Organ Transplants Support Group

I waited eight years for a transplant only to find out the hospital was covering up the fact that they didn't have a transplant surgeon.

It's a long story.

I just read that the average wait is now 1000 days and increasing at 20% a year. You are well overdue at 2000+.

Google "average kidney transplant wait" and take the information to your transplant unit in person and ask. While there ask for a list of other transplant hospitals in your multi-state region of the country. Then get on as many lists as you can.

Listen - there is no one in the world who is a better advocate for your health than you are. Grab hold of this situation and demand answers. Thats your "coping" mechanism.

HELLO LUV, ON AUG 6/99 I REC. MY KIDNEY AFTER YRS. OF WAITING HOW I STAYED ALIVE I'LL NEVER UNDERSTAND UNTIL I MET MY CREATOR.I WAS A SINGLE MOTHER DAUGHTER SWEET 16 THAT OCT98......I WAS ON HOSPICE TILL AUG SIGNED MYSELF OFF OF TREATMENT THEN MY BEEPER WENT OFF.YAHOOOOOOOOOO! I WAS VACATIONING ON THE WASH. COAST WITH DEAR FRINDS SAYING MY GOODBYES AS EACH WAVE CRASH TO THE SEA SHORE. AT 90#S 5FT7 I WAS TRULY BLESSED.THRU LOTS OF INSANITY,HUMOR AND A LOVING SOCIAL WORKER AND NURSES IT HAPPENED.I WISH YOU LAUGHTER.TEARS DREAMS OF A BETTER LIFE.MUCH LOVE.JOURNAL 24/7.I HAD PKD. HARDEST PART SEEING BUDDIES PASS. LOVE M

Hang in there every things comes in God's time. I had liver disease for 25 years after fifteen and almost bleeding to death twice I was place on the transplant list. Then I waited 11 years in decent but decling health. I like you got frustrated angy sad and thought it would never happen. This spring my liver started to completely. I enterd the hospital on 6/2 on about 6/10 my Doctor made it clear without a transplant I was going to die in a few weeks or months. 3 days later I was laying in the hospital and at 1AM the transplant center called and I was told they thought they had a liver for me. I took an ambulancee to center and a few hours later the surgeon walked in and said are you a father. I replied yes and she said happy fathers day the liver is good we're going to surgery.

I didn't nearly wait that long for my heart.It was only 3 years.Got it in Feb.07.But not after being called up 6 different times.That was the hard part.Harder on my wife and family I think than on me.The way I had it figured God didn't go to all that trouble to bring me back to life after my heart attack to just let me go. He didn't give up and neither did I.

For me the wait wasn't too bad because I wasn't on dialysis. I felt pretty good before my transplant. At the same time, I felt weird praying that it would happen soon because it was like I was praying that someone would die so that I could have theri kidney and pancreas. It's an odd situation to be in. I came home 5 days after my transplant and just cried my eyes out. I'm still not sure exactly why but I think it had to do with feeling so sad for the family of the 23 year old man that my organs came from. I was so very thankful that they were able to make the decision to donate his organs while they were grieving the sudden loss of their son. Just keep doing what you need to do to keep yourself healthy so that when the time does come you are ready and able to have the transplant. It will happen at the right time and hopefully the right time for you is very soon!

I am so sorry that your having to go through dialysis. I know how draining it is to you and your body. Be patient. My nephew was 8 when both his kidneys failed with absolutely no warning 7/05 5 weeks ago he finally got his. My mother has been on dialysis for 2 years now but is over the age limit/health condition to be able to receive one. I will keep you in my prayers. Take care,

Michelle