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Posts (10)

Sat, Jun 8 9:47am · Post transplant issues: Pancreatitis, Blocked bile duct, ERCP in Transplants

Mine too is for a blocked bile duct. I am not sure what eactly causes it but they explained it as a sludge backup. They had me on ursidiol for awhile to help keep sludge from building up. However they doubled my dose before my ERCP in February which caused me to have a severe itching equivalent to itch when my liver went bad. Shots of benadryl stopped working as i was hospitalized. Thats when they dicovered it was the large dose of Ursidiol making me itch. Hang in there and I hope these get easier for you.

Fri, Jun 7 9:57am · Post transplant issues: Pancreatitis, Blocked bile duct, ERCP in Transplants

Gaylea1 Hang in there. I am coming up on 3 years since my transplant (June 10). I have had to have approx 12 ERCP's since transplant. I have been lucky as to not get pancreatitis but have ended up in hospital a couple times. More so because i waited to go in when I got sick. Once was in the beginning about 3rd time and once because i was camping and didn't want to come home 2 days early (dumb mistake). I went 10 months at one time without a stint and then it clogged again. You learn the signs and get in early but at that point you are normaly in for atleast 1 or 2 nights. When mine are scheduled it is usually in and out in about 3-4 hours. I will say i had a Dr. That had put seven stints in and said he was trying to get it cleaned in all areas. I came home and was violenty ill that night, ended up in ER and i thought maybe he was over zealous this time as it was more stints than usual and first time it made me that sick. He performed next one when i was sick and waited because i was camping. I was a little leary but knew it had to be done as i was in hospital and very sick. He performed on a sunday evening and Monday i felt great. He just performed my last one a month ago and said he was able to remove all stints! Fingers crossed, but i have gotten use to his work and trust his judgment. He said it was the best it has looked in all the ones he has done on me (5 out of 12). In and out 3 hrs and felt great immediately where it usually took a day to feel better

Thu, May 30 9:54am · Uncontrollable high blood sugars in tacro patients in Transplants

I am also an adult post liver transplant patient. However i have type 2 diabetes. I have experienced a problem with sugars too. Prior to my transplant, i had controlled my sugars by diet for 5 years. I was only on Metformin for first 6 months. After transplant they told me i would have to go on insulin. Right after transplant my sugars were in the 400 to 500 range for first couple months due to having to take high dosage of steroids. I remained on insulin for 2 yrs with sugars fluctuating 250 to 300 no matter the diet. Then my sugars started tanking and was experiencing hypoglycemia and they took me off insulin all together for about 6 months. My sugars returned to high numbers and am back on insulin. They are very difficult to control with what you eat but even harder to control when you have to take meds that effect them. I find it very hard as an adult so it must be 10X that when is your child. I have met with nutrisionist atleast 2 or 3 times and have learned about certain natural sugars in items you wouldn't expect. I am strictly a meat and potatoes guy for 53 yrs that loves candy and ice cream. Moderation haa helped for most part but still tough somedays. I hope they can solve your daughters sugars because i understand how scary all this is as an adult so again must be 10X to 100X scarier as a child and for her parents. I know my situation isnt the same but some similarities. Sometimes just getting on this support group to talk or vent gives a little relief of the daily pressures. I hope it helps you too.

Tue, Apr 30 8:29am · It's not all about the MELD Score in Transplants

I was told they take your highest Meld score and go off that. They were draining between 9 and 12 liters every week for 3 months from me. I would gain 25 lbs and then lose it once drained. My Meld score got as high as 28 or 29. When I received my liver in Phoenix, i was on list 30 days. I am also blood type B which they said helped as that put me at top of list for that blood type. When i had my transplant, my meld was in low 20's but the draining was taking toll on kidneys and rest of body.

Wed, Apr 24 8:27am · 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.

Fri, Apr 19 7:55am · 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.