This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all – a new life! We don’t always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say ‘Hi’. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

@jodeej

@colleenyoung @hopeful33250 @rosemarya @contentandwell
Hi all! I have not fallen off the edge of the earth. lol Things have been chaotic at our house.

The fun stuff is that our son got married to his long time girlfriend that we just adore. It was a beautiful day at a beautiful location in Snow Canyon, Utah. A week of family and friends. I loved every minute of it.

My husband, Tim, was medically retired from his job due to his cognition issues. Therefore, I've been buried under many pages of paperwork and phone calls. We won't know the railroad retirement boards decision for 9-12 MONTHS. Until then, he will get disability pay.

Disability was a whole nother fiasco, as our new family doctor abruptly left the practice and we had to find a new one to fill out the needed paperwork. It is done, all is filed and it was approved after several weeks of no pay coming.

So, some days I am struggling to keep my head above water. Others I'm proud of myself for getting done what needed to be handled.

In a few weeks we will be at Mayo for Tim's one year checkup. It's hard to believe that it has been a year already. It has been very eventful!

Thanks for inquiring about me.
Many blessings,
JoDee

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So great to hear from @jodeej. What a lovely reason for your absence – a son's wedding to a girl you both adore. It sounds like it was a great time with family and in-person connections.

You're not alone in being buried by paperwork. In fact there is a discussion dedicated to it in the Caregivers group. You may wish to add your tips or ask questions as you work your way through the process:
– Too much paperwork. Its overwhelming. https://connect.mayoclinic.org/discussion/too-much-paperwork-its-overwhelming/

Welcome back!

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@contentandwell

@jodeej I am so glad to hear from you, I was getting concerned. It sounds as if you have everything possible under control, good for you.
I sincerely hope things will improve for Tim's cognition.
It doesn't seem possible that it's been a year since Tim's transplant. I presume during the intervening year he goes locally to a transplant center for check-ups. I had still been going monthly for lab work but it has been so consistently good that I got a call last week that I can now go bi-monthly.
I really want to try yoga too but I keep putting it off but you make me want to try it even more. I'm not good at new things, I always hesitate, and I don't have anyone to go to it with. One of these days I'll take a deep breath and just go though.
Do be proud of yourself. You are doing a great job.
JK

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JK, I do the majority of my yoga in my living room while watching a YouTube video! No need to go anywhere. Lol

Tim goes to the local hospital for bloodwork. It started as weekly, than went twice a month and in May went to monthly. His normally looks really good, too. I still can't believe it's been a year!

Tim's speech therapist did an assessment on him recently and there was definite improvement in the score. Something's are still a struggle, and they probably always will be, like math, but we can live with them. There are so many things he can still do and that he is improving on doing. I'm so happy with his progress.

Blessings,
JoDee

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@jodeej

JK, I do the majority of my yoga in my living room while watching a YouTube video! No need to go anywhere. Lol

Tim goes to the local hospital for bloodwork. It started as weekly, than went twice a month and in May went to monthly. His normally looks really good, too. I still can't believe it's been a year!

Tim's speech therapist did an assessment on him recently and there was definite improvement in the score. Something's are still a struggle, and they probably always will be, like math, but we can live with them. There are so many things he can still do and that he is improving on doing. I'm so happy with his progress.

Blessings,
JoDee

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@jodeej I think if I went to yoga at my club a few times I could probably do it at home but I need that feedback initially. I am not a natural at all.
I am so happy about Tim's progress. Don't worry about math, that's what calculators are for!
JK

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@jodeej

@colleenyoung @hopeful33250 @rosemarya @contentandwell
Hi all! I have not fallen off the edge of the earth. lol Things have been chaotic at our house.

The fun stuff is that our son got married to his long time girlfriend that we just adore. It was a beautiful day at a beautiful location in Snow Canyon, Utah. A week of family and friends. I loved every minute of it.

My husband, Tim, was medically retired from his job due to his cognition issues. Therefore, I've been buried under many pages of paperwork and phone calls. We won't know the railroad retirement boards decision for 9-12 MONTHS. Until then, he will get disability pay.

Disability was a whole nother fiasco, as our new family doctor abruptly left the practice and we had to find a new one to fill out the needed paperwork. It is done, all is filed and it was approved after several weeks of no pay coming.

So, some days I am struggling to keep my head above water. Others I'm proud of myself for getting done what needed to be handled.

In a few weeks we will be at Mayo for Tim's one year checkup. It's hard to believe that it has been a year already. It has been very eventful!

Thanks for inquiring about me.
Many blessings,
JoDee

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@jodeej, I am happy to hear from you. You, your husband, and family have had really busy year since the transplant. I can easily imagine that the wedding was espcially beautiful, and all of you gathered together to celebrate life andlove.

When you get your head above water and feet on the ground, I hope that you will find some time to meet a whole new group of pretransplant patients and their caregivers.

Have you and Tim made any plans to celebtare yout 1st anniversary of his transplant? Tom and I like to go out for a 'special' dinner and we share an iced tea toast!

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@rosemarya

@jodeej, I am happy to hear from you. You, your husband, and family have had really busy year since the transplant. I can easily imagine that the wedding was espcially beautiful, and all of you gathered together to celebrate life andlove.

When you get your head above water and feet on the ground, I hope that you will find some time to meet a whole new group of pretransplant patients and their caregivers.

Have you and Tim made any plans to celebtare yout 1st anniversary of his transplant? Tom and I like to go out for a 'special' dinner and we share an iced tea toast!

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Hi @rosemarya We actually haven't talked about what to do to celebrate! Lol We are going to visit our son and our new daughter-in-law for a couple days before Tim's one year check at Mayo, so we will have to have an anniversary supper with them. 🙂

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@contentandwell

@jodeej I think if I went to yoga at my club a few times I could probably do it at home but I need that feedback initially. I am not a natural at all.
I am so happy about Tim's progress. Don't worry about math, that's what calculators are for!
JK

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@contentandwell I agree! Calculators and spell-check were made for our generation!

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@jodeej

Hi @rosemarya We actually haven't talked about what to do to celebrate! Lol We are going to visit our son and our new daughter-in-law for a couple days before Tim's one year check at Mayo, so we will have to have an anniversary supper with them. 🙂

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Jodee, that sounds like a perfect plan!

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This week's member spotlight shines a light on one of our active members on Connect and in the This and That and Talk – My Transplant
discussion. Get to know more about @2011panc in this Q&A.

Finding open, honest conversations with others: Meet @2011panc https://connect.mayoclinic.org/page/about-connect/newsfeed-post/finding-open-honest-conversations-with-others-meet-2011panc

If you'd like to read future Connect member spotlights on other members, you may subscribe (+Follow) the About Connect page https://connect.mayoclinic.org/page/about-connect/.

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If you are new on Connect or if you have been hesitant to jump into a discussion, I look forward to meeting you here. The title of this discussion is – "This and That and Talk" – So if you have something on your mind and don't know where to post it – This is it 😀

2019 is soon to become 2020. And the discussions here have been full of so many interesting transplant related happenings and ideas. It has been a while since I have heard from some of you. – @wildcat, @rodney9999,, @jolinda, @luckonetj, @ca426, @cmael, @gaylea1, @jodeej, @charicen, @jeanne5009, @gingerw, @2011panc, @contentandwell, @glinda, @danab, @threerrr3, @almula, @mnemeth318, @des46893, (Let me know if I skipped you, I apologize) )
How are you doing since you last posted here? What is going on in your transplant journey now? What do you look forward to in 2020?

I'll go first to get things started.
For those who don't know me, I received a simultaneous liver and kidney transplant in April 2009 due to Primary Sclerosing Cholangitis. This year I was blessed to celebrate my 10th year since my transplant. I am doing a happy dance because I had my final routine protocol kidney biopsy. I will have, hopefully some extra time during my next annual evaluation to do little sightseeing or shopping!!

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@rosemarya

If you are new on Connect or if you have been hesitant to jump into a discussion, I look forward to meeting you here. The title of this discussion is – "This and That and Talk" – So if you have something on your mind and don't know where to post it – This is it 😀

2019 is soon to become 2020. And the discussions here have been full of so many interesting transplant related happenings and ideas. It has been a while since I have heard from some of you. – @wildcat, @rodney9999,, @jolinda, @luckonetj, @ca426, @cmael, @gaylea1, @jodeej, @charicen, @jeanne5009, @gingerw, @2011panc, @contentandwell, @glinda, @danab, @threerrr3, @almula, @mnemeth318, @des46893, (Let me know if I skipped you, I apologize) )
How are you doing since you last posted here? What is going on in your transplant journey now? What do you look forward to in 2020?

I'll go first to get things started.
For those who don't know me, I received a simultaneous liver and kidney transplant in April 2009 due to Primary Sclerosing Cholangitis. This year I was blessed to celebrate my 10th year since my transplant. I am doing a happy dance because I had my final routine protocol kidney biopsy. I will have, hopefully some extra time during my next annual evaluation to do little sightseeing or shopping!!

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Hi Rosemary,
I am doing good I just graduated from physical therapy on Wednesday of this week and am working on getting rid of the cane that I use slow process but getting better and stronger every day next month I go to Rochester MN for my 9 year post transplant check-up and right heart cath and angiogram which I only have those every 2 years now and I am hoping to be able to do some traveling this coming summer to visit family I have been pretty well other then one time this year when I had to have antibiotics for a little over a month it took me having to go to Rochester MN in October to get me the right antibiotics to help me get better I had a severe UTI so when the other 2 antibiotics didn't work my team told me to come see them and the infectious disease doctor so glad I did as they diagnosed it and gave me the antibiotic to get rid of it I work out at the YMCA twice a week and walk as much as possible to keep going strength from the accident but it is and will still be a slow process of getting stronger again I would like to wish you a merry Christmas and happy New year
@glinda

REPLY
@rosemarya

If you are new on Connect or if you have been hesitant to jump into a discussion, I look forward to meeting you here. The title of this discussion is – "This and That and Talk" – So if you have something on your mind and don't know where to post it – This is it 😀

2019 is soon to become 2020. And the discussions here have been full of so many interesting transplant related happenings and ideas. It has been a while since I have heard from some of you. – @wildcat, @rodney9999,, @jolinda, @luckonetj, @ca426, @cmael, @gaylea1, @jodeej, @charicen, @jeanne5009, @gingerw, @2011panc, @contentandwell, @glinda, @danab, @threerrr3, @almula, @mnemeth318, @des46893, (Let me know if I skipped you, I apologize) )
How are you doing since you last posted here? What is going on in your transplant journey now? What do you look forward to in 2020?

I'll go first to get things started.
For those who don't know me, I received a simultaneous liver and kidney transplant in April 2009 due to Primary Sclerosing Cholangitis. This year I was blessed to celebrate my 10th year since my transplant. I am doing a happy dance because I had my final routine protocol kidney biopsy. I will have, hopefully some extra time during my next annual evaluation to do little sightseeing or shopping!!

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@rosemarya , I have had a moderately tough year. Next month will be the 9th anniversary of my pancreas transplant. This year I have been blacking out and falling, very weak and shaky, hospitalized for a workup on syncope, many UTI's, and many medication changes. So life is slow in my house and I am grateful for my good caregiver husband. My mother will be 96 next month and her age is wearing on her, so it is taxing on me to provide the amount of time and comfort for her that I would like. Fortunately she is well taken care of in her nursing home. As always, I do what I can and stop when I can't. Happy Holidays to everyone, and Best Wishes for a Good New Year.

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@glinda

Hi Rosemary,
I am doing good I just graduated from physical therapy on Wednesday of this week and am working on getting rid of the cane that I use slow process but getting better and stronger every day next month I go to Rochester MN for my 9 year post transplant check-up and right heart cath and angiogram which I only have those every 2 years now and I am hoping to be able to do some traveling this coming summer to visit family I have been pretty well other then one time this year when I had to have antibiotics for a little over a month it took me having to go to Rochester MN in October to get me the right antibiotics to help me get better I had a severe UTI so when the other 2 antibiotics didn't work my team told me to come see them and the infectious disease doctor so glad I did as they diagnosed it and gave me the antibiotic to get rid of it I work out at the YMCA twice a week and walk as much as possible to keep going strength from the accident but it is and will still be a slow process of getting stronger again I would like to wish you a merry Christmas and happy New year
@glinda

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@glinda, Congratulations on your graduation! This is a big achievement for you and I know that you must be happy beyond words! I bet your medical team is right next to you and cheering. Do you plan to go cane 'free" completely? That frightens me, especially since you are thinking about traveling.

Happy Christmas to you, too. Your New Year sounds like it is going to be a good one – 9 Years with your "new" heart is pretty exciting!

Glinda, How many days does a heart annual check-up last? Do you need to be hospitalized? Do you stay at Gift of Life?
Have you met @2011panc? She is also celebrating her 9th transplant anniversary next month!

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@2011panc

@rosemarya , I have had a moderately tough year. Next month will be the 9th anniversary of my pancreas transplant. This year I have been blacking out and falling, very weak and shaky, hospitalized for a workup on syncope, many UTI's, and many medication changes. So life is slow in my house and I am grateful for my good caregiver husband. My mother will be 96 next month and her age is wearing on her, so it is taxing on me to provide the amount of time and comfort for her that I would like. Fortunately she is well taken care of in her nursing home. As always, I do what I can and stop when I can't. Happy Holidays to everyone, and Best Wishes for a Good New Year.

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@2011panc, Congratulations on your upcoming 9 year transplant anniversary!
It sounds like you have had some awkward medical experiences. That must certainly slow you down, Does your mom live fairly close to you so that it is not too far for you to travel to be with her.
I remember, in your Spotlight Interview, that you said that you enjoyed your garden and your cats! How are your cats? Any new ones?

Have you met @glinda? You two share a 9 year transplant anniversary next month!

Happy Holidays to you, too.

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Merry Christmas and happy new year for all of you…I am back to my country after I spent 2 years in rochester for liver transplat…feeling ok and hoping to find good treatment here…God bless you all and best wishes for 2020…

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Congratulations, @almula, on being back to your own country for the holidays and most importantly for your successful liver transplant! Also, of course, a very happy 2020!
Will you post again and let the Connect community know when you find good follow up treatment?

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