Hey GNET, I haven't been able to post much this week. I've been on 24/7 call. I understand your frustration with the MELD score. There are 11 organ transplant regions in the United States (see...
Emma, Your DH has a point. I know you are overwhelmed with all you have learned and all that you fear. You are probably suffering with information overload. You’ll need to pace yourself and take...
Spooky, I’m so very sorry and my heart is with you. I lost my Father (bone cancer) and Mother-in-Law (Parkinson’s disease) some years ago and both were cared for by Hospice. It’s a heart wrenching...
Undone, I’m glad you are investigating your condition and I’m happy to help. When Harvey was hospitalized in 1994 with a severe bout of Crohn’s and then recovered, I was okay with it. I figured it...
Undone, Well, that explains the brain fog. Are they prescribing Lactulose? This will help with the immediate issues. Ask about Xifaxin. This will help prevent recurrences. However, the Xifaxin is...
Kiyoichi, I understand your Dad has no insurance. However, if he is a Singapore citizen, he may be eligible for subsidies by the Ministry of Health with MediSave or MediShield managed through...
Undone, Just take it one day at a time. Some days will be better than others. It’s great that you are ensuring the docs keep up with the blood work. You have more than one issue and it’s important...
Connie, I found the information on the Methodist Transplant Center of Huston’s webpage. I provided the link. It is an amazing read and should give hope to countless diabetics out there. Dr Osama...
Calendar Girl, I would suggest you research Islet transplantation. I realize your Mother’s liver is damaged, but it seems they are transplanting Islets into a patient's arm when the liver is in poor...
Hi Kiyoichi and welcome to the forum. In the United States, national policies are developed by the United Network fo Organ Sharing (UNOS). UNOS has a federal contract to operate the National Organ...
Thanks Butterfly. We cannot complain as we have been blessed with a second chance. If we have to go through this all over again we will. I love Dany’s attitude. It is so important to accept the...
It is very common for those with liver disease to have their sleep cycles reversed. Harvey couldn’t sleep at night and it would frustrate him to no end. He tried several different sleeping pills and...
Estabr, Connie is right about the TIPS procedure decreasing the portal pressure and reducing the ascities fluid, however the risk for hepatic encephalopathy increases because only a fraction of the...
Calendar Girl, A Hematologist is a blood doctor, a Hepatologist is a liver doctor. You cannot simply make an appointment with a hepatologist. This is arranged via referral to a liver transplant...
Way to go MamaLama! One day at a time. DO take care of YOU. I would get so wrapped up in Harvey’s condition that I would forget about me. I was quick to respond if someone asked how he was doing....
NAME PHONE ADDRESS CITY ST Intermountain Med Ctr 866-439-0480 5121 S Cottonwood St Murray UT Primary Childrens Med Ctr 800-909-7262 100 North Medical Dr Salt Lake City UT University of Utah Med Ctr...
NAME PHONE ADDRESS CITY ST Albert Einstein Med Ctr 215-456-7890 5401 Old York Rd Philadelphia PA Allegheny General Hospital 412-359-3131 320 East North Av Pittsburgh PA Childrens Hospital of...
NAME PHONE ADDRESS CITY ST Carolinas Med Ctr 704-355-2000 1000 Blythe Blvd Charlotte NC Duke University Hospital 919-684-8111 2100 Erwin Road Durham NC University of North Carolina Hospitals...
NAME PHONE ADDRESS CITY ST University of Kansas Hospital 913-588-5000 3901 Rainbow Boulevard Kansas City KS Jewish Hospital 502-587-4011 200 Abraham Flexner Way Louisville KY University of Kentucky...
NAME PHONE ADDRESS CITY ST Broward General Med Ctr 954-355-4400 1600 South Andrews Av Ft. Lauderdale FL Florida Hospital Med Ctr 407-896-6611 601 Rollins St Orlando FL Jackson Memorial Hospital Univ...
NAME PHONE ADDRESS CITY ST University of Alabama Hospital 800-822-8816 619 South 19th St Birmingham AL UAMS Med Ctr 501-686-7000 4301 W Markham Little Rock AR Mayo Clinic Hospital 480-515-6296 5777...
A transplant program (regardless of organ) must be Medicare Certified. Medicare requires a program to perform a number of transplants with a follow-up of no less than one year to evaluate the...
Thanks for the heads-up Connie. I don't know why the link didn't work but here is the list . . . Location Center Phone Region Name Birmingham, AL (800) 822-8816 3 ALUA - University of Alabama...
Undone, Haven’t seen you around lately. Hope all is well. I wanted to address some of your questions more specifically . . . Brain fog (hepatic encephalopathy) . . . yes, your behavior can change...
GNET, I’m so glad you are here! I thank God for this group. They were so supportive of me when I needed it most and I will never forget them. Pink Grandma and Connie are absolute angels! Thanks to...
Calendar Girl, Welcome ot the forum. I’m so sorry you’re having to deal with this. I must say that I was dumbfounded reading your post. Your Mother was diagnosed with cirrhosis in 2007 and ESLD in...
Butterfly, Glad to hear he is doing better. Do you have a place in the house where sunlight can stream in? He could at least appreciate the sun’s warmth and it would do him some good. Good luck,...
Hmmmm . . . I think you just answered your own question Suzi. /community/emoticons/turn.gif /community/emoticons/rolleyes.gif /community/emoticons/smilewinkgrin.gif ...
Butterfly, Has there been any improvement in your husband’s condition? I've been thinking about you both. I hope his symptoms improved and that he is feeling better. Penny ...
GNET, Glad to see you found the forum. I know you will find it very informative and supportive. ESLD takes a toll on both the patient and the caregiver. It’s so comforting to know you are not alone...
Emma, It does work. But too much of a good thing can be bad. Care must be taken to check medications for precautions. Some are photosensitive. Sun screen should also be applied. I agree that sun...
Emma, Various studies have shown that green tea, coffee and caffeine are beneficial to the liver. But like anything else, it should be consumed in moderation. Too much of a good thing can be bad....
It could be a case of Jaundice coming on. Has he had any loss of appetite? Have you noticed any yellowing of the skin or eyes? You may want to have someone else take a look at him. You see him every...
Emma, Going green is good for all of us. Many chemicals are trans-dermal (can enter our bodies through our skin). Gloves should always be worn when using chemicals, but I hate wearing them. If I...
My heart goes out to you Spooky. Never underestimate the power of the human spirit. I will continue to pray for you. I’ve witnessed many miracles and I will always root for the underdog. The time...
Imp, Xifaxan is an anti-biotic that was approved by the FDA in 2004 to treat traveler’s diarrhea. However, studies have shown that it decreases the recurrence of hepatic encephalopathy in patients...
Spooky, I’m sorry to hear that your Dad’s condition has deteriorated so. However, you should never give up hope. It is not for us to decide when it is your Dad’s time to go. That is out of our...
Connie, On average, individuals with liver disease will have a body core temperature of +/- 97.6 degrees. Consider a healthy liver as the body’s furnace. Everything we take into our bodies is...
It’s very common for those with liver disease to be chilled. This is usually attributed to loss of muscle mass. Other factors can contribute such as thyroid abnormalities, low sugar, and of course...
Undone, I’m sorry you’ve had to undergo perianal surgery for your Crohn’s. Thankfully, Harvey’s Crohn’s never advanced to the point of surgery. Following his initial hospitalization, he was placed...
Undone, I don’t know where you are on the road with PSC/Crohn’s. It’s a very long progressive road. The fact that you had a diagnosis confirmed is beneficial. PSC is relatively rare and the cause is...
Hopesprings, David pretty much summed up the common sense issues. A transplant recipient is most vulnerable right after transplant. Harvey was instructed not to drink tap water. As for pets, cats...
Right on Connie. Lactulose is indicated for the prevention and treatment of encephalopathy....
Undone, It's great to meet you. I'm sorry you have PSC and would be glad to try and answer any questions you have. Penny...
/community/emoticons/tongue.gif my bad! ...
Thanks notsotuff. It sounds like you have a wonderful husband “without fail” and some great neighbors J too. I’m certain you are an “extremely nice person” who is afflicted with a dreadful disease....
David, The size of the liver depends on the affliction and progression of the disease. For example, with NASH (fatty liver disease), the liver will be enlarged with fat. With cirrhosis, the liver...
Sorry Connie. I meant your Sister. It definitely sounds like PHN. It’s too early to tell, but I’m afraid Harvey has it too. It took nearly 3 months for him to get over it. The initial bout is usually...
Thanks Sue. Harvey has been experiencing fatigue lately. He just hasn’t had much energy and he is frustrated because he is unable to do the things he wants to do. He had a flare up of Crohn’s disease...
David, It just goes to show that liver disease symptoms and treatments affect individuals in different ways. What works for some may not work for others. If we don’t explore the possibilities, we...