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Post Info TOPIC: Transplant done


Guru

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RE: Transplant done
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Aw! aww C.



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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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Hey Boxers,

I remeber you mentioned horses and, of course, you have boxers. Here's a pic of my Border Terrier meeting one of our horses ... she was a pup.

You'll be home soon.




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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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SLEEPING???? Ha! For me the main side from Cellcept and Tacrolimus and Prednisone was insomnia. I learned to lay quietly on my back and rest ... just kind of meditate instead of tossing and turning. It worked, but it wasn't sleep, although I did fall asleep for periods. I don't think I really slept till they abruptly stopped the cellcept about 6 months post. Now I sleep better than I ever have. Although I've stopped taking afternoon naps -  and I had learned to appreciate a nap.

But hey, that was me. I chose to not take the sleeping meds the TP Team offered. I've never liked or had luck with sleeping pills.

They remove the staples at my center on day 21. It made a difference. I felt less-Frankenstein-like. Less likely to unzip.

Boxers and RC, did you guys leave the hospital with the drains in? I have a friend who had heart and lung surgery a couple of years ago, where they crack your ribs. With a liver transplant, they stretch them, but leave the sternum intact. When I asked my bud how that was, and about his incision and staples, he said the worse thing was the drains and the scars from the drains. His incision was vertical. I was lucky and had the drains removed as I was packing up to leave the hospital.

One more thing .... my recovery wasn't linear. There were ups and downs. I learned to trust the team, let them know everything that was happening, and ride it out.  Some days the walks are harder than than the day before.  But we walk, eh?

So happy you are doing so well, Boxers. So happy we all are.  

Amazing!



__________________

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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Man boxers - you sound like you are doing SUPER!!!!

I am just amazed, every time I speak to you and RC and SS, just how amazing this all is ... right from how amazing the donors and families are, to the evolution of skill of the docs and teams/science involved, to you amazing people who are so brave and deserving of this second chance at healthy life, instantly having your Ca gone, gaining long life spans once again, in a balanced working healthy state. Just wow.

Nice your sis came too. Good you are just doin everything you are told to do. That must be working, as you sound like you are progressing so well and so fast! 

I hope the immediate post-op recovery period went OK, with sufficient pain meds those first days? I know you said that was a quite a big concern for you, and rightfully so. What do you take now for pain?

I know you are now busy, working hard at healing, improving incrementally step by step, following their every instruction, and please do just concentrate on that and trying to get to feeling as best you can as you go along - but in any becalmed spells, ONLY when you have spare time from the important tasks at hand, at some point let us know all the drugs they have you on - that would be riveting info for us medico-nerds.

This unnerving thing (of being trussed up with staples), sounds familiar to some of the stories RC and SS shared about rolling about in bed at first - they can reasure you, they did not and you are not going to fall apart! Believe me, those docs got more of their handi-work inside of you holding all things in place. Movement is our friend, but also, slow and steady wins the race. Hope you are sleeping good enough?

Another day done, another day toward more wellness, and other day closer back to home again! Wow! - I just keep sayin that don't I. biggrin 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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Congrats on your new liver.  biggrin



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52 yrs female, Northern California, DX 2007, GT1b.  Let it go for 10 years.  First Treatment:  Mavyret 8 week starting April 11th to June 5th, 2018.  Viral load was undetected after 4th week of treatment.  See Pre-Treatment Test Results in Bio.



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Hi Deb. Your doing sooo well.  It sounds like your breaking all my records for a speedy recovery.  Ask Anatoly if he remembers me from Aug 14th 2017. Im very impressed your walking and doing so much so soon. Dr P also did my transplant, with Dr Anatoly assisting along with about 8 other people in the room.  You probaly wont see Dr P that much but you will see Anatoly often.  I started with Kimberly and then i had Lizane and now i am with Melissa. I will look you up next week when we come over. Its going to be so nice to put a face to my forum buddy!!I  will be sending you a private message to get a few details about our visit. At 2 - 3 weeks my incision was still weeping so it sounds like your ok. The staples come out around early week 4.  I asked them to let me keep mine in as long as possible and they did.   You beat me by one staple, I had 67. I wrote a letter to my donors family 2 months after my L/T and did not get a respons. It was too soon for the family so I will write a letter in the next couple of months. I really want to know as much as i can about my done. I hope the family will respond.  You are so lucky and deserving. What a blessin.  Looking forward to your recover.   RC



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 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 Canuck, Yep, I can't believe it either. It is a bit of a whirlwind once the wheels start turning. I am doing extremely well, knock on wood, according to my Docs and their staff. I do everything they say, I do have to get used to drinking more water though. I know how important it is and I just have to sit the bottle in front of myself as a reminder to keep drinking. I go in next Tues. to maybe start pulling some staples (68) that has me a little nervous, not so much about pain (the abdomen is really numb) but opening and getting infection in the wound. I will be happy to answer any questions I am capable of answering, would love to be able to help in future transplant people. Thanks for all your up beat comments, smiles are appreciated. Deb



__________________

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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Husband was here for two weeks and my sis relieved him...she will be here for two weeks and then I will either go home or he will come back....and yes, he is watering tomatoes lol! and kissing my pooches for me. I was pretty active before I came over, country girl, with 15 acres, horses, dogs, cat, garden..lots of stuff to do. I think my husband was in need of a break, I was pretty grumpy when I was uncomfortable and he like to "nurse" me too much. His heart is in the right place, we just needed "some space" lol. It is hard living in one room with someone for two weeks when you are both usually busy doing stuff independently. Don't mean to sound ungrateful but it was one of many changes (temporary) that you have to adjust to. Thank you for your kind thoughts.



__________________

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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Yes! I have some adjusting to do when I think about "my" liver. It is a strange feeling, wondering about the person that donated, what my body thinks about it...just making it "mine" will take some time I guess. It is a process, I am not sure what is around the next corner but I do know I have good support from my family and all of this group. I trust God will take care of me and show me how to take care of myself....not to mention a nagging husband lol!



__________________

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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Thank you Tig, all the kind thoughts, advice, and just listening helped and helps probably countless people get thru this terrible disease. This is a great support group for people and their family/friends. I so hope people get diagnosed early now with Harvoni available to avoid all of the horrible complications. I will post every few days or if something changes.



__________________

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 RC, my surgeon was Dr. Precht (sp. may be wrong), Anatoly and not sure who else but I did meet a man at my clinic visit that, after talking to me for a few minutes, I had to ask who he was..haha, he said he was one of my surgeons, so I clearly have no idea who all was in there. My coordinator is Kimberly but it seems I talk more to Melissa than anyone. My sister is here with me now and we went on a "ride the ducks tour" in Seattle land and water today. I was out and about for 7 hours, I was running out of gas at the end but that is ok....I can sleep in lol! I plan on doing something everyday, weather permitting. I would love to see you when you are in town. Just give me a heads up and we will figure it out. I am at the Nexus room 148. I will also check on here. 9 months, Wow! They told me in 6 months I will much better but to honest, with the pain meds, I can get around better than I could have ever hoped for. I take 10mg every 4 hours unless I sleep thru it  that keeps me going, I would not do that well without it because I am a wimp when it comes to pain. I do have a lot of drainage (not infection) at the incision/staple site on the far right side. They don't seem to be worried about it. I will keep you posted and look forward to meeting you and your wife. Deb



__________________

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 Deb, Just got the good news! You sound like your doing great. Who was your surgeon? Who is your coordinator? How do you like the Seattle Transplant Team? Enough questions for now, but there will be plenty to follow. Keep at the walking, I dident and today its hard to do 1-1/2 miles. Walk and move all you can and you will be going home in 4 to 5 weeks. That first couple of weeks just after transplant are tough and it sounds like you are  breezing through it without any complications. Your body (immune system) and your NEW HOPE seen to be getting along nicely.I will be in Seattle next thursday-Friday for my 9 month post Transplant check up, Can I look you up then?   PM me if that sounds ok?  Keep us all posted please!   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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Good Morning! What a wonderful way to start the day. I’m so happy to know you’re done with all but the recovery. You sound like you’re in good spirits, maybe a little shell shocked, but positive. That’s the first of a thousand steps you’ll be making, but walking 3-5 hours a day will get you where you want to be!

Take all the time necessary to do this right. Lord knows you’ve worked hard to get to this point. When you can share any news and updates, you can count on all of us sitting up and paying attention! I hope you got the chance to meet RC. I know you’ll be fast friends! All of our transplant family members are tough, tight and resilient!! Congratulations on your special gift...

Good luck to you!    



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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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Ahhh, Boxers,

I am so very happy for you and wish you and your new liver well. I don't remember how long it took for me to adopt my new liver as my own, and not think of it as someone else's liver chugging away, but I expect you too will have that feeling soon. It won't be long, boxers, till your new routines become normal.

Meanwhile, do what you are told to do. Keep walking ( 3-5 hours!! Bravo), and, of course, drink water. Keep the kidneys floating.

 

Whoopee.



__________________

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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YAY boxers!!!  Congratulations 

I am so happy to hear that you got a shiny new liver! I knew the right one would find you. Im super impressed that youre walking 3-5 hours a day! Seattle is a beautiful place to be doing that, so much healing green colour to immerse yourself in.  And if the weather there is as pleasant as it is 5 hours away in Vancouver, so much the better. 

  As Canuck asked...is your hubby there....or is he home watering tomatoes? 

thanks so much for updating us, we have all been anxiously waiting to hear from you.

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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yay boxers biggrinbiggrinbiggrin



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=33,00039.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=Waiting for 3mo.VL.July=norm liverpanel.



Guru

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WOW Boxers. Hoo-ray! So glad to see a post from ya. biggrin Holi-cow, 11 days. Don't know where to begin with questions, that could be endless - just share what you want, when you want. Concentrate on #1, and take it as easy as you can. What!?- walkng 3-5 hrs per day!? Oh my, I am just so, so glad you got 'er done! We've been sitting on a tinder box here just busting waiting to know you are OK. Congrats. Is hubby with you - whereabouts are you, are you staying at the same kind of place, or same place as RC was? I'm mind-boggled too. Just so happy you got a brand new lovely liver!!!!!!!! Un-real. biggrin 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)



Veteran Member

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Got my transplant on the 12th...so far so good. I am staying in Seattle until they give me a pass to go back home where I will be followed by my Dr. over there. The whole thing is so surreal, I am still trying to wrap my head around it. Sorry it took so long to get back on here but I was having computer problems. I have been making myself walk 3-5 hours a day (not an easy feat on some days) and doing all the appointments etc. Thanks for all your thoughts, I don't know where to start about the thing but will happily answer questions to the best of my ability. For now I am hoping my new liver likes its new home.

 

 



__________________

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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