1. < Transplants

Wait time pre-transplant?

Posted by lonnecka @lonnecka, Jun 29 12:33pm

Once a person is referred to Mayo by their doctor for a transplant & that person speaks with Mayo on the phone… How long is the estimated wait time for the next step? We’ve been waiting almost 3 weeks since initially speaking to them. I thought they got back to you pretty fast.

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mkh | @mkhogan | Jul 15 8:42am
In reply to @lonnecka "Wow, very detailed response, thank you so much. Your response means more than you know. Do..." + (show)
@lonnecka

Wow, very detailed response, thank you so much. Your response means more than you know.

Do you mind me asking what your MELD score was when you were selected?

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Originally I came it at 27. I believe at transplant time it was 23. During wait tome I typically hovered around 24 to 26. I also had hepatopulmonary syndrome as result of my chirosis. It was fairly asymptomatic at the time.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 15 8:41pm
In reply to @jmp1234 "Ty. Meld was 31 and dropped to 23. I was removed from unos in no uncertain..." + (show)
@jmp1234

Ty. Meld was 31 and dropped to 23. I was removed from unos in no uncertain terms by mayo at literally last minute. Was told they do not operate for liver transplant with the newly discovered issues. Am seeking a more confident / experienced team for this. University of Miami was advised as familiar with my type case and has experience. Going to Miami tomorrow for Tuesday evaluations and registration as patient.

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@jmp1234, I hope that tomorrow will be a day of good news for you.

I don't remember if I shared this with you, but I also had to be inactivated from the UNOS transplant wait list by my local transplant center due to lab indication of cancer. To our great disappointment, they were not successful in obtaining tissue for biopsy. And so my local transplant center arranged for me to go to Mayo MN for testing. However, I wasn't able to get to the appointment for testing because my kidneys failed! I was on emergency dialysis in ICU before I was flown to Mayo. My story ended on a happy note: no cancer, re-evaluation, return to UNOS wait list-liver and kidney, and a successful liver/kidney transplant.

I understand how you must be feeling and how difficult this is for you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 20 12:58pm
In reply to @yeknich "Mine took about 4 months. I had a Full Liver Transplant. I know some pre-transplant times..." + (show)
@yeknich

Mine took about 4 months. I had a Full Liver Transplant. I know some pre-transplant times can vary depending on which Organ you need.

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Hi @yeknich, I wanted to say, welcome. Congrats on the new liver. When did you have your transplant? How are you doing now?

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jmp1234 | @jmp1234 | Jul 21 10:00am
In reply to @parrot53 "Rosemary, Hoping your recovery and PT are going well and that wrist is beginning to feel..." + (show)
@parrot53

Rosemary,
Hoping your recovery and PT are going well and that wrist is beginning to feel normal again.
Thank you so much for catching up. I have been so fortunate with the care I receive at Mayo Jacksonville. My tumor was ablated in 22 and I have had good liver function and no tumor recurrence for two years. As a result I have been taken off the transplant list and will continue to be monitored four times a year for the next year and then we will reevaluate, I am aware that there is a possibility of new HCC due to the cirrhosis but I am feeling very grateful for this opportunity to be well.
Everyone here on Connect has been so supportive and helpful. I am so thankful to have you all.
Be well and happy.
Susan

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I was dropped from unos at last minute (literally) for liver transplant. Portal vein issues. Once my meld was verified prior to that I was on list 3 weeks. At university of miami transplant institute now as per mayo recommendation and after c
Dr and selection committee meet I expect to be on list that week . Miami dr is very versed in procedure and confident committee will agree with him and mayo that I am fit and ready hth

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mahoganymb | @mahoganymb | Aug 6 2:10pm
In reply to @mkhogan "I had liver transplant. Mayo rochester. After my PCP referred, it took 3 months for initial..." + (show)
@mkhogan

I had liver transplant. Mayo rochester. After my PCP referred, it took 3 months for initial consultation. Then met with two doctors and decision made I should have full evaluation by department to see if I was eligible. That is when I was assigned Nurse coordinator and the appointment department called and a full week evaluation was set up with numerous departments. I had to stay in rochester for that because long days at clinic going through evaluation. You are required to have a care provider when transplanted who commits to staying with you through recovery. That person was with me for initial evaluation. At end of week you meet with assigned doctor to go over all evaluation. If appropriate at that time, your dr takes your case to the full committee who meets weekly and the decision will be made if you are accepted for transplant. That happened the week after my evaluation was
completed. From there you start frequent monitoring and testing to monitor status. When you hit certain status you are "ACTIVATED"on the UNOS list for donor if doing deceased donor. That basically means you have done all required procedures and are ready if donor becomes available. You wait for suitable donor based on your place on list. Watch your MELD score closely, which is measure of various blood levels. At Rochester they did not restrict distance. You just have to plan to be there within certain hour timeline. Can be approximately 8 hours or so. They tell you. You have to be ready and stay close to phone for call when it comes! Best of luck.

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@mkhogan Thank you so much. This is exactly what I was looking for. I just had my phone call with the nurse coordinator, and scheduling should be calling tomorrow. There looking at probably September for the testing. I’m hoping for a living donor transplant as my meld score is only 6, but I’m very symptomatic. I’ve had the TIPS procedure, and I just had an ECRP in Rochester. And that’s when I got my referral. It’s only been about 4 weeks, so things are moving fairly quickly. May I ask what your Meld is?

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mahoganymb | @mahoganymb | Aug 6 2:12pm

@lonnecka Has scheduling called you yet? If not, you need to call them.

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lonnecka | @lonnecka | Aug 6 2:27pm

No, they haven’t. Hopefully, things will go well. My husband has 28 appointments scheduled between next week & the beginning of September.

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2 replies
mahoganymb | @mahoganymb | Aug 7 9:18am
In reply to @lonnecka "No, they haven’t. Hopefully, things will go well. My husband has 28 appointments scheduled between next..." + (show)
@lonnecka

No, they haven’t. Hopefully, things will go well. My husband has 28 appointments scheduled between next week & the beginning of September.

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Yikes 😳

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 7 10:20am
In reply to @lonnecka "No, they haven’t. Hopefully, things will go well. My husband has 28 appointments scheduled between next..." + (show)
@lonnecka

No, they haven’t. Hopefully, things will go well. My husband has 28 appointments scheduled between next week & the beginning of September.

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I actually missed a phone response from Mayo 24hr phone line because I have unknown callers blocked from my phone, and it did not ring. This only happened once, though. (Not bad for 15 years).
Check your blocked calls. Mayo phone calls always reference Mayo Clinic as source of call. You might want to consider unblocking calls during this pre transplant period.

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1 reply
margui70 | @margui70 | Aug 8 12:58pm

It takes a while, my husband had all the evaluation tests at the end of July and yesterday we received the evaluation committee letter. We were told it will take about 6 months to get the transplant. I wish you all the best ! My advice since all this process is new and stressful to reach out to the Mayo Clinic to make sure your insurance approve the tests, if not just call you insurance.

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