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Transplant Evaluation - What to expect
We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!
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@beckyy39 That was never suggested for me, maybe it wasn't available then? I was incorrectly diagnosed as having essential tremor around 2006. It may not have helped anyway since mine was from my developing NASH cirrhosis. Cirrhosis was not diagnosed until 2015 at which point the hepatologist said I probably had it for 10 years without having any major signs!
JK
Wish me luck! My evaluation starts in the morning!
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4 Reactions@beckyy39 I hope all goes well, and that you keep us informed. I'll be thinking of you.
JK
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2 Reactions@Becky39
I think you are going to Mayo Jax
I was there last week for an EDG and Colonoscopy. I have Stage 4 cirrhosis with a Meld of 8. Been this way for 3+ yrs! I have been to the eval. and it is rigorous! You will learn sooo much
Keep notes and write down questions every night you are there.
All of the Drs. are amazing. I have been to 4 on the team. The PAs are very important and your link when you have concerns going forward....they are awesome too.
Let us know how you do and ask me anything.
We may run into each other someday at what I call Disney World for sick people...LOL
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4 Reactions@bamagirlgina
Hi! I go to Mayo Jax and can help you. The eval takes about a week 10 days and is rigorous. Guess it depends on your condition though.
We stayed at the Holiday Inn Express Med Ctr on Hodges. It is clean, reasonable and newly remodeled. Breakfast too but you will be fasting.
They will draw a lot of blood and you will get results on your phone quickly. Scheduling will work with you ahead of time and email your schedule well in advance. All sessions are excellent and very informative. Take notes and write down questions each night. Your eval will have you interview with psychologists, social workers, surgeon, financial people and more. Its all so beautiful there you won't believe its a hospital. I just had an EDG and colonoscopy and it was so easy and the staff was awesome.
I used to live near Mayo so I know my way around. Traffic is awful around JAX.
Let me know if you have questions...I will help you through the maze...that's what this group does.
Good luck!
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4 ReactionsHi! There,
I've undergone SCT on 02/12/2016 in Calcutta, India as a VGP patient of multiple myeloma after completion of six months chemotherapy. It was quite an experience passing through the entire procedure. Now, since I've taken up my last 3 yrs. as most educative for changing entire concept of my life and making me evaluate it. I want to exchange my views with the people connected with the disease and the survivors as well. For any kind of further information is welcome into the matter and will be well received by me like an enthusiastic child.
Thanks & regards.
R.K.Ojha.
@rajendrakumarojha Hi R.K. Welcome to Connect. I am post-transplant (liver) but I have no idea at all what SCT or VGP mean! Would you mind explaining? I did google it but it seems those initials stand for more than one thing.
JK
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1 ReactionHi @rajendrakumarojha, welcome to Mayo Clinic Connect. As someone living with multiple myeloma and having received stem cell therapy (SCT), you might be interested in following the Blood Cancer group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/
Here are some discussions that may interest you:
- Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/
- Stem Cell Transplant: How does it affect your eyes? https://connect.mayoclinic.org/discussion/stem-cell-transplant-1/
Hi! I used the terms SCT & VGP as been used by the hospital in Kolkata,India at the time of transplant. In multiple myeloma they use 6 months Chemotherapy to remove M bands in blood and then take out approx. 3 million Stem Cells from blood for transplant. SCT stands for Stem Cells Transplant and VGP stands for Very Good Progress of the patient.
Hope, the reply clears the terms.
Thanks & regards.
R.K.Ojha.
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3 ReactionsThank you, @rajendrakumarojha I feel educated! Unfortunately though, this is an area where I am totally unknowledgeable but @colleenyoung has some great suggestions, I hope you will find them useful.
Congratulations too on being a VGP patient!
JK