Should we let Narure run its course?????????

Wayne and Cindy, I am new on this site and just saw your posting. I had a live transplant myself 1 1/2 years ago. I am doing great. I was very sick and dying prior to the surgury. I was unable to get on the transplant list where I lived as I had cancer and there are very strict rules in getting on this list. Understandable, as donars are very far and few in between. I had only one year to live, and I was able to extend this to two years by taking very good care of myself and doing exactly what the doctors told me. As soon as I was in two years remission of cancer, I was eligable to be on the list for the Mayo clinic in Jacksonville, Florida. The wait down there is very minor in comparrison to the national average of 3 to 5 years. The sicker you are, the higher you name is on that list. Unfortunately, the national list only starts calling recipients when their MELD score is 35-40. You are almost in a comatose state at this point in time. The Mayo Clinic does not want you to be that sick at time of surgury so your survival rate is greater. They start calling you when your MELD score is 15-25. Of course if yours is higher they will help you. They are a phenominal medical facility with a transplant facility like no other. They have two teams of transplant doctors, always ready and on call. They always have transplant surgeons ready. Their waiting time for an organ is 2-6 months. I had a transplant just 2 months and 9 days once I was listed. They truly preform miracles. I saw so many sick people that they helped when no one else would. There entire transplant teams tool such great care of me, from day one, I felt a total ease and a great weight was lifted from my shoulders. They just completed a new hospital that is fully staffed and the facilities are equipped to support caregivers as well. I cannot say enought great things about this hospital. You should look up there web page and call them. They are very efficient, too. Their  Mayo Publishing issue of May 2007 has a story of my transplant. This can be viewed in their Web as well. I wish both of you well and lots of luck. With this disease, you must remain strong and fight it, and make sure you are proactive in all physician decisions. Making sure you have the right physicians is a must to survice this deadly disease. You have my prayers.

PopTart

My husband is on the transplant list at Vanderbilt.  He has been on the list since last March. It took us 6 months just to get listed.  My question how can some clinics do more transplants then others and sooner.  How do they get MORE organs.  I was under the impresion that its all run by the same organization.  Vandy has told us my husband will probably get his transplant when his MELD reaches a 25 because he is an O blood type.  When he was listed his MELD was an 18 it is now a 10.  He is just as sick if not sicker now.  We have a handle somewhat on the fluid problem but he has to get blood transfusions alot. In fact he just had the second on in a week.  He's extremely weak and can barely function.  Not much amonia problems.  I am so over this MELD score.  Its driviing me crazy.  We have done everything the Dr. have told us but his MELD keeps going down.  Thank you so much for posting.  It helps us all so much to hear a success story.

JoAnn

Joanne,

The Mayo Clinic in Jacksonville, Florida DOES have a higher rate transplants than any other hospital in our country. They have to follow the guidelines with the national donar list in Richmond, Va. as all other hospitals nationwide, however, they do not decline organs that are not 100% perfect. They also have 2 teams of transplant doctors and once they get the phone call for a donar match, they are in flight and harvest their own organs. No other hospitals have the  capability to do this. The transplant teams are already examing the organ and matching tissue with the chosen recipient for a go. There could be what is called a "dry run" where the organ didn't work out. You, as a recipient, would not be aware of this until hours later. It's all a little nerve racking, but well worth it. As an example, I received my call at 8:02 am and I had 4 hours to arrive at the hospital. Being 2 hours away, I made it there in sufficient time. You must always have a back up plan for traffice problems, etc. The call can come at any time. I had been told that the liver matched perfectly for me however it tested positive for hep c. I accepted it anyway, as I knew it would be a matter of time a new liver would get the disease from my blood anyway. It was the best choice for me as time was running out. The hep c was back in just one month after transplant and it measured stronger than what I initially had. I immediately began pegasis and ribavarin treatment and remained on this for one year. I tested positive after just two months, but remained on this to keep the disease away. I have now been free of the disease and off of any treatment since June 08, remaining clear. Mayo monitored this with monthly labs by Fedex. They have a list of all of their transplant patients. It is remarkable.In 2006 they completed over 230 liver transplants to Johns Hopkins 20. Mayo just won't turn down organs that can be used to save lives. If it means a small risk involved, it is up to the patient to decide, as I did, and I am alive. I wouldn't be if I had not fund this hospital. They are the best. 

Poptart,   my husband had his transplant in OKC at Integris and they have 2 transplant teams, plus they also go and harvest their own organs, it's very common at most transplant centers.  Every center is different, but I know that most of these people truly care.   We still have a wonderful team.

JoAnn, I'm keeping your husband in my prayers.  Please push things with your doctors and don't worry about the MELD score so much.

Helen 

Poptart

Here's the way it happened.  When my husband was first diagnosed his only problem was fluid.  The Dr. (gastro) here put him on diuretics at first.  After about 2 months his fluid problem worsened (20 liters extracted in one week) so the Dr. sent him to Vanderbilt.  He was admitted at Vanderbilt and they did some of the tests needed to get him listed.  At that time his MELD was about a 13 if I remember right.  They increased his diuretics to such a high dose in order to control the fluid.  The dose of diuretics was so high his creatinine is what made his MELD go to an 18.  Vanderbilt did not want to do a TIPS procedure on him which I'm really glad after reading the problems that can cause.  For some crazy reason the fluid problem just stopped  in June he's not taking near the dose of diuretics as he was, so now his kidney function is much better.  But he has been through so much he's so weak.  Vandy is telling me his MELD will catch up to his body.  Of course they don't know when that will happen.  I just get really burn out becasue its been 1 1/2 year since this all began.  The explanation they give me for the blood transfusions is that he's not losing blood, his body is just not make it fast enough.  I swear he vomited for a year.  At one point he tore his esophogus from vomiting.  They now have him on Neomycin twice a day every day and that has solved that problem.  He only had a few episodes of high ammonia one time being hospitalized.  I feel fortunate for that.  He does not have varices, Thank God.  So thats the story.  I've tried talking him in to moving to another hospital but he wants to stay with Vanderbilt.  We are three hour away so when we do get the call we will have to really hustle!!  Or if he's too sick they can air lift him.  So we just wait and try and enjoy each day as it comes. Now I understand about the harvesting.  Thank you for the info.

JoAnn

Poptart

That is horrible.  I think I could almost write a bood on ER trips.  The local hospital we go to has abut 10 ER Dr. and I know I have seen them all at least twice maybe some 3 times.  A lot of them know nothing about liver disease so I've had to inform them on a lot of things.  Turned out they have been great once I filled them in on a few things.  As you know I have had to become really educated on this horrible disease.  Thank you for your prayers.

JoAnn