cdietz, welcome to the forum. I'm so sorry your father is battling this disease. It is good news, however, that he stopped drinking 2 years ago. Lots never do.
Was your father assigned a hepatologist or primary liver surgeon at the transplant center? That is who I would contact with any liver-related questions or info about your father. The doctor will likely have a P.A. (physician's assistant), who will probably be more available than the doctor. He can be seen by the P.A. when the doctor is unavailable. They can even write prescriptions and order tests. I saw more of my doctor's P.A. than I did of him while I was fighting liver cancer. (I was being seen at the Mayo Jacksonville Transplant Center, even though I didn't qualify for transplant. I'm still seen there for followup.) A primary care doc just doesn't know a lot about liver disease.
Depending on the insurance your father has, he may or may not be required to get a referral from the primary doctor for any testing or specialists.
You said that your dad is confused. Is he on Lactulose? When liver patients get confused, it is usually due to a buildup of ammonia in the system. Lactulose will eliminate the ammonia through frequent BMs.
I hope that your dad will be able to get the angiogram and proceed with evaluation for transplant. Please come back and let us know how he is doing.
cdietz, it sounds like the transplant center is doing a good job of keeping track of your dad's disease, blood test results, etc.
You have received good suggestions here, so all I can say is that I hope your dad gets a transplant soon!
P.S. CDietz -
IF your loved one is with a good LIVER TRANSPLANT program in Chicago, you should not have ANY questions regarding the wait for a liver, what the sodium and albumin levels mean, what the meds are, they should hav put YOU through a training program already and provided you with all the meaterials to completely have NO questions. My friend has a MELD score of 32 and it has been many weeks/months of waiting and hospital admissions. You eed to ask questions from your Dr.'s and Transplant Coordinator ASAP so you fully understand what is expected until the LIVER comes, we are praying for you and all those waiting for livers in Chicago at this most critical time!
Dear Everyone with Concerns about their loved one in the diseased liver OF their loved one IF YOU CARE!
Please, I pray you HEAR me - ALWAYS go with your LOVED one to every appt. THIS IS CRUCIAL! I promise, you will never have to wait for a return call, you will be expidited through the ER, and you wiull NEVER have to chase the Dr. down! BUT YOU MUST GET ON BOARD AND SHOW SUPPORT TO YOUR LOVED ONE'S MEDICAL STAFF ASAP!!!!!!!!!
There is too much to know! Also, this is the MAIN thing you CAN do - your loved one if in any stage of any liver disease does NOT at ALL comprehend what is being told, they WILL forget it, they WILL confuse it, etc. This disease is MUCH like soneone with Alzheimer's to the degree that you can NOT decipher what the patient has heard or will remember or will be able to correctly relay to you..............THIS has been the BIGGEST part of my "friend's" survival at this point, is for all of us involved to know every thing being said, and if you are not there, they cannot possibly relay the information to you correctly, it is no better than playing pass this message back in the day so PLEASE, go to the next appt and ask them to tell you every thing you NEED to know, the Dr.'s will know what you need to know and I am sorry, YOU MUST BE THERE at ALL appt's for the dr.'s to see your love and support, this is CRUCIAL for the patient PROPER treatment, in fact, I would go as far as saying that next to getting a liver, if you do not attend every appt and show your support, then your loved one will NOT get "preferred" treatment to show how crucial YOUR attendance equals their survival! TRUST ME! If I left my friend's side and depended on any other one person to know everything in detail what is going on, this person would NOT be alive today. I pray whatever the outcome, that this friend's family can live with themselves for NOT WILLING to be in the "know" and KNOWING what to do and how to respond!
I pray that God leads you to responding and knowing that YOU MUST take the initiative in this person's care, and seek "HIS" guidance every single step of the way!
In response to what a few folks have said regarding attending doctors appointments, I couldn't agree more. My father was feeling pretty good when he started seeing his specialist at the transplant center so he attended all of the appointments alone, and would relay the information - or at least what he thought was important. I feel like we have been trying to make up for lost time with information that was given to him and never to anyone else. Now, I know that every question should be asked. Just to give you an example, he needed to have a cardiac catheterization as his last test before our transplant was scheduled. However, the cardiologist said he wanted my Dad's platelets to stabilize before the procedure. Low platelets is common with cirrhosis patients so this cardiologist was waiting for something that wouldn't happen. Finally, I asked them to admit my Dad the day before and give him platelets before the procedure. Everything worked out the way we wanted it in the end, but it really opened our eyes to how things work.
I am going to suggest to our transplant center that when they send out their letters that they "highly suggest" that their patients bring a family member. The great news is that my father and I will undergo our liver transplant on January 14th. He was in the hospital for a week recently with a sodium level of 113 because of his diuretics. Now if we can just keep him healthy until the transplant we'll be in good shape.
cdietz, I am SO happy to hear that your father has a transplant coming up! But how can they know the exact date unless it is a living donor transplant? I imagine that is the case.
I have to say that, in general, it is better to have an involved family member at every appt. However, I never did, nor did I need to, as I never suffered from encephalopathy (thank God!) Also, with my medical transcription background, I understood the results of tests and knew what questions to ask. I have always been very proactive in my treatment, ever since being diagnosed with hep C in '93. I have also learned a lot through this forum and my own research. All that is a good thing, as I have no family members in this city and no close friends who could go with me to appts. My sister did come down from SC when I was going through liver cancer treatment.
My friend is also a vet with hep C along with end-stage liver disease. I agree with you - where he is at MUST be a living donor and how CAN anyone predict an actual transplant as the donor, even living, a liver cannot live more than 24 hours and the liver ransplant alone is a 12+ hour surgery, nonetheless, I would not take away from whatever CDietz info has gotten, although I agree, how can it be from what we have learned? I don't know, as I AM a believer is all that GOD can do, but don't know how a date can be given! It is not anywhere in my realm of knowing the medical field!
I am sorry you haven't had support, I know what you mean! BUT, that doesn't mean that if you don't have a friend or family member's suuport that IF the Medical team IS aware, they WILL still be THERE for your needs...I am praying for you as knowing how hard it MUST be for you not to have the nexcesarary family suuport, your dtrnegth in God MUST be so powerfule during this time.....
CDietz, please let us know HOW anyone can promise you a date, in January for that meter, that this surgery CAN occur? WE do not see how muanly THIS is even possible with the info we have receved that is factual, that we cannot predict anyone's death, nor can we possibly know how a liver CAN be donated post 24 hours of the donor's passing! I have NEVER heard of that! Please know that you may have been given wrongful info, but we would like rightful info if you have been given it and WE haven't! :)
I guess you are correct that somone CAN give up a piece of their liver to someone but that is not the practice in most Chicago Transplant systems that I ahve ever heard of, at least not in the case of being on a transplant list, they are not able to donate anything but recently passed bodies and the patient had to be registered as an organ donor and the family has to agree. The #1 patient on the current list apparently had 2 families overrule on the donor process and MOST are NOT able to receive living donor organs. I do not know what city CDietz is emailing from, but this is the case in at least 4 major liver transplant hsopitals in Chicago. I wish that was the case, but not from any of the hospitals in Chicago we have dealt with.
I am so happy to hear that you guys are able to move forward with the transplant!! I will pray over the next couple of weeks that your father's health continues to stabilize, and that you both have successful surgeries!
I would like to address the living donor issue for the others.....it is my understanding that depending on the liver disease and other conditions, some patients are candidates for liver donors, in other words, a family memberr, etc that is a match to donate part of their liver since the liverr regenerates itself.
My husband is currently on the liver transplant list....and unfortunately, he is not a candidate for this as he has HepC and cirrhosis of the liver.
I completely agree with what everyone has said about how important it is to go with your loved ones to all the appointments. My husband has some short term memory issues, so he cannot keep all his appointments straight, much less remember what the doctor talked to him about. He really relies on me for keeping track of that information. And, besides that, it completely wears him out going to the doctors in the first place!
We are due this month to update our MELD score, so will be interested to see if it has changed....I hate that we have to go by MELD for transplants...but, unfortunately, that's the way the cookie crumbles!!
Cdietz....you and your family try to ENJOY the next several weeks, and relax a bit until surgery.
Mer, why would having hep C and cirrhosis make your husband ineligible for a living donor liver portion?
123flgirl, I do have great faith in God and the best medical team in the area at Mayo!