Connect
← Return to Are there any other pre-liver transplant caregivers out there?
Discussion
Are there any other pre-liver transplant caregivers out there?
Transplants | Last Active: Jul 29, 2018 | Replies (195)Comment receiving replies
We visited our son this past Fathers Day weekend. So great to see him and talk/spend time together. He told us that after being #2 on the Mayo List for transplant, he was moved to #4. This did not please me but I understand it. We look forward now to his next checkup on July 16. He seems to be a bit weary and for good reason. The constant coughing (which seems worse) and his desire to act "normal" are taking a bit of a toll. When we are out in public, even a neighborhood cookout, he does not use the oxygen because he doesn't want others to see him and know he's sick. I asked him several times to wear his portable unit but he said "I'm fine." On a positive note, however, I did over-hear him speaking with one of his neighbor fellows and talking openly about his issue; even answering questions. This was good. When we drive home (just less than 3 hrs) we don't speak....kinda weird. We seem to absorb it all and talk the next day (my husband and I). We worry so much.
Replies to "We visited our son this past Fathers Day weekend. So great to see him and talk/spend..."
Connect
@myson
Your Fathers Day weekend sounds like it was 'just what the doctor ordered'! I am happy that you are feeling some understanding for what he is thinking and feeling.
I remember when I tried to act 'normal' even when my liver symptoms were beginning to bother me. I couldn't tolerate hearing 'gushy' sympathy and advice from some family members and friends about what I needed to do (as if they knew more than the specialists). I also did not want to spoil the party for others. Does that make sense?
I think that your son is handling this in his own way and on his own terms. He will use the oxygen when he needs it. And he will commuinicate with those he chooses for a variety of reasons. You are absolutely correct that this is taking a toll on his energy. I can understand how difficult this must be for you and your husband to see happening. When I was critical before my transplant, one of my favorite memories is when my brothers would give my mom the phone so she could talk to me. Mom was 92, in a nursing home with dimentia. Sometimes she knew me and she wanted to come to take care of me.
I hope and pray that he will get his transplant when it is the right time for him. The placements can change as patients go up and down due to many variables. And in the long run - the Match is the deciding issue.
Are you and husband still planning to visit Mayo JAX?
Hugs,
Rosemary