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My son is faced with Hospice---what to do now? Thank you for reading this...

Started this discussion. Last reply by Krystal Apr 24. 8 Replies

I write to you all as a mother of a 26 year old son with a heart transplant. Brandon received his heart over 23 years ago when he was just a toddler. He was case number 11 and the Drs at that time…Continue

Antibody rejection- Son is awful predicament- please help

Started this discussion. Last reply by Denise D Jan 8. 38 Replies

Hello to all of you reading this. This is heartbreaking and probably very hard for you to read.My son is a heart transplant of over 22 years (he is 25 years old) His heart has been getting antibody…Continue

Tags: studies, transplant, treatments, heart, rejection

 

Becky's Page

Latest Activity

Heather and Wade Morgan left a comment for Becky
"hi there Becky!  You were on my mind heavily last night.  I am so sad to hear your news.  I am glad however Brandon was able to do some fun and amazing things while here on earth.  I looked at the website for organ donation…"
May 3
Heather and Wade Morgan left a comment for Becky
"Oh my Becky!  I just read your last post, I am praying for you now!  Hugs, Heather"
May 2
Heather and Wade Morgan left a comment for Becky
"hi there!  My little boy is 7 years out and 7 years old!  Also heart.  He had retuximab treatments and still continues to get monthly IVIG every month waiting on his b cells and t cells to return.  He had been treated for PTLD…"
May 2
Krystal replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"to be honest I wished there were more people like you coming form a similar background as a guinee pig at 13 months olds i had major surgerys and dialysis issues and tummy issues  God bess you and thanks for sharing :)"
Apr 24
Paul replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"Being deeply loved by someone gives you stregth, while loving someone deeply gives you courage. I will send your son a note. Peace be with you."
Apr 24
Ruth replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"How is Brandon doing now? Your last post was Feb. I think. I'm concerned about antibody rejection myself,although I don't have it yet. I' ve had 2 hearts 1994 & 2005. So a total of 18 1/2 years. Ruth"
Apr 24
John liked Becky's video
Apr 24
Becky replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"Thanks Luce for you reply. You are very thoughtful. So far I have these names of those still living with the original organ/heart: Ricky Meche (24years),  Kaylee Davidson (25 years UK), Dalphene No last name (25 years), Brandon Dybdahl (23…"
Feb 8
Luce replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"Now years ago the longer survivor had a 31 years old heart, got it in the seventies and died of cancer with no heart related condition. He was a Stanford patient when when Norman Shumway was "doing his thing" there. ...yeah I have a lot of…"
Feb 8
Hostess Risé replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"Dear Becky Thank you for pouring your heart and soul out to all of us. Don't worry about your thoughts that you might scare others. There are never guarantees in life and we are all told how difficult the transplant journey can be. I will reach…"
Feb 6
Becky replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"Thank you for your kind words of faith and of strength as we fight this battle. I feel like I have a friend in you and thank you for your compassion as we face what is ahead of us."
Feb 6
Mark replied to Becky's discussion 'My son is faced with Hospice---what to do now? Thank you for reading this...'
"Dear Becky, We are bound together here, not only by our collective celebration of life saved and renewed by transplant, but also to share in the pain and loneliness that comes when life can no longer be renewed ... or saved. Your letter leaves me…"
Feb 6
Becky posted a discussion

My son is faced with Hospice---what to do now? Thank you for reading this...

I write to you all as a mother of a 26 year old son with a heart transplant. Brandon received his heart over 23 years ago when he was just a toddler. He was case number 11 and the Drs at that time did not really know what the long term outcome for his life would be. Currently we are faced with 1 year at best to live as the Drs say...BUT momma bear won't quit until the fat lady sings..I wont give up on my son until that final day comes..Until then, I pray, I weep, I laugh with him, we spend…See More
Feb 5
Denise D replied to Becky's discussion 'Antibody rejection- Son is awful predicament- please help'
"Sorry Becky, I was in the hospital, did not mean to be disrespectful. Thank You so much for your kind words.. I am still praying for you & your family.. denise"
Jan 8
Hostess Risé left a comment for Becky
"Happy Birthday to Becky I was just thinking about you last night.  How is everything? I know you must be very busy with your precious sons health-stay in touch when you can."
Jan 6
Duane Kellar left a comment for Becky
"Becky, WOW 23 yrs good going, Happy Birthday to u and many more."
Jan 6

Profile Information

Were you a member of our Forum on http://TransplantBuddies.com ?
No
Where did you hear about Transplant Friends?
Online
Are You Male or Female?
Female
Share - which illness lead up to you needing a transplant?
My son has a heart transplant for 23 years. He was born with a congenital hypoplastic left heart- transplanted at 3 years old. His heart will be 23 years old in a couple of weeks. He is in renal failure and heart failure due to antibody rejection. Not sure if he will make it and am very sad. They sent him home on a dopamine drip/ bag that goes over his arm. He cannot get another transplant because there is no IV access left. I am on here for support- my son is very angry and takes out everything on me. I am trying to find peace and love at this most difficult time. Has anyone else been on a dopamine drip at home. My son will not share anything with me so I am wondering if this means it is terminal stage? Thanks for your help
Which Organ(s) did you receive? If you are on the waiting list, please share.
Heart
How many years have you had your Transplant for?
23
I am Interested in Transplant Friends because...
I need support and would like to comfort and support others.
Which Transplant Center has or will perform your life saving surgery?
Stanford- Dr Starnes

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Comment Wall (11 comments)

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At 9:40am on May 3, 2013, Heather and Wade Morgan said…

hi there Becky!  You were on my mind heavily last night.  I am so sad to hear your news.  I am glad however Brandon was able to do some fun and amazing things while here on earth.  I looked at the website for organ donation support he created.  What a special boy!  God bless him and you all. hugs and please know I am thinking about you and your family at this time!

Love,

Heather

At 3:21pm on May 2, 2013, Heather and Wade Morgan said…

Oh my Becky!  I just read your last post, I am praying for you now!  Hugs, Heather

At 3:19pm on May 2, 2013, Heather and Wade Morgan said…

hi there!  My little boy is 7 years out and 7 years old!  Also heart.  He had retuximab treatments and still continues to get monthly IVIG every month waiting on his b cells and t cells to return.  He had been treated for PTLD over 2 years ago.  contact me if you want :0 your son is doing well?  Many years same heart?  WOW!  Thank God!

heather 

wmorgan20@comcast.net

XO

At 1:58pm on January 6, 2013, Hostess Risé said…

Happy Birthday to Becky

I was just thinking about you last night.  How is everything? I know you must be very busy with your precious sons health-stay in touch when you can.

At 12:52pm on January 6, 2013, Duane Kellar said…

Becky,

WOW 23 yrs good going,

Happy Birthday to u and many more.

At 10:43am on January 6, 2013, Cisco said…

Happy birthday Becky! Have a great day! You should join us for chat on Saturdays and sundays starting at 2 pm central time. Hope to see you there!

At 8:14am on January 6, 2013, David said…

 Happy Birthday Becky ! 

At 12:38am on January 6, 2013, Rita said…

Becky, Happy Birthday, wishing that all your birthday wishes come true.

At 2:35pm on October 8, 2012, Hostess Risé said…

Hi Becky

Thanks so much for joining us and for sharing your heartfelt message. Would you like for me to send out an email with your question to all our members? This would be included in an email.

 

I am sorry your son is taking this out on you.  Does he react to you when you say something in particular.  I would avoid all confrontation and tell him how difficult it is for you as well.  When you are hurting it is usually not ever alone.

 

At 4:41pm on October 7, 2012, Mr. T said…

Welcome Becky, I hope things get better for you and your son. The dopamine helps keep up his blood presure. I will say a prayer for both of you. All the best,

Mr. T

 
 
 

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