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Are there any other pre-liver transplant caregivers out there?
Transplants | Last Active: Jul 29, 2018 | Replies (195)Comment receiving replies
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.
Replies to "Hi there. Our son has had sarcoidosis of his lungs for 13 years (almost like asthma)...."
@beckyjohnson as a bumper sticker says, “Always remember, you’re Unique, just like everybody else”.
JK
@myson I hope your son's wait will be on the shorter end of that, the wait can be wearying. As I progressed through the process, and with my condition slowly declining, I was kept abreast of how long it would be with fairly decent accuracy which I think helps, having some idea of when things will happen. I think maybe that is more possible with livers. I also had my bag packed long before I expected the call to come.
The whole process is definitely a bit intimidating but by the time the call came to get to the hospital, my husband and I were perfectly calm, and happy that we would be seeing an end to what I went through, mostly in those last six weeks. Even now when I think of everything I get tears in my eyes. The whole thing is so surreal to me.
Enjoy your trip "northwest'. You are going there for three years? I see from your info that you live in SC. I think we will be going there in the fall, I have wanted to go to Charleston for a long time. Interestingly my son's gf comes from SC also, but not close to Charleston.
JK
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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