Hi Everyone,
A month ago I saw my specialist at Mass General. She said the MRI shows complete atrophy in my right hepatic lobe and on physical exam it is not good. It has been 11 yrs since diagnosis so I consider myself fortunate to have been in hospital only once. I was told to look for a live donor. Right now I have had a temp, RUQ pain especially after eating, and the dreaded diarrhea and extreme fatigue. I’m 100 miles from my specialist so I was told to go to my hometown ER for evaluation. Lab results showed high WBC. I’m now on flaglyl as well as levaquin.
It’s a comfort to me logging onto this site because I know I am not alone with this disease. Mentally and spiritually I am strong, it’s just that the physical symptoms take so much out of me. I led a very active life before, today I dare not walk my dog because of my unpredictable digestive system. As always I know this will pass and I will be out walking her soon. There are just days I miss the healthy me.
I am a Dietitian (until I had to go on disability) and I eat a healthy diet. I walk when I am able. I have several supportive family members and close friends. I now actually have hope moving forward thinking of receiving a live liver transplant. There are times that despite all the positive things I do for myself I still get sick. I live in the day and long for a better day.
Well, I guess you've been lucky to be so symptom-free to this point. But seems like it has all come crashing down, and you're living with the day-to-day feeling of not knowing how your day will shape up. I am so sorry for that. You have a good outlook - living in the day. And dealing with the symptoms as they come up. That will help you as you get closer to transplant. I hope your live donor search is successful soon! The testing takes a month per candidate, just so you know. Have you talked with the transplant coordinator yet? They can fill in a lot of answers for you about what to expect. And they will answer questions you didn't know to ask. Some of the information from the TC will help you in your search.
You said you're 100 miles away from your specialist. I hope your hometown ER and hospital is able to provide definitive care for you.
Well, I guess you've been lucky to be so symptom-free to this point. But seems like it has all come crashing down, and you're living with the day-to-day feeling of not knowing how your day will shape up. I am so sorry for that. You have a good outlook - living in the day. And dealing with the symptoms as they come up. That will help you as you get closer to transplant. I hope your live donor search is successful soon! The testing takes a month per candidate, just so you know. Have you talked with the transplant coordinator yet? They can fill in a lot of answers for you about what to expect. And they will answer questions you didn't know to ask. Some of the information from the TC will help you in your search.
You said you're 100 miles away from your specialist. I hope your hometown ER and hospital is able to provide definitive care for you.
Well, I guess you've been lucky to be so symptom-free to this point. But seems like it has all come crashing down, and you're living with the day-to-day feeling of not knowing how your day will shape up. I am so sorry for that. You have a good outlook - living in the day. And dealing with the symptoms as they come up. That will help you as you get closer to transplant. I hope your live donor search is successful soon! The testing takes a month per candidate, just so you know. Have you talked with the transplant coordinator yet? They can fill in a lot of answers for you about what to expect. And they will answer questions you didn't know to ask. Some of the information from the TC will help you in your search.
You said you're 100 miles away from your specialist. I hope your hometown ER and hospital is able to provide definitive care for you.
I too, have fairly advanced disease and the diarrhea has been pretty explosive in the recent past. A combination of changes have made the problem quite tolerable. I now am eating a fairly low fat diet (esp. no cheeses) I started taking a good probiotic (one/day) from Renew Life (Ultimate Flora Critical Colon - 80 billion colonies), two Tums a day, and I'm taking a prescription beta blocker (Nadolol) for my portal hypertension. The combination has almost completely stopped the diarrhea.
Of course, everyone is different, and you should check with your physician on these changes. I believe the probiotic is the main secret for me.
Thanks Danabee. It’s nice to feel one among many with this group rather than the people who have no concept of PSC, which is even some docs. One ER doc said he didn’t realize PSC affects bile ducts! I asked for a doc that had an understanding of it and got one. We really know more than some docs. I sometimes feel like a teacher explaining this disease. Fortunately I know the good docs that teach me some. Anyway, what I got out of this last ER visit is that I will always bring someone with me that can be my advocate in case I’m not capable of making a sound decision.
And yes I plan to continue drumming on my beautiful pair of Gon Bop drums playing in The Rhythm Circle group. We drum spiritual Afro-Cuban rhythms as well as Haitian and Ghana.
Congacindy, I have to go to one ER in Denver - the one with the Transplant Center and a hepatology fellow on call 24 hours. Only there am I assured that I don't have to jump through hoops so that the care team has some understanding of PSC. The one at University Hospital knows and I have a much easier time of it.
I also carry a medical history sheet with me listing doctors (including internist, but primarily hepatologist), all diagnoses, and all current meds. Plus some special notes - my WBC never gets above about 5,000 even when I'm having cholangitis and they DEFINITELY need to know that. The nurse absolutely loves it when I whip out that medical history! And I'm not forced to do more talking and listing of meds (I always miss something if left to my own devices when I'm sick) than I need to. Best thing I ever did for myself. I keep it to one page so it's easy to scan, with bullet marks, bolding, etc.
It would probably be a good idea for me to put together another page with some important PSC information should I end up in an ER without PSC-knowledgable people. It happens sometimes. I usually end up going to the ER alone. But it's possible to advocate for yourself as long as you have prepared some handouts ahead of time - it must be the teacher in me! :)
I am new to your site but have learned a lot by reading your experiences. My husband has PSC and is going through many of the same things you all are. I appreciate the candid honest comments and also helpfull insights in dealing with it.