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

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?

@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.

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.

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.

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

@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!

@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

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.

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.

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.