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.

@buckeyegurl

@rosemarya , I just wanted to let you know I finally got rid of my bi VADs and was blessed to get my heart transplant! December 14, 2018! I am so happy and can’t wait to start living the next chapter in my life!

Jump to this post

Congratulations on our new heart I am a heart transplant myself going on 7 years the 20th of this month if you have qestions or just would like to talk please feel free to talk to me you can call me glinda I am on connect also. I go by @glinda or @tbird munchkin hope your recovery is quick
Glinda

REPLY
@buckeyegurl

@rosemarya , I just wanted to let you know I finally got rid of my bi VADs and was blessed to get my heart transplant! December 14, 2018! I am so happy and can’t wait to start living the next chapter in my life!

Jump to this post

@buckeyegurl, God bless you, your donor and donor's family, your surgeons, your family, and all who have been with you on this journey!

Thank you for sharing this good news with us. We all celebrate with you as you are NOW living the new chapter of your life! I know that you intended to post December, 14, 2017:-)
Rosemary

REPLY
@buckeyegurl

@rosemarya , I just wanted to let you know I finally got rid of my bi VADs and was blessed to get my heart transplant! December 14, 2018! I am so happy and can’t wait to start living the next chapter in my life!

Jump to this post

@glinda, Thank you, for your response. As a heart transplant recipient, you are the perfect person to know what another heart transplant recipient experiences.
Rosemary

REPLY
@buckeyegurl

@rosemarya , I just wanted to let you know I finally got rid of my bi VADs and was blessed to get my heart transplant! December 14, 2018! I am so happy and can’t wait to start living the next chapter in my life!

Jump to this post

@buckeyegurl, I want to echo what @glinda said about your successful recovery. Take your time to rest and recover. I don't know about the full recovery process for heart transplant, so I'm happy that you have already met Glinda.
I encourage you to take all the time you need. When you are feeling up to it, we would love to hear from you.
Gentle hugs,
Rosemary

REPLY
@buckeyegurl

@rosemarya , I just wanted to let you know I finally got rid of my bi VADs and was blessed to get my heart transplant! December 14, 2018! I am so happy and can’t wait to start living the next chapter in my life!

Jump to this post

Your so welcome I always like to help and I found that my niece had alot of questions for me 2 and a half years ago when my baby sister was going thru her heart transplant and she kept asking me questions on recovery and prcedures or any questions concerning my niece I answered so if I can help I'm glad to
Glinda

REPLY

@glinda and @rosemarya

While I've never had a transplant (and have never been told that I might need one) I still love to read the Transplant discussion posts. You are all so enthusiastic and encouraging. You are just a great group of folks! Teresa

REPLY
@buckeyegurl

@rosemarya , I just wanted to let you know I finally got rid of my bi VADs and was blessed to get my heart transplant! December 14, 2018! I am so happy and can’t wait to start living the next chapter in my life!

Jump to this post

This is absolutely marvelous news, @buckeyegurl! All you need to do now is think positive, take it one day at a time, and enjoy the journey. We wish you all success.

REPLY
@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

Jump to this post

@contentandwell, Good question! I can only answer that from what I have experienced.

My instructions say to call about 12 weeks in advance to set up my appointment. And there is a protocol list for tests scheduled yearly, every 2 years, 3 years, etc. As a liver/kidney recipient, I feel sure that I have some things that a 'normal' liver recipient doesn't have.
Here is what I remember having: blood draw, urine test, 24 hour urine collection, renal clearance with dye, abdominal ultrasound, echocardiogram, chest x-ray, liver transplant nurse, records update, kidney transplant nurse / medical records review, records update, dermatology, sometimes bone density scan, and annual check by liver, then kidney doctor.(I get my mammogram and pap and colonoscopy done at home), sometimes BP nurse. I also get a kidney biopsy on certain years. Additional tests can be added if there is something that comes up during the visit. And any vaccine updates are scheduled, ie pneumonia, tetanus. I know there are protocol tests, and there are individualized tests depending on each person's needs.

Jane, I think that you are in a good place for your post transplant care. It sounds to me like you are being well monitored:-)
Rosemary

REPLY
@mauraacro

Hi, I'm brand new here and technologically challenged so feel free to point me in the right direction if I've posted in the wrong place or if there is a better place for me to learn about my upcoming surgery.
I will be donating a kidney January 12th. I'm excited and nervous. Is there someone here that has donated or knows someone who has? I know what Mayo has told me to expect but was hoping to hear from a real person. Thank you!

Jump to this post

@rosemarya thanks for the information. As I look at your list I realize that many of these tests would be considered by the transplant department to fall outside of their realm. As I mentioned, they are loathe to step on the toes of other doctors a patient has, like the PCP. They will always monitor me for the possibility of malignancies but they leave it to the PCPs, endocronologists and whomever else to monitor other things not directly connected to transplant, like bone density, pap, colonoscopy. I do have a gastro at MGH who does my colonoscopies and endoscopies so they are in close communication. Different transplant centers just operate differently. Another thing that seems to be different at MGH is that prior to transplant you are a patient of a hepatologist. After transplant you no longer are involved with that doctor, the transplant team takes over.
JK

REPLY

We often do not really know how other people view us. Today I attended a baby shower and saw a woman I have not seen for probably 6 years. We were both visiting with everybody for a while before she caught me alone and asked who I was. She then admitted that she did not recognize me at first because I looked so much better and healthier. What a great feeling! I feel like I struggle everyday now and really work to keep my attitude up, but she saw a new and healthier person. I count that as a big Gold Star and Blue Ribbon Day! My calendar is marked! I pray for everyone of us to experience a similar event. it really made my day.

REPLY
Please sign in or register to post a reply.