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Sat, Apr 25 6:37pm · Liver transplant support group in Transplants

Thank You

Sat, Apr 25 6:31pm · Liver transplant support group in Transplants

I was surprised by the tumor. I should know the results next week. What’s hard on me is I don’t have any family in the U.S.

Fri, Apr 24 9:03am · Liver transplant support group in Transplants

I have had ERCPS since 1990 which helped with that awful scratching. However, the Doctor told me yesterday that the ERCPs days are over as I’m not getting a year out of them anymore. I have a tumor in the bile area. . . Won’t know the results until next week.

I’m worried about getting a liver transplant.

Jun 16, 2019 · Primary Sclerosing Cholangitis (PSC) in Transplants

I forgot to mention that my Doctor thinks twice a year for 10 minutes is enough to see me

Jun 16, 2019 · Primary Sclerosing Cholangitis (PSC) in Transplants

I have a liver specialist and a nurse. The specialist never contacts her patients, nor does she participate in ERCPS. Her Nurse is useless. I just think she doesn’t know the severity of PSC. She likes to use “my chart.”

Jun 15, 2019 · Primary Sclerosing Cholangitis (PSC) in Transplants

I had an ERCP on 15th May and unfortunately it didn’t get rid of the scratching. I contacted my Nurse and Specialist. I begged them not to let me slip through the cracks. Both ignored me.
However, The Doctor that performed the ERCP had his Nurse contact me. An appointment was set up for 5/28. When the Nurse saw me, I could see her reaction to my body that was full of scabs and blood from scratching. She wanted to have blood work done immediately, but that Department was closed. She begged me not to fly home to Ireland, but I had my flight paid. I had only 90 minutes to get to my flight to check in etc. I told that Nurse that my own Nurse and Doctor ignored my begging plea to see me before I flew home and ignored me.

Anyway, I returned from Ireland, had blood drawn. I’m now waiting for an MRI on 24th June. Until then, I continue to destroy my body by scratching

May 20, 2019 · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants

I have a Hematologist who never picks up the phone to discuss my condition. She also believes that twice a year is enough to see her and get blood work done. When I do see her, she sees me for 20 minutes and never looks into my eyes.

Her Nurse hasn’t a clue and believes it’s alright to e-mail through “my chart.” I have sent a few condescending messages questioning why she won’t pick up the phone to answers a few simple questions to give me peace of mind. I also told her she was “cold” and in the wrong profession. She never takes responsibilities for her errors. She consistently blames other people. I find it difficult in dealing with liars. She doesn’t understand what PSC is.

I just don’t know who to turn to now. My faith in my Doctor and Nurse is soul destroying

May 20, 2019 · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants

Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.

Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.

Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.

I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.

I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.

My MELD score is only 9, or was 9 the last time I checked.

How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.

Any words of wisdom? What’s the next step for me.