" Hi Kathy , I waited 5 months for a lung transplant. I also had very high antibodies. I had a 4 percent chance of finding a match. It was very discouraging at times but I am a woman of strong faith and my faith never wavered. I knew…"
"I was listed over 4 years in Dallas and then listed in San Antonio have high antibiotic count, but yesterday I celebrated my 3 month anniversary for a double lung tx that was done in San Antonio after being listed only 6 months. I feel if I had not…"
"Hi, I had a double lung transplant 1 year and 4 days ago. I had very high antibodies as I had 5 children. I was 39 when I had my respiratory arrest - I do not have alpha 1. My doctors had me on very large doses of Intragam. I waited over 4 years for…"
"Hi There my name is Belinda. I have had Alpha 1 for almost 7 years and I have been on the list for 3 months waiting dor a double lung transplant. During this time I have been called twice only to be called back and told that I was not a possible…"
I have been on the transplant list for 18 months when they first told me my antibodies were high. They said they kept bouncing around like 78,81,80 77,79. Who knows what that means but I am now wondering if this is going to be too hard to…"
"My name is Rusty. 5 months post tx dbl lung. I had antibodies that made tough matching. Tampa Florida, I believe is the best and shortest waiting time in the country as well as one of the best survival rates. When I was placed on the list June 20,…"
"Karen thanks so much for sharing this very moving story, I was wipe the tears from my eyes, I turely believe in Angels. That little boy touched so many hearts, that is what Life is about, how we treat each other. Thanks again, prayers to you and to…"
"I would like to pray and ask every one who knew Rachael Wakefield, she recieved her long awaited lung transplant. She needs all the prayers we can give her as she only had days to live before transplant. THANK YOU GOD."
Recipient: What Type of Donor Did You Receive your Gift of Life From?
Not a Recipient
If You Are WAITING for a Transplant, Please Feel Free to Tell the Community About Your Experience With the Waiting Process.. To Help Us Get to Know You Better and Understand What You're Going Through:
I have alpha 1, I am on a waiting list in Mn, I am trying to double list in Boston Mass. I had 1 dry run in Sept. The Dr. found high antibodies. I am on 6 liter's of oxygen.
What Do You Do For a Living? What Are Your Passions, Hobbies, Passtimes, Dreams and Goals for the Future?
I have not worked since 1995, I had to go on oxygen after I had lung reduction done.
About Me: Please use this space to tell the community about you and your unique experience with transplantation:
I have met so many people going through some very hard thing's. I have noticed that the people I meet seem to have 1 thing in common. We do not tkae life for granted. We are strong we have faith and we can never lose hope.
Please Help Us Reach Other Members by Telling Us How You Found Transplant Cafe:
On Face book
What Is Your Relationship Status?
Entertainment: What is Your Favorite Type of Music, Bands, Movies, Art, Books, etc.?
I love to read, I read the bible and books about alot of dirrerent subject;s
What is Your Favorite Quote(s)?
Fear not tomorrow God is already there.
Your Personal (non-commercial) Website, Page, or Blog URL:
Nice to hear from you, on Christmas Day too!
I was feeling a bit low that day, but it is something I have been giving some thought to, in relation to the relationship question too (I received a card from a Christian couple with a photo on the front of their joyous, loving, fun family of 3 boistrous sons, and it got me wondering how some people get all those blessings and as my therapist commented: 'You get jackshit'...
Ironically, my kidney problems haven't given me such a hard time spiritually or philosophically - but that may be because I haven't let them...
I'll have been on dialysis more or less ten years come April 2010, and not holding my breath for a new kidney though I'm on the Transplant List. If I thought about it too much I'd feel quite irked at how much time is wasted 'out of the loop', especially workwise and all the financial benefits and security that brings.
All the best to you,
What a wonderful and sweet thing to say, you made my evening. Thank you for being my new friend and look forward to getting to know you. I want to wish you and yours a very Merry Christmas and a Happy and hopeful New Year.
I’d like to welcome you to the Transplant Café. You are now a member of a warm, friendly, supportive, caring, understanding, sensitive and informative site. If you have any questions please don’t hesitate to ask and I’ll be glad to help you out. So glad you are here and again welcome to the Transplant Café. Here’s a link that might help you get started: www.transplantcafe.com/forum/topic/show?id=2024407:Topic:2985
1972 & 2007 imikimi - Customize Your World!
Kathy, I just wante to say hi and welcome you to the Cafe! This site is amazing and you will find so much support and meet a lot of wonderful people here. I truly hope you recieve your gift of life soon. Come check out my kitchen, http://www.transplantcafe.com/group/holdolstckitchen for some delish holiday recipes! Your in my thoughts and prayers. Take care and enjoy the site..
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Welcome to TransplantCafe.com - The Gift of eLife!
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…"
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
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
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
"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…"
"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…"
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.
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.