Hello! I am brand new here. I was diagnosed with PSC in 2001 when I had very high alp when I was pregnant with first child. I believe I had slightly elevated alp before that but my GI doctor at the time overlooked it. Now I am 16+ years since onset and having more symptoms than before. I have always felt pressure on the right side of my mid section but now that has increased and my liver feels enlarged and I just feel very uncomfortable. I am also feeling effects on how much I can eat. I have always had a good appetite but now that is down and I’m feeling like I can’t eat as much. I have the full feeling most of the time.
I had a liver specialist that I had been seeing once a year but he left San Diego at the beginning of this year around when I was supposed to see him again. Another doctor took over for him and they were supposed to call me and get me set up with her but I never heard from them and I was feeling ok so I did not call them. Well a few weeks ago I started to feel really bad. Nausea off and on. Some pain that I had never experienced. Both of those have subsided but while that was going on I tried to get in with my new doctor and left messages describing my symptoms and basically was told that she thought it sounded more like IBD and I needed to talk to my GI doctor and I could not be seen until January. Now I know I’m not a doctor but I know my body. This is not from IBD (I have UC in remission btw). I am so upset that she would blow me off like that. I was able to get into my primary care dr and get bloodwork done. Still waiting on the results. I’m wondering where to go from here. I’m considering calling the hepatology department my new dr is in and switching to a different dr. Anyone familiar with hepatologists in SD, CA? Or possibly traveling to either Stanford or Mayo Clinic to see a competent dr. Thoughts?
If I were you, I’d find me another practice to take my healthcare to. With a definite diagnosis of PSC I strongly recommend that you stay only with a hepatologist that is connected with a transplant hospital. I’d go with either Mayo Clinic or Standford as you said. That doctor didn’t even take the time to hear you out. From the way you wrote your post it sounds like she was relaying all this information back and forth. She didn’t even have the character to pick up the phone and call you or have someone call for you to come in. You don’t need their business.
Well, that’s my two cents worth. Thanks.
Thank you Mark! Unfortunately, I think there is only one hospital with a hepatology department near me but I do believe there are more experienced doctors there and specifically ones experienced with transplants as I’ve been reading its very important to be in with a transplant doctor. I will be calling to get switched to a different doctor. I’m also thinking that once I get caught up with routine tests I will be making an appointment with Mayo Clinic for a second opinion. It’s time to be proactive. Do you know at what point someone is placed on the transplant list?
Regarding when you are listed for transplant, I’m sure it varies from patient to patient and center to center. MELD scores tend to go up a lot slower than the PSC patient’s liver really is doing. For me, I was getting sicker and sicker and I knew in my heart my body was really struggling. I approached my hepatologist about being listed and he believed the time had come that we pursue. ERCP’s had become more difficult and the disease had reached on up into the small ducts of the liver itself where his scope couldn’t reach.
I was listed in January, 2015 with a MELD of 12. In April at next labs it had gone up to 19. Then on July 20th at next labs it had shot to 36. I was transplanted two days later. Had I not been listed when I was, I doubt I would be here today. I was fortunate to never get any duct infections, etc., never dealt with hospitalizations or fever, but when the liver came out it was like a burnt hamburger it looked so bad. If you get resistence when you feel it’s time to list, you’ve got to carefully yet firmly and kindly press for that listing. Sometimes, in certain parts of the country, a living donor transplant are some patients only option. Bottom line, don’t wait till you are so sick that you are really going down hill to seek the listing. That’s why being connected with a hepatologist who has direct connection with the transplant hospital is so vital. My doctor served on the transplant committee as well and was able to present my case to the committee. So thankful today for my precious gift of life. I wish for you as well the right doctors and circumstances that if and when you need a transplant, all will go well.
Thank you for sharing and for the great information! Congratulations on your transplant! It must feel amazing! The MELD test is new to me (I hadn’t heard of it before) so I’m going to keep an eye on it myself. Glad you are ok now! Take care!