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Posts (6)

6 hours ago · Cellcept and Tacrolimus Co-administration in Transplants

I too have had bile duct issues due to a blocked hepatic artery. I had my transplant in June of 2016. All numbers are good and feel good until blockage. I can tell when it happens as my bilirubin spikes and I start the itching. Over the three years I have had a total of about 10 ERCP's. My last was February of this year. I am currently scheduled for my next one in middle of May. I went a period of about 10 months with no stint. I was told in February that if it is not successful this time, my doctor would talk to rest of team and consider opening me back up to do what he called creative plumbing. From what I have gathered, he said it would involve attaching my bile duct to my intestines. I have had as many as seven stents at one time. I have even had the metal stint once or twice. I currently have 2 stints right now. I keep my fingers crossed and have trust in my team. More so have trust in God that he has a bigger plan for me or I wouldn't have received a liver so quick.i hope all goes well with yours and for now I look at the ERCP as a little routine maintenance.

5 days ago · Applying for Disability in MAC & Bronchiectasis

I am a liver transplant patient. When I applied, I went to SSI office about a month after my transplant. I let them know they could contact Mayo for my records. I was approved 2 months later but did not receive any check for another 4 months. They said I had to be disabled for 6 months before it would start. They used my transplant date as start date as i worked up to day of surgery. So i had transplant June 10 and received my first check January 9th. I also had to wait 2 years for Medicare. It cost me $850 a month for my cobra insurance for 2 years. I had to use what 401K my wife and I had to live for 6 months living expenses. Now I have Mayo collections coming after me for $70,000 that insurance did not cover of about $900,000 they did pay. So even when you do go onto SSI, dont expect it to be a cure all.

Thu, Mar 14 11:15am · Liver disease itching in Transplants

gaylea1, I am sorry to hear you are going through it too. They kept me on the transplant list for the first 1 1/2 yrs to 2 yrs in case they had to give me another liver. They told me if they had to open me up it would be better to do sooner rather than later. They put me o. Blood thinners for 18 months and said luckily they worked to create new blood flow to artery. When I asked if it was going to be like this from now on, the doctor told me that ERCP was something they can continue but ultimately they would have to discuss to open back up and think about the risk outweighing the reward. Where did you have your transplant done. I had mine in Phoenix and Dr. Singer did my surgery. He is a great guy. They have such a great team and I totally trust their decisions. Please keep me posted how you are doing. If you have any questions or just want to talk I am here. Very nice to hear from you.

Wed, Mar 13 9:52am · Liver disease itching in Transplants

Rosemary, Thanks for the welcome.My bile duct issue was post transplant. I hav a blocked right hapatic artery that was caused because the donor liver had a larger connection where it was attached to my body. They considered might have to do another transplant. Liver was functioning so well that they waited to see how I would do. It created it's own path of new blood flow so liver was good but bile duct suffered. They continue to put stints in but recently I had ERCP #10 or #11. They said if they cant get it stretched they might have to open me up again and do repair surgery to duct. We are hoping it doesnt come to this.

Mon, Mar 11 11:07am · Liver disease itching in Transplants

I wish I was there. Went once about 10 years ago and sturgis about 5 years ago. That is my best medicine to get out and ride. I'm glad the itching has stopped. It can drive you crazy.

Mon, Mar 11 2:48am · Liver disease itching in Transplants

Hi Jeanne5009, I am a post transplant patient (June 2016) and have experienced the uncontrollable itch. I had it pre transplant and still get post transplant as I have a bile duct issue. I wanted to let you know the ursodiol they speak of is great…. However recently they increased my does significantly which caused the uncontrollable itching to come back. I went from 250mg twice a day to 600mg twice a day. So with right dose it works well. And yes is expensive. It is a tier 4 for medications. Prograff and cellcept ( anti rejection meds) and insulin are tier 3 if that tells you how powerful it is. Hang in there, I know how miserable it is!