1. < Transplants

Are there any other pre-liver transplant caregivers out there?

Posted by jodeej @jodeej, Jan 29, 2018

Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!

Interested in more discussions like this? Go to the Transplants Support Group.

beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @myson "Good morning ... And it's a hot one today in SC. My husband and I are..." + (show)
@myson

Good morning ... And it's a hot one today in SC. My husband and I are discussing driving to Jacksonville for a few days and going to a support group meeting and maybe meeting with a nutritionist. We want to stay connected and show our son our continued commitment to him. Is this doable?

Jump to this post

@windwalker What a wonderful turn of health to be spared the most delicate of all transplants. I hope you continue to be healthy enough to live well without one. Grateful people are a true blessing & great mentors who shine for all of us. It is so uplifting to read about people who are living for decades. With liver transplants both living donor & recipient are required to meet & participate together. They surly must be glowing with the joy of success even through their tears & overcoming fears. These are the stories that bring others on board. Thank you for providing the day & time for meeting. Do you have to reregister or can you just show up?

REPLY
beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @myson "@beckyjohnson So kind of you to make contact. I'm sure we will set this up for..." + (show)
@myson

@beckyjohnson So kind of you to make contact. I'm sure we will set this up for the end of June or so. I also want to check around for housing for our post transplant stay. Any recommendations there.

Jump to this post

@myson I believe the Embassy Suite hotels are high end extended stays usually with very good ratings. That is definitely within the realm of short term residencies.

REPLY
beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma). He was getting worse and losing a lot of weight from trying to eat clean and from excessive coughing. Last July, after much begging, he agreed and went to Mayo JAX for evaluation. He thought he would come home with new medication but instead found out he needs a double lung transplant. He had more testing in September which resulted in him "not really wanting" to pursue surgery. Denial is probably the best way to describe it. This April though, after hearing that his lungs have gotten smaller, he has agreed to Mayo's terms. He has been listed. My husband is his main caregiver with help from me to take care of "both of them." I read a lot of the posts here and am witnessing the knowledge and compassion among the patients and caregivers. Every time the phone rings we jump. I know we've only been waiting about 6 weeks but the anxiety is sometimes tremendous. Great family and friends helps so much with prayer and good thoughts. Our son is still working, has a loving wife and 3 daughters, all of whom are the apples of his eye. We know the outcome will be good. I welcome any conversation. God bless us all.

Jump to this post

@glinda Not to be bossy but there is no need to apologize for not being much help. Just posting for a bunch of strangers who may or may not like what you have to share is an act of courage. Courage is always driven by positive motivation. Who knows who that 1 person is that your post will move or touch or motivate... get the picture?

REPLY
beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma). He was getting worse and losing a lot of weight from trying to eat clean and from excessive coughing. Last July, after much begging, he agreed and went to Mayo JAX for evaluation. He thought he would come home with new medication but instead found out he needs a double lung transplant. He had more testing in September which resulted in him "not really wanting" to pursue surgery. Denial is probably the best way to describe it. This April though, after hearing that his lungs have gotten smaller, he has agreed to Mayo's terms. He has been listed. My husband is his main caregiver with help from me to take care of "both of them." I read a lot of the posts here and am witnessing the knowledge and compassion among the patients and caregivers. Every time the phone rings we jump. I know we've only been waiting about 6 weeks but the anxiety is sometimes tremendous. Great family and friends helps so much with prayer and good thoughts. Our son is still working, has a loving wife and 3 daughters, all of whom are the apples of his eye. We know the outcome will be good. I welcome any conversation. God bless us all.

Jump to this post

@rosemarya @myson It is definitly a 2 way street. My children are forever telling me "you can't save the world, you need to stop thinking about everyone else, you're going to get yourself killed, that's on them" ect ect ect. In return (most likely to begin with) I'm super indepent, mom & dad (he died when they were still in primary school), mechanic, carpenter, lawn maintenance & of course most traditional female labels (bar cooking) to the point I refuse to let them see any weakness in my. Yet I cry at sappy movies (When they took Dumbo from his prisoned/ chained mom) & they always get a good laugh. Life is a marble of beauty, laughter, sadness, fears, grief, relief and perception. We are all so common yet so unique

REPLY
beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @rosemarya "Dear friends thru transplant, Just now, I have scrolled thru these 9 pages of conversations, and..." + (show)
@rosemarya

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

Jump to this post

@amyintucson There is nothing like a creative side to help keep you balanced in your life struggles. I would not let it get to far away from me because it makes a "great distraction for what worries us"

REPLY
beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @jodeej "@rosemarya my life in general is going great! Our youngest daughter graduates with her Master's in..." + (show)
@jodeej

@rosemarya my life in general is going great! Our youngest daughter graduates with her Master's in social work this weekend! We are so excited and so proud of her. This also means that we will have all our kids together, which is rare now that they are all grown. My heart is full!

Jump to this post

@jodeej That is sooo wonderful. It is bittersweet when our children grow & go. The empty nest syndrome hit me hard when I felt like they didn't need me anymore. What I didn't realize is they still wanted me. Now we have an annual extended family gathering independent of holidays. That always fills my heart with joy

REPLY
beckyjohnson | @beckyjohnson | Jun 7, 2018
In reply to @contentandwell "@jodeej Have a great weekend with your kids together, I know how special that is. We..." + (show)
@contentandwell

@jodeej Have a great weekend with your kids together, I know how special that is. We generally have a brief period of that in the summer and again over Christmas. Even though our daughter lives in NYC, about 4 - 5 hours from here, we don't see her nearly as much as we would like. I think I am going to go visit her soon, take a train there.
Congratulations to your daughter. Our two are also both on the cusp of changes. Our daughter starts a new job on Monday, a "corporate" type of job, so she is nervous. She is not really a corporate type of person but it was too good an offer to turn down. Our son is also possibly changing jobs, either that or he will get a nice incentive to stay where he is, so both of them are entering new phases in their lives. I love that they include us in all of this. I am very proud of how well they have done. As I have often commented, "the jury was out for a long time", but thankfully it came back with a good verdict.
JK

Jump to this post

@contentandwell @jodeej Love their accomplishments but hate to see them go. Riding a real steam engine train cross country is on my bucket list. You should go it will do you a world of good.

REPLY
beckyjohnson | @beckyjohnson | Jun 8, 2018
In reply to @hullsar "This group appeared in my Facebook feed just when I realized I was going to need..." + (show)
@hullsar

This group appeared in my Facebook feed just when I realized I was going to need more support than I know how to ask for. My boyfriend went into the hospital to be evaluated for a liver transplant--testing to verify if he is strong enough for surgery before he gets added to the registry. It was supposed to be 2-3 days. We are now on Day 10 and, though he passed all of those tests with seeming flying colors, there is no plan to discharge in sight as his kidney function has deteriorated from trying to handle the fluid in his legs and abdomen, despite multiple taps during his stay.

I am 3 hours away, and am struggling with not knowing how to be useful. His original plan was to leave after testing and get all of his affairs (long-term disability, his rental property, wills, etc) in order. But this twist with the kidneys is making us fearful that he won't be discharged at all while he waits for a liver.

In a lovely (for us) coincidence, for several days, he was sharing a room with a post-transplant patient who lives in our area. He and his wife were able to share so much of their experience and practical advice with us that I thought, "Okay, I can prepare for that. Having bags to pack, and plans to make will take my mind off of the stress of the unknown and the surgery and recovery." But I wasn't prepared for the possibility that he is worse off than we thought, and that there may be no time to prepare ourselves, emotionally, financially, legally, practically, logistically.

I am afraid. And that fear adds to my feeling of uselessness. So I am off to pack a bag.

Jump to this post

@hullsar Please don't beat yourself up too bad. Both of you are going through this together no matter how far apart you are. College expertise is great but never underestimate knowledge of experience. As you have already learned much is to be gained from those who have taken the journey you have been cast into. Mayo Connect is an open, candid, transparent place where you will always be welcomed to share your real life journey as you join others who've been there before you and surely will come after you.

REPLY
beckyjohnson | @beckyjohnson | Jun 8, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma). He was getting worse and losing a lot of weight from trying to eat clean and from excessive coughing. Last July, after much begging, he agreed and went to Mayo JAX for evaluation. He thought he would come home with new medication but instead found out he needs a double lung transplant. He had more testing in September which resulted in him "not really wanting" to pursue surgery. Denial is probably the best way to describe it. This April though, after hearing that his lungs have gotten smaller, he has agreed to Mayo's terms. He has been listed. My husband is his main caregiver with help from me to take care of "both of them." I read a lot of the posts here and am witnessing the knowledge and compassion among the patients and caregivers. Every time the phone rings we jump. I know we've only been waiting about 6 weeks but the anxiety is sometimes tremendous. Great family and friends helps so much with prayer and good thoughts. Our son is still working, has a loving wife and 3 daughters, all of whom are the apples of his eye. We know the outcome will be good. I welcome any conversation. God bless us all.

Jump to this post

@myson Well you pegged us right. We are a different type of family. One bonded by trials, tribulations, unconditional giving & hope. Denial is actually a natural coping mechanism so that is perfectly normal. This is just my observance it usually gives way rational decisions when whatever is being denied will not get out of your face (affecting your life) which is what moves one to do something about it. Thank you for sharing.

REPLY
myson | @myson | Jun 8, 2018
In reply to @myson "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...." + (show)
@myson

Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma). He was getting worse and losing a lot of weight from trying to eat clean and from excessive coughing. Last July, after much begging, he agreed and went to Mayo JAX for evaluation. He thought he would come home with new medication but instead found out he needs a double lung transplant. He had more testing in September which resulted in him "not really wanting" to pursue surgery. Denial is probably the best way to describe it. This April though, after hearing that his lungs have gotten smaller, he has agreed to Mayo's terms. He has been listed. My husband is his main caregiver with help from me to take care of "both of them." I read a lot of the posts here and am witnessing the knowledge and compassion among the patients and caregivers. Every time the phone rings we jump. I know we've only been waiting about 6 weeks but the anxiety is sometimes tremendous. Great family and friends helps so much with prayer and good thoughts. Our son is still working, has a loving wife and 3 daughters, all of whom are the apples of his eye. We know the outcome will be good. I welcome any conversation. God bless us all.

Jump to this post

JK. We don't know how long the wait will be for 2 lungs; all things considered (blood type, size, etc.). Especially now that the size has to be from a 12 yr old or small adult. They basically told us .. 1 day to 2 years. We keep a bag packed all the time. My husband and I are taking in some culture for a few days and heading northwest of where we need to be, as far as 3 yrs away from our hometown. This makes us nervous but we've talked and believe that we must live. We will be with our son, however, over Fathers Day weekend, cannot wait. We will go to Jacksonville soon too with hopes to attend support group meetings. I must take this minute, however, to thank you for writing to me and I am so proud of you for all you have been thru and your strength. I recently told my daughter in law not long ago that our son is not scared enough.....once his condition worsens I'm sure he'll be "wanting" the lung surgery. Have a great day. Lorraine

REPLY
View MoreView Less
Please sign in or register to post a reply.