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Living Donor: It's a huge responsibility
Transplants | Last Active: Jul 20, 2018 | Replies (112)Comment receiving replies
I was at Mayo for testing 3 weeks ago but so much has happened in such a short time that it seems like 3 years ago. I went by myself and after getting my test schedule, I'm glad I did, I would have felt bad for my husband hurrying up and waiting. It was also nice to go back to my hotel and rest, read and watch bad tv without worrying about if he was enjoying the trip. Before I left I cleaned the house and stocked the freezer for the family and for a few days of meals when I got home. We made the decision as a family for me to donate but I didn't want something that I was taking on to put my family too much off their routine while I was gone.
The testing process at Mayo was amazing and exhausting. I had 23 appointments & tests in 2 days and am still surprised that I (and the Mayo team) was able to accomplish so much in such a short time. I had 1 receptionist that was rushed and not outgoing and that was the worst of it. I would not have even noticed her manner at home, it was only compared to how outgoing, friendly and professional I found my team to be, that I noticed it.
For the surgery, my husband will be with me and 1 of my sons will stay at our house with the dogs. We have a website, "Nextdoor" that we use and found a college student that will also stay at our house so the dogs get some extra love and our son doesn't feel pressured to be home all the time. The beauty of this student is that he has 3 room mates and is happily staying for free to have a quieter place to live for a few weeks, some home cooked meals that I will stock for him and access to a free washer and dryer. I am leaving for surgery in 8 days and I have already started getting ready to go. I am both a planner and a procrastinator so I made a huge list of everything I want to get done before I leave, then broke it down into daily tasks. It works on paper but if I get to most of it, I'll be happy -I don't really need to clean the furnace filter before I go but yes, it's on the list.
I don't know if that helped anyone but it made me feel good to put it all in writing. Thanks for letting me post what should be in my journal, online!
Replies to "I was at Mayo for testing 3 weeks ago but so much has happened in such..."
@mauraacro and @dank Is this the way Mayo always operates or do they put people who are waiting for surgery with a live donor on an express track? My testing at MGH was done over a longer amount of time but I think if I got desperate and had a living donor the clearance could be expedited.
JK
I'm not sure if I was fast tracked because I'm a donor or because I"m from out of town. Maybe they didn't fast track me but there was an amazing scheduler and they put me in wherever time allowed? It took 2 full days from 6AM-430PM with very little down time and I was going from floor to floor, building to building and back again. They also recommended that I stay for an extra day in case I needed more tests.
Don't be surprised if they order more tests after you return home. I had to have more blood work done, a chest CT, pulmonary function test and repeat the 24 hr urine test which I had messed up by not drinking enough fluids while running from test to test at Mayo. The hard part was getting doctor's offices here to follow up on sending reports and a CD. I envy people who live in Rochester and have access to that kind of medical care.
@fauneconner I feel very fortunate to be @ 55 miles north of Boston too. Amazing medical care there. So many people up here in NH figure that the doctors in Boston will be cold and less caring but I have found just the opposite- they are dedicated and more caring than most of the doctors up here. I wish it was close enough to have my PCP there but it can take two hours to get there during the day due to traffic.
JK
@dank, I want to add my experience: The results are already with my doctor when I have my afternoon appointment - same day.
How do they do that!
Rosemary
@rosemarya I had been going weekly for lab work and MGH had me using a lab that has facilities everywhere -- Quest. I would go in the morning before 9:00 and I would have the results in my email by about 2:00 in the afternoon. MGH had the Quest that drew my blood send it to the testing facility by courier STAT. Right now things are stable so I haven't gone in a few weeks but as of Saturday my drugs change again so I will resume next week. They are changing because I was on sirolimus but that that can interfere with healing so they switched me back to tacrolimus prior to my knee replacement and now I am going back to sirolimus.
JK
@fauneconner, I was passing thru some previous conversations, and wanted to drop in and say, "Hi".
I'm thinking about you.
Rosemary
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MIRACLE MAYO,
I also had 21 appointments in two days, how can anyone schedule that many appointments and be so though, professional, cheerful, and spend as much time with you as does Mayo . I know that in the cities this would have taken 6 months !
HATS OFF TO MAYO !