, what a story. You have been traversing a tough road. When you look for a facility, there are key questions to ask. How many people are on duty at night? How many showers or baths a week? My mother was at Madonna Towers in Rochester, MN and I was shocked to learn an incontinent person only received one bath or shower a week. Any more than that was a special request at additional cost. Ask about the activities program. Even people with dementia need things to do: folding laundry, being read to, watching a video, etc. My mother lost the ability to read and was so pleased to have someone read to her. As she said, "I don't know what the book is about but it is exciting." Pet therapy and music therapy are also things to ask about.

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Thanks very much for your suggestions. I don't think my wife is really capable anymore of activities like folding laundry. Sometimes her aides put on French music and that seems to perk her up. My real desire is to expose her to more stimulation, rather than just have her sit in a wheelchair all day. But I don't know what kind of stimulation will work best for her. Pet therapy is a good idea. We even tried a mechanical cat that purred etc, but she didn't seem to relate to that much at all. Possibly a guinea pig, which was a favorite animal of hers while we were living in Australia. My wife Christine was a very active person, who was a docent at the Melbourne, Australia Zoo, drove around the entire periphery of Australia by herself, was held by the Vietcong for a few days in Vietnam, etc. So it's sad to see her doze most of the time. It could be that she's not really capable of doing much anymore, but I want to experiment with more stimulation than she's getting at present.

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