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Mentor

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?

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 4, 2018
In reply to @taarthi "@rosemarya I am amazed at how awesome you are that you remember everyone so well and..." + (show)
@taarthi

@rosemarya I am amazed at how awesome you are that you remember everyone so well and truly connect with them. What a kind person you are!

I have not started packing yet. I plan to do that the weekend of December 15 as we would leave home on December 18. We did buy loose fitting sweat pants and shirts, comfortable slip on shoes, pillow. So it is just a matter of putting them in a bag. I am planning to pack my make up kit, personal hygiene items, chapstick, socks. My husband gifted me a new laptop and a wireless headset that I need to pack too. I don't mean to sound braggy but little things make me happy. Someone at my workplace told me to enjoy the 8 weeks off of work and I said I will! I am hoping that everything goes well. Let us see.

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@taarthi Receiving a kidney either via living donor or cadaver donor has its pluses and minuses in preparation. In your case, you can attend to household things knowing you have a set date and chance to pack what you need. Nohing wrong in taking those afternoon naps! My husband had a cadaver donor and the call was "come immediately"; the transplant center was almost 2 hrs away. He dropped everything including leaving dishes in the sink and everything else in the house pretty messy as he scrambled around to get his medications packed. In fact, he never even took a change of clothes! [We were barely starting to date at that point] You know that all of us here are wish you nothing but the best for you and your husband in your upcoming joint adventure and adventure it will be. We look forward to hearing from you.
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @taarthi "@rosemarya I am amazed at how awesome you are that you remember everyone so well and..." + (show)
@taarthi

@rosemarya I am amazed at how awesome you are that you remember everyone so well and truly connect with them. What a kind person you are!

I have not started packing yet. I plan to do that the weekend of December 15 as we would leave home on December 18. We did buy loose fitting sweat pants and shirts, comfortable slip on shoes, pillow. So it is just a matter of putting them in a bag. I am planning to pack my make up kit, personal hygiene items, chapstick, socks. My husband gifted me a new laptop and a wireless headset that I need to pack too. I don't mean to sound braggy but little things make me happy. Someone at my workplace told me to enjoy the 8 weeks off of work and I said I will! I am hoping that everything goes well. Let us see.

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Taarthi, You are very kind for saying such a sweet thing. I remember how frightened I was before my own transplant, so I try to support and to remember important events that members share on Connect. I think having transplant surgery is a very important event! I am just a mom, a grandma, a transplant recipient who cares.
Here is an interview that gives you a brief glimpse of who I am and my reason for participating on Mayo Connect as a member/mentor.
https://connect.mayoclinic.org/page/about-connect/newsfeed/a-passion-for-transplant-patients-meet-rosemarya-1

You have a great packing list! I am confident that you will be ready to stash the suitcase in the car and be on the road as planned.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @gingerw "@taarthi Receiving a kidney either via living donor or cadaver donor has its pluses and minuses..." + (show)
@gingerw

@taarthi Receiving a kidney either via living donor or cadaver donor has its pluses and minuses in preparation. In your case, you can attend to household things knowing you have a set date and chance to pack what you need. Nohing wrong in taking those afternoon naps! My husband had a cadaver donor and the call was "come immediately"; the transplant center was almost 2 hrs away. He dropped everything including leaving dishes in the sink and everything else in the house pretty messy as he scrambled around to get his medications packed. In fact, he never even took a change of clothes! [We were barely starting to date at that point] You know that all of us here are wish you nothing but the best for you and your husband in your upcoming joint adventure and adventure it will be. We look forward to hearing from you.
Ginger

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That is a beautiful story, ginger! How long ago was his transplant? And when did you get married?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @mickj "Hey @contentandwell I recently had a liver transplant (5 months ago). Pre-transplant, we talked about doing..." + (show)
@mickj

Hey @contentandwell I recently had a liver transplant (5 months ago). Pre-transplant, we talked about doing liver+kidney, but we opted not to go that route. My kidneys were not horrible, but not very good either (creatinine 1.7, GFR 45). Post transplant, my transplant team never said anything about bumping up liquids. They also said nothing about limiting liquids.

My kidney function has improved post-transplant, but it's still nothing to phone home about (creatinine 1.3-1.4, GFR 55-65). Certainly Tacrolimus isn't helping. But I'm only taking .5mg 2x per day, and the tacrolimus level in my body is in the 3-5 range. So any effect that it's having on my body is not going to lessen. I figure I better do everything I can to help out my kidneys. And lots of water (4-5 liters/day) is a big part of that. At least that's the way this armchair doctor sees it.

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Hi, mickj. I have a liver and kidney transplant. My kidneys were completely gone, and I was on dialysis, so I needed to get both organs. Since I have 2 organs, I have 2 departments who work together to monitor my numbers. Since you are concerned about your kidneys, do you see a nephrologist for your kidney care?

How is your liver transplant surgery recovery coming ? How do you feel?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @cmael "I was told to drink three liters a day and that other clear decaffinated liquids, without..." + (show)
@cmael

I was told to drink three liters a day and that other clear decaffinated liquids, without sugar count too. After transplant my kids were pushing me to drink more water and I gained 18 lbs in water weight. Then the nephrologist told me to only drink when I was thirsty. I was given a diuretic, and my weight and swelling went down. Now I’m on three liters a day plus tea.

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cmael, I cannot even imagine you with 18 extra lbs. I bet you feel better with less water on you! You have wonderful daughters! They want you to do well:-)

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 4, 2018
In reply to @rosemarya "That is a beautiful story, ginger! How long ago was his transplant? And when did you..." + (show)
@rosemarya

That is a beautiful story, ginger! How long ago was his transplant? And when did you get married?

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@rosemarya My husband had his transplant 1 Oct 2016, at Scripps Green Hospital in La Jolla (CA). At the time I was living about 100 miles north of him. But as a member of his care team, his daughter being the other one, I drove 4 hrs on Thursdays, and returning to my place on Mondays another 4 hrs during that first month. That continued the next two months, but I only had that 100 miles each way then [seemed like a piece of cake!] When he came home to his place. We have both told people because there was that consolidated time together, our relationship had a pretty solid foundation. We were married April this year.
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @gingerw "@rosemarya My husband had his transplant 1 Oct 2016, at Scripps Green Hospital in La Jolla..." + (show)
@gingerw

@rosemarya My husband had his transplant 1 Oct 2016, at Scripps Green Hospital in La Jolla (CA). At the time I was living about 100 miles north of him. But as a member of his care team, his daughter being the other one, I drove 4 hrs on Thursdays, and returning to my place on Mondays another 4 hrs during that first month. That continued the next two months, but I only had that 100 miles each way then [seemed like a piece of cake!] When he came home to his place. We have both told people because there was that consolidated time together, our relationship had a pretty solid foundation. We were married April this year.
Ginger

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Ginger, That is beautiful!
Absolutely beautiful.

I thank you for sharing and I’m glad that I asked.
I wish you and your husband many years of happiness together.

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mickj | @mickj | Dec 4, 2018
In reply to @rosemarya "Hi, mickj. I have a liver and kidney transplant. My kidneys were completely gone, and I..." + (show)
@rosemarya

Hi, mickj. I have a liver and kidney transplant. My kidneys were completely gone, and I was on dialysis, so I needed to get both organs. Since I have 2 organs, I have 2 departments who work together to monitor my numbers. Since you are concerned about your kidneys, do you see a nephrologist for your kidney care?

How is your liver transplant surgery recovery coming ? How do you feel?

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@rosemarya I do see a nephrologist, but going forward, provided things don't go backwards, I'll only see him once a year or so. My transplant recovery has gone really well. My only issue is a bit of anemia. Hopefully it goes away with the recent reduction in mycophenolate. 5 months out, I can't recall ever feeling better. But then again, I've never treated my body as well as I do now (diet, exercise, fluids and sleep). Thanks for asking.

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1 reply
gaylea1 | @gaylea1 | Dec 4, 2018
In reply to @contentandwell "@gaylea1 let us know how you are feeling when you are up to it. Thoughts and..." + (show)
@contentandwell

@gaylea1 let us know how you are feeling when you are up to it. Thoughts and prayers are with you.
JK

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@contentandwell I am feeling great! Ecstatic to finally got "my new liver. Good riddance lactulose and rifaximin! Goodbye jaundice...i have blue eyes!
8+hours surgery but was completed and executed perfectly. Already looking forward to living again....honestly I am so overcomes with gratitude to my donor and family. I am hoping they will accept a letter from me. I don't expect them to respond at this tender time if loss. They did a wonderful thing that has changed many lives. It was worth the wait.

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gaylea1 | @gaylea1 | Dec 4, 2018
In reply to @colleenyoung "@gaylea1 This is fabulous news. We will all be thinking of you. Especially at 5pm today...." + (show)
@colleenyoung

@gaylea1 This is fabulous news. We will all be thinking of you. Especially at 5pm today. I doubt you'll notice it but there will be a bunch of people from this group squeezing your hand virtually as you get rolled in and also by your side when you wake up.

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@colleenyoung believe me I felt the love and support. You have all helped me so much in this journey. I will always be here to ask post operative questions as everything will be so new.

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