Luba, thanks for joining.
While most people on here are pscers, there are quite a few relatives as well. So we hope you will find yourself in good company, and are welcome to post questions, thoughts, rants, suggestions, to respond to other’s posts…
We hope this forum can help you and your relative with their psc.
Jeff
Hello Jeff,
I am so happy I found you guys! My Mom is 65, She has bpc, she had wbc are low as 1.5 for years, Platelets is 44. Her spleen 20 cm. We did many exams, catscan, petscan, mrIs, 2 bone narrows in different hospitals. Nothing were found.
But all of sudden she got really worse, she has cuts that do not heal, very bad itching, swollen legs and collected fluid in her stomach, that makes it hard for her to breath and cough. She always feels weak, sleepy and tired. She is still controlled by medications, it seems medications are still working, she still does her best to try to help me with her grandson. My Mom is being the best Mother one can be.
Her platelets count is very low, it went down to 27, wbc 0,8, URIC ACID goes down. and her bilirubin went up rapidly from 1.2 to 4, Neutrophils is low as 0.4.
She has big problem with her eyes, and she had glaucoma attack and almost lost her vision. we noticed that it got her condition worse too. Spironolactone seems to reduce platelets count.
Also noticed that MRI contrast bring bilirubin up.
We are in the process to be placed on liver transplant list, her meld score 14 and surgeon said it is very low/no chances to receive liver transplant.
Also we have to do colonoscopy and endoscopy, stress test, eko to be on the list. I am very concerned it could cause some cuts that will not heal and anesthesia will bring her bilirubin even higher and she will not receive the liver anyway. Please advise.
Also we have to do cataract surgery, is it safe to do with her condition?. What to do with her dry eyes? We tried different drops, nothing really help. She is always in pain.:(. Please help.
I am sorry for my bad English, I am originally from Ukraine, my mom asks maybe there is some people who speak Russian here.
Thank you for you support! I am very happy to find people who experience/know these all.
Sorry for many questions. My mom received neupogen twice, and she received platelets infusion once. Also iron infusion.
Could it be the reason why her bilirubin went up?
Also noticed furosemide and nadalol made uric acid to go down.
Mom takes urso 500mg 3 times daily. Maybe she needs to increase dosage? If to take steroids what scheme the best (dosage/days)?
Thank you so much for you help!
Luba, you sent your posts to me privately. If you wish, I will post them on the forum so that more people with their insights can post their responses.
Jeff
Hi Jeff,
Yes, please. I am still learning the forum.
Thank you so much!
Hello Dear lovely people,
Want to send update on my Mom condition and ask for advice. Primary Biliary Cirrhosis with splenomegaly ( spleen is 20 cm), dry eyes syndrome Sjogren, osteoporosis, Her skin became yellow shade and at time her skin is very itchy. Her health is rapidly deteriorating. Recently she was admitted to the hospital for 2 weeks, her lymph node got swollen with about 4 cm mass infection. Surgeon were able successfully drain it. She was on 4 different antibiotics for 2 weeks and she developed new symptoms where excessive fluid is accumulating in her abdomen and legs. She has taken diuretics, but they do not seem to be helping much for abdominal fluid .
Her platelets count is very low (37) and Bilirubin went up rapidly (10) , WBC is 1.2 but some course of steroids and neupogen shot increased to 2.4. After antibiotics her Creatinine Is 0.70. Albumin is 2. INR 1.4, Pro Time 16.3. Alk 187. She always feels weak, sleepy ant tired. She is on waiting list for liver transplant at Mount Sinai hospital, and her meld score is 22.
She takes Urso 500 3 times daily, Xifaxan 2 daily, Nadalol 10 mlg for her portal hypertension. Prolia shots every 6 month.
My mom transplant team is very good but she is far on the waiting list.
I read about trials on vanco. Please advise should we try vanco ? will it help with my Mom condition?
Thank you. Wishing you all be strong ! Please God bless you.
Luba,
I’m sorry to hear that your mothers condition has worsened. I hope a liver will become available for her soon. I assume she is now getting labs more frequently with her MELD score being up so high? Have you considered looking for a living-donor to donate a portion of their liver? Also, you might consider a dual listing at another transplant center in another region from the one she’s in now.
I can’t speak for the Vanco issue. When I had liver disease I had never heard of Vanco for treating symptoms of PSC. I’m sure someone here in the group may have some insight. I do wish you and your mother well and hope things work out soon for her to have her transplant. She will feel so much better when that time comes. Best wishes to you.
Mark
Thank you Jeff for posting it in right section.
Mark,
Thank you so much for your reply. Mom has labs every 30 days now. Unfortunately, we don’t have living-donor, I called Mayo clinic, Florida but they don’t except NY insurance, Do you know what is better to eat or drink for mom. She is on strict diet low sodium, no salt but Her abdominal fluid does not go away, belly is very hard on touch. She takes diuretics but it does not really seem to help with abdominal, she has pain on her right side, she used to have low hard beat but now she has spikes up to 113.
Thank you so much for your support and kind words Mark. You give my Mom hope. Thank you!
What is her latest bilirubin lab level? I’m wondering if she has a bile duct blockage that needs to be opened up through ERCP.
Also, you might want to consider getting a dual-listing at another transplant hospital in a nearby state. I’d highly recommend you contact Marial Carr. She has a business that helps folks find the best transplant center for their blood type, etc. Her husband had a liver transplant several years ago and this got her interested in this field. It will be well worth your time to contact her at least for advice. Her web site is http://comparetransplantcenters.com/index.html and there is a Contact-Form you can fill out to send her a message.
Mark
Thank you so much Mark for advice! I made an appointment call with Marial for tomorrow.
My mom’s bilirubin is 10.2. We never have done the ERCP. I will call tomorrow to see if we can schedule appointment sooner as we have appointment on August 8. I am very concerned about pain at right side and very hard belly.
Thank you so much for care and help! God bless you and your family.
Luba, 10.2 is pretty high. When mine hit 5.0, my doc wanted to do an ERCP to see what was happening. He got me in quick-let them know how high her bilirubin is. The outside of what is considered “normal” is 1.0.
Luba,
Jeff is right. You need to get her in for an ERCP as soon as possible. She doesn’t need a bad bile duct infection on top of what she’s already dealing with.
Mark
I was able to make an appointment for tomorrow with transplant team. I will ask them about ERCP procedure. They did endoscopy 10 month ago. Is ERC procedure different? Thank you!
What is the risk of internal bleeding with this procedure? Thank you so much Jeff and Mark!
Luba,
There are always risks with this procedure but it is an absolute necessity that she have this done. I had at least 5 during my years with PSC and there are others here that have had many more.
I believe the key here is to make sure the doctor that does the ERCP be one that does these everyday not a resident or ordinary GI doctor. This is an advanced endoscopic procedure that requires a specialist. I’m sure she will feel much better afterwards. I hope all goes well.
Mark
Hello All,
Update on my mother:
She has large volume of abdominal ascites, Mom is very weak, and lost a lot of weight and all meds are very hard on her. Nurses have hard time finding her veins. WBC 1.5 ,Platelets 50, bilirubin 7.4, sodium 134. She had first paracentesis few weeks ago and it went well, 5.5 liters were drained. A month later her abdominal fluid collected again, she coughed and it was hard for her to breath, so she had second paracentesis on Wednesday 10/30/19. 6.5 liters were drained with albumin iv, Drained fluid did not show any sign of infection. 2 hours later, when we came home, she started to have very bad sharp pain in her spleen, became dizzy, started shaking and in 4 hours her fever went up to 104F. Her blood pressure was low 94/44. I called 911, and she was taking to the nearest hospital, than she was transferred to hospital where she is on a liver transplant waiting list. She had Ct scan, and doctors did not see any rupture in the spleen. No one knows why she had such a sharp pain in her spleen. She is on two antibiotics to make sure these is covered for infection. Saturday she woke up, went to bathroom and notice that the abdominal fluid is moving on her left side. Doctors explained that there is a hole and ascites leaking under the skin, and it should absorb back and the hole will close. Please share if somebody had the same situation. Thanks you!
Luba,
I’m so sorry to hear this news about your dear mother. I’m glad to hear that they have admitted her and she’s on the transplant list. Hopefully a liver will become available soon so that she can be back on the road to recover health and strength. Do let us all know how she is doing. I know with ascites, infection and the high bilirubin she must be suffering much. Thankfully she’s in a good place to give her the best of care. I’ll certainly be remembering her during these days.
Mark