Thank you for that. They have not listed me yet. Apparently they want one more MELD score reading. That will be from blood taken on Monday the 14th. I have to see the surgeon, the infectious disease doc, and the hepatologist. I am extremely yellow today and have terrible cramping pain in the bowels and constipation. Welp that’s about the size of the ongoing saga…
My MELD is now at 40 and it has been ten days since I was listed. My main problem is I have a distended belly and lots of gas, cramping, discomfort, feel like I can hardly breathe at times. Also had severe constipation but finally that is under control but in no way do I have normal bowel function. Willing to take any suggestion on that!!
Endrun,
Sorry you are having issues with your bowels. With the liver at such a critical state now it cannot produce the bile to break down the fats in your digestive tract. You will just have to nurse it along until you get the call. Hopefully it will come any day now. we are rooting for you and trust and pray the surgery will go well and you will return to renewed strength and health. Best wishes!
Mark
PSC 2011 / Liver Transplant 2015
I bumped up to 40 and now back to 32 however now have UTI. They won’t give diuretics. They are STUPID. Might as well write me off. Don’t anyone worry about any funeral, I have directed cremation. I was a nobody during my life and that is how it will end. At least the theme of the story is consistent throughout. I am in constant pain and they only gave pain meds for a few days. These people believe in torture. I’m DONE!!
My belly was drained of fluid Wed. of 4.3 liters. Today I feel almost as if I did before the paracentesis:bloated, in pain, constipated, gassy, and miserably tired. I live in a region in my nation where the chances of getting a deceased liver are 3 in 4, which is the very worst region of the nation. I am looking elsewhere but time is running out thanks to how they jerked me around at the first transplant center…
Endrun,
If you are looking for options for another transplant center contact Mariel Carr at Compare Transplant Centers. She is a whiz at matching patients to the best transplant center for their blood type and particular physical situation. http://comparetransplantcenters.com/index.html
Mark
Mark,
Whatever happened with Endrun?
Thanks for asking about him Mollie. I just sent him a private message so I’ll give an update when I hear more. I hope he was able to find a transplant center to meet his needs.
Mark
Mark,
Any word from Endrun? Im so sad with the experience he has had…praying for him.
I haven’t heard a word from Endrun. I hope he’s still with us. Liver disease is a hard thing for so many people. Hopefully he will check back in soon.
Mark
Mark,
Alana has another blood draw in the morning. Also, have you heard from Endrun?
Mollie
Hi Mollie,
I hope her labs continue to improve. I’ll be praying for your visit tomorrow. No, I have not heard a thing from Endrun. In checking the logs, it’s been 39 days since he logged onto the site. I do hope he’s ok. I think I’ll send him an email through his personal account and see if I get a response.
Let us know how Alana's labs turn out. Give her a hug for me.
Mark
I was diagnosed with UC (Balsalazide) at the age of 13. That was 47 years ago. In 2013, I was diagnosed with PSC. In 2015, I had an ERCP, got steptice, then had my gallbladder removed all within 3 days. I’ve had many Colonscopy’s, ERCP’s, MRCP’s, and numerous medications (Urso, Cholestraymine, Colestipol, Welchol, and a couple meds for anxiety) to stop the itching. Nothing worked so far. In 2015, I had an ERCP, got steptice, then had my gallbladder removed all within 3 days.
I have been told Cannaboid Oil may relieve the itching. I do not want to smoke pot or get high, I can deal with the feeling ill, and fatigue, but I want to stop the itching.
I will eventually need a liver transplant, but worried I will not be placed on the list if THC is found in the blood test. I also have been told that CBD does not contain THC, and it will not be detected.
Anyone with thoughts or experiences with CBD?
Rocko
Rocko,
I’d strongly encourage you to avoid the cannibas oil. Any pot found in your blood stream will keep you off or get you kicked off the transplant list. Ask your doctor about prescribing Rifampin. I took 300 mg twice a day and it got rid of the itching 98%. I was on it 4 years prior to transplant. Good Luck!
Mark
Thank you Mark,
My GI doctor is the one who brought up CBD. I have been going to him for 15 years and this is the first and only time he has talked about CBD’s. He knows how much I am suffering from itching, with no relief.
I read all the side effects of prescription medications, and they seem to be far worse than the itching.
I am ready to try just about anything. I the past six months it has become more of a problem for me. I have been getting ERCP’s every three months, and the symptoms of PCS are the same. I decided not to have an ERCP last month, and the itching is over the top. My skin feels like I have insulation in my pores. My skin burns and is getting rough. I use skin moisturizers for protection.
I was prescribed anti anxiety medication once. I could not stay awake, making it dangerous to drive and hard to stay awake at work. So, I no longer take that, not sure if it would have worked, wasn’t able to tolerate it long enough.
So, I am not ready yet to risk not being placed on a transplant list for CBD.
I just don’t know all the facts to make that decision.
Thanks for your input Mark
Rocko
Hi Mark,
My doctor prescribed Rifampin to me. I have been taking in for 3 days. I noticed itching is not as bad as before. However, I have a constant headache and dark urine. I will be contacting my doctor tomorrow (Monday) to follow up.
Have you experienced any side effects from this medication? If so, did you need to adjust accordingly?
Rocko
Rocko,
The longer you are on Rifampin the less the itching will be. As far as dark urine, that is normal. It will probably turn very orange, it stains your underclothes and probably the toilet seat before it’s over. All that’s worth all that trouble to be relieved of the itching. Looking at a list of common side effects is headaches. Hopefully they will ease off soon. You can take up to 3,000 mg of Tylenol a day with liver disease. That’s 2 extra strength Tyleonol’s three times a day as needed.
Common Side Effects of Rifampin:
Heartburn.
Upset stomach and cramps.
Gas.
Diarrhea.
Headache.
Drowsiness.
Fatigue.
Dizziness.
Mark
Hello Mark,
So, I have been on Rifampin for over a month now. I rarely have headaches and the itching has been reduced drastically. I was taking 2 Rifampin in the mornings at the beginning. That’s when I was having headaches and upset stomach (more than usual). I spoke to my doctor and decided to split the dose to one in the morning and one in the evening. This was a pain in the neck, due to trying to work out taking the med one hour before I ate or two to three hours after eating. The headaches stopped with this routine. Last week I made the decision to take my Rifampin before I go to be. All problems solved. I sleep good, no headaches, no upset stomach, and no time table for meals.
I am so happy this medication is working for me. I still itch, but I can scratch and then stop. No more scrapping a layer of skin off or going crazy with itching.
Tim
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Tim,
I’m glad to hear the Rifampin is working for you. I’m sorry if I was not clear originally about when I took my dose. I did always split it up as well. Morning and evening. I think my first dose was first thing when I woke up before breakfast and then last dose about 9 pm at night. I know I wasn’t always faithful about the meal time separation but it didn’t make a huge difference. It was when I tried to save some money and skip a dose here and there that it bit back with a vengence. I hope it gives you long lasting relief.
A very Merry Christmas to you and your family.
Mark
Hi Mark
Merry Christmas!
I just ran into a unique problem. I ran out of Rifampin and called into the pharmacy. I went down to pick it up and was told I had to wait until after January 1, 2018, due to my insurance. WTH??? I take (2) 150 mgs per day, and I am not “abusing” my medication.
I use to have great insurance until our last president. Sorry, should talk politics here.
So, I have to go a week without the only medication that worked to stop the itching. By next week I will be going crazy scratching myself. Luckily I will be seeing the doctor that prescribed the medication, so maybe he can help me out.
Take care,
Tim