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This and That and Talk - My Transplant
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?
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Didn't know your name, so I picked missing in action. Haha.
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2 Reactions@davidgenebarnes, Hi Dave.
When you want to address your message to a particular individual, you can copy and paste - highlight the person’s @username and copy in your reply. This assures that he/she will be notified.
Another nice thing to know is that if you reply by using the view/reply on your email notification then the reply goes right under the item that you are replying to.
@amynewheart, I want to be sure that you see Dave's message to you.
Hugs and hope to both of you,
Rosemary
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2 ReactionsMy name is Amy. I had heart transplant 07/2015. Have been dealing with recurrent rejection since 04/ 2017 🙁
@amynewheart, You need not apologize. But we did miss you here.
I was concerned about you because you had mentioned that you were having some rejection episodes. Can I ask what occurred that put you in the hospital because you were dealing with this since April, I believe. Are you still on the high levels of antirejection meds?
That must have been frightening for you and loved ones. Are you near your transplant hospital?
I really wanted to say Happy Transplantiversary to you on the 17th. I'll say it now, "Happy Belated Transplant Anniversary".
Rosemary
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3 Reactions@amynewheart - So sorry to hear about your recent setback. Are you doing fine now that you are home? Do they expect this rejection issue to continue or is it resolved. Hang in there and keep advocating for yourself!
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2 Reactions@amynewheart Amy, I hope your rejection issue has been resolved and that you are doing well.
JK
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3 Reactions@rosemarya thank you. I had went in for a repeat biopsy after my last one showed rejection and they treated it. I had to be hospitalized for another round of IV steroids plus 5 day treatment of atgam which completely wipes out your tcells. I am home now with another increase in my prednisone 🙁 . I am scheduled for another biopsy next week
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1 Reaction@lcamino I am home now but completely wiped out. Hoping it is just from the massive doses of meds in hospital. We are hoping this did the trick but unfortunately my doctors are baffled at this point. Repeat biopsy next week will hopefully bring good news
@amynewheart - so sorry to hear about this. I can't relate but when my Dad was often hospitalized he was told it takes one week to recover from one week in the hospital. I know your sleep is always interrupted, not in your bed, and clearly quite sick. Plus, if you are dealing with rejection does that mean your heart is not functioning to its' full potential? If so, that would explain your exhaustion!
Are they taking biopsies of your heart? How invasive are the biopsies? Considering a second opinion if they don't get any answers? Hoping this gets resolved and be kind to yourself and give yourself time to recover.
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1 Reaction@amynewheart, I'm saying prayers for you and for your doctors. Rosemary
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