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?

@almula

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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@almula, Home Sweet Home ! Those are be beautiful and powerful words, and they are even more meaningful after a transplant. I
wish you a very healthy future. I want to add my Congratulations on receiving your transplant and on your continuing recovery.

@almula, I spent 11 weeks in Rochester, away from my home (800 miles) when I got my transplant. I was excited to get to go home, and I was also apprehensive at the thought of being away from my Rochester medical team. I will always remember the parting words of my care team, "Drive safely and don't forget that we are just a phone call away". I have used the phone and the patient portal on many occasions and I encourage you to do that, too. I hope that you will soon connect with a doctor who will cooperate with Mayo transplant dept.

Remember that Connect is always available. Although you are miles away, you are never alone. Both me and our many members are eager to support you as you adjust to life with your new organ. What can we do to help you and/or your caregiver?

May you continue to experience more blessings in the new year and beyond. God bless.

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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

Christmas Greetings from Scotland! It was kind of you to think of me. As I begin my sixth year post transplant I can honestly say that I have never felt better. Apart from leg cramps sometimes, i have no side effects whatsoever and I live a full and happy life Thanks to all the help and advice I received from fellow Connect members, I have no concerns about the impending changes to my meds as Scotland moves all its transplant patients from Prograf to the generic Adaport. Even more importantly, it will save our Nationalsalth Service hundreds of thousands of pounds which have been ring fenced to go straight back to transplant services.

Wishing you all a very Happy Christmas and health and happiness in the New Year. I add a very special thanks to all those families who have allowed transplants to go ahead after the death of a loved one; we owe you our lives and you have our eternal gratitude.

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I don't know what happened to my post a couple of days ago. Oh well let me try again. Ive been doing well except for ongoing viruses that put me in the Hospital in June for 5 weeks. The bug was giving the doctors a run a round causing feavor and low blood counts. They finally found it thru a lung rinse and had the fluid tested. I went thru testing of every part of my body trying to find it. All yhe while having cdif on top of it. What a month but we got it licked so now i get 2 monthy treatments to keep it from coming back. IVIG for the Parvovirus affecting my blood and a Paramentine inhaltion treatment for the lung infection. But my blood counts have come back up to my normal and im working out again. 2.5-3 mile walk and 15 minutes of weights about 5 days a week. Next month is my 2 year anniversary so jan 21 2020 back to Mayo for my yearly checkup. I don't think there will be any thing to worry about. Also to try and help my immune system im only taking Tacrolimus 1.5 and 1 mg per day so they did another biopsy in November and it was negative Praise God. So that's about it for my update. I hope everyone has a Very Merry Christmas and a Happy New year.

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Hope you are well and happy. merry Christmas and nappy new year..

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@almula

Hope you are well and happy. merry Christmas and nappy new year..

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@almula, On behalf of all transplant patients, I want to thank you for the happy Holiday message. I feel a real bond to other patients due to my own experience, and I have spoken to others who have shared a similar sentiment.

I don't know if your message was intended to anyone particular member. If you want to address a reply to a particular member you can include their @member and they will get a notification that you have mentioned them.

Here is a link that will provide some guidance. (And while you are in the Transplant Pages, I encourage you to scroll thru the Newsfeed which is updated regularly. You can comment there just like you can in any of the Mayo Connect Discussions)
Pages>About Connect: Who, What & Why>Replies and @mentions: How do I know who is replying to whom?
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
As a volunteer mentor/transplant recipient, I make it my priority to scan messages regularly. I hope you are having a good day.
How long ago did you get the transplant?

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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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@rosemarya Merry Christmas and Happy Holidays to all! Tim is doing well post transplant. His one year checkup in July showed his liver is doing great. Unfortunately, in October he was diagnosed with early onset Alzheimers. He is in the early stages so he is able to be home alone and can still drive.
2020 will bring many changes with this new journey we are on. I am very thankful for our family and friends.
Many blessings to all of you,
JoDee

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Had transplant in August. Had my 4 month evaluation. They found Hectic artery stenosis. They went in to put in stent. But artery was kinked. Now they have cut me back open to find the artery and replace with donor artery. Is this common? Seems like I am starting all over. Surgery scheduled for Thursday.

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@livertrex

Had transplant in August. Had my 4 month evaluation. They found Hectic artery stenosis. They went in to put in stent. But artery was kinked. Now they have cut me back open to find the artery and replace with donor artery. Is this common? Seems like I am starting all over. Surgery scheduled for Thursday.

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I had four ERCPs to place a stent about 3 months after transplant. Each time I contracted pancreatitis and the pain was horrendous! I had a pain management team to administer pain killers. I was on everything! Set back my recovery by at least 6 months. My transplant was last November. I pray yours goes well the first time.

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@gaylea1

I had four ERCPs to place a stent about 3 months after transplant. Each time I contracted pancreatitis and the pain was horrendous! I had a pain management team to administer pain killers. I was on everything! Set back my recovery by at least 6 months. My transplant was last November. I pray yours goes well the first time.

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What are ercp's

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In reply to @livertrex "What are ercp's" + (show)
@livertrex

What are ercp's

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Endoscopic retrograde cholangiopancreatography procedures.= a technique that combines the use of endoscopy and fluroscopy to diagnose and treat certain problems of the biliary or pancreatic ductal systems.

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@rosemarya

@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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2rosemarya Thank you for your response. My mother is about 1/2 hour away, so it is not too bad to get to see her. It is tougher now because the weather and roads are unreliable; as well as my strength and stamina. I still enjoy watching my yard. This morning the bare trees were glistening silver with frost. I like watching the snow cover for footprints of birds and animals. We only have one cat, but she has gotten very snuggly and almost always lays with me when I have down time. We have always tried to have only one cat at a time. We feel that if you don't get them at the same time it is rather unfair for them to have to deal with the alpha/territory/personal space issues.

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@livertrex

Had transplant in August. Had my 4 month evaluation. They found Hectic artery stenosis. They went in to put in stent. But artery was kinked. Now they have cut me back open to find the artery and replace with donor artery. Is this common? Seems like I am starting all over. Surgery scheduled for Thursday.

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@livertrex, Surgery tomorrow? I send my thoughts to you as you prepare to undergo this procedure.
I had a blocked bile duct after my 1st year, and I required surgery. It was nothing like the transplant surgery, and I quickly returned to my normal activities.
I will be checking my messages during the holidays. I want to hear how the surgery goes for you.

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@rosemarya

@livertrex, Surgery tomorrow? I send my thoughts to you as you prepare to undergo this procedure.
I had a blocked bile duct after my 1st year, and I required surgery. It was nothing like the transplant surgery, and I quickly returned to my normal activities.
I will be checking my messages during the holidays. I want to hear how the surgery goes for you.

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Hi Rosemary,

Thank you for checking in. Happy Holidays to All.

I am currently 8 months post transplant and have had smooth sailing so far. I received a year supply of sunscreen for a holiday gift so I couldn’t be happier 🙂

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@rosemarya

@livertrex, Surgery tomorrow? I send my thoughts to you as you prepare to undergo this procedure.
I had a blocked bile duct after my 1st year, and I required surgery. It was nothing like the transplant surgery, and I quickly returned to my normal activities.
I will be checking my messages during the holidays. I want to hear how the surgery goes for you.

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This is the main heptic artery into the liver. I am at Mayo in AZ. After
going in through my artery through the groin into my liver they determined
that the only way to repair was to open me back up and cut the artery again
and replace with a donor artery. Bummer. I can't find any information on
the net, and if this is a common surgery. I guess it the only option. I
was just trying to find out if anyone has had a similar problem with their
heptic artery.

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@rosemarya

@livertrex, Surgery tomorrow? I send my thoughts to you as you prepare to undergo this procedure.
I had a blocked bile duct after my 1st year, and I required surgery. It was nothing like the transplant surgery, and I quickly returned to my normal activities.
I will be checking my messages during the holidays. I want to hear how the surgery goes for you.

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I will let you know. Merry. 🎄 Christmas

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