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Mayo Clinic AZ transplant evaluation itinerary arrived!

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Posted 7/6/2013 6:26 PM (GMT 0)
Connie,

They have told me I am still eligible for transplant following the Therasphere's treatment. Indiana did not express any concern to me when I let them know that Northwestern wanted to do it.

I think they feel it works better than chemo. I also read that chem does not work well with people with a history of portal vein thrombosis which I had removed via tips.I still have a nonoccluding superior mesenteric clot.

I will call transplant on Monday regarding why they want to go this route rather than chemo.

Thanks.
Posted 7/6/2013 8:11 PM (GMT 0)
"I will call transplant on Monday regarding why they want to go this route rather than chemo."

I'd feel better if you do, but it could be because of your particular history.

Hugs,
Connie
Posted 7/6/2013 10:09 PM (GMT 0)
Susie,
We are totally happy my husband had all of the eval testing done in one week. I think there will be more testing and maybe he will need to list at another TC in the future. The first day was scary and interesting. After that, we knew where to go, what was happening, felt comfortable and at ease. If he ever needs to dual list, the process is now understood.

One question, Susie, ....about the 3 years in mid-teens. How did you do with the TIPS and quality of life? Themister has improved and is more managed most days since we moved from high altitude to Phoenix. It is freaky hot right now, but he was miserably freezing since Jan when TIPS was performed. He now walks outside if he is anywhere and feels cold. Loves it! This has helped mentally, and sunny days do lift spirits. (compared to gray days where we previously lived).


I hope all goes well with the TS. Do you have a good support person? I am so honored to be a carer for my husband. You liver folks all are amazing to me. I only hope I could handle the patient part with as much grace as I see from you and all those living with ESLD and transplantation. Brave souls, all of you.

Thanks for posting your recent info and where you are going to be, the MELD and your list numbers. So much of liver disease is "hurry up and wait" :)

Heart is with you through your future transplant. Major Hugs, themiz
Posted 7/7/2013 1:06 AM (GMT 0)
TheMiz,

I had my tips in 2011 to remove a portal vein clot to restore blood flow to my portal vein. My docs described it as a bridge to transplant. My hepatic encephalothopy improved after the tips, but my foot and ankle edema got worse. I also have had 4 revisions due to stenosis.

I have had a few bumps along the way. My spleen spontaneously ruptured in January and I almost did not make it. I got home from the hospital in early March and have been rehabbing ever since. I want to be in the best possible shape for my transplant. The lesion growth was a surprise since they have been watching it for a couple of years, and it had been stable.

My husband is my primary caretaker, but he still works so I try to do as much as I can so he does not have to take time off. My parents are in good physical and mental shape and will be available to come and help out after the transplant. They helped me out after my recent hospitalization.

I get a lot of support from this group and other groups I belong to. I have given my husband a list of them with my user name and password so he can post when I go in for transplant. Like a typical man, he is not fond of doctors and hospitals.
L
Posted 7/7/2013 1:39 AM (GMT 0)
Themiz, is Phoenix anywhere near the recent fires? My BFF's 3 grown kids live out there and I've not spoken to her lately.

Hugs,
Connie
Posted 7/7/2013 2:14 AM (GMT 0)
Connie, The fires were in Prescott, 75 miles NE from where I live. Tragic. No civilian deaths, over 200 homes lost, and 20% of the Prescott Fire Dept. killed. The deceased Hotshots were brought to Phoenix, will return them to Prescott tomorrow, I think. All flags are at half staff for 19 days, one for each Hotshot that lost a life in the fire. Average age was 27 years old. Driving to Mayo Clinic, the first thing was the flagpole with half staff flag. Caught up in our own drama, we were not paying as much attention as usual that week. The gravity of loss of so many young responders just jolted me, seeing those flags half staff at Mayo Clinic. Themister had tears in his eyes. He said something like, "they should be living the long life and not me".

Rest well tonight, hugs, themiz
Posted 7/7/2013 4:13 AM (GMT 0)
Thanks, themiz. I spoke to my friend tonight and she said her kids were not affected by the fire, but that it is VERY hot in Phoenix. Her son just now moved out there from NY and is not used to it...has to stay inside.

Hugs,
Connie
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