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Post Info TOPIC: dual hospital register


Veteran Member

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RE: dual hospital register
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Thank you C...maybe just some validation is what I needed. Nice to have a resource when I am confused.

Debra



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 



Veteran Member

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Thank you, Thank you, Thank you! Can't believe you have the energy to help others right now. My blood type is AB+, can't get any better than that. Yes, I did have a previous MRI which I am embarrassed to say, I don't remember for sure what the problem was but I believe it was HE and they checked the TIPS for patency. My GI in Spokane did see the suspicious areas (2)on CT in March and wanted to "watch it" he has me scheduled for repeat CT in Oct., guess I won't need to do that. One lesion is unchanged and the other went from 1.9cm to 2.4cm since March. Not sure what area of the liver....haven't talked to anyone in person yet...appt. in Sept. with hepatologist/transplant referral doctor  in Spokane. If they decide to do ablation they will do it in Spokane according to NP.

Yikes! I am talking toooo much. Please rest and give me your thoughts when you can.

Debra



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 



Guru

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Hi boxer,

I'm glad you have come here. I'm so sorry for your troubles.

We will all try to help where we can.

Good info you have recieived thus far, and from our RC's personal expertise.

RC said once (I think with an understated sigh) "it's a process"! 

Understand (completely) why you say ... want this tumour treated asap ... and ... I have never had such difficulty making a decison (in regard to how to best obtain the help you need quickly). Such stressful circumstances to be in and to have to deal with. But, you already partly answered your own questions ... one problem at a time, so I guess I will focus on the lesion first ... Keep being methodical in your quest of all.

You are already doing your best, seeking advice, opinion, thinking out loud, keeping tabs on what your doc(s) are doing and how you can push the asap envelope. RC's advice is invaluable, heed it. I am grateful to your doc who insisted on the MRI sooner than later. I am glad YOU phoned for the results. I'm glad your board date is earlier than later - you have already succeeded on these important fronts. 

You have already been through A LOT! Preserve your strength and sanity, proceed as methodically and quickly as it will happen for you. At times (obviously) the speed of things will never occur fast enough. Do you also have others around you who are good helpers? We will all try to help as well. Know you can count on us.

You sound like you ARE approaching this in the MOST effective ways you can, and that IS what counts. 

Not on any kind of your scale, but I was desperately seeking the right choices for myself, trying to get the right doc(s), the right facilities, the right treatment drugs, and ultimately, got my trial, I was fearful and used the panic to propel me to the goal. I did succeed in getting myself well-positioned for success, so it turned out well, but as far as influencing the time factor, not so much - it was a process.

Yes, you can try to stay calm, not panic, but regardless of all, keep working methodically, as you have been thus far. I am glad you came here. Keep us posted on what you are thinking. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Veteran Member

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Hi Tig, thanks for getting back with me. I have had bleeding varices with multiple bandings, ascites which resulted in a umbilical hernia that became incarcerated and required surgery, HE (thought I was having a stroke the first time), and TIPS. They did the TIPS to help with the ascites and preserve the vessels that I would eventually need to receive a TP. Had my phase one TP eval. in July and TP Dr. ordered an MRI which showed the lesions (2)....lesions were there previously, since Jan. but Spokane GI wanted to "watch" it. TP Dr. said no...he wanted an MRI and the rest is history. My meld was 15 when they decided to do the phase one but it dropped to 14 in the mean time. I would bet that RC had the same surgeon I saw at Swedish (Precht...I know I miss-spelled this but pretty close). I know UW does way more transplants but I am afraid it will be forever to go thru their process, get on the list and then have to wait 6 months. I have never had such difficulty making a decision confuse....one problem at a time....so I guess the I will focus on the lesions first. Thanks to you and the rest of people that support each other.



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 

Tig


Admin

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Hi Debra,

I'm sure you're about to pull your hair out waiting for an answer. Especially when you're not getting anywhere with some of the people you're forced to talk to. Don't let that slow you down, just keep on top of it. The end of the month will come before you know it, but waiting is nerve racking.

Hopefully RC will have a chance to explain some of this with you. Can you describe in more detail, what you know and what kind of testing has been accomplished so far? Have you met the MILAN criteria? I see you listed your MELD at 14. Are they waiting for tumor growth to raise your score? Did the TIPPS procedure change your score? Have you had any trouble with encephalopathy (HE). There are so many factors involved. RC or his wife Chris will have some  helpful thoughts and advice on where to turn for more information.

I thought you might be able to get some help in Spokane, but Providence specializes in Hearts and Pancreas transplants. University of Washington seems to be the place in Washington for livers.

Here's some reading material. It may help to inform you on part of the process. If I can help you track down anything, let me know.

Organ Procurement and Transplantation Network



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Veteran Member

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Thanks Jimmy, I have been following his (RC) posts....that (Swedish)is also where I would get my TP. The Dr. office called me to let me know that they will review my case with the tumor board 8/30...better than 9/20. I guess you have to stay on top of your stuff to be sure you don't fall in the cracks.



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 



Guru

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Greetings,

I do not have an answer for you. Others may.

http://hepcfriends.activeboard.com/t62140341/the-hcc-treatment-train/#lastPostAnchor

First and most importantly, don't panic. That is a lot to take in and the way you found out is a bit upsetting.

I want you to hook in with Robert, one of our Mods who is presently in the hospital recovering from a successful transplant.

He will be a wealth of information for you.

Warm Regards

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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Do most of those that need a transplant try to get on the list at more than one hospital? My transplant Dr. is more or less a recruiter for Swedish (we are on the east side of the state). Had MRI on Mon. the 7th and never heard from him so I called on Friday, was told I have HCC...WOW! can't believe they never called. Then I was told that my case would have to go to the "tumor board" but it would be 3 weeks because they are on a 3 week rotation and they had just done ours...called today and talked to NP and asked her what day they would meet and she said he was out of town for 2 weeks and Swedish meets EVERU week to hear cases...WOW again. Do those of you that are dual listed feel it effects your chances for a transplant in a negative way? Probably a dumb question but I am extremely worried....want this tumor treated asap.



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 

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