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Post Info TOPIC: Still here..


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Hi Boxers, Those kind of calls send shock waves through your mind and body. Its so surreal To get the call. Luckly the first call I got was the real deal and I got the liver. On the drive over to Seattle I was all over the place emotionally, started crying thinking of the life lost and there familys grief and loss of loved one. Why me lord,why now,is this really happening?You get turned inside out both mentally and physicall. The call may have been placing you on a back up to the organ that was available at that moment, however they should have informed you of that fact and would have instructed you to start heading to Seattle. Have they told you where you were on the list? That info is available, call your pre-transplant coordinator and ask him. Have you talked to Ron  at transplant apartmen?     Keep your phone close at hand!!  RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18

Tig


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The old saying, “Practice makes perfect” applies in this case. It was a dry run and it provided you some insight into the real deal. Learn from it and let this serve to calm some anxiety when the call does come. You know now that you can do and are prepared to do it. This is really going to help. Listen to me, I act like it’s me! I’m just excited for you, we all are!

Hope you had a wonderful Christmas Day!



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Oh, so glad to hear from you! Been thinking about you a LOT ever since your last post. My mind had gone wild wondering, maybe she got called, maybe not ... so that makes two of us then, with minds gone wild?

Glad your bags are packed! Murphy's law ... the one second you are least expecting it, they will call again. 

The false alarms can be hard. From pumped up to the extreme, back to doldrum wait mode.

Stay packed! I am glad you are ready, checked your list twice? If you think of a few other things that should go into that bag - DON'T unpack it to re-organize it, just slip it in, or start packing another case!

What did you end up organizing for the travel and stay for this big event?

I assume hubby is a big part of your support, do you have others who will pitch in, in various ways?

Energy is at a premium, hope Xmas things do not demand too much of you. Do some things to soothe and comfort yourself, wish we could do it for you. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Well they got me all pumped up for "the call" and nothing....probably a good thing, that little episode made it real for me, got my bag packed, last minute arrangements done and now the wait.

 



__________________

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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Boxers-

Sending you prayers and positive vibes!  I think 2018 will be a fabulous year for you and your new liver!

lm



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64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Well, hey, Boxers.  Good for you.  I'm flashing back to the day I got the call.  I was on my way to lunch when the coordinator called.  I got to the hospital around 11:30 AM.  It involved a bit of nervous waiting.  Our son texted a continuous stream of Gary Larson's Far Side cartoons to keep us focused.  Humor works wonders and stupid jokes are my default setting when I'm nervous.  We had a bit of a wait while the logistics were sorted out and it was close to midnight when I was wheeled into the operating room.  The next thing I know, the the doctor smiling into my face, saying the new liver already producing enzymes!  Of course, I'll never forget him saying those words.  biggrinbiggrin

The waiting is the hardest part, as Tom Petty used to say, and you've done that.  And it's truth.  After the transplant it's back to work.  Congratulations, and thanks for the opportunity to relive it.  You're gonna love your new liver.



__________________

70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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What a way to end the year Boxers. Can only imagine all the feelings you are going through. There are no coincidences in the universes world. When it is meant to be it will. So as the others have said, pack your bags and as I learned....suit up and show up!

Prayers for you and your team.



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Boxers,

Sobbing is OK, that will come in fits and starts, it never lasts, just try not to go into permanent hair-straight back full-out panic mode. Just go with the flow, even if you turn up like a blubbering blob, NO one will be surprised. This is justifiable turn-into-blubber stuff time. You WILL the find strength to muster through ALL of this, I say you ARE going to surprise yourself on this.

All you really have to do is show up, when they tell you.

RC is right, your bags should be ready to go at the door by now. No checking twice.

Let the xmas shopping and everything else "go" if you have to, and/or, when you have to - EVERYONE will understand. YOU have an important date to keep, we all just wish we could KNOW (predict) WHAT date that might turn out to be! Tinder-keg time, hard and exhausting. Conserve some energy, go stealth as required, as much as you can or need to.

Just be as prepared as you can (I think you already are) - did you ever consider relocating, "early", (set up in your temp abode, for an unknown amount of time) just to be close(r) to the hospital. Would prolly be just as hard pacing and waiting in an unfamiliar abode, as it would be at home (maybe harder) but you would be closer, if that relieved you at all.

False alarms will be hard, the actual call to get you arse moving will be hard, just keep going with the flow (just as if you were a normal person!).

So close now, to making many, MANY things better, for so many people - for you, for everyone in your circle, and including those on the donor side, and of course for us too who are going to be so happy for your lucky day! 

Hang in there, deep breaths. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)

Tig


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Oh WOW! How exciting! This is happening fast, you’re not kidding. You’ll do marvelous, I have no doubt it will go perfectly. You’re ready and so is your team. If this is your time, be the first one out the door. What a special Christmas gift and blessing. When it happens, it’s because it was meant to happen...  Keep us informed! Good luck from all of us



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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My My, things are moving fast. I was Xmas shopping and got a call that I was made active and they have an organ so be ready...WHAT!!!! I don't know what the details are or if I will get called to come, local coordinator did not know anything about the donor circumstances but be ready if called. Went from shock to sobbing, this is an emotional rollercoaster. At the same time, I think about the donor and their family...Xmas time and dealing with this. I need valium! Waiting to find out if I get called or false alarm.



__________________

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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Boxers, 

I loved your title for this thread ... "Still here!", we know you are! We are all thinking of you right now, what with your last news update. You must be very busy, pre-occupied what with Christmas, and all, and NOW your NEW news, that your health-giving transplant "may" be underway sooner than you expected or thought. What a mind-shift. What a thrill, chill, scary, hopeful, relieving, mind-boggling time it must be for you right now. (I can only imagine what it is like to feel all those emotions, all at the same time!)

"Still here" is so apropo, entering into wellness is hard work, and lucky for you, you can see from SS and RC, as they are still here and becoming well, how their work is paying off. Good to see their words and experiences. New leases on life with a brand new lovely properly functioning livers! What a gift it will be for you.

We are all rooting for you, that it goes easy for you. Ya never know!, things could go even better for you than what others have encountered, less hiccoughs, never say never! That's my Xmas wish for you, that you are lucky, lucky, lucky in every way. (I think it has already started, your luck run, BTW). And forward thinking, that a year from now, you will be sitting pretty, riding high on a new healthy liver, getting better and better from the minute and second you receive your new buddy! smile C.

SS,

What a great report! Your milestones ARE just simply amazing. So happy for you, for all these good things. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)

Tig


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That’s a fantastic report! So much good news around here lately. I’m liking it!

Is it possible that your enlarged spleen is a left over from your previous 16 years of cirrhosis? I’m not aware of a resource on spleen involvement post HCV and TP. Certainly after 16 years you would’ve had some splenomegaly. Perhaps the recovery period is going to pick its own time frame. I don’t think you’ve got too much to worry about there. I was diagnosed with it and after 4 years SVR it is back to normal. 

Sorry to hear about the fall. We aren’t as pliable as we used to be! I’m glad you’re feeling better and getting that full range of motion in. Do one for me! wink

All in all, your report is excellent and were I to make a bold observation here... This shines like Success! 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Well, alright  ... My first milestone ...I am now one year post-transplant.  I had my scans and everything is dandy.  It was a hoot to read the radiology report from my MRIs and CT scans.  The operative words:

" ...The liver allograft has noncirrhotic morphology and there is no evidence of steatosis or significant iron deposition. No focal hepatic lesion is identified. The major hepatic vessels are patent and there is no biliary ductal dilatation.


I mean to say, NONcirrhotic - 18 years after my former liver was dx with cirrhosis, two years after HCC and TACE, one year after tranplant ... its a helluva thing. All blood work was normal as well, except the platelette count which was just below the bottom normal range (148 X ten to the blah blah). The MRI showed a mildly enlarged sleen, "splenomegaly". I'll have to research - I don't know anything about spleens other than they store dead reds. They did a HCV PCR and I'm still undetected. However, the HBV antibodies showed the HBV vaccination did not take and I have to do the series of 3 shots again. I think the suppressed immune system doesn't readily produce the antibodies.

So, at one year post tx, on reduced immunosuppressants - no mycophenolate at all and only 5 mg tacrolimus per day - and I'm beginning to really feel the passing milestone. The past year was focused on recovery and learning how to live as a transplanted person. Now I'm starting to look ahead and it's begining to feel normal. Whatever that looks like at 70 Y.O.

I do the scans again in six months, see the doc in 3 months, labs monthly. Kinda strange to have an empty calendar.

On another note, I tripped and fell a few weeks ago. I think it rattled my skeleton because I was soon riddled with pain - mostly in my shoulders and legs. Particularly my knees. Nothing helped. It took the joy out my daily walks. Depressing. It felt like gout, but indomethacin didn't touch it. Then I saw my exercise bike sitting in the spare bedroom and took a ride. And just like that, the pain in my knees dissipated. My son, who knows everything about everything, said it was because the bike exercised the full range of motion, full extension and retraction, while walking mostly involved hips. 'Specially with my old-man shuffle. So now I walk twice a day and ride the bike in between. Good thing I'm retired. I'm worn out, but my knees are functional again.

So that's mine. How're you, RC? Riba still raging? Hope you are seeing the light in the tunnel. Hang in there. BTW, I found a PM you sent back in November and responded. Didn't know to look for PM. Sorry 'bout that.

Of note, I asked the PA if he was noting a decrease in business after the DAAs. He said not really, NASH was taking up the slack and was an increasing factor in in liver transplants. Also, they're doing more live donor transplants.




__________________

70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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Hi Boxers.   Pack your bags, really, pack your bags!  It wont be long now. Have you spoken with Ron at the transplant apartment? If you need any help with that just PM me and I can help get you connected. I understand your emotions right now. Stay with it and I hope to hear from you.  RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18

Tig


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Hi Debra,

Glad you checked in! You need a big old cyber hug >>>>HUG<<<< wink  It's going to be alright, Sister. I can only imagine the anxiety and nerves involved in something like this. If it's any comfort, the people in charge of this program know what they're doing. It probably seems a bit discomblooberated right now which isn't an unusual way to feel at this stage of the game. Just know that each step you take helps clear the way to a successful outcome. Once all the t's are crossed, the rest of the plan will fall into place. When time comes, it's good to know that all of these plans have been tried and tested. They want all of the arrangements made and confirmed so you have as easy a journey as possible. 

RC spoke highly of the accommodations and organization. If you two are working together on this, I know he'll direct you as best as anyone can. Between him and Chris, they're good at this stuff. I know the confidence in all of this helps, but it doesn't curb the anxiety I mentioned. That will take all the strength you can muster, but you've shown us you have a lot of that, just look how far you've come! I want you to know that you're not alone through this, we're right here. Anytime you want to talk, vent, yell or anything, you have us to unload on! It doesn't have to be about the transplant, it can be about anything. We might be able to direct you around an obstacle or offer up a little comedy to keep you laughing. Don't forget to smile, everyday. Start with yourself, each day. Look in that mirror and remind yourself about the many happy years ahead. They're coming your way, soon! Start looking for a mountain top to yell from when all of this behind you. We want to hear you yodeling from the tree tops! (Take video, please, lol)

 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Oh my Boxers!

You sound like you are thinking your priorities through very well indeed, despite the self-defence numbness. It is shock, it can't be avoided, this is huge unknown territory to experience, for which no one can feel they are ready or fully prepared for, as you have no personal frame of reference, never done this before!, unless you're dragged through some false alarms which might allow some further practice to feel like you are still getting ready for something that is almost impossible to ever really feel "ready" for. It is good you have RC and SS, who do have experience, from which you can draw on, AND of course you can draw from the experience of all the members of your medical team. Believe me THEY have done all this before, many times! - you are in good skilled hands - all really have you have to do (now) is show up, whether numb or not, and be as strong as you can be.

What all you have been through already Boxers, I believe you are a lot tougher than you may think, or are feeling.

I hope you and RC had finished that prior discussion (a few posts down ) ... "Boxers. I will P/M you the transplant apartment phone number. I spoke to Ron the guy running the house and he looks forward to talking to you.  RC" ... and that you had the opportunity to talk with that landlord.

I agree, about gaining your doc's agreements about pain control by threatening their first born, I like this idea. Be a broken record on that issue, as this was one of your post-op concerns. I might also suggest gaining your doc's home phone numbers and putting them on your cell phone speed dial, and keeping your cell right beside you in your hosp bed and your self-controlled narc. IV pump your first few post-op days, warn your docs now, that you have their home phone numbers (and you know where their first born are)! That they have a choice, you would rather have concensus now, than having to resort to phoning them repeatedly in the mddle of the night from your post-op bed to get satisfaction.

Glad you shared that about your AB+, and the line-up. That, and passing all your pre-op tests with flying colors, and being HCV free, and getting an early chance to get a lovely brand new functioning liver, man!, things could not be better for you! The stars are aligning and the tides are turning in your favour now. 

Yes, PLEASE DO keep us posted, on anything! You must not know ... MANY here are and will be riveted on your good fortune! C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi Tig. My world is about to change. Had ECHO done Tuesday, got a call from Transplant Coordinator Wednesday and decision was made to fast track me..I have an appointment with Liver Doc. tomorrow and have to present my "lodging plan" code, I think , for how am I going to pay for my stay in Seattle. Coordinator said once she has that I will be activated if I am ready. I have a rare blood time, AB+ which is the universal recipient, there a 3 people in this group and I am first based on meld. I will definitely be contacting RC to find out anymore tips....I am numb right now, probably self preservation, otherwise I would melt down. I have to get this pain thing worked out with docs, threaten to take their first born or something  biggrin. Will keep those of you that are interested up to date...



__________________

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


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Okay, I want to know where our transplant patients and Friends are hiding? Boxers, you had a birthday and RC you’re getting closer to EOT Ville all the time. Hang in there buddy and kick some Riba Monster tail for me! Stay strong dude, you can do it.

Check in when you can!  



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Tig


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Hey SS,

I like the advice and experiences shared by you and RC. Having this kind of knowledge available is such a big plus. Personal experience is like no other. What a benefit, eh Boxers? I know you’ll do well. Keep crossing your t’s and dotting the i’s! It’s already coming together.

I agree, stay off horses for the time being! wink



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hey Boxers,  Like you said ... everyone's pain is different.  For me, pain just wasn't much of an issue after the first few weeks.  I came home from the hospital 5 days after the transplant.  For a couple of weeks, I couldn't roll over in bed without freaking out, but once I figured out the work-around mechanics and realized I wasn't going to eviscerate myself, it was manageable.  You'll hurt and move slowly, but it keeps getting better.  I still have half the oxy I came home with.  However, I caught a cold in the first week at the clinic.  Sneezing was panic time. Your docs will give you whatever you need for pain.

My advise is to walk as much as you can.  While you're waiting and while you're recovering. My TP was last November, and it was cold, but I suited and booted up and we'd totter off together, very slowly,  with our little dog for a 10 minute walk.  Then a 15 minute walk.  And so on.  The movement, the posture, it all helps to settle things down.  Helps move your bowels.  Which is not insignificant.  Opioids make my bowels very sluggish and stop me right up.  Don't miss a dose of senna and softeners!  

Then they removed the staples at 3 weeks post and it all became less.  Easier.  More routine.  A little more comfortable, the new normal.  I still whine about pain, and the meds had their sides,  and my knees are killing me, but mow I'm starting to sleep better, and overall, my whole trip has been much easier than I imagined it would be.  Different at any rate.  Like RC said, the first couple three weeks are the toughest

Walk a lot, and for pete's sake, stay off horses!!! 

 



__________________

70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016



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Boxers,

Re: Pain control ... forgot to mention this, but maybe you (and many others) are already well aware of this ...  but I'll bring it up here anyway. This may have been touched on already in one of RC's other threads (about self-controlled IV narcotic pumps in the immediate post-operative period), I think they are not only for things like LT but for quite a few other post-surgical procedures too - a tool they can utilize. Your hospital/ward/team may already have well-layed out, pre-planned use for these kind of pain control devices - I have heard nothing but good things about the use of them - pts' feeling much more in control of how much immediate analgesic they get, and how often (to pre-set maximum degrees). (I think) worth asking about in advance, may feel reassurring knowing they can or do plan to offer you this (in tandem) to the use of standard IV dosings (before the inevitable morphing of you onto oral routes for analgesia. I believe the use of "pt-on-demand" IV pumps (over-all) are short lived - they seem to just use them for a day or so. But if it were me, and worried about pain, i would be wanting that option in place, if it was available/offered, just in case I wished to maximize narcotics for the first day - even if I didn't end up pushing the dosing button! smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Just want to say Thanks to all of you, for all of your support. Even though the few people I have shared my situation with support me, they can never understand as well as you who are going through this ordeal, from diagnosis and treatment (drugs, Dr. appt., labs, radiology and potential surgery) and the emotional part. Each and everyone's perspective offers relief and enlightenment. I read each and everyone's comments and learn so much. So having said that, I want to tell everyone Happy Thanksgiving.



__________________

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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Everyone's pain is different for sure. I had a broken pelvis (horse accident) and didn't need pain meds that frequently after the first 1-3 days but abdominal surgery....cutting someone open is just not normal pain. They will like me so much more if I am not a raging maniac

 



__________________

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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Boxers,

sending my condolences on the passing of your sister. The trip to see the grand-kids will hopefully lift your spirits. Pain is no fun and make sure to take care of yourself and ask for help if/when you need it. 

 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Boxers. I will P/M you the transplant apartment phone number. I spoke to Ron the guy running the house and he looks forward to talking to you.  RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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BOXERS, reading your last statement gave me the chills.  I can COMPLETELY understand what your worried about. They will give you oxy 5mg at the rate of 2-3 every 4 hrs as needed for the first 2 weeks, then they go to 1 every 4 hrs as needed at week 4.  At week 5-6 they want you to start cutting back to 1 every 6 hrs as needed. All along after week 4 they tell you that you need to cut back. Thats B-Sh$t i think!!  I hurt and I just kept telling them I want more and that Was that. They use the (you might get hooked) to CYA.  You needto ask for  more if you need it.      Don't be bashful.     The first 3-4 weeks are the toughes, get through them and your on your way.  You can do it, look at all you have been through. We are not your average people, theres  something that we acqure along the way to a transplant that sets us apart from the crowd. We are a tough bunch me and you!!    RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Hi Boxers-

Canuck has said everything that all of us are thinking and in such a comprehensive and thoughtful way, but please know there are so many of us behind you and with you every step of the way.  I am so sorry to hear about your sister and can only imagine how that loss has exacerbated all of your other issues.  As others have said, please take time to mourn your loss and experience the emotions you need to feel in order to get through each day and move on towards the next.  I can't imagine a better medicine than spending time with your grandkids in Florida and hope that gives you renewed energy and positivity.

I certainly understand your fear of pain and agree with Canuck that you should get a plan set up in advance to assure that you do not have to suffer needlessly.

I am completely baffled by the radiologist spotting your non-existent gallbladder and think I would request that he not read any of my future scans!

Happy Thanksgiving!

lm

 



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay



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Boxers,

You have to do what the "mind" AND the "body" tells you to do, you have to, there is no choice per say, they come first, and mind and body can totally ignore the other mental bits of us who are wanting to be the boss of you, the bits of us who may be wanting to be in charge and deal with things in dif ways. The inner war (the rule-debating and deliberations that are occurring within you) are crowded, can be noisy, unexpected, intrusive and the concert often never "goes to plan". You have no choice in the matter, there are bits of us cannot be controlled - you will have meltdowns, cry, deny, bury, obsesss, dwell on the positives and negatives in no particular order (if you have ever fancied that there was or "should be" a particular order). You WILL deal with everything in your own way(s).

You have already been through much, and you know you will go through more, knowing this makes it feel harder, knowing things will be coming down the pipeline at you, on the other hand knowing there will be more things coming sometimes helps as it will not come as such a surprize and gives you a bit of time to get ready (whatever getting ready feels like for you), you may be able to develop self-defences, create sanity preserving tactics, make safegaurds/plan B's, that may help and comfort you through the times/days or events you are most frightened of. Personally, I think (#1) that you did a very good thing coming here (I KNOW I did the right thing coming here) the small bits of comfort and kindness I could derive from kind folk here (starting just with others ideas, info, experiences or perspectves) eventually ended up helping me immensely once I could think further about those perspectives and it did help me to be at least distracted somewhat from some of the more confining narrower negatives I had been stuck in. 

It is a struggle, and not what we want, but we are forced to wrangle our ways through it. You are already doing this (and quite well i think). We are own own worse critics, on how things should be done - pessimism and denial are my popular go to's! If we are honest, everybody at least dabbles in those as good healthy defenses. There IS no one right way.

I had a meltdown kinda like yours I think. Fell apart in a gynies office one day, much to her very confused dumbfounded shock, totally unaware or fully comprehending the unnerving extent of my other troubles and so unexpectedly to her (and only a little forshadowed to me) I was truly a walking (on- auto) wind-up time bomb ticking away, from packing and storing stress-luggage until I busted in her witness. My mind and body had decided i had made enough use of all my other devised coping tactics. In her office (and only seconds from making a completely clean get-away out her door to the fresh air outside), it fulminated and clocked in at critical mass time, I could not run either, as I was not dressed yet!, akin to a premature ejaculation I blew up (not hardly one bit of me in charge in any fashion), it hit me, or rather, i should say I "hit the wall", unavoidably (according to my otherwise wanted rules), it was not pretty nor hardly intelligible (why is it that people whenst you are in midst of a true meltdown, insist on trying to make you try to communicate the reasons and such, maybe an hour later she would have been able to discern an intelligle syllable or two out of me)! All was just what it was and had to be. My stessors would appear puny compared to yours, I had been sitting on what felt like a powder-keg waiting-game of only 6 months to know if i was going to get into my trial, and was also still kinda PTS greiving about my Mothers passing - the biggies for me, and that alone was enough to cook me up into a froth, at least once.

I only blather on, for you to compare notes, that I think you ARE doing what you need to do to get through all this. We here can only offer what we can and hope something we bring up sticks to help in some way. I know (for me) fear was the largest of my enemies, I ended up countering it as best I could with dif defences and did better becasue i KNEW I had so many freinds on my side, from those docs of mine, to even the nurses that i did not always like, and very much from every single one of the folk here who i knew had my back and tried everything they could think of to support me.

One cannot measure their fear and grief against anothers. You already have and will develop even more tactics to get through all that is thrown at you.

I am sorry you have lost your sister, and a little angry you also had to deal with that weird radiologist "oversight" (criminal asleep at the wheel in my books) on top of everything else that has been dumped over onto your pile of the teeter-totter. 

Keep knowing that we are 110 million percent behind you, for what that is worth.

Another way of looking at your bigger fear of "pain" versus the surgery itself? ... you may be right, pain could be your biggest fear, when you look at the stellar results we see nowadays about how well LT pts do after surgery as far as successfully regaining a long normal life again, your LT outcome is going to turn out well, but ... you are allowed to be worried about being in pain (in advance) - pain management should be far simpler to deal with, prevent/minimize, because that is an easier task to execute as far as the science involved, compared to the surgical skills. Discuss the pain fear thoroughly with your docs aforehand - that one I am sure they can and will address - get them to outline their pain relief promises to you - they will not want you to be stressed in pain. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Awwww sweetie,

First off, I am so sorry about your sister.  Grief can be very overwhelming. Allow yourself to weep and talk about her and think about her.  Grief is a form of love.  

Second, Its good to hear that your ablation worked on that big tumour....maybe not so good to hear about your (reappearing) gallbladder.....sheesh...

Alison 



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 



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Well had the MRI and it looks like the ablation took care of the lg. tumor and the small one is unchanged however I just read my report online and it said my gallbladder looked normal..ugh! I don't have a gallbladder. I emailed my doc to let him know I was concerned that there may be other errors in the report, jeez I thought a gallbladder would be pretty easy to spot. Went to my primary GP yesterday for a RX refill and broke down, surprised myself. Unfortunately my sister died 3 weeks ago and I guess all this stress finally caught up...I tend to internalize stuff. Florida is next week, kind of bitter/sweet. I will get to be with grandkids but I also planned on visiting my sis.

I am so happy to read about all these lucky people that get the harvoni on their first try and get cured. I believe they will have a vaccination in the future, just like Hep. A and B. RC I am a real wimp (for a few days)when it comes to pain, I know this surgery is way more than anything I have ever experienced, please tell me they don't leave you hanging when you are in pain. There is such a concern about opioids that I worry they will just give me Tylenol , Motrin or something like that. I worry more about pain than I do about the surgery, how silly is that? Canuck, thank you for all your positive energy, you and the others bring me back from the abyss when I am down. Everyone is so kind, thanks for listening.



__________________

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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Hi Boxers,

(As per your post at the start of this thread) ... you WILL be lucky, and, you ARE strong! And my fingers will ALWAYS be crossed for you!

Good you are wanting to get this MRI done and known, then, you are free to "do" Florida. 

Do you get to see the docs (before you go on your trip), for feedback on the MRI, and so you have an opportunity to present them a new list of any questions??

Sorry about the fatigue, know that we are all pulling hard for ya! (Can you feel it?). It's just too bad that it is just you that has to do all the heavy lifting. If we could send some of our spare energy/strength, we would - (we are!)

What you are going through is not easy stuff, none of it is. We all wish we could make things even just a tiny bit easier for you. Keep being tough, be thorough, (we know you have been), be selfish.  

Thanksgiving thoughts will be very special for you this year. My thanks will be centered around the fact that you ARE going to be cured and fixed and back to living a long life free of what you are enduring now. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi Boxers,

Glad to read here that you will have beautiful weather for your Florida trip. Wishing you the best of times with your family! We are here for you and I too am impressed by your resilience and strength. If that waivers at any time, lean on us.

ps



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Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, VL 4/8/12 weeks - UND, 90 day SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND at 13 weeks!

Club Zero Member.

PoloSilver



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Hi Boxers.  Im doing ok.  Just taking it one day at a time. Lots of anti drugs to take and im Looking forward to them tapering me off them.  Its doable but just not happening as fast as I expected. (Recovery that is).   They will test you for the CMV and also test the doner liver for CMV.  The best outcome is Neg/Neg, however pos/pos is just as good.  What you dont want is you neg and doner pos. they will treat you with anti virals to keep you in check.  my outcome was Pos/Pos.  You can call and ask your T/P coordinator about the shingles vac. It would be a good idea to get it before transplant.I know what you mean about sitting on a time bomb, just remember the team is blasting the tumors and that will keep you on the list. Your a tumor maker like me!!   Its been 3 months and things are finally turning the corner. I can move around better and not as painful. The Ribavirin is a big bump in the road, I wish I could have treated with sof/vel/vox before the L/T. Treating after l/t is slower because of the low immune system, not enough soldiers to fight the virus. Thats why the extra 4 weeks and adding the riba.There will be some dark days but just keep your eye on the prize, because everything will pass. Let us know what the Drs say about the numbness? Enjoy your trip to the land of the gators!   RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18

Tig


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Hi Boxers,

We’re all anxious to know how things are looking. Your doctor’s initial report on the ablation sounded very promising. Everything at this moment is preparing you for a successful transplant and long life ahead. It’s worth it, every bit of it. I know your family feels that way and those grandkids need their grandparents! I wish I could somehow tap into their endless energy. Wouldn’t that be nice?

It must seem like such a daunting task and road ahead for you. I read the fatigue and concern in your message, but remain totally impressed by your drive and motivation. Don’t lose your desire, even when it seems like the chips are down. I hope you will lean on all of us for some added strength whenever you need a boost. Whatever it takes!

 



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges

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Hi Boxers,

not sure where in FL you are headed but we just got a cool front and less humidity so you will have some beautiful weather to enjoy with your family. 

Wishing you the best!



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Seems I am always doing something or sleeping...tired all the time. Going to Florida on Thanksgiving with grandkids. Trying to accomplish all the stuff I want to do before I go on the call list. Go in next week for a follow up MRI on the ablation and take a look at the two tumors. I think I have all my pre-transplant stuff done. I noticed you were talking about CMV...I was going to ask about a HSV vaccination since it was never mentioned. Sure would hate to have a shingles outbreak. RC, sounds like you are pushing forward. I found that interesting about the loss of feeling from the incision. I knew that parallel incisions on the abdomen would cause numbness between the two incisions but was unaware that this incision would do that, another Doctor question. RC are you feeling better, getting around well? Hope I am as lucky and strong as you. I will be so happy to get this MRI done, feel like I am sitting on a time bomb. Keep your fingers crossed for me.



__________________

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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