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Getting Listed for Transplant Apr 6, 2018 | By Mayo Clinic Transplant Staff (@mayoclinictransplantstaff)Comment receiving replies
@jerrydrennan and @contentandwell my husband was listed on the transplant list at a 7. He was given 21 "exception points" in February due to having liver cancer. That brought his score up to a 28 and he was activated at that time, which means we have to be ready to go at a moments notice. I'm confused too that you aren't activated at a 29 and that they said id could be a year or more before your transplant? Where are you going through for your transplant, if I may ask? We are working with Mayo.
JoDee
Replies to "@jerrydrennan and @contentandwell my husband was listed on the transplant list at a 7. He was..."
Well I started with 18 points and went from there. The Mayo is talking about staging on my next visit in may.
@jerrydrennan I'm guessing that makes a difference, along with your type of cancer. I'm sure you'll find out a lot more in May. Mayo is such an amazing place!
I see from an earlier post that you are also going to Rochester. I hope it's done snowing by the time you go! We have appointments next Tuesday and it's supposed to snow Friday, Sunday and Monday. I'm hoping I can get the hubby to head out on Saturday so we don't have to drive in it. 5-6 hours in snow is not fun!
I am at Mayo Clinic in Rochester Minnesota
We are from south Texas
My wife and I were up at mayo in a snow storm in March. Not fun for us at all.
@jerrydrennan we are from southwest Iowa and that doesn't sound fun. We were there in January with below zero wind chills. It was terrible, but we did find a way to walk from the Gift of Life House to the clinic and only have to be outside for 1-2 blocks! We haven't had to use the shuttle yet and are trying not too. We may use it this time if he has his chemo at St. Mary's. I hate having to pay for parking.
I was at the Mayo clinic in January 2 for test and procedures. I go every 10 weeks and it was cold that week. We stay at econolodge down south Broadway and I ride the shuttle service. Temp was -10 w/c -30 . That's stupid cold for us South Texas boy's.
@jerrydrennan that is stupid cold no matter where you are from! Next time you are up you should check out Gift of Life House. It's a lot less expensive than a hotel and there is a kitchen you can use for cooking. GOL is only for people who need or have gotten a transplant. I highly recommend it!
I have been there very nice. We are not eligible to stay there. We stay at the economy lodge that far to save money staying down town is costly. I do like that they have a good shuttle service program and runs during bad weather. San Antonio would be shut down for a week or longer.
When we drive to the Mayo we go thru Iowa on 35 and stay in anaky out side of Des Moines.
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@jodeej JoDee, I too had liver cancer and was given exception points but not nearly as many as that! I can't remember exactly but it was definitely a mixed blessing. It was good to get more points but if the cancer recurred or there were more malignant lesions than a certain number or they were larger than a particular size that would have knocked me out of being eligible.
So "activated" means you are at a point where you are very close to being called?
JK