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Grandson Now Needs a Heart Too

Posted by Nancy on July 13, 2015 at 11:30am 0 Comments

Wow! I can't believe all that has happened since I last signed into this site. After already having been through heart transplants with my girls (now adults), my ten year old grandson needs one. He was diagnosed with advanced heart failure and airlifted to University Hospitals on April 16th. It was just heartbreaking to do this yet again. There are no words. As horrible as it was to watch him go through all of this, I am so grateful he is still with us today. He now has an LVAD and is able…

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Weight question

Posted by Teresa Meyers on July 12, 2015 at 9:03pm 0 Comments

I feel so blessed to have received a liver transplant 12-1-2012 my question is has anyone had weight gain post transplant? Not taking any prednisone, but have had weight gain of 25-30 pounds. Never heavy in my past, small frame, and not a big eater. Thanks in advance.
Feeling very lucky

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.

LIVER, ALLOGRAFT, CORE NEEDLE BIOPSY:

· CENTRAL PERIVENULITIS AND FOCAL DUCTITIS, COMPATIBLE WITH ACUTE CELLULAR REJECTION, FAVOR MILD.

· PORTAL FIBROSIS.

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…

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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…

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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…

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http://optn.transplant.hrsa.gov/converge/resources/MeldPeldCalculator.asp?index=98

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

Link for: Calculator To determine your MELD score

Liver

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…

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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

Forum

Itching!

Started by Kathy Nickell-Nuss in New to the Cafe? Introduce Yourself to the Community! on Saturday. 0 Replies

I have had two liver transplants, one in 2012 and one in 2013.  I have been in chronic rejection for 2 years.  My liver enzymes are trending downward which is great, bur I live with horrible itching daily.  Has anyone experienced this and if so, how or what can I use to stop the itch?  The itching is mostly in my feet and hands, but sometimes all over my body.  It's not really the skin that itches, It's under the skin!  It kind of feels like the itching is in my veins....running through the…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! Jun 29. 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

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    Kathy Nickell-Nuss posted a discussion

    Itching!

    I have had two liver transplants, one in 2012 and one in 2013.  I have been in chronic rejection for 2 years.  My liver enzymes are trending downward which is great, bur I live with horrible itching daily.  Has anyone experienced this and if so, how or what can I use to stop the itch?  The itching is mostly in my feet and hands, but sometimes all over my body.  It's not really the skin that itches, It's under the skin!  It kind of feels like the itching is in my veins....running through the blood.  Cold water is all that seems to temporarily take it away.  Heat triggers it!  Please respond if anyone knows more than I do.Thank you,KathySee More
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    "alpha 1 was what I was told? transplant on Oct. 4 2003. they tell me that it can not affect my new liver? but I,m having some issue now, the rest of the family where tested and looks like I drew  lucky the straw! I very happy with things! …"
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    Liver Transplants

    This is a group for all people who have had liver transplants. Feel free to say how long you have been a recipient and what medication you are on. Some doctors hope to have their patients off all medications, any thoughts?
    Jul 13
    Nancy posted a blog post

    Grandson Now Needs a Heart Too

    Wow! I can't believe all that has happened since I last signed into this site. After already having been through heart transplants with my girls (now adults), my ten year old grandson needs one. He was diagnosed with advanced heart failure and airlifted to University Hospitals on April 16th. It was just heartbreaking to do this yet again. There are no words. As horrible as it was to watch him go through all of this, I am so grateful he is still with us today. He now has an LVAD and is able to wait at home. This is such a big improvement over how things were when my kids were waiting. My grandson's mother was on an LVAD in 2001 for almost three months. Back then they were external and connected to a huge machine. Today they fit in a small bag. Wow! That's big progress in less than fourteen years. So now we wait........... Again.See More
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    Teresa Meyers posted a blog post

    Weight question

    I feel so blessed to have received a liver transplant 12-1-2012 my question is has anyone had weight gain post transplant? Not taking any prednisone, but have had weight gain of 25-30 pounds. Never heavy in my past, small frame, and not a big eater. Thanks in advance.Feeling very luckySee More
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    To get the chat room rocking with conversation come here to schedule a time to chat with your fellow transplant friends. Meet new people, discuss different topics/issues and relate to others who understand what your going through.
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    Been there, done that? Thinking about doing it? Join us for discussion and comeraderie around the living kidney donor and living liver donor experience.See More
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