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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…

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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:



https://itunes.apple.com/us/app/transplant-hero-alarm-system/id969039026?mt=8



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,…

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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!!!

Melissa

No More Myfortic (Cellciept) March 30 2015

Posted by Matthew J Litkie on March 31, 2015 at 4:56pm 1 Comment

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

40 years!

Posted by Carol Jean Posner on March 19, 2015 at 1:09pm 1 Comment

I just celebrated my 40th Anniversary, post transplant last Sunday! These days it's more common for a live-related donor but still pretty darn good for a cadaveric transplant, especially considering when I got the transplant I was told it would last about 8 years, 15 at best!! Thanking God for the era I was born in and His grace and mercy on me. My mother was a WWII nurse and people with kidney failure just died back then. I am feeling great, I'm doing my bookkeeping work and working with…

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Am I in the right place?

Posted by Juvon on March 16, 2015 at 10:53am 0 Comments

  I received my Kind, gracious and wonderful gift of life back in 2006, a kidney & pancreas transplant. Since then my life has changed for the better. I now am able to enjoy the thing I love doing like eating, taking long walks, training and going out with family and friends. However, my employment status has been fantastic from 2007 until 2011 as an IT technician.

     Soon after the awful fall of the job market finally caught up to me, and I haven’t been able to find steady work…

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New transplant medication

Posted by joanie brandon on February 22, 2015 at 9:11pm 2 Comments

Hello everyone, I hope this find everyone bless as I am. I am celebrating ten years with my liver transplant (thank you lord). My physician just changed my meds from program and cellcept to prograft and myofortic. Just asking if anyone is using myofortic? I adjust a little scared of the recent change.

CARLA GRACE BORTON, Canadian double lung and heart transplant recipient, dies.

Posted by Roch Longueepee on February 14, 2015 at 7:00pm 0 Comments

                               CARLA GRACE BORTON

June 19, 1958 - January 6, 2015

My dear friend Dana received word tonight that her mentor who was also a double lung and heart transplant recipient…

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Forum

Graft vs Host From Liver Transplant

Started by Ralph N. Johnson in New to the Cafe? Introduce Yourself to the Community! on Tuesday. 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

Working after Transplant

Started by Gene Cost in General Discussion & Community. Last reply by Gene Cost Dec 1, 2014. 2 Replies

Hello to everyone,My name is Gene and I was transplanted almost 3 years ago. I suffered from liver failure as a result of Hep C. I am 59 years old now. I suffered a torn rotator cuff as a result of my positioning during my transplant and it took some time to recover from that. I did not have any surgery I simply learned to live with it. I also incurred steroid induced diabetes as a result of the transplant and now have a fair amount of neuropathy in my feet. I have found that I fatigue much…Continue

Tags: disability, working, employment

Problems with pain in chest and weak bones

Started by Margaret Kelly in New to the Cafe? Introduce Yourself to the Community!. Last reply by Margaret Kelly Oct 20, 2014. 2 Replies

Hi everyone I am new here and I am from sunny Scotland in the UK.  I had my Liver Transplant in Dec of 2000 and since then I have been relatively fine healthwise except for a few bouts of pnuemonia and one of scepticemia.  Recently I have been having really bad pains in the right hand side of my rib cage which travels through to my back, I am also awaiting a bone density scan to get to the rout cause of severe joint pains.My question is, is anyone else out there having these problems and what…Continue

Tags: pains, bones/chest, weak

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    Ralph N. Johnson left a comment for Dr Suresh Raghavaiah
    "Dr.Suresh,Good morning.My is Ralph N Johnson. My gift of life came on 7-12-14 liver transplant at the Univ of Penn hospital Phila. In August I contracted(GVHD) from the liver transplant.August/September was spent fighting for my life.My Dr. told…"
    yesterday
    Ralph N. Johnson posted a blog post

    graft vs host from a liver transplant

    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 find the other three. Thank you.. See More
    Thursday
    Clare mcgee commented on Matthew J Litkie's blog post No More Myfortic (Cellciept) March 30 2015
    "Mathew I may be slow on the uptake But do they know which one of your meds are the biggest culprit to your skin situation?? I truly hope they can help prevent further episodes. It is strange to think that the derms seem it just poss to stop our…"
    Thursday
    Ralph N. Johnson left a comment for Rosa Jones
    "Hi,Rosa...my name Ralph N. Johnson 7-12-14 i received the gift of life liver transplant. In August I contracted(GVHD) from a liver transplant...my Dr. told me I would be lucky..to find as many people as it takes to play a hand of bridge..can you…"
    Thursday
    Ralph N. Johnson left a comment for Donna Cryer
    "Donna, hello..my name is Ralph N Johnson 7-12-14 was my gift of  life. Liver transplant. I contracted (GVHD) graft vs host decease from a liver transplant. I was told by my Doctor..I would be lucky if I find as many people that it takes to play…"
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    David Goodman commented on Lili Feldman's group The Funny Bone
    "An attractive lady and an old man are sitting next to eachother on a bus. The following conversation takes place....   Lady: "Can you help me get something off my breastsplease?"   Old man: "Yeah sure, it would be my…"
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    Ralph N. Johnson left a comment for Kim Burdakin
    "Morning, Kim..How r u ? My name is Ralph N. Johnson..briefly..on 7-12-14 liver transplan. August, Semptember contracted graft vs host from the transplant. I was told I would be lucky to find as many people that it takes to play a hand of bridge that…"
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    Graft vs Host From Liver Transplant

    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.See More
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    "Liver Transplant: 7-12-14"
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    "Hello, I'm thankful to join the family. Great support resource; along with concern,caring members and family. I survived graft vs host(GVHD) from a liver transplant. My Doctors at Univ. Of Penn Phila..stated to me that..I may be lucky if I find…"
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