"I have been having allomap tests for quite a while. They have done biopsies also & compared the two.I had a biopsy in Dec. & will only have allomap in April.I had my tx in Feb 2010.They have been reliable so far ..My doctors at…"
"Dear fellow bloggers and heart transplant recipients,
Please see below several new facts regarding AlloMap:
In April 2010 the New England Journal of Medicine published an article by Dr. Pham presenting the results of a study comparing…"
Please Select Your Transplant - Or Tell Us How Else You Were Touched by Transplantation:
Heart, Double Lung
Recipients: In This Space, Feel Free To Write About Those You Are Grateful to for Receiving The Gift Of Life:
I had my Transpalnt when I was 13 years old I was the 12th child in the UK to have a Heart and Lung Transpalnt I was blessed by a little boy Heart and Lung and with out his gift of life to me I would not be hear and my lovely little girl Megan would also not be hear I have been blessed in so many way and when megan was four I meet my donors mum and sister sadly the the father of the little boy took his own life .
But I see my donors mum alot and she been down to me for a holiday she is the most wonderful person in the world and she means alot to me.
Recipient: What Type of Donor Did You Receive your Gift of Life From?
Which Transplant Medication(s) Do You Take?
Too many to name
What Do You Do For a Living? What Are Your Passions, Hobbies, Passtimes, Dreams and Goals for the Future?
wife /mother cook clearner and most of all ZOO KEEPER
About Me: Please use this space to tell the community about you and your unique experience with transplantation:
Well here I am 19 years down the line since I had my transplant and believe me it has been an adventure and a challenge, but I have learnt so much and for that is has made me a stronger person.
I guess I should tell you why I had to have a Heart and Lung Transplant in 1976. I was born with half a heart, two chambers and one valve when I should of had four chambers and two valves. At that time in medical history they were not doing Transplants on children, so it was not until the late 80’s they started to do them on children. In 1987 I was put on the transplant waiting list where I waited for two years. It was on the 17th of September I was given the gift I had been waiting for, I was the 12 child in th UK to have a Transpalnt so it was very new to me and the doctors. Since having my Transplant it has not been plain sailing. There been ups and downs, happy and sad days, but I have leant a lot about myself and about learning to live with new organs. I feel honoured and blessed to been given such a wonderful gift and without that gift I could of not of had such a lovely life, nor would I have been able to have my beautiful daughter Megan. Megan was born on the 11th of July 1998 and I was the third person in the UK to have a baby, but the first person in the UK to give birth naturally, so to me she is my second wonderful gift I have been given. It is now 19 years since I have had my Transplant and because I have been given so much support and help from other people, it is now my time to give back some of the support and help I have been given in the past. That is why I have set up this support group. It is for people all over the world who have had all sorts of Transplants, and the aim of the group is to support and understand each other, but most of all just be there and form wonderful friendships that will last for
Please Help Us Reach Other Members by Telling Us How You Found Transplant Cafe:
Just on the net thought myspace
What Is Your Relationship Status?
What is Your Favorite Quote(s)?
Life is what you make it and each and everyone of us are blessed to been given the gift of life
Your Personal (non-commercial) Website, Page, or Blog URL:
Hi, Nicola. I just joined this group today and read your story, which is quite inspiring to me. My daughter, Rachel, is now 9 years old. She received a bilateral lung transplant in 2000, when she was 6 months old. She is almost 9 years post-transplant. I live one day at a time with her, but do look forward to the future, as well--if that makes sense. You are now over 20 years post-transplant? I have never met anyone this far out, as we live in the pediatric world. Have you ever been diagnosed with chronic rejection? I am also wondering what your immunosuppressants are. When Rachel was transplanted, I was told that she should not have children because of her meds, especially the CellCept--but I see that you have a beautiful daughter of your own! Please share more of your story with me. Thanks, Stacey
Thanks for adding me to your list of friends, we can never have enough friends. I'm new at this and not much of a writer so don't except a lot of chit chat from me. I would rather be out on the golf course. I play 4-5 days a week. My faimly is grown and on their own now so my wife and I are now retired and keep busy doing the important things golf, bowling and bocci with the special olympics as coachs. We love the people involved and they realy make our life complete.
Thanks again for adding me to your list.
I see you kindly added me to your friendship list. It's nice to meet you Nicola. You inspire me!
I enjoyed your quote, it's really nice, and so extremely true.
I have several friends in Ontario, that have received a double lung and heart, and are doing beautifully.
You sound extremely busy with your family, which is wonderful. I'll look forward to getting to know you more Nicola. I can see you have already touched many lives in such a lasting way, your inspiring.
Wow it is amazing what you have been through. 19 years. Im a mere baby in comparison!lol It was a year this April 27th that I had my double lung transplant at Harefield Hospital. So how are you feeling now? I have just returned to work just part time but am loving it. I too waited 2 years for my transplant and had 6 false calls too. It was a rough time but things are brilliant now. x
I'm new to this group too & have read your story...rough! Sure hope you are still doing well and your spirits are up!
As you probably know there are ups and downs emotionally post transplant.
I was diagnosed when I was 16 with…"
"A young New York woman was so depressed that she decided to end her life
by throwing herself into the ocean.
But just before she could throw herself from the docks, a handsome young
man stopped her.
"You have so much to live for," said…"
"My wife found out that our dog (a Schnauzer) could hardly hear, so she took it to the veterinarian. The vet found that the problem was hair in the dog's ears. He cleaned both ears, and the dog could then hear fine.The vet then proceeded to tell…"
If your doc write BS/BS and specifies that you need prograf, not a generic med, they will back down. It's up to a doc to decide. All generic meds aren't the same as the name brand. At MGH they prefer prograf, although they said…"
"Hi Dottie, congratulations on your transplant. I have 10 years on my new liver this month. You have a new organ for only a few years. I would suggest you keep a spreadsheet of your labs as far back as you can so you can notice any…"
"Hi Devra, I am Darlene & had a DLTx 3-3-11. So far no problems with lungs but I have gained 50 lbs since transplant. Finally they lowered prednisone this week to 2 1/2 mg once a day. I have had some kidney damage they are…"
Welcome from me as well. I'm three plus years out...I was on the prograf (as much as 30 mg a day) and others including immuran (as much as 150 a day) and prednisone for the first year or so...I'm now down to simply 1mg x 2…"
So I had my first liver tx in 2005 (living donor) and had bile duct issues. I had a 2nd tx March 16th and have bile duct problems yet again and now I'm faced with needing a 3rd tx. Has anyone out there had 3 transplants? I've been stuck in hospital since March and the doctors want to send me home...even though I still require IV antibiotics and a VACC system. My family and I are quite nervous.
I wanted to help as well, but I am no longer under 18. I do hope though that your project goes well and proves to be informative for you and those to whom you show it. If you do not mind me asking, are you graduating as an undergrad or…"