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Ramona replied to Stefan's discussion Hello, I am new here
"Stefan, Hang in there - I have been caregiver to my husband for 7 years, and he's been through many surgeries and illnesses....and we both have our worries and down days.  I will keep you in my thoughts - and hope for the best possible…"
18 hours ago
Parent of B posted a discussion

Cardiac biopsy - how often?

Hi,First post folks. I'll begin with quick background: My 15-year old daughter had a heart transplant 6 months ago after having severe dilated cardiomyopathy with left ventricular noncompaction (now known to be a result of a genetic mutation original to her). Anyway, transplant was at the highly acclaimed Columbia/NewYork-Presbyterian Hospital - to which we moved for waiting for the heart, transplant, and follow-up care. Now, 6 months after transplant, we moved back to our home. Our medical team has a different protocol for checking for organ rejection.Whereas NYP's protocol is cardiac biopsy every month for first year, every 2 months for second year, and every 3 months for third year, our hospital's protocol moves to every 3 months after 6 months, then every 6 months after a year and every year after 3. Bottom line- much fewer cardiac biopsies.I'm wondering if you know the different protocols in checking for solid organ rejection / heart - and how they differ from different medical…See More
yesterday
Stefan posted a discussion

Hello, I am new here

Hi, My wife had a double lung transplant, 16 years ago this Sunday. At the age of 27, dying from CF, she was gifted life by the transplant team at MGH in Boston, and two non-related living donors. We've been together for 8 years and I play both roles of husband and caregiver.Although her sweet 16 "Lungaversary" is Sunday, on Monday she goes for a major surgery (not pulmonary related). I sure am nervous. I've witnessed her resilience, self efficacy and recovery from multiple pneumonias, illnesses and painful secondary ailments caused by medications. But this total open abdominal procedure will really immobilize her and expose her to infection (inpatient or out). I'm scared, but can't fully express it because she is scared and seeks emotional comfort and strength from me. Every day I "should" be grateful, not worrying.I apologize for writing so much on my first post. I hope to find some support and insight here.StefanSee More
yesterday
Stefan liked Stefan's profile
yesterday
Stefan left a comment for Stefan
"My wife is a double lung transplant of 15 years"
yesterday
Stefan is now a member of TransplantCafe.com - The Gift of eLife!
Thursday
Jeff Clardy posted a discussion

Surgery after transplant

I recently injured my hand and now have to have surgery on it to repair it. They are going to be putting me out for the surgery. Now grant it, I, on a regular basis go to my transplant center for different procedures(ie;allomap, biopsies, heart caths, etc) and feel completely at ease in doing so, it has been 4.5 years since my heart transplant, Yet I have found myself with a lot of anxiety going into this surgery, one that they are putting me under, two, it is not at my transplant center but at another hospital. It is really weird that i seem to have more anxiety concerning this surgery then I did about my transplant. The faith I have been granted affords me to have confidence in my eternal destiny to be with Christ and that is what/and has guided me through my entire transplant journey. Can anybody shed some light on their experience they have had with other surgeries following transplant. With a grateful heart, JeffSee More
Wednesday
Karen Harrill replied to Phil Keyes's discussion Post transplant blues
"Hi Phil, Before transplant I had hepatic encephalopathy which my gastroenterologists treated with medication. My reflexes were slow and my judgement was often faulty. Until the fall before my following Spring transplant these episodes were few. They…"
Tuesday
Karen Harrill replied to Bornali's discussion In distress ..may be just need to hang on in the group Acute Liver Failure Transplants
"Hi there! I notice people are not that active on this page. I had acute liver failure, had a transplant in 2011. I take 3mg of Prograf only. I also, on the advice of my Mayo Clinic transplant surgeons take the vitamins Calcium, E and magnesium. I…"
Tuesday
Karen Harrill added a discussion to the group Acute Liver Failure Transplants
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My Acute Liver Failure was the result of Hepatitis C contracted during an emergency C-section in1978!

I lived with stage 4 (end stage) liver disease for 15 years. The fall of 2010 was the beginning of a rapid decline. I received a transplant in May of 2011. As you know a transplant gives you a new life but does not cure the hepatitis C, it begins its damage of your new liver immediately. Thanks to the incredible staff of the Mayo Clinic Liver Department and new drugs Solvaldi and Olysio I have been virus free for over 5 months and hope that my 6 month blood test will be still be negative. Interferon and ribovarin would show no virus and then a month or so it would rear it's ugly head. I had no side effects from the two new drugs. These drugs are very very expensive but I was fortunate that Mayo knew where to go for help with these two drugs whose combined costs is $58,000 per month for 3 months. $174,000.
Tuesday
Karen Harrill joined TransplantCafe.com's group
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Acute Liver Failure Transplants

A group for those of us who had a liver transplant due to acute / fulminate liver failure. Here we can discuss our experience with this unexpected form of organ transplant including psychologically, physically and all else that goes with it.
Tuesday
Profile IconKaren Harrill, Parent of B and Ali Barton joined TransplantCafe.com - The Gift of eLife!
Tuesday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"Makes sense to me. Good one David."
Tuesday
Ali Barton and Karen Weddick are now friends
Tuesday
Ali Barton updated their profile
Monday
Lloyd Hopes liked TransplantCafe.com's group Share Your Transplant Story
Monday

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