Blog Posts

Biopsy Report

Posted by Terri Lynne on June 17, 2015 at 8:00pm 0 Comments

My coordinator emailed me a copy of what the biopsy report said.




It basically says have some inflammation (already knew this from last biopsy), mild rejection and portal fibrosis. I've heard of fibrosis from other liver patients but not totally clear on what it is. Starla is in good hands with Dr. P…


Health Care insurance

Posted by Dennis E. Chavis on June 15, 2015 at 2:21pm 0 Comments

Hello café! 

I’m Dennis Chavis.

Thankful, grateful, of the gift I received. Blessed with twelve years. I find myself needing lots of info! Liver transplant on October 4 2003, 3 months later and I’m back at work and things or great!

Today, I’m sick again. I stand at another crossroads, what to do?  Lost my job and can’t…


Sudden onset of High Blood Pressure

Posted by Keilee-Rae Miller on June 1, 2015 at 9:27pm 0 Comments

Hello everyone. My name is Keilee and I just recently celebrated my 5yr post transplant. This last Sunday, 5/30 I went to the WE b/c my Bp was 183/120 with a resting pulse of 130. I was sweating, short of breath, right arm went numb. They treated me as I had a heart attack but after blood work came back, chest x-rays, chest CT Scan, and echocardiogram- they found no heart damage, no enzymes in my blood suggesting I had a heart attack, no lung infection, clots or aortic dissection. The hospital… Continue

Baby girl needs a Liver (toronto area) please help

Posted by Kelly Butts on May 27, 2015 at 5:54am 0 Comments

Its been a while since I've been on this site.  Almost 6 years since my donation, thankfully we are all doing amazing.  I am writing today to help spread the word for a friends 8 month old daughter who is in dire need of her own Liver Donation.  She lives in the Toronto area

 Every avenue we can use to help spread the word it crucial.  As a liver donor myself I know how hard it is to find suitable matches. 

Here is the link to her father’s facebook page and story.  If you or…


Posted by Matthew J Litkie on May 3, 2015 at 10:05pm 1 Comment

Link for: Calculator To determine your MELD score


25 or greater better chance

graft vs host from a liver transplant

Posted by Ralph N. Johnson on April 16, 2015 at 2:10pm 0 Comments

Hello, my name is Ralph N Johnson I just join this wonderful group of concern,loving,family and friends. My gift to life was on 7-12-14 liver transplant at Univ of Penn hospital Phila. In August I contacted (GVHD) from the liver transplant.August & September was spent fighting daily for my very life. Currently undetectable, My Dr. told me that I would be lucky to find as many people that it takes to play a hand of bridge that survived this disease. Can anyone point me in the direction to…


A New Version of Transplant Hero is Available !

Posted by Jay Graham MD on April 8, 2015 at 12:18pm 0 Comments

You can download it here:

You will find many new amazing features in this version:

1. The ability to adjust your timing of medication better;

2. Email your immunosuppression regimen to whoever you want;

3. Heart,…


Post Lung Transplant Clothing

Posted by Melissa Schaal on April 2, 2015 at 3:22pm 0 Comments

Does anyone have any ideas of what clothing and bras to find for after double lung transplant? I know I won't be able to wear a normal bra and wont be able to lift my arms to put on sports bras on. Help!!!


No More Myfortic (Cellciept) March 30 2015

Posted by Matthew J Litkie on March 31, 2015 at 4:56pm 3 Comments

Almost 8 years out, & I only take a small amount of K5.

 Pre skin cancer every 2 months.

My Skin Dr asked if I could stop taking what ever kept giving me skin lesions.

The Lord Has Blessed Me, Beyond Imagination!

Just once it would be really nice to get new medication and read the label WARNING " may cause permanent weight loss, Removes wrinkles & increase energy levels " Lol.. Oh boy that would be a refreshi…

Posted by Clare mcgee on March 25, 2015 at 1:39pm 0 Comments

Just once it would be really nice to get new medication and read the label WARNING " may cause permanent weight loss, Removes wrinkles & increase energy levels "
Lol.. Oh boy that would be a refreshing change!! Continue


Is anyone taking the New Med. for $10,000 pr month?

Started by Matthew J Litkie in New to the Cafe? Introduce Yourself to the Community! on Monday. 0 Replies

The new med that is at 90 some odd % success rate. Cost around $10,000 pr month. The Company is giving it out to some for no cost, but the Lucky Ones are90% Gone, Super high MELD scores Continue

Tags: 2014-2015, Meds., New

Survived Graft vs Host after a liver transplant

Started by Ralph N. Johnson in New to the Cafe? Introduce Yourself to the Community! May 23. 0 Replies

Hello group, just a follow up to discussion concerning  graft vs Host after a liver transplant. Wondering if anyone had additional information concerning this discussion. Know or anyone? Heard about it?...Anyone please..thank you.Continue

Graft vs Host From Liver Transplant

Started by Ralph N. Johnson in New to the Cafe? Introduce Yourself to the Community! Apr 13. 0 Replies

Hello, can anyone point me the direction, involving graft vs host after a liver transplant. Does anyone know of or heard of an individual that survived other than myself.Thank you.Continue

Anyone experience acute rejection past the 1 year mark with double lung transplant?

Started by Misty Mountain in Lung Transplants Mar 2. 0 Replies

My dad had a double lung transplant 1.5 years ago after suffering with bronchiolitis obliterans organizing pneumonia and pulmonary hypertension for over 7 years. Last week he was submitted to the hospital for acute rejection. His doctor told us that they only see this in 1% of patients. I'm wondering if anyone here has experienced this or knows of someone who has and what the outcomes were? Right now my dad's biggest fear is that there will be permanent damage to his lungs and he will be back…Continue

Getting Fit While in Chronic Rejection of Lung Transplant

Started by Audrey Clark in Sports & Fitness Feb 16. 0 Replies

Hello, I am in chronic rejection of my 2nd double lung transplant. I go to pulmonary rehab twice a week but it doesn't seem like it is enough to get me fit. I get out of breath easily and it is likely that I will ever go to a gym. So I was wondering what you guys do to stay fit at home?Continue

Muscle Weakness and Joint Pain

Started by Terri Warren in Transplant Cafe Discussions - Archive & Discussion Forum Feb 5. 0 Replies

Hi - I am Terri and new to the café.  I found this site in my pursuit to find out if there was any connection between my liver transplant, that took place on 12.24.12 (best gift anyone can get!), and the muscle weakness and joint pain that I have been experiencing.I have been tested for a variety of medical reasons that showed no explanation, soooo, I truly believe my body is "basically addicted to  Prednisone!"  Once I was back up and moving again after the transplant I realized that something…Continue

averae wait time for liver transplant

Started by Cathy Mcferrin in New to the Cafe? Introduce Yourself to the Community!. Last reply by Matthew J Litkie Apr 1. 3 Replies

Thanks for the sweet welcome to this site!Im in the insurance  phase , testing which my insurance paid for about $30,00 worth of testing. Can  I ask how long did you have to wait once you were on  the list?I have hepatic encephalopathy and have been to hospital twice in less than 6 months.  The first visit I was pretty much out of my head. Finally adjusting  the lactulose and  x drug . Everyone I came in contact with was just rubbing me the wrong way.Second visit finally got the lactulose…Continue

Having a single Peg of Whiskey after liver transplant, will it kill me?

Started by Prem Dayal in Liver Transplants. Last reply by Prem Dayal Mar 3. 7 Replies

I underwent a liver transplant 4 years ago due to acute liver failure, My medications have reduced to just 1 mg of Prograf twice a day. Since the past 2 years I started travelling and living in various countries. Currently I am in Bogota, Colombia. I know this could have been severely fatal for me but I tried for the first time in my life Cocaine,LSD and Marijuana here, which I had never done in my life. For a small period of time I almost got addicted to Coke, when I pulled my self together…Continue

Tags: acute, failure, post, alcohol, transplant

Please Participate in My College Project :) I need your input!

Started by Brett Crowell in New to the Cafe? Introduce Yourself to the Community! Dec 1, 2014. 0 Replies

Hey Everyone!!I am 17 years post kidney transplant and have a great interest in developing new ways to increase the quality of life for all the people in the transplant community. Here is a little more information on the survey that I have created! I have compiled a survey via Survey Monkey for my honors project during my final year as an undergraduate. The content of the survey has to do with the self-concept of transplant patients, social support, illness intrusiveness, and adhering to the…Continue

Vomiting and Diarrhoea after being exposed to chemicals

Started by Frank Colangelo in New to the Cafe? Introduce Yourself to the Community!. Last reply by HDHONEY Nov 22, 2014. 1 Reply

Hello AllJust under three years I had a liver transplant due to cirrohossis and Hep C.  I am back at work but seem to experience vomiting and diarrhoea if I have been exposed to chemicals of any sort.  Understanding fertilser and blood and bone for gardens is a no no for me. My medical team cannot give me any answers and I am wondering if anybody has experienced the same symptoms.  The episodes seem to last up to four to five hours at a time and leaves me very fatigued and wash out.  Hoping…Continue



Active Conversations

Disconnected (2 online)


    You are disconnected from chat. Connect to join the chat.

    Suspended From Chat

    Sign up to chat on - The Gift of eLife!.

    Sign Up

    top members this week: 

    1 Matthew J Litkie

    Matthew J Litkie

    Sandy, OR, United States

    2 Bornali


    Vernon Hills, IL, United States

    3 Karen Weddick

    Karen Weddick

    Fremont, Ca., United States



    • Add Photos
    • View All

    Latest Activity

    David Goodman commented on's group Team Prograf
    "Thank you for answering my question. One transplant is enough for me. I'm 65."
    11 hours ago
    Jan Ward commented on's group Team Prograf
    "Hey Guys: I've been on 3 mg day for about 3 years and my Doc said he plans to drop me to 2. I'm certainly not abject to stopping completely but I'm not ready to take that chance yet. To react to David's question: When I got my…"
    11 hours ago
    Carlos commented on's group Team Prograf
    "Dave, since you have pursued the question, at 71, I have had my chance at 13 years of added life, I have had my chance to see children grow, to participate in the great adventure of life, and in any situation I would not ask for another organ, I…"
    11 hours ago
    William R, Armstrong commented on's group Team Prograf
    "from the shound of things here my .5mg of prograf every nine days is a good thing. i have never shown any signs of rejection in the 32 months post transplant. i would never stop or change taking my prograf different from what my doctors percribed.…"
    11 hours ago
    David Goodman commented on's group Team Prograf
    "Carlos, If you were to suffer rejection and your new liver failed, do you think you should be entitled to another transplant?"
    12 hours ago
    Carlos commented on's group Team Prograf
    "To begin with, I don't owe my donor anything but a profouund thank you. The act of compassion they made by donating their daughter's liver to me was an act of moral compassion. To an extent it assuaged the pain of their daughter's…"
    12 hours ago
    David Goodman commented on's group Team Prograf
    "Carlos, If you were to suffer rejection and your new liver failed, do you think you should be entitled to another transplant? You said; "Fair enough, but I am entitled to my own agency." That's true, but don't you owe it to the…"
    17 hours ago
    William R, Armstrong posted a status
    "and i take my meds as my Doctors tell m too."
    William R, Armstrong posted a status
    "I recieved my Liver Transplant at Tulane Medical Center In New Orleans La. on Nov. 3 2012 I have never had any type of complication"
    Carlos commented on's group Team Prograf
    "I’ll try to make this shorter as I accidentally deleted the comment I just made in response to Dave Goodman. Weaning is not for everyone, it may be a fatal mistake to try it.  You have been selected to receive a graft after a long and…"
    Hyung Paik is now a member of - The Gift of eLife!
    Wes Cook commented on's group Team Prograf
    "I'm taking 2 x 2,  I want to ween lower but and have been temped but must have my Doctor on board with it. I will bug him again in a couple months. It has only been 4 months since it was lowered"
    David Goodman commented on's group Team Prograf
    "Carlos, Haven't your docs noticed that you're not taking prograf? What do they say about it? Same question for Wes."
    Wes Cook commented on's group Team Prograf
    "Hi, I'm two years out for Liver TP. Went into rejection after 3rd week. They had me on 4gm of Tacrolimus X 3. for a year, then 5mg X 2, and down to 2 x 2. My Tac level was 3.7 last test. Up from 3. They want you between 8 and 18. I was also on…"
    Carlos commented on's group Team Prograf
    "0.5 mg Prograf 3x/wk sounds weird.  If you are really taking that dosage you may not need Prograf. My transplant date was May 2003.  I have never had a rejection episode and after six years on Prograf alone I decided to taper off Prograf…"
    David Goodman commented on's group Team Prograf
    "Where did you receive your transplant?"

    quick links!

     follow transplant cafe:

    Find us on Facebook Follow us on Twitter Subscribe to TransplantCafe

    Meet Members by Transplant Type

    Heart Kidney
    Liver Single Lung
    Double Lung Pancreas
    Intestinal Bone Marrow
    Tissue Kidney / Pancreas
    Other Transplant



    Increasing transplant awareness through personal profiles, interactive tools, friendships, blogs, discussions, groups, events & networking!

    © 2015   Created by

    Badges  |  Report an Issue  |  Terms of Service