Liver and Pancreatic Duct Dilation

Posted by frances007 @frances007, Dec 11, 2022

I have been struggling with this condition for 2 years, and currently waiting to get an appointment with a GI specialist at UCDAVIS. In the meantime, my doctor has been ordering many lab tests, one of which confirmed a diagnosis of hypogammaglobulinemia. He advised that I need 3 more lab tests to confirm what he is looking for, so I will get them done this week. While I am anxious for many reasons already described, I am beginning to feel somewhat more hopeless as a result of this new information. I do not dwell on my disease process, I stay as busy as I can; however, I have found it is the fear of "not knowing" that bothers me the most. I am an information junkie, asking many questions and things of that nature. I feel myself being more tired than usual, but force myself to continue with my routine of walking, lifting weights, art work, cooking for others, and anything else to keep my mind focused on the moment. I must admit that sometimes while engaged in my painting, I stop and ask myself, "to what purpose am I continuing to do these things?" Does anyone else feel this way? It has been especially difficult because the therapist I was working with abandoned me so suddenly and I have not been able to find another therapist to talk to at this time. The company she worked for completed an internal investigation, of which I was a part of, and that in itself was stressful. The company sent me all of her treatment notes, and I have been unable to allow myself to read them. Medical records I am fine with and have a grasp of the concepts, but psychiatric records about myself almost seem so damning for lack of a better word.

Interested in more discussions like this? Go to the Digestive Health Support Group.

Hi @frances007, I know you were talking with others like @19kcm56 @ldestella @autumn12575 @dtalent @hopeful33250 @kate1951
– Dilated pancreatic duct: Should I get a second opinion? https://connect.mayoclinic.org/discussion/dilated-pancreatic-duct/

You might find these related discussions also helpful as you learn more about your condition and confirm a diagnosis.
– Hypogammaglobulinemia: https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/
– Low values on SPEP enough to diagnose hypogammaglobulinemia? https://connect.mayoclinic.org/discussion/low-values-on-spep-enough-to-diagnose-hypogammaglobulinemia/

I'm sorry that you find yourself without a therapist at this time when you could use her the most. You're wise to recognize that reading her summary notes might not be helpful for you at the moment. It's so hard to find a new therapist and a good fit. What road blocks are you encountering as you try to find a new therapist?

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@colleenyoung

Hi @frances007, I know you were talking with others like @19kcm56 @ldestella @autumn12575 @dtalent @hopeful33250 @kate1951
– Dilated pancreatic duct: Should I get a second opinion? https://connect.mayoclinic.org/discussion/dilated-pancreatic-duct/

You might find these related discussions also helpful as you learn more about your condition and confirm a diagnosis.
– Hypogammaglobulinemia: https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/
– Low values on SPEP enough to diagnose hypogammaglobulinemia? https://connect.mayoclinic.org/discussion/low-values-on-spep-enough-to-diagnose-hypogammaglobulinemia/

I'm sorry that you find yourself without a therapist at this time when you could use her the most. You're wise to recognize that reading her summary notes might not be helpful for you at the moment. It's so hard to find a new therapist and a good fit. What road blocks are you encountering as you try to find a new therapist?

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Thank you for responding. I appreciate the support.
My doctor has set me up with a new company that provides tele-therapy, and I had my first session last week. It was more of a "meet and greet" than anything else. We will talk again this week, and I will decide if the person is a good fit. Because my former therapist wrote on my account that I was dying and needed 1:1 in person therapy, no therapist at her company will accept my requests for help. As such, I have submitted a complaint letter to the company and notified my insurance carrier about the same. I am unable to attend in person therapy due to transportation issues. Also, most therapists in my area will not accept an assignment. In other words, they want me to agree not to seek reimbursement from my insurance carrier for their services. I have no co-payment, and have coverage for unlimited psychotherapy, so I am unwilling to sign any waivers. I remain hopeful that the new therapist works out; however, I had developed such a good relationship with the former therapist that it might take awhile before I feel as though this new person is a good fit. Terminating me as the former therapist did was wrong on so many levels, and while I gave thought to submitting a complaint to the California Board of Behavioral Health for patient abandonment, I decided not to because the process is a long and stressful one. I have to say though, that I have never felt as betrayed as I did when this therapist decided to end treatment when things were going so well (in my mind). On the other hand, my work with her enabled me to feel more empowered, which is why I decided to submit a complaint directly to the company she worked for and I expect a response soon. It's hard enough in today's world to find any sense of humanity, and honestly I was pretty blown away by her untimely and questionable termination. One would think they could expect more from a licensed professional, but I guess my expectations were too high.

REPLY
@colleenyoung

Hi @frances007, I know you were talking with others like @19kcm56 @ldestella @autumn12575 @dtalent @hopeful33250 @kate1951
– Dilated pancreatic duct: Should I get a second opinion? https://connect.mayoclinic.org/discussion/dilated-pancreatic-duct/

You might find these related discussions also helpful as you learn more about your condition and confirm a diagnosis.
– Hypogammaglobulinemia: https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/
– Low values on SPEP enough to diagnose hypogammaglobulinemia? https://connect.mayoclinic.org/discussion/low-values-on-spep-enough-to-diagnose-hypogammaglobulinemia/

I'm sorry that you find yourself without a therapist at this time when you could use her the most. You're wise to recognize that reading her summary notes might not be helpful for you at the moment. It's so hard to find a new therapist and a good fit. What road blocks are you encountering as you try to find a new therapist?

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I saw my PCP today for a follow up appointment, and it was apparent to me that he was uncomfortable and stilted in his answers to me, and this is probably related to the recent grievance I filed against Sutter. I called UC Davis Medical Center today to find out if my referral had been received and was told it had been, but that there were no records or insurance authorization sent along with the referral. I explained to my doctor that the relevant records needed to be sent to UC Davis in order for them to make an appointment for me. His response was that Sutter and UC Davis are "not friends" and referrals to them are difficult. That being the case he asked me if I wanted to be referred back to a Sutter clinician in San Francisco, which I declined. I did inquire about the hepatologists that come to Sacramento on a rotating basis, and his response was that those doctors only see patients who are in need of a liver transplant, which I found hard to believe especially since there are no hepatologists at Sutter Sacramento, Roseville or Davis California. Besides that, transportation is an issue for me, a direct cause of a doctor at Sutter misdiagnosing me with dementia many years ago, which resulted in me losing my license and car. That diagnosis was properly changed when I consulted with a different neurologist who said I did not have dementia and never did. But since I no longer had a car, it made no sense at the time to renew my license.
I complained to him about the ongoing itching and swelling of my ankles when I wear socks, which he declined to associate with my liver disease. I told him that while I may still have normal liver values, it is possible to have the itching that goes along with my "disease." He refused to accept this, but I've let that go for now.
I further asked him to clarify to me what he is looking for by ordering labs associated with Lambda light free chains, and he declined to answer until one more part of the test is completed. When I told him that I was beginning to feel that "I did not matter" to either Sutter or him anymore, he offered to refer me to a new PCP, which I declined.
In hindsight, perhaps I made the wrong decision to file the grievance, however it was done with a tremendous amount of forbearance and it was never my intention to have anyone scrutinized other than the gastroenterologist who had been treating me for 2 years for my liver/pancreatic condition.
I have an incredible sense of foreboding that I cannot let go of as I continue to navigate this insane medical system and I am growing tired of advocating for myself for things that really should be part of the natural course of medical care. In any event, my former rheumatologist is calling me tomorrow and perhaps she can shed some light on my situation. It's a sad state of affairs when one has to rely upon a retired clinician for answers, but she is a close confidant and that makes all the difference.

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Well, I have a story to tell today.
After being told for almost 3 years that liver specialists in San Francisco at Pacific Medical Center only come to Sacramento to see those in need of a transplant, I have now found this to be untrue. Out of curiosity I called the doctor's office, whose name I found on Sutter's list of hepatologists, and who I had originally wanted to see, and was told that "YES" the doctor could see me. Having said that, I finally have an appointment on March 7, 2023 in Sacramento. She is affiliated with Sutter and specializes in autoimmune liver disease. I guess my perseverance paid off. I saw my PCP yesterday and told him the same. He seemed a bit nonplussed, perhaps because I had been misinformed about Sutter and their liver disease program. I also asked him to run some labs that had been suggested by my old rheumatologist, which he has ordered for me.
In all honesty I am excited by this appointment, but at the same time wondering how many others have been told that there are no liver specialists who come to Sacramento to treat their problem, unless of course, they need a liver transplant. I have been living with this disease for just about 3 years. I do have a tendency to "overthink" things, and last night started thinking to myself, "I just hope it is not too late." I have to admit, this has been a very long and arduous road for me; I am just glad I persevered. I could not have done this without the help of those at the Mayo Clinic who provided me with the support and knowledge I needed in an effort to keep putting one foot in front of the other. Thank you to all of you who have provided me with the encouragement to keep advocating for myself.
I will, if you don't mind, provide you with an update after I see the good doctor on March 7, 2023. What a story!

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@frances007

Well, I have a story to tell today.
After being told for almost 3 years that liver specialists in San Francisco at Pacific Medical Center only come to Sacramento to see those in need of a transplant, I have now found this to be untrue. Out of curiosity I called the doctor's office, whose name I found on Sutter's list of hepatologists, and who I had originally wanted to see, and was told that "YES" the doctor could see me. Having said that, I finally have an appointment on March 7, 2023 in Sacramento. She is affiliated with Sutter and specializes in autoimmune liver disease. I guess my perseverance paid off. I saw my PCP yesterday and told him the same. He seemed a bit nonplussed, perhaps because I had been misinformed about Sutter and their liver disease program. I also asked him to run some labs that had been suggested by my old rheumatologist, which he has ordered for me.
In all honesty I am excited by this appointment, but at the same time wondering how many others have been told that there are no liver specialists who come to Sacramento to treat their problem, unless of course, they need a liver transplant. I have been living with this disease for just about 3 years. I do have a tendency to "overthink" things, and last night started thinking to myself, "I just hope it is not too late." I have to admit, this has been a very long and arduous road for me; I am just glad I persevered. I could not have done this without the help of those at the Mayo Clinic who provided me with the support and knowledge I needed in an effort to keep putting one foot in front of the other. Thank you to all of you who have provided me with the encouragement to keep advocating for myself.
I will, if you don't mind, provide you with an update after I see the good doctor on March 7, 2023. What a story!

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Hello @frances007

It does seem like your persistence has paid off in getting an appointment with a specialist! I hope that you get some helpful information from this upcoming appointment.

Are you beginning to make a list of questions that you would like to address at your March 7 appointment?

REPLY
@hopeful33250

Hello @frances007

It does seem like your persistence has paid off in getting an appointment with a specialist! I hope that you get some helpful information from this upcoming appointment.

Are you beginning to make a list of questions that you would like to address at your March 7 appointment?

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Thank you.
Yes, I am in the process of formulating some questions for the doctor when I see her in March. My former rheumatologist will be of great help with the important questions I will need to ask. She too, although retired, has been doing some research for me which has been very helpful. I have realized that when my PCP asked me a couple of weeks ago if I wanted a new doctor that that was "doctor speak" for "I don't know how to treat you, or your condition is too complicated for me." I told him I did not want a new PCP and that I will continue to work with him as well as my friend, the former rheumatologist, who he too knows and respects.
In all honesty, this "disease" I have feels quite daunting. Now that I have the appointment I have waited so long to obtain, I find myself wondering or perhaps worrying that the "wait and see" approach which was taken up until this point, has caused further problems. I usually do not get anxious about my health, but now I am beginning to feel somewhat unsettled, perhaps it is my fear of the "unknown." I am scheduled to have an abdominal CT scan next week for significant pain I now have just to the left of my epigastric area. Also, my doctor is now consulting with a hematologist to discuss some of my lab results, which is only causing me a sense of heightened stress for lack of a better word.
I actually called Sutter yesterday and spoke to someone in patient services to tell them about my experience. More specifically, I was concerned that other patients with liver disease may be told the same thing I had been told about seeing a liver specialist in the local area. I did this not to cause problems with my doctor, but to alert them of my experience as well as the difficult time I had getting the referral that I secured.
Long answer to a short question. I appreciate your kindness and concern.

REPLY
@frances007

Thank you.
Yes, I am in the process of formulating some questions for the doctor when I see her in March. My former rheumatologist will be of great help with the important questions I will need to ask. She too, although retired, has been doing some research for me which has been very helpful. I have realized that when my PCP asked me a couple of weeks ago if I wanted a new doctor that that was "doctor speak" for "I don't know how to treat you, or your condition is too complicated for me." I told him I did not want a new PCP and that I will continue to work with him as well as my friend, the former rheumatologist, who he too knows and respects.
In all honesty, this "disease" I have feels quite daunting. Now that I have the appointment I have waited so long to obtain, I find myself wondering or perhaps worrying that the "wait and see" approach which was taken up until this point, has caused further problems. I usually do not get anxious about my health, but now I am beginning to feel somewhat unsettled, perhaps it is my fear of the "unknown." I am scheduled to have an abdominal CT scan next week for significant pain I now have just to the left of my epigastric area. Also, my doctor is now consulting with a hematologist to discuss some of my lab results, which is only causing me a sense of heightened stress for lack of a better word.
I actually called Sutter yesterday and spoke to someone in patient services to tell them about my experience. More specifically, I was concerned that other patients with liver disease may be told the same thing I had been told about seeing a liver specialist in the local area. I did this not to cause problems with my doctor, but to alert them of my experience as well as the difficult time I had getting the referral that I secured.
Long answer to a short question. I appreciate your kindness and concern.

Jump to this post

@frances007

Your anxiety is normal, and I understand your concerns. As much as possible try to keep yourself occupied with other activities that would bring you pleasure

Is there something you can do today that will help you focus on something other than your upcoming appointments?

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Frances, thanks for your post. I have Bile Duct and Liver cancers. I have chronic itching everywhere on my upper body especially on my arms, neck, chest, back and scalp. In my research I found that itching and bumps on my arms are a symptom of Bile Duct cancer. I have "normal" liver biomarkers in blood tests. Feel free to contact me on this forum. John in Houston.

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@jalewallen74

Frances, thanks for your post. I have Bile Duct and Liver cancers. I have chronic itching everywhere on my upper body especially on my arms, neck, chest, back and scalp. In my research I found that itching and bumps on my arms are a symptom of Bile Duct cancer. I have "normal" liver biomarkers in blood tests. Feel free to contact me on this forum. John in Houston.

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Thanks for the comment and support.
I just finished sawing and sanding enough wood to make about 15 presses for the flowers I collect, press and then use to make greeting cards. My cards are quite beautiful, and a friend is going to help me start selling them online.
Something happened to me last Friday while I was visiting a friend who I had felt like was a sister to me. This individual was in fact, the first agent on my advance healthcare directive and my emergency contact. She was also going to go with me to my upcoming appointment with the liver specialist as she has a medical background. In any event, she is also bipolar and I am not quite sure what triggered her bipolar rage attack upon me, but I have to say her "attack" upon me felt visceral and I am still trying to process that and the loss of this friendship and also the support she had given to me. As a result, my symptoms have increased; more stomach issues, no appetite, itching and things of that nature.
I will discuss everything tomorrow with my therapist. I realize even more now that because of my illness I need to be around healthy and stable people. While we attend church together, I will now find a new one when I am ready to do so. As I may have mentioned before, this disease or whatever is going on inside of me, has made me feel more empowered. I have to keep reminding myself that I have no control over what is going on, and try to remain focused on those things that bring me joy. My artwork and listening to music on my headphones is something I do to escape anxiety over my illness, lack of aggressive treatment etc. I am also fortunate to have others in my life who I can trust not to "go off" on me as this person did last week.

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Francis. Thanks for your very powerful and personal post. I just finished writing a letter to a lady in prison about how our trials may be preparing us for future blessings. I encourage her that prison will not last forever and she and I discuss our Spirituality and Bible Study. Your greeting card project sounds like good therapy. I am sorry to hear about your issues with your bipolar friend. I have a friend who is bipolar and she has to "stay on her meds" to be "civil". Stress can make our symptoms worse for sure and the worry of an upcoming medical appointment or test is stressful. You can always count on me for support at any time. Sharing is good therapy for me also. John

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