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Posted 11/19/2008 11:56 PM (GMT 0)
Hi Everyone-

I'm new to this forum in posting, but have been reading what people have posted and the responses.  Everyone seems very supportive so I thought I'd write.

My father has ESLD from drinking and in the last 1 1/2 months he's gotten sicker.  It started with an infection of the fluid in his abdomen and a 4 day hospital stay.  He's out and at home, and no longer able to deal with the doctors as he gets so confused.  My mother, sisters and I feel extremely behind the 8 ball because we always let him attend his doctors appointments alone.  He was told all kinds of information about diet and other symptoms that he never passed along.  He hasn't drank alcohol for about 2 years so at least thats not a problem.

We live in the Chicagoland area and he is being evaluated by a hospital in the city for a transplant, but his local doctor treats his weekly issues.  We assumed that the local doc was in touch with the transplant center and that was a real mistake-they didn't know anything that had been going on.  Just being sure the two doctors are speaking with each other, and deciding who to call for what is so difficult. 

His abdomen has gotten larger in the last few days, and now he's coughing because he's having trouble breathing.  His platelets are low, he's constantly jaundice, and is having trouble keeping food down.  I am his living donor for the transplant, and now we're just waiting for him to get final approval from his cardiologist.  If his platelets go up then he'll be having an angiogram on Wednesday.  Hopefully, we will then schedule the transplant. 

I'm just so afraid that we're going to miss a symptom or not notify the right doctor about what's going on.  He had a blood draw on Monday at the transplant center, and they are anticipating a change to his MELD.  Of course, I have to call them to follow-up.  Does anyone know of other symptoms I should be watching for?

Ugh, sorry for sounding like a complainer, but there is comfort in hearing what others have to say who have been through this before.  I feel like my father is dying before my very eyes.

Any advice or suggestions would be appreciated.

Posted 11/20/2008 2:17 AM (GMT 0)
Hello cdietz19, and welcome to HealingWell, So sorry that your father has this hideous disease. I know how stressful it is for you. I just bumped up a thread below this one for you . It's about some of the symptoms that some patients experience. Your father must be so proud of you. Even if he can always tell you I know that he is feeling it.

Hang in there and be strong........take time for yourself also..........you won't be any good to your dad if you get burnt out.

Take care and come back.........there's a lot of nice people here to meet.

Thoughts and prayers............
Posted 11/20/2008 2:47 AM (GMT 0)

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.

Posted 11/20/2008 3:17 AM (GMT 0)
Thanks for the quick replies. Yes, his lactulose was just increased, he just began taking potassium, is on 2 diurectics (I think), and had an albumin infusion last week.

Yes, his doctor at the transplant center is a Hepatologist. He has a number of people he sees there, and typically when I call there I speak solely with his doctor's nurse. She is great, but they always take 2 days to call back and of course, I feel the situation is much more urgent.

It has felt like each time we've gone in they have said, okay this is the last test and then we're scheduling the transplant. I'm really hoping this time that the angio is the very last thing and then the transplant will indeed be scheduled.

One other thing I forgot to mention is that my father has two tumor markers on his liver, and one of them is on his bile duct. They feel that the transplant will hopefully take care of that situation, but if he gets any sicker or the cancer becomes active in his body then he won't be eligible for the transplant.

My mom told me tonight that my Dad is depressed and apoligizing for being so dependent on her. To make matters worse my Mom has been sick with diverticulitis and is having surgery next month. When it rains it pours I guess.
Posted 11/20/2008 3:33 AM (GMT 0)
Welcome to the forum cdietz. Like Connie said, it is really good that your father stopped drinking. It sounds like your family has alot to deal with. I am so sorry you are going through so much.

Do you have an email address for the doctor's nurse. When I have a question or concern about my husband I email his P.A. and she usually gets back with me the same day. Sometimes it is the following day.

I know that things must seem really hard right now, but they will get better. The tests are all going to be completed, then your father will be on his way to a transplant. Ask God, and it will be done. You are such a brave person for doing this for your father.

I will be praying for you and your family. Hang in there. Everything is going to work out.
Posted 11/20/2008 9:05 AM (GMT 0)
You are so brave to be involved in the transplant issue. I have to family members who have offered , but have denied for personal reasons.
I don't go to the Dr. by myself because my short term memmory is so bad. My husband goes with me and later remindes and repeats. Although my short term is gone every day I can still remember When I was around 7 with Hepatitis A. So very ill. I remember my little red shoes when I was 3 , on the window sill. I remember every thing from the past. Can't tell you what I ate for supper last night. But remember really bad stuff, and good. Like the Doubutimine Echo last week that seared into my brain (never again) will I allow them to do that test.
As for my Prim Care.Dr. I do not count on him for anything other than my blood pressure. I call and order the tests, from the clinic. Next month I have to schedule a mamo , pap. Bone scan, Bone infusion and all my lab work. And of course that darn foot that still has not healed.
Just make sure he takes his lactulose. And make sure someone starts to go with him to all his Dr. appointments. They are very aware that we don't always think write
Posted 11/20/2008 9:55 AM (GMT 0)
cdietz

Just wanted to add my welcome to the forum. I too am very sorry about your family having to battle this disease. It all can be so overwhelming and confusing. I too find it important for someone to attend my doctors appointments with me if possible, not only do I not always remember everything that is said but my interpretation of his statements may not be the same as others so I it helpful. I normally do not have problems talking to my doctors nurse, however emailing or discussing how urgent the situation is may raise your family on the call back list.

Good luck on your journey

Lucy
Posted 11/22/2008 3:15 AM (GMT 0)
The good news is that his MELD just went up to 26; therefore, they said he's probably 10th in Chicago to receive a cadaver liver. He was hospitalized yesterday because breathing was difficult, nausea, not eating. He got an albumin transfusion today because his sodium levels were low (119) and they want him back to his usual number of 123. His ammonia level is 84 (which I've never tracked before). He's back home now and more comfortable because they added another diuretic that helped bring his water retention back down.

I've asked his cardiologist to admit him for his cardiac catheterization next week and give him platelets before the procedure. The thing I don't understand is why the doctor never told me this was an option. Sometimes I feel like I'm pulling teeth when trying to get things accomplished when it comes to this disease.

Can anyone provide any insight on the ammonia and sodium levels? Thanks!
Posted 11/22/2008 3:30 AM (GMT 0)
hello, cdietz19,

Welcome to the forum!! I am so sorry you and your family are going through this. Yes, it is very difficult getting all the specialists on the same page...that's my biggest battle w/ my hubby. He has Hep C and cirrhosis of the liver and is currently on the transplant list. With regard to the sodium level and ammonia levels.....I know from what our transplant docs have told us that we really need to watch my husband's sodium intake...he needs to eat a low sodium diet and he's on diuretics. With regard to the ammonia level...84 is still a little elevated. With my husband, his ammonia fluctuates up and down. We sometimes increase the lactulose for a couple of days (mainly if he's getting pretty confused). The normal level is below 70, I think.....You hang in there, and I will pray for a liver to become available soon.

Godspeed to you!

Mer
Posted 11/22/2008 4:36 AM (GMT 0)

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!

Posted 12/16/2008 1:39 AM (GMT 0)

Call Loyola Medical Center in Maywood.....708-216-9000 Ask for Liver Transplant Coordinator named "Tricia Cavalierre" and get scheduled for an appt ASAP! My friend is on list there and has been trated professionally and miraculously with their Liver ransplant program - you WILL get all your questions answered if nothing else.  It is worth it! 

Posted 12/16/2008 1:46 AM (GMT 0)

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!

Posted 12/16/2008 4:05 AM (GMT 0)
CDietz, welcome to the board! I'm sorry you're having to go through this. It's not easy to watch a loved one go through all this. You've received wonderful advice from people who really know what they're talking about. My husband's gastro doc isn't very good and we are trying to find another one that takes his insurance. But make sure you ask everything that pops into your mind. I had to make a list and literally chase down the doc last time Jeff was in the hospital with hepatic encephalopathy. My husband had gone to the doc by himself for the most part until recently. Although he tends to be somewhat noncompliant, he was usually good about telling me what the doc said. It's a little scary when they start to get confused and don't remember things. I think it's great that y'all are doing everything you can to keep abreast of it all. It will help your father but you and your family too to know everything you can. It sounds like y'all are doing a great job and you've gotten great advice. I would like to say one thing. If the doctors give him Ativan for agitation, etc, keep an eye on him. This is a widely prescribed medication, but one of the really bad side effects of it is hallucinations and paranoia. A lot of patient's can't take it and a lot never have a problem with it. I wish you all good luck and please let us know what happens.

jen
Posted 12/16/2008 4:20 AM (GMT 0)

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!

Posted 12/16/2008 4:54 AM (GMT 0)

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.

Posted 12/16/2008 5:58 AM (GMT 0)
PRAISE GOD that your loved one (and YOU!) are the fortunate one at this time, to receive a liver!!!  One thing I have been at, for what seems so long now, is the waiting...with patience and trust and FAITH!  I have been a nurse for many-many years, and yet never knew how special this "specialty" of liver donation is...common sense and my nursing practiices have gotten me thusfar, but I too am always learning through experince and downfalls to be able to say thusfar, that with GOD and learning, I can continue to have HOPE!  Thanks for your reenforcement as that too, is encouragement to me in this long wait of feeling you are waondering and watching what "tomorrow" will bring in this situation!  We are (supposedly) at the top of the recipeint list, however, that has been months already! 

In my greatest time recently, when told it should be any "month" now, I asked that ultimate question to the Dr....can "you actually consider keeping him alive THAT long" and they assuredly said YES if you keep coming and "supporting" and keeping on top of what is going on".  Against my "spiritual" judgment, but yet longing for "something" to give me mortal (human) encouragement, I have continued to walk the walk and be PATIENT, SUPPORTIVE, etc., and knowing whatever the outcome I have given IT MY ALL!  That is my encouragment to any and all of you - keep the FAITH in God and THE Dr.'s GOD works through!!!!!! and that IS giving,all YOU can supportively give, afterall, being "there" and keeping the "patient" encouraged, IS ALL you ultimately CAN do! 

Duew to the hard required needs of this "journey" I still cannot find time to always update you all, and, just today I inadvertently was led to this wesbite when I was "seeking wisdon on a particular symptom my friend was having".....but, thanks for your responses and input today as well.....and please DO, keep us posted, afterall, that is THE encouragment the REST of us need!  I DO praise God for your answered prayer in your loved one's recipient of this ULTIMATE second chance!!!! :)

Posted 12/16/2008 6:38 AM (GMT 0)

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.

Posted 12/16/2008 6:51 AM (GMT 0)

Hep 93!

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! :)

Posted 12/16/2008 6:59 AM (GMT 0)
Hello 143flgirl, and welcome to HealingWell.

A live donor is someone giving up part of their own liver while they are still alive. That's how they can name the date for the transplantation..........Take care.........thoughts and prayers....
Posted 12/16/2008 9:22 AM (GMT 0)
I believe she said my father and I will undergo transplant. So I am assumming she is the doner.

june
Posted 12/16/2008 7:52 PM (GMT 0)

Pink Grandma:

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.

Posted 12/17/2008 3:56 AM (GMT 0)

Cdietz-

 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.

God Bless

Mer

Posted 12/17/2008 4:50 AM (GMT 0)

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!  wink

Posted 12/17/2008 5:11 AM (GMT 0)
Cdietz, I am glad to hear that the transplant is setup and will be praying for both of you to have a speedy recovery. Please continue to keep us updated, as it is always good for those waiting for transplants to hear the progress of those that have already experienced it.
Posted 12/17/2008 6:53 AM (GMT 0)
Connie, my understanding is that the recipiant of the liver has to have a portion of healthy liver. Shoot I cant remember which it is called but it is the section where the main veins are then the 2/3 of the live donor are attached. I had this all explained to me once as BI was doing live donors in the beginning. They dont any longer because of mortality rate, and we all know that plays a part in funding.
Sue
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