This and That and Talk - My Transplant

@lcamino I do understand completely. I even have a hard time watching that type of movie. It still upsets me so much when either of my two kids are sick or anything. Once you are a mother that is what happens.
JK

@contentandwell - Well I don't know about post-transplant but I would assume so. Due to the study I'm in I can't drink but I would not be able to even if I wasn't in the study. Alcohol is not good for anyone in end stage renal disease no matter what the cause. I was not a big drinker before but I probably have not had a glass of wine for 14 years so I'm used to being the odd one out. Neither of my children are able to drink (age now but even when they are of drinking age) due to their diseases and medicines they take so about 14 years ago my husband and I decided to have a house with no alcohol so they would see that you can have fun, and weather the storms of life, without alcohol.

And you are right, the pain of losing a child never goes away but you do adjust to a new normal. Some days I can speak or write about it without tears or emotion and other days I'm a blubbery mess. I can never predict which it will be either. Sometimes I can watch a movie with a sick child or one that dies but most times I can't, and if I know ahead of time I choose not to because it will inevitably rip off my scar of healing and I see no benefit to that.

Thanks for understanding.

@lcamino Lynne, I think it’s different with liver being a longer recovery. I never expected anyone to be a donor, not even my daughter or son. My daughter was very insistent that she wanted to be and pushed me to get the information she needed to proceed but right after I got that for her she sort of dropped out and never mentioned it again! I have no idea what happened, I am quite certain that she had researched what being a living donor entailed before volunteering so I will always worry that she has something wrong that disqualifies her. She has been evasive when asked.

I told my son no because he is on an excellent career path and being out of work for a month could really impact his it. I know though if I got to the point where I was critical he would have been on the next flight to Boston.

I could not imagine anyone with a less close relationship would volunteer and unless it was critical I would not have allowed them to do it. Again, I think being a liver donor is more difficult on the donor than being a kidney donor.
JK

This conversation is making think of a discussion I started last Thursday, a slight twist on the Thanksgiving theme. I invite you all to add a comment here:
* I never thought I'd be thankful for ... https://connect.mayoclinic.org/discussion/i-never-thought-id-be-thankful-for/

@lcamino Lynne, are you banned from drinking forever as liver transplants are?

I can understand the reactions to having lost a child, thst’s every parent’s worst nightmare. Even though it is not as painful now I am sure that it never goes away entirely. Just thinking of how that must feel brings tears to my eyes.
JK

@hopeful33250 - Thank you. Part of that empathy is probably from my MSW (masters in social work) although it disappeared for a few years after our daughter died. It eventually came back with a strong heart for those who grieve and I have had many opportunities to help others through the grieving process (informally and by leading grief groups at churches) as I was helped.

Recently I find my patience waning with those that are not organ donors or not willing to do paired donations. I realize my vantage point is different, and self serving, but I just don't get people's hesitancy. I understand the pause to be a living donor as that has a large direct impact on a person's present life (job, family, physical pain) and it would be scary etc. I realize some of it is ignorance but my need is selfish and gets in the way of my understanding other people's decisions. Anyone else ever felt this way as they wait for a living organ donor?

Lynn @lcamino

You demonstrate a lot of insight into people - you've been through a lot and it is great you can show such empathy to others.

Teresa

@rosemarya - What a story! Thank goodness for medical transportation! and good job for the University of Ky to realize you needed to be moved to Mayo. It sounds like it is at true miracle that you are here today to help us all through our journeys. Thanks for giving back!

@rosemarya - Sometimes, when you don't have the emotional energy, it works out best if you just say the necessary platitudes to get through superficial conversations. Not every conversation can be about your present trial because you would burn out and be more exhausted and overwhelmed. During a trial you need to find some normalcy and that might be a menial conversation with the grocer or waitress. I find in Rochester that most locals assume I'm there for the Mayo Clinic since that is what keeps that city running.

@contentandwell - When I tell some people I will need a kidney transplant soon some are at a loss for words and I get that - I look and act healthy. When I have told people why I abstain from alcohol people seem so surprised and at a loss for words. It makes me feel like everybody drinks and I know that is not true. in reality I think it makes the person who is drinking uncomfortable because I'm not joining them. The worst reactions we have had are when people learn that our first daughter died at 7 months. It's like dropping a bomb on a conversation. I have found that most people in society are not comfortable with the pain of others (especially grief from loss through death) and when they can't fix your pain with a few words of comfort it can make for an awkward situation. It is better now because our pain is not raw and palpable so it does not put others on edge as much.