Question Mark, if I may, was there something specific that led to the two jumps in MELD in April and July? ie. a blockage, infection, ect? Or nothing specific, nothing you noticed as a defined moment? And was it specifically one value in the blood test that drove the increase?
Thanks in advance.
Eric,
Leading up to being listed I had had two ERCPās within weeks of each other. Never had any infections during my time with PSC, thank God. The outcome on the ERCP showed much more worsening in the hepatic duct system. They really had done about all that they could do to relieve the symptoms of PSC as the disease had progressed way up into the small ducts of the liver itself where ERCP cannot reach. Things had really progressed so it was just a matter of time before things turned really bad for me. Iām attaching a photo of my liver that they took out at transplant. You can see how burnt looking it is, shriveled up, etc. The liver is the largest organ in the body, but all that was left of mine was pretty much nothing at all. Again, we are all different, but youāve got to stay on top of this and ask the hard questions to your hepatologist. Let me know how things progress. Sorry about the look of this liver, but I hope it gives you an idea of how bad things can get. The two lighter fleshy looking things sitting on top of the liver is my gallbladder.
Mark
Hi Support Team,
My disease has progressed to a level of Liver Cirrhosis. My MELD score is 21. I have grade 2 esophageal varices. Doctors say I need liver transplant immediately. I donāt make enough to fund my care. Do you guys happen to know any AID foundation or NGOās which can help me in my case. I donāt want to die, I have a six month old child. Please let me know if you know someone or if I can get in touch with someone.
Thanks,
Mithil Chandok
Hi Mark, sorry I did not know about fundraising guidelines. Mark can you help me know how dangerous is meld score 21 and bilirubin above 12, haemoglobin 7 and grade 2 esophageal varices. If I dont get transplant soon will I die from liver failure or something else.
Mithilcandok,
Thanks for your post. Well MELD 21 is climbing up there, so if I were you Iād definitely make sure Iām on the transplant waiting list. I was listed at a MELD of 12 but within 6 months my MELD had climbed to 36 and I was transplanted. Keep in mind that a MELD of 40 means you are about at deaths door. So very important to get listed.
Regarding bilirubin of 12 that is quite high. Have you had an ERCP done to try and clear the blockages in the ducts? That will certainly help both your bilirubin and MELD drop back done some. Certainly a concern about the esophageal varices. Hopefully that will not get worse.
I canāt say of course if you are going to die of liver failure, but I will say that you need to get listed for transplant sooner than later. We are all different and there are folks here that have had high MELDs for years and are still with us. The high bilirubin and MELD is very concerning however.
Take care and keep in touch.
Mark
Good point DHZ. I didnāt catch that but it is mighty low. Thanks.
Mark
Hi DHZ,
I contacted my doctor about the lower hb he said no supplements at this time. I am planned a transplant in June this year. But just waiting for finances. I am also noticing nosebleeds on occasions is it because if esophageal varices or itās just dry weather. Not sure, but if it is from varices how serious it is. What should I do?
I am on complete vegetarian diet, no meats of any sort. A protein supplement is recommended by doc. UC seems to be under control. Reports also indicate hepatitis e positive. But no medicines are recommended for this.
I would appreciate this communityās help in understanding if I am close to death bed or I can be saved.
Hi Mark,
I am back and healthy. I got the liver transplant, donated by my brother. He is o+ and mine is b+ doctors found a match and did the transplant. Surgery happened on 8th June 2019.
Now I really need this communityās support for after care. What should I do and what I shouldnāt?
And the most important question of all can psc or ulcerative colitis come back?
A hearty congratulations to you Mithilchandok. What wonderful news that your brother was a match and you were able to get a portion of his liver. Iām sure your transplant team outlined a long list for you, but we can certainly help. For starters, donāt sit around during your recovery but try and walk some each day. Donāt over do it but the more you can walk it will help with the scar tissue pain that comes from the surgery. By now hopefully you are off the narcotic pain meds and just taking over the counter Tylenol or equivalent. That strong stuff can stop up your bowels so be careful.
Protecting yourself from germs is the biggest thing especially in the first year year after transplant as your immune medications are set so high to prevent rejection. I really had to make a decision early on to not shake hands or have hand contact with folks unless they had just washed their hands. The less human contact with others the better. As time moves on the immune suppression will be dropped more and more to the lowest possible levels that your body can tolerate without any rejection. You still have to be careful of germs but right now more care is needed. Avoid, buffet type dining. You can pick up germs from those who went before you. Any meats you make for sandwiches, like ham, turkey, etc., processed meats, zap them in the microwave till you see steam to kill any bacteria that may be present. Iām sure others will chime in with other suggestions but these are just a few things to get you thinking.
As far as PSC recurrence, yes it can happen. My doctors at Duke told me though that by keeping me on Prednisone for a full year post transplant should prevent this from occurring. When I left the hospital I was on 20 mg a day, eventually tapering down to 5 mg a day for a full year and then finally tapering off. Iām almost 4 years out now with no recurrence. Do you know if they did the Roux-en Y procedure where they rerouted your bile ducts to your intestines instead of connecting back to the common bile duct? If they did, this also lessens the chance of recurrence.
Hope this helps. Feel free to write with any questions. Itās rather late for me right now here in North Carolina so I have to keep this short. Take care and again very thankful you got your transplant.
Mark
Hi Mark, yes the doc told me he had to reroute an opening directly into my small intestine. And yes you are also right about the medicines my bowel movements are a little compromised so I stick more to liquids and fluids, soups then hard food. And I take more fresh fruits boiled eggs, and fresh veggies as India is mostly vegetarian but I do often take chicken.
I am getting my discharge today as it is morning here in India. By evening I will be at home. I have made a long list of not to doās like locking myself in a room, avoiding visitors as much as possible. Keeping my home clean, my phone, computer disinfected always.
Eating is restricted at home only, not going out. Maintaining proper self hygiene I know I had to treat myself as an infant. What else you recommend me not to do.
And yes my brother came as a blessing for me. He saved and added few more years to my life.
When I read internet research something still chills me is that some people dont live more than 10-20 years after transplant. I have a nine month old son I want to see him grow. So this is the only thing i worry about right now. If I am able to see that coming?
Mithilchandok,
Donāt let the things you are reading on the internet scare you. You have a fresh lease on life now with your new liver. As long as you maintain your medications on time, every time, get your labs done as instructed, and maintain a healthy life-style you should live to see your grand children and maybe your great grandchildren. Donāt live life with the dread that your liver is going to give out. You are more likely to get hit by a truck going down the road than to die early from your liver giving out. Of course stay away from ALL alcohol, FOREVER!
And as far as eating at home all the time, that will not be forever. Right now you just need to be careful, but donāt let it hinder you from enjoying the food at restaurants, etc., just use caution and eat at reputable establishments. Hereās another tip that I have practiced. I go to the same barber to get my hair cut each time, been using the same guy for years and years. After my transplant, I asked that he clean his barber tools before he cuts my hair each time and he was more than glad to accommodate me. Even now, 4 years out he does it every time without asking. Just another way to avoid picking up otherās germs. I donāt do this so much now, but early on post-transplant, if I had a doctors appointment or dentist appointment they would allow me to wait either in my car till they were ready to take me back and would call my cell phone, or they would allow me to wait away from the main waiting room just to be careful. You donāt have to wear a mask all the time. It was your liver that was replaced not your lungs. 
I canāt express enough either about good oral hygiene. You are on some strong immune suppressants and that will affect dental health. Make sure you get your teeth cleaned every 6 months. Make sure you are brushing 3 times a day and flossing daily. This goes a long way.
Well, these are a few things to ponder. Hope you have a good evening.
Mfark
thank you mark, your tips and guidelines are very helpful. I will make sure to follow up everything and will be in touch. this community helped me a lot.
Mithilchandok,
So glad you received your transplant. Yes, there is a chart I have seen showing the percentages of death after so many years. It still is relatively low, and I would like to see that chart superimposed with that of the general population. I suspect there would not be much difference. Maybe a little elevated.
My transplant was two years and one day before yours!
I hope things keep getting better for you.
Jeff
