3 mos post tx update

[crossroadsec]

To encourage those who are still treating: I'm feeling sooo good post tx!! Still have 1 more varices banding tomorrow for a total of 4 since bleedout in May. I've had my teeth cleaned. I kept them all! My mouth was such a mess / ulcers and bled a lot. Gums are fine.

I've grown some veggies and culinary herbs. Pumping my protein up to 100 grams a day to help heal liver.
Insurance transfered me to a new transplant clinic and I met Dr. today. He's impressed that I'm alive and was confident in the 2 week UND w/ Incivik. He believes that the liver will continue to heal. He also thinks 24 weeks show great results, but is glad I tried for the 48. I made it to 43 before crisis.

I've got the ok to keep training for a 5K, but will have to wait a month and then walk it. I'm just happy to be under 16 minutes. Heck guys, those of you who kept me pumped up and informed during tx know I'm happy to be ALIVE!!!!!

Great healing times with family. Granddaughters roasted me yesterday telling stories about me laying in the floor crying when I couldn't find my shoes. I had them on. haha! Anemia was the PITS!

I'm feeling post traumatic stress at times. Anyone else? Anxious thoughts grab me and are hard to shake at times. I hate hep c and cirhossis. It's good to read your posts, see newbies, old timers, and see how well you take care of each other. I log on to the cirhossis site. It's cool and will be an asset to all of us at that stage.

I love you all. I'll get labs back Monday and post them. I'm weepy. Gosh I love you all. Shout out from the sista. I think I have to have a question. Uh. Anyone want to plan a reunion? lol

Love, Love, Love, Karen :)

[belle19]

karen, so happy to hear that you're doing well.  you sure went thru alot way back when and yet you still kept going.  i really admire your spunk.  it's been since may 25th for my EOT.  i've started surfing again and feeling good.  i still get tired but i am 62.  i hope i get more energy.  i also get anxious thoughts about my future and my family.  i was thinking about doing yoga.  i think it would help to ground me.  good luck with the banding.  let us know how it goes.  best wishes.  belle

[orphanedhawk]

Karen, I'm soo very glad you posted, that you're hanging in and doing so well.
Oceans of hugs,
OH

[nan535]

I'm feeling post traumatic stress at times. Anyone else? Anxious thoughts grab me and are hard to shake at times. I hate hep c and cirhossis.

For some reason this quote from your email was deleted each time.

Sorry
Nan

[nan535]

Karen
My post above was in response to your question below. Hope it made sense.

<<<>  

[nan535]

<<>>

Hi Karen
I found this forum after my husband was diagnosed with Hep C and ESLD (with advanced cirrhosis) in Dec. 2010. He too had to have varices banded, had portal hypertension, and hepatic encephalopathy.  He went through so much over 18 months. I never knew how strong he was. One hospitalization (due to infections) lasted 7 weeks. He had hepatic encephalopathy for 7 weeks straight,  Those of you who suffer from it know how devastating it can be.   It was a truly insane period. When he was finally discharged, he was unable to walk and was sent home in a wheelchair.   As I spent 20 hrs a day with him for 7 weeks, I  too felt I was suffering from PTSD.  
   When he was discharged, I decided we needed to feel like we were on vacation so I rented  furnished temporary housing for a month in a 5 star  apartment complex with a beautiful pool right outside our door.   Therapists and health aides came to us daily and within 3 weeks he was out of a wheelchair and walking with a cane again.
The point I hope I am making is yes this is a traumatic experience and we (both patients and caregivers) must take care of ourselves.
The apt. was expensive but worth every penny.

I wish you all the best, Karen. I know how difficult your journey has been.

Nan

PS  My husband had his liver transplant on June 3rd and is doing well.
No more encephalopathy...and the anxiety i(while not completely gone)
is much better.  I know it will take some time to truly get over this experience and trust that the worst is over.

[paen53]

Glad to read that you're doing great, Karen - it's been a long haul for you. Good luck tomorrow too with the banding. I was also dx'd with cirrhosis pre-tx and am still working on healing my liver post-tx.

I'm two year post now and have felt really good for the last year. I did have some issues that I also termed PTSD that first year. Out of the blue, if someone mentioned tx, I'd get weak in my knees, start shaking and crying and have trouble catching my breath. Over time, this has lifted, thankfully! Tx is a rough haul for many of us, both physically and emotionally and takes some time to rebound... Good luck to you, girl!!

Pam

[Naya888]

Karen ,you are such an inspiration for all of us. You worked so hard and sure deserve the best!

[1swimmer]

Karen, so happy at all your good news; celebrate good times...!!!
C

[ceanothus]

Aw Karen, you have me feeling weepy now too! You are such an inspiration. I can hardly believe how much you went through and you were ready to take more of it right up until your big crisis, and now, after all that, and only being a short time post-tx, and still dealing with banding, and you came back to tell us how great you are feeling! That is truly amazing! It really does help give more strength to all the rest of us, and I thank you from the bottom of my heart!
hugs,
Saelon

[FaithforHealing]

Thanks for posting this. Those treating and those thinking of treating need to hear more from post tx members who are feeling so good!  I think they are the super majority, but I don't have anything to back that up. I wish there were more stats, reliable ones, as stories of long term post tx symptoms seem to be causing a lot of concern lately.
Congrats to you!  And I hear ya on the anemia....it's been my biggest problem throughout this.

[BoceprevirGal]

  You are amazing and resilient!  Yes, emerging from having anemia is definitely quite an experience. Looking back on when I was at my worst, I cant believe how tired and miserable I was!
   Keep up the great work~

[his3707]

So happy to hear you are doing well!  You are an inspiration to so many of us!  I would really get a boost from reading your posts and I still do post treatment!   I dont know much about the banding but I pray everything goes well tomorrow! Thanks for such an uplifting-update!
Lydia

[coeric]

thank you for all your posts.  i was going nuts on 80mg of prednisone and full of fear and engaging in craziness - probably could have been arrested for supermarket rage. i thought i had it bad.  then i would read your posts about the anemia and think, how does she do this?  amazing what the human body can withstand.

One of my docs insisted i have an endoscopy before treatment.  she said they are seeing cirrhotics successfully treat.  and then at the end of treatment  or immediately after treatment they experience a bleed.

thanks for all the fish
eric

[Advocate1955]

So glad to hear you're doing so well. Good luck with your banding tomorrow. Hang in there. You're amazing!
Advocate1955

[flcyclist]

Heya Karen, so great to hear you're doing so well.  You are a true warrior and have kept such a positive attitude throughout your difficult tx.  You've been such an inspiration to many here including me.  You're great message put a big smile on my face.  Wish you the very best of luck, sending you positive vibes for your results.  You have so much to be happy for.  Cheers to a wonderful person.  

[pooh55811]

It's great to hear from you, Karen, and it is wonderful to hear that you are doing so well. You are an inspiration to all of us.