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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.

gaylea1 | @gaylea1 | Dec 4, 2018
In reply to @rosemarya "jeanne5009, Gaylea has share in an earlier post that she is in Toronto Canada. I think..." + (show)
@rosemarya

jeanne5009, Gaylea has share in an earlier post that she is in Toronto Canada.
I think you will hear it from Gaylea herself after she has regained her strength and recovered.

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@jeanne5009 Hi there! Yes I'm from London Ontario. I just received the new liver and had my transplant here University Hospital Transplant Clinic.. needless to say I am ecstatic!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 4, 2018
In reply to @gaylea1 "@colleenyoung believe me I felt the love and support. You have all helped me so much..." + (show)
@gaylea1

@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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So great to hear from you already, @gaylea1. We look forward to all your questions and to your sharing your experiences.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @mickj "@rosemarya I do see a nephrologist, but going forward, provided things don't go backwards, I'll only..." + (show)
@mickj

@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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Mickj, I also experienced anemia after my transplant. My doctors had me on an iron pill, I don't remember if it was prescription or over counter. I also don't remember how long I needed it, but for me it was temporary condition.
It is great to hear how good you feel (better than ever). That is a fantastic feeling - I do remember that! I am proud of you for how well you are taking care of yourself. I have also learned to listen to my body because it tells me if I need to slow down, or to rest, or to call the doctor.

Here is something you might find useful as we go into the flu and cold season.
Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/
What has been the best part of your new life, so far?

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 4, 2018
In reply to @gaylea1 "@contentandwell I am feeling great! Ecstatic to finally got "my new liver. Good riddance lactulose and..." + (show)
@gaylea1

@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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Hi gaylea, I can feel your excitement as if I am right there with you. It is so great to hear from you. You sound great. I am looking forward to hearing more about your experience as you continue your recovery.

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JK | @contentandwell | Dec 5, 2018
In reply to @mickj "@contentandwell That's a good question. Prior to transplant, I was on a fluid restriction to some..." + (show)
@mickj

@contentandwell That's a good question. Prior to transplant, I was on a fluid restriction to some extent. So after transplant, I asked my team if those rules still applied. They said absolutely no. Based on that, and the fact that all doctors will tell you to drink a minimum of 2 liters per day, I thought more would be better. And I've not read anything to tell me differently. So I thought why not double that number. My nephrologist was on board with it as well.

I do the same thing with exercise. It's recommended to exercise 150 minutes/week, so I figured I would double that as well. And everything I've read, provided I'm healthy enough to do it, it will do nothing but help me. I take the same approach with nutrition.

I don't have an easy time with this. But at the end of the day, I've gone through too much, put my family through too much, to not give my body the best chance I can do be healthy, controlling the things I can control. There's no doubt that at some point in the future, I'll get sick or have rejection, but it won't have anything to do with how I treat my body.

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@mickj it sounds like you are doing all the right things. I too am going well beyond exercise recommendations, but I must admit I have some trouble getting all of that water into myself. I do it though. The last thing I want is to have kidney problems now, after all I have gone through.
Nutrition is my downfall. I am pretty much on track right now, and I do eat very healthily, but I often eat more than I should.
JK

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1 reply
JK | @contentandwell | Dec 5, 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 Having a living donor allows you to put off packing. I had my bag all ready months before, "just in case". The thing I did forget to pack was a chapstick but they gave me one in the hospital. I didn't bother to bring makeup, and I barely washed my face some days.
I would not bring anything expensive. In a hospital admission prior to my transplant they sent me for an endoscopy. I had brand new Ugg slippers on. When I got back to my room I no longer had them on and they were never to be seen again.

I think most of us do enjoy the little things, no need to apologize for that. I am sure everything will go well. When you feel up to it I hope you let us know how you are doing.

I planned to bring a notebook with me to journal everything and it somehow did not get packed. I really regret that because a lot was a blur to me due to being on medications. Actually I wish I had started one when I first got sick, but as they say, "hindsight is 20/20".
JK

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JK | @contentandwell | Dec 5, 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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@gingerw We too dropped everything when I got the call. I wanted to take a shower, I hadn't taken one yet that day, but they said no, to get right there. We got there in mid-afternoon but the transplant did not occur until 12:30 A.M.!
JK

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JK | @contentandwell | Dec 5, 2018
In reply to @gaylea1 "@contentandwell I am feeling great! Ecstatic to finally got "my new liver. Good riddance lactulose and..." + (show)
@gaylea1

@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 I am so happy for you, this is wonderful news. Yep, good riddance to lactulose. When I was feeling any pain in the hospital post transplant my husband would say "remember, no more lactulose!". I didn't mind the xifaxan, except for the cost.
At my transplant center they suggested not writing to the donor family immediately, when their grief was still so raw, so I waited about 3 or 4 months. Almost a year later I did get a response from them telling me quite a bit about their daughter, my donor. It was very moving for me because initially my daughter wanted to be my donor but it turned out that she could not be. The young woman who was my donor had so much in common with my daughter that it was striking -- same name, same age, and same size, and same general profession! I just cannot even think about losing my daughter so the similarities gave me an even greater realization of their grief which I am conscious of daily.
JK

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mickj | @mickj | Dec 5, 2018
In reply to @contentandwell "@mickj it sounds like you are doing all the right things. I too am going well..." + (show)
@contentandwell

@mickj it sounds like you are doing all the right things. I too am going well beyond exercise recommendations, but I must admit I have some trouble getting all of that water into myself. I do it though. The last thing I want is to have kidney problems now, after all I have gone through.
Nutrition is my downfall. I am pretty much on track right now, and I do eat very healthily, but I often eat more than I should.
JK

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@contentandwell It's great to hear from others who are taking their new life seriously, doing what they can to help themselves. With the eating thing, for one reason or another, I'm never hungry. I actually have to set alarms (just like for meds) to remind me to eat. It's probably a combination of the meds and what I eat. And it's a bit of an issue, as I can't stop losing weight. I'm a 53 year old male who is a little over 6 feet tall. My first weight when I got home from transplant 5 months ago was 226. This morning, it was 160. I'm working on adding food, but just like drinking lots of water, it's not easy. Oh the problems I have, right?

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