Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: bubbles62 on September 18, 2016, 06:35:48 pm
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hello all--new member here , After 30 years infected i am free of hep c virus (have cirrhosis though)after 12 weeks of harvoni---just a rant i guess .
when i went to have varicies checked the dr told me the were very minor and to recheck in 2 years. Then i went for a scheduled ultra sound and when i returned home , within an hour my hep nurse called and said we found a couple of spots on liver during ultrasound and that they have to send me for a mri . Well that was three months ago and no word from any healthcare people at all-(not sure if an appointment was even made)- i phoned hep nurse twice and left a message and sent an email as well to check on appt and let them know i am willing to travel around the province to have one. I work at a major hospital that performs mri everyday and could fill in for a cancellation immediately.--After 2 weeks i get a reply from hep nurse advising me to call her secretary and check with her. I am so stressed out and worried that this is cancer that i cant enjoy being clear of this awful virus. I am having some discomfort in lower torso area--almost like a pulled muscle---I am just so stressed --seems like the clinic is forgetting about me :(
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Sounds scary, Bubbles.
Get back onto them, and tell them you need this test yesterday.
You are in my thoughts and prayers.
We are with you.
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Oh my yes don't let them forget about you CALL THEM and call them again get that appointment ASAP! If possible show up at the office be the squeaky wheel on the one.
Not to frighten you but we lost a member early this year she was cured and then something showed up on her ultrasound. Get that test!
My thoughts are with you too! Please let us know how you are doing!
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I can't believe what that clinic is putting you through, Bubbles. It's inhuman and makes me furious. If you've got spots, you can't wait. They should have called you in for an MRI the very next day. Now, don't wait a day longer, put your stress-energy to work by dogging them. Get all over them, by phone, email, or any other way. If the nurse doesn't respond, go to her superior. Hell, call the directors of the clinic and yell at them. And if the clinic won't do it like right away, get it done yourself somewhere, anywhere. But get that MRI done. Now.
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well i just got off phone with hep nurse (told secretary i would stay on hold until i get to talk to her)--i told nurse that i was not too happy about waiting so long for a MRI-.
she told me that there is an extremely long list and she is doing her best. i reminded her that she called me after my early July ultrasound(one hour after i got home from appt.) and told me i really need to get in for an MRI , why would you call me like that and scare the shit out of me and then make me wait so long?--she then proceeded to tell me not too stress too much about spots as they appear to be fatty spots from what she and radiologist can tell from ultrasound (She also said my recent bloodwork looks great-platelets are even going up--were at 57 now at 72).--i told her i was very stressed out and that i wanted a mri asap! --i hung up the phone and 10 minutes later the secretary called me back and has an apt for mri in November or sooner if there is a cancellation.. i am wondering if i am getting slower responses because i was in clinic twelve years ago and refused interferon treatment--they had everything set to go and at the last minute i chickened out and didn't go back to clinic until i heard about harvoni----so it looks like november for me
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Hi Bubbles,
It sounds as if they at least have a sensitivity towards your situation now.
Maybe they'll be able to flick something up for you before November?
... Maybe a gentle check in with them in a week or two?
Easy for me to say, I know.
(There won't be any weirdness there because you backed away from that interferon treatment.
They're in a constantly changing scenario - and besides, everyone knows how crap interferon treatment is).
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November? What kind of health plan is it that allows you to get an MRI at only one place? Why can't you do it where there's less traffic?
When I hear these things I get so angry. I left the States twelve years ago because of the terrible health services there, the inaccessibility, the indifference, the bad attention, and the unbelievable costs. Even here in the so-called third world (Argentina) no hospital would dare tell a patient they had to wait three months for an MRI after spots were found on their liver. Such bad medical attention is unthinkable here, or anywhere else in the civilized world.
Of course, in the States you can take a hospital or clinic to court and sue them for bad treatment, which is much harder to do in other countries. But what good are the courts if you're dead?
M.
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Hi Bubbles,
I am sorry for the stressful situation you are dealing with. They tell you something so scary and then leave you hanging. It is always the not knowing that is the hardest. Well I will be hoping that the Nurse is right and it is not anything too bad. Wishing you the best and hopefully a cancellation will open up for you. Brie
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thanks all--unfortunately the Canadian health care system is very lacking , especially in the maritime provinces--to have one done out of pocket is around $1100(may as well be a million right now) --like i said before , i have been working in the hospital for 30 years and it does nothing to move me along the process any sooner , maybe if i was a doctor. i am very distressed about all of this and it is very hard on the head going to work everyday and keeping a smile for the patients sake -this looming concern has really deflated me on being undetected.. sorry for another rant ---both sad and angry :( >:(
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I am sure we all are sad, angry and concerned for you too
Hang in there we are all pulling for you
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My only experience of Canadian health care was a broken arm sustained in Cuba but treated in Vancouver, so what im about to say may be completely irrelevant, but in Australia they will get you in super quickly if they are really concerned. If it's a "we aren't really worried, we are just double checking to rule something bad out" scenario, you slide further down the priority list.
I've always rather liked the "no rush" tests. They reassure me. It's the "we need you here now" tests that concern me.
But of course all of this is from an Australian context. And I wouldn't be happy to be worried and waiting.
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Sorry to hear how dismissive you were treated by your health care providers. Be the squeaky wheel. It gets the grease. If you work there, stop in every day or every other day in the scheduling department and get your face in front of them. Sad but true, if you become a pest, they generally want to get you out of their hair.
Until then, use some imagery meditation, sending light and healing to your liver. Woo woo I know, but I believe!
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hello all--new member here , After 30 years infected i am free of hep c virus (have cirrhosis though)after 12 weeks of harvoni---just a rant i guess .
when i went to have varicies checked the dr told me the were very minor and to recheck in 2 years. Then i went for a scheduled ultra sound and when i returned home , within an hour my hep nurse called and said we found a couple of spots on liver during ultrasound and that they have to send me for a mri . Well that was three months ago and no word from any healthcare people at all-(not sure if an appointment was even made)- i phoned hep nurse twice and left a message and sent an email as well to check on appt and let them know i am willing to travel around the province to have one. I work at a major hospital that performs mri everyday and could fill in for a cancellation immediately.--After 2 weeks i get a reply from hep nurse advising me to call her secretary and check with her. I am so stressed out and worried that this is cancer that i cant enjoy being clear of this awful virus. I am having some discomfort in lower torso area--almost like a pulled muscle---I am just so stressed --seems like the clinic is forgetting about me :(
hello all--new member here , After 30 years infected i am free of hep c virus (have cirrhosis though)after 12 weeks of harvoni---just a rant i guess .
when i went to have varicies checked the dr told me the were very minor and to recheck in 2 years. Then i went for a scheduled ultra sound and when i returned home , within an hour my hep nurse called and said we found a couple of spots on liver during ultrasound and that they have to send me for a mri . Well that was three months ago and no word from any healthcare people at all-(not sure if an appointment was even made)- i phoned hep nurse twice and left a message and sent an email as well to check on appt and let them know i am willing to travel around the province to have one. I work at a major hospital that performs mri everyday and could fill in for a cancellation immediately.--After 2 weeks i get a reply from hep nurse advising me to call her secretary and check with her. I am so stressed out and worried that this is cancer that i cant enjoy being clear of this awful virus. I am having some discomfort in lower torso area--almost like a pulled muscle---I am just so stressed --seems like the clinic is forgetting about me :(
well it turns out it is hcc and am currently at 4 months on transplant list with an average wait time of 6 to nine months--transplant team seems confident that i will be transplanted soon --i have no other cancer and my work up went flawlessly--no acites no sign of vascular invasion and i am still working full time ... just makes me angry that i am 6 months behind on treatment due to the long wait for mri--my liver dr is not happy about this either and stated that my file should have went to him when i had ultrasound and not waited for mri --he suggested that i put a formal complaint in but i just want to concentrate on staying healthy at this time and not stress myself over something i cant change--i had some tace treatment done and it seems to have stopped the growth of tumor whic is under 1 inch--wish me luck as i am trying my best to stay optimistic about this frightening turn of events :(
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Bubbles62, I'm sure I speak for everyone who reads this thread that we are indeed wishing you luck. You're doing your part by wisely putting the complaint aside for now (why intensify your anger?) and concentrating on staying healthy.
While you wait for your new liver, what activities make you feel most fully alive? Whittling down duties to the bare minimum and increasing what feeds your soul usually makes the time pass more quickly, and it probably helps your immune system do its job better.
". . . deep peace of the flowing air to you
deep peace of the shining stars to you
deep peace of the quiet earth to you
deep peace of the gentle night to you . . ."
Gnatty
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OH my gosh Bubbles!
So sorry to read this news.
Wishing you to receive your transplant soon and a quick recovery
Please let us know how it is going if you can I guess there is often not alot of notice when you transplant is available.
Sending hugs and best wishes your way :(
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... Tough break, Bubbles.
I have wondered how you were doing - and, like the others - send you love and prayers - and all good things.
You can do this.
Something that may be of interest:
There's a blogger here - her name is Karen Hoyt - and she's been through the whole process.
I think she's part of a support network.
I used to read her blogs, and found them really inspiring.
You should check her out?
Once again - you know ...
Lots of love,
A.
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It seems 'the force' is with you Bubbles, in that, it sounds like you are going into this diagnosis in good physical shape, all things considered. It's good news indeed that the tumor is 'contained'.
I'm wishing you the best of luck in securing a new liver and renewed life. Stay positive! :)
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well it happened!
3 weeks ago while i was at work i got the phone call i have been waiting on .i was told to go home and get my belongings and make all the phone calls i needed to make as they finally got a compatible liver for me . then i had to return to the same hospital i work at and get admitted for transplant the following morning.
After 14 hours on the table , my surgery was deemed a sucsess, and i was off to icu.one day later i was sent to step down unit and two days after that to my private room. another week after observation and allowing incision to heel and control the post op pain i was allowed to go home , with biweekly followup clinic appts. my followup appointment yesterday was amazing with all blood levels right where they should be and was told i look fantastic. still have a bit of pain being controlled with tylenol and a wee bit of morphine. i am not saying it was all uneventful but so far i am very happy with how my procedure went---if anyone has any questions feel free to contact me
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Wow congrats on getting your transplant and so happy to hear things are going well for you post procedure!
Wishing you success with your continued are going
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Yes ... and from me, too.
It's great that you are sounding so upbeat.
Hoping that you are having a good day!
Best wishes,
A.
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What a great holiday gift! Congratulations, Bubbles! Please keep us posted on how you progress. :D
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Yeah Bubbles!
So happy to hear this. Congrats and I look forward to reading your updates.
Question: Do you recall when your last ultrasound was prior to the one they found spots?
Were you getting ultra sounds every 6 mos?
I am curious to know your timeline.
When was your prev US, when your hep c tx started, and when your last US was which appears to be July 2016??
Best of luck with your new liver!!
Greg