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linda59
@linda59

Posts: 24
Joined: Mar 23, 2016

Life expectancy after heart transplant for GCM

Posted by @linda59, Mar 23, 2016

Hello there, I’m new to the site. Can you help? I’d like to know “what’s the longest time a GCM heart transplant patient has lived for, post op? I know each case is unique.. Etc etc but I really would appreciate an answer to this question. Thank you.

REPLY

Hi again Linda,
I can only imagine how you ache to have an answer to this question. I unfortunately don’t have it. But I encourage you to check out the Myocarditis Foundation’s website http://www.myocarditisfoundation.org/ They have great information, a blog and a forum. I hope you can connect with others in a similar situation and get some answers.

@colleenyoung

Hi again Linda,
I can only imagine how you ache to have an answer to this question. I unfortunately don’t have it. But I encourage you to check out the Myocarditis Foundation’s website http://www.myocarditisfoundation.org/ They have great information, a blog and a forum. I hope you can connect with others in a similar situation and get some answers.

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Thanks Colleen I will do. I know it a ‘hard’ question but I need more reassurance…
I will keep searching.

Very best wishes
Linda

As a mother, I totally understand. I hope the Foundation can help answer some of these questions. They certainly have many stories of hope. Please let us know what you find out.

@colleenyoung

As a mother, I totally understand. I hope the Foundation can help answer some of these questions. They certainly have many stories of hope. Please let us know what you find out.

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Thanks Colleen. It’s not made any easier by him trying not to worry me! And me doing the same! Lol!!
It would be Soo funny if it wasn’t Soo terrifying!! XL

I recognize that dance. It can be really helpful to talk about the elephant in the room together. Often people resist sharing their biggest fears and concerns with each other because it will make the worst come true or one doesn’t want to destroy hope that they other person may have. However, I have found that frank conversations about fears can help rebuild hope together.

Are you and your son able to talk openly about your fears?

@colleenyoung

I recognize that dance. It can be really helpful to talk about the elephant in the room together. Often people resist sharing their biggest fears and concerns with each other because it will make the worst come true or one doesn’t want to destroy hope that they other person may have. However, I have found that frank conversations about fears can help rebuild hope together.

Are you and your son able to talk openly about your fears?

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I am but it’s more difficult for him. I previously worked as a Counsellor/Therapist which sometimes does/doesn’t help! He has a big dose of denial coupled with great strength.

My need is to decide whether we should relocate near to where he is… Whilst respecting his life and needs. We spend a lot of time ‘visiting’ over one/two nights which is not quality time or cost effective. I’d hate to live with regrets!
We have 5 years to retirement but we could move sooner if time was/is of the essence? It’s difficult to know what to do but proving costly in more ways that one- financially, emotionally, health, lifestyle… Etc etc

@colleenyoung

I recognize that dance. It can be really helpful to talk about the elephant in the room together. Often people resist sharing their biggest fears and concerns with each other because it will make the worst come true or one doesn’t want to destroy hope that they other person may have. However, I have found that frank conversations about fears can help rebuild hope together.

Are you and your son able to talk openly about your fears?

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Thank you for connecting with me today Colleen.I’ve really appreciated not being on my own with this today. It has been especially difficult as our son has just got back from a short break whilst not being well. He’s had a virus/bug (cold/sinus issues) for over a month and is dragging his heels getting to the docs. I’m convinced he’d be better going to the transplant clinic and get checked out thoroughly but it’s the last place he wants to visit!

I’ve shared my concern/fears so the ball is in his court, so to speak….

Thx again. L

It’s clearer to me why understanding a “timeline” has added significance from a practical stand point as well as the emotional. So many considerations. Sometimes I wonder about the framing of denial. I often thought my Dad was in denial of his reality, but looking back now I feel he was just living to the fullest with the time he knew he had. I like that you identify both sides of the same coin and call the other side great strength.

I’m glad that I could journey with you today. Thanks for allowing me in.

Hi Linda, I am replying as a mother, and as a transplant (liver/kidney) recipient. While I do not have any experience with your son’s condition or heart transplant, I hope that I might be able to share some insight gained by my experience.
I understand the need to search and search for statistics etc. I do the same thing. But, as I made my self accept early on – those are numbers, not people. It sounds like you already know that. I hope that you can connect with some one in similar situation as Colleen suggests. Rosemary

As far as moving; is there someone near/with your son to provide support and care if needed. And is he comfortable with that level of support? It sounds like you are in a situation where a move is possible, if necessary. How does he feel about it?
My personal experience is that when I catch a cold, get a sprain, sinus,etc. is that I take longer to get better. Sometimes a ‘routine’ ER visit leads to an overnight hospital stay as a precaution. And I have had to insist that my sons not visit me as they did when I was seriously ill. Some of my trxp friends have agreed that we want to be treated like normal people and not hovered over. But at the same time we need to be proactive with our health. …this is from a 60+ mom to a mom. Please know that I wish the best for your son, now and for years to come.

Hey Linda,
I’m so glad that you connected with @bsox1901 on the other thread about heart transplants http://mayocl.in/25V51OF. So glad to hear that the latest round of treatment with chemo has helped and given you all time to breathe.

I wanted to revisit this conversation and ask you about your thoughts on when to move closer to your son. Any new thoughts on this?

@colleenyoung

Hey Linda,
I’m so glad that you connected with @bsox1901 on the other thread about heart transplants http://mayocl.in/25V51OF. So glad to hear that the latest round of treatment with chemo has helped and given you all time to breathe.

I wanted to revisit this conversation and ask you about your thoughts on when to move closer to your son. Any new thoughts on this?

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Hi Colleen,
How wonderful to hear from you. It seems a lifetime ago now!
The sad thing is all those months of worrying and little did we realise he was and is truly well. Hindsight is difficult…. Had we known we wouldn’t have worried so!!

Ironically it has been a very recent holiday that has enabled a more healthy relationship with our son. The physical and emotional distance has created space for all of us to be closer, in a different way! We had a lovely holiday for the first time, in three years, that didn’t include constant obsessing about his well being!
We simply needed to ‘get back into our own lives’! Still living ‘mindfully’ in the moment.

It has been amazing and awe inspiring hearing from others instead of feeling so alone!

I thank you from the bottom of my heart. We can survive the worst of things when we are not alone!

Blessings to all
Linda

Ps our son has just become a warden manager of two beautiful estates in the country.. One is an ancient woodland and another a wetland. This is after marrying his sweetheart and settling in their new home. He now cycles to work 15 miles a day, 4times a week and loves every moment of his day and life. I simply cannot express the joy we all feel celebrating his ‘new life’!! XxL

@colleenyoung

Hey Linda,
I’m so glad that you connected with @bsox1901 on the other thread about heart transplants http://mayocl.in/25V51OF. So glad to hear that the latest round of treatment with chemo has helped and given you all time to breathe.

I wanted to revisit this conversation and ask you about your thoughts on when to move closer to your son. Any new thoughts on this?

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I’m glad I asked. What wonderful news. I bet @rosemarya can relate to this development too. While living mindfully sounds so simple, it’s not easy to let go in order to be closer. Who wouldn’t obsess over a loved one’s well being? I gather however that was suffocating all of you and limiting you to a narrowly focused relationship. Holidays can be so good at helping us to see all the dimensions of others and ourselves.

Thanks for sharing your update.
Colleen

PS: I want your son’s job! I spend far too much time in front of a computer.

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