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?

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?

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.

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.

My husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!

Hi,
I have a very close friend of 30 some odd years who is waiting for a liver transplant and has sarcoidosis . She has been bravely handling all the associated hospitalizations, setbacks, kidney stones and infections, now bile duct stones and some heart and lung deterioration though she is not on oxygen yet. I fear that she is ready to give up and even worse that her medical team is planning to take her off the list. She has been on the list for 3 years and suffering with other health problems much longer. From day 1 many people in her life offered to get tested for the living donor program but her medical team initially told her that was not an option. She has a great husband and family who are very supportive and she also has a disabled son who loves and depends on her- so she has a lot to live for! I know she is going through something I can never truly understand but I'm not ready to give up! How can I support and encourage her to keep trying and maybe even try a different medical facility while still respecting her decisions?