This and That and Talk - My Transplant

@rosemarya

I agree with Lynn, your attitude regarding “awkward moments” is very good. It provides a preparedness for what may come up (including the curve balls)!

Teresa

@rosemarya thanks for the input. When I had my other knee replacement my experience was similar to yours. I was able to quickly go to just one before bedtime. It was either OxyContin or oxycodone, the lesser of those two, so then dropping that one a day was easy. I am taking these multiple times a day though. Technically every four hours is permissible but I stretch that for as long as I can, often I can make it through 7 hours. The pain is finally showing improvement so I think I will try to drop the dilaudid tomorrow.
JK

@rosemarya thank you. Laura really did look lovely. Now I can have MY life back. It was a lot of work but everything went so well it was worth it.
JK

@lcamino as I think back, I surprisingly don’t think I’ve had any of those awkward moments. People have been very understanding and supportive. I guess I have been fortunate.
JK

Speaking of a curve ball - here is something that occurred very early in my treatment - when I was not ready for it.

My husband and I had just experienced a very tiring and stressful day of pre transplant appointments and testing. We were hungry and I felt that I might be able to eat something before heading home. We stopped at a nice sit-down restaurant, and the overfriendly young waiter persisted in inquiring why we were 'visiting' in the area - was it shopping, sightseeing, museum...? If I had the fortitude then that I have now, I like to think that I would have told him the truth, "I'm being evaluated to see if I qualify for a liver transplant." However, in truth, we were both on the verge of tears. And I was physically feeling too awful to carry on any conversation at all.

Today we can laugh about that incident. We wonder how he would have reacted.
Rosemary

@rosemarya it sounds like you must have had all that testing done in a really compressed way. Mine were done every week or two all summer. We would go to an appointment thinking we would be done after that and they would tell us about the next thing I needed to do, so we didn’t have the exhaustion you must have had. After I completed all the testing I did consider Mayo. When I spoke to them they said that would accept most of the testing that MGH had done so I would not have had to go through that there.
The poor server must have thought you were just not very friendly people.
Interestingly, the restaurants my son has worked at are all fairly expensive and the wait staff are all expected to be very polite but they were not supposed to “fraternize” even with people they knew unless those people spoke to them first!
JK

@contentandwell, Yes, it was a rigorous schedule, and I was already beginning to feel the fatigue, nausea, and was showing jaundice when I was listed. This restaurant incident is related to my first listing at the University of Kentucky. My tests were over 2 days that were 10 days apart. I was listed for about 10 weeks when I had to be inactivated due to possible cholangiocarcinoma (cancer in bile ducts) that could not be diagnosed locally.
My transplant team made arrangements for me to go to Mayo, Rochester for diagnosis. Unfortunately I missed my appointment because I was admitted to University of Ky with sepsis and acute renal failure. Then after my condition stabilized, arrangements were made, and Mayo again agreed to see me - they were my only hope. I was flown via medical transport from ICU in Ky to Rochester, MN. After 2 weeks in hospital, I was strong enough to be evaluated for a liver transplant in MN at Mayo. This time much of the testing happened during my hospitalization. I was on dialysis and within a short time I was evaluated and listed for a kidney, too. I did not begin to feel good again until after my transplant.
I do not know what is the 'normal' evaluation schedule at Mayo.
Rosemary

@rosemarya Thanks to God that you made it through all of that and are still here. I can only imagine what you and your husband must have gone through.
It sounds as I misinterpreted your testing, that it was before going to Mayo. I feel very fortunate to not have gone through more than I did have to go through when I hear your story and those of many others.
One thing we post transplant recipients all have in common is surely extreme gratitude. I am in awe of how well things worked out for me.
JK

@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.

@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.