Hi @myson, I'm glinda I have had a heart transplant but I also understand about the sarcoidosis as I have sarcoidosis of the skin and my transplant team from mato Rochester MN. Keeps a close eye on my lungs as a precaution from the sarcoidosis they want to make sure it doesn't move to my lungs and the same thing with my eyes I see a specialist for my eyes do to the sarcoidosis I was actually diagnosed with it right after I learned that I would need a heart transplant so for me I check my skin everyday for a breakout of the sarcoidosis to make sure I'm clear I use steroid creams everyday also so to keep the sarcoidosis under control so I do understand how your son must feel but to be clear my heart transplant wasn't do to the sarcoidosis than good it was do to a cold but my heart is watched very carefully so I don't develope the sarcoidosis in it also I understand how he felt with not wanting the transplant as I felt the same way when I found out I figured I had done everything I could to make sure my son and daughter were taken care of along with my mom but my doctor's in Rochester gave me no choice they told me they were puttinge on the list as soon as they could as physically I was healthy enough and young enough to handle it .all I can say is to give your son all the support and love you can. Anytime you would like to talk or even your son I'm always willing to listen you can find me here on Mayo connect along with a lot of other people willing to help and talk or just willing to listen if you need it.
Glinda

Thank you Glinda. I was stunned reading your message and your daily worries about sarcoidosis. I find it unbelievable that you have to monitor your eyes, heart, skin, and lungs. And I don't know if our son's lung sarcoidosis can show up in other organs. So far, his overall health is good. Mayo told him in April that the disease has caused his lungs to shrink -- causing his chest cavity to get smaller and his diaphragm to move up. This means that even though he's 5'8" tall, they will search for lungs of a person 5'2" tall or around 12 years old. He is 45.
Thank God, he has an extremely good attitude. He tells me that he is "living the dream." He tries to look strong when we visit (3 hrs away) by not using his oxygen when we first get there or if we go to dinner. Then, at night he needs it badly. I want him to stop doing this. Makes me so nervous. Any advice on how to tell him that?
I read a story about a young man (with Mayo) that got his lungs (2) last November. He provided a photo of himself and his daughter out fishing with no oxygen. He has 75% lung capacity (our son is 40%). This story gave me hope.
Thanks for being on this blog and I hope to talk to you again.

@myson, I do know that sarcoidosis can spread to other organs and so far your son is lucky and I'm lucky that it hasn't while I was in Rochester MN. After my transplant I picked up some pamphlets on sarcoidosis as I wanted to learn everything I could on it and how it would affect me and my new heart. My suggestion is to have your son talk to the doctors and get all the information you can on sarcoidosis. And I never had to have oxygen before my transplant and the doctors could never figure out why when my heart was only getting an eighth of my blood that was oxygenated to my organs. But my suggestion on that would be to have a sit down face to face with your son and tell him how you feel about him straning his lungs by not using the oxygen when you are there or go out to a restaurant let him know that even with the oxygen he is still strong and just because he has to use it doesn't make him look frail or sick in your eyes I would also talk to hi wife and see if he does the same thing with her when the go out let him know that there is nothing to be ashamed of with having to have oxygen right now that after his transplant he won't need it anymore that the oxygen is only temporary until he gets his new lungs don't let him give up on believing that his new lungs will come because I have faith that they will and he will feel great when he gets them I'm sorry I wasn't much help but as long said before any time you want to talk I'm always willing to listen and try to help.
Glinda

@myson, I think that our kids like to protect Mom from worry by being strong. I also did this in reverse - I tried to protect my sons when they came to visit me by acting strong! The caught on to my act, when my symptoms became to obvious to hide.
I'm happy that you have joined this discussion.
Rosemary

@myson it is scary to pursue a transplant of any kind. For a long time I was on the list but not sure I would go through with it, and then as things progressed and got worse I welcomed that call that they had a liver for me. I don't know much about lung transplants but I just happened to be talking to someone this past weekend who had a friend who had one recently and he was doing fabulously, and so happy to have had it. Poor guy, he lives in Bar Harbor, Maine so he had to go to Boston for the transplant which is five hours from there when there is no traffic! When he got close he had to live down there for a while to be close to the hospital.
What is the wait generally for a lung transplant? Livers are over a year, I think generally about 1.5 years, and kidneys are much longer than that.
As I said, it is scary, but I'm sure when it is done your son will feel so much better and be so happy to have done it.
JK

@rosemarya same as my son and daughter. My son expressed his concern and worry, mainly to my husband, and my daughter holds more inside but I know she was very concerned also. She tried to act like what I was going through was no big deal and I would be fine. I know that was her way of trying to make me feel less worried, but honestly, I didn't worry that much overall. I figured whatever happened would happen.
JK

@myson, I want to share this with you.
https://connect.mayoclinic.org/newsfeed-post/caregiver-qa-with-steve-vorseth-l-m-s-w/
What else would you like to know about caregiving?
Rosemary

@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?

@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

@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.