One Step Forward..and back at the hospital.

Hi y'all!

First, I have to admit I have been a Lurker for a while as I was gathering information about Hepatitis. I had moved in with my parents because my wonderful mother, whom I miss every day, had throat cancer and beat it. Three years later her yearly scans came back clean in September-by October, there was cancer in her lungs that spread to her bones and brain. I was able to care for her at home with the help our wonderful hospice, and she passed away 6 months ago with her dogs laying with her, her favorite music playing, and me on the couch near her. My parents had been married 36 years and my dad had a more difficult time with seeing her in a coma the day after we brought her home and were told she'd have about 6 months (she died 5 days later). Our family isn't very supportive so it was mainly my father, my friends and my mom's best friends that helped (I'm an only child).

My dad randomly began to trip a lot in January, rolling right off his bed and was often confused. I know if you don't have anything nice to say, don't say anything at all so I will not say much about our local VA. The ER doctor couldn't believe the medications he was on-20 pills a day-for things he didn't need and that caused drowsiness/dizziness. We went to the ER on a Tuesday because my dad had rolled right out of his bed and hit his head on a beside table, and I was concerned the falling/confusion/rambling were symptoms of a serious neuro issue. He was running a fever in the ER and after several hours said they would admit him for IV antibiotics and fluids and try to figure out what was going on.

The next day my world changed forever (again). Originally, the ER doctor thought he had sepsis or a severe kidney infection as his urine was red. The hospitalist-with no bedside manner-advised me I should call family because his liver was failing, his ammonia levels were sky high, his platelets were no longer clotting and he had no idea who I was. I had brought pictures from my parents' wedding and he was able to come around more. But that was the day I was told he has End Stage Liver Disease due to Cirrhosis-Hep C (and grilled over and over about his alcohol/smoking/drug use which would make you laugh if you knew my dad-he hasn't touched a beer in over 30 years). The doctor then advised we look into nursing homes and call in hospice. This did not sound right to me and I insisted for a second opinion regarding treatment. Where we live, doctors are not used to treating patients with ESLD. The appointment we got at the transplant center in our state was in November-and this hospital doctor had said my dad's liver wouldn't last that long.

I am lucky enough to have a friend who is a doctor and was able to get that November appointment moved up to the following Wednesday thanks to the wonderful transplant surgeon and coordinator  . I did all the running to get scans, tests, records...he met with everyone for an initial consult, and told he needed a transplant or he would die. His MELD was a 20. We had to wait (I am starting to learn a LOT of this process is waiting!) for those doctors to discuss his case and refer him for a liver transplant. After being-I would like to say persistent, and not annoying-the coordinator said he was recommended for the eval and we packed the animals up, dropped them off at the boarders, and went to the hospital for a week.

Lots of information...good information. He won't really have to pay for anything but travel if he gets put on their list. They meet Tuesday to go over his case and make the recommendation, so we were told a letter should arrive by the end of June. It was really hard to get a read on some doctors..everyone had said there were no red flags but I am not counting my chickens before they hatch. Oh, and in between the initial visit and the eval, he had to use the ridiculous ERs in our area; one doctor said my dad just had allergies which was causing the coughing and rash...even though I showed him the paperwork from the transplant hospital showing he had a pleural effusion in one lung and perhaps that has something to do with his cough. My dad was just so sick, and terrified of this operation but more terrified if they say no (which we would look at other hospitals)...the doctors kept giving him Robitussin and said we needed the transplant docs to prescribe meds, but as the coordinator told me-he wasn't being followed by their doctors yet so they couldn't call in medication! So he swelled more, coughed more, couldn't rest...Finally, his heart doctor pulled up the x-rays from the ER and immediately announced you'd have to be an idiot to not see the pleural effusions..so he was started on Lasix (he hates it, and hates the Lactulous too but it's what's saving his life right now).

I really liked this hospital; they took my dad seriously even though he still has confusion every now and then. He was given medication for his coughing so he can rest. The rash turned out to be "spider" somethings-they sit at the skin's surface and are indicative of his liver failure. He's able to drive, go for walks, shop, visit friends...I am so glad we didn't listen to that first doctor who said put him in a nursing home .

So this turned into a novella, sorry  I am still overwhelmed from the information we were given so I will likely continue to read and post in here, as many of my immediate questions were answered here. I am praying every day for this transplant, and if there is some reason that no hospital can perform it I pray he doesn't suffer. Neither of us have really grieved for my mom yet bc everything happened so fast. My dad does yell more now, and curses which he never did before; I understand it's part of the disease and as such will be looking for a caregiver group in my community. And even with the pleural effusions in both lungs, his MELD is still sitting at a 20. We are in Alabama, so he will need to get sicker for a transplant if they take him. I have been researching Mayo in Jacksonville, FL as well as Tampa. I wanted to see if he can have some of my liver, but our state has no hospitals that do such so I'd have to pay out of pocket at Vandy  or U of Florida to see if I was a match.

Thank you all for sharing your stories, advice and support.

Post Edited (Jaspersmom) : 5/29/2013 10:29:51 AM (GMT-6)

Hi, Jasper's mom, and welcome to the forum! It's a pleasure to meet you and read your very interesting and literate post.

As MamaLama/Carol said, you are doing the right things. I am so sorry about your mom's passing and your dad's illness. I know it's a very stressful time for you, but you are keeping your head on straight.

I had a liver transplant at Mayo Jacksonville, FL, in Oct. '11, due to hep C causing hepatocellular carcinoma. I had it previously (a huge tumor in the right lobe, that was 12 x 11.5 cn. in my rt. lobe, in Sept. '05, which had metastasized to the inferior vena cava (diagnosed at Shands Jacksonville, which gave me no hope.) I sought a second opinion at Mayo and they saved my life. They have kept me alive for 7 yrs., which I wouldn't have had otherwise. I am sure you have discovered that there are many risk factors for hep C. There are also other causes of liver disease requiring transplant.

I have had many problems since transplant, especially after they had to open me up again in March '12, due to an infection. I currently have a very large opening in my midriff that has opened up for a 2nd time in the incision line and is scheduled for surgery this coming Mon. I also have some pleural effusion in my rt. lobe, and will have a thoracentesis on Tues., following discharge the same day. If a person has a difficult case, such as mine, Mayo or Mass. General transplant centers seem to be top notch, to name two. There are not long waits for tests, appts., etc., at Mayo Jax. However, they no longer do living donor transplant, though they might in Rochester. I don't think they are doing them in AZ Mayo, either.

I suggest you read the information in the pinned folder/topic at the top of the page entitled Hepatitis Resources. There are many types of hepatitis (liver inflammation), not just viral. In that folder, at the end of the info, I have attached a list of correctly spelled medical terms related to liver disease, and even some "regular" words, which I add to occasionally.) I don't give the definitions in most cases, but if you know the correct spelling (though you seem to be doing fine so far) you can look them up more easily. Medline is a good source for that. Google, too, but be careful about Wikipedia. I am stating this, not just for you, but also for the lurkers.)

If you haven't already checked them out, I also suggest that you look in the Caregivers Sharing thread and also the Loss thread. You will receive a lot of support in both threads.

Good move in removing guns from the house. My dad shot himself to death when I was in my 20s and it shattered my life and those of my stepmother and half-sisters. My reaction was worse (IV drug use in the late 60s, which caused my hep C, not diagnosed until '93.)

If you have any questions, feel free to ask--someone here should be able to answer. And please do keep us updated on your dad's status and which transplant center you decide upon.

Again, I am so sorry that you and your dad are dealing with this difficult situation, but there is always hope. I am (still living) proof of that.

Hugs,
Connie

Thank you all so much for the kind words and support! Carol, I'm glad Mike was able to get his transplant, and same to you Connie. I hate hearing you're having complications; I hope everything goes well for you Monday. I will keep you in my prayers. Mayo in Jacksonville is definitely where he would go if we are able to list somewhere else as well. I'm glad they take care of their patients; I've heard great things. Angie, I'm sorry you lost your husband. I know my dad doesn't feel good and that's why he will snap at me sometimes, but he also recognizes it and apologizes a few minutes later. I had been seeing therapist to deal with my mom's death, and my dad agreed for us to see the therapist so we can work on grieving, but also he is so scared and needs to be able to talk to people about this. It was a big step for him to agree to see her.

I have already taken to hiding the keys at night...I feel guilty, but I woke up and went to check on him one night at around 3 a.m. and he wasn't home and neither was the car! After calling up our area ERs (he had driven himself to the ER a few year ago when he ended up admitted with a blood transfusion and didn't want to bother my mom and I by waking us up-men!), I was told he was not in the ER or admitted...apparently he wanted some peppermints. So he decided to go to Walmart at 3:00 for peppermint candy. I had told him he NEEDS to leave a note if he's going somewhere and I'm not awake so I don't have a frantic panic attack, but I am not chancing with driving at night. So I have both sets of keys with me. And I'm pretty much doling out his medication, so he knows he can't drive after taking a Norco or Atarax (the itching pill).

And he hates his diet! Bless his heart, he is a meat and potatoes guy but now I taught him how to read the sodium levels when shopping. His biscuits and gravy are replaced with Egg Beaters and fruit. The nutritional educator at University of Alabama-Birmingham was excellent and gave me several suggestions of food he could still enjoy, but tweaking recipes so it stays in the low sodium guidelines. I am on his diet with him because I would feel awful eating a cheeseburger in front of him, and he knows he can't have red meat.

So far, U of Alabama-Birmingham has just been excellent. I am still going through all the paperwork they gave us last week, but I want to say they did transplants around a MELD of 24 or so...I am just nervous to get the letter, nervous they may say no, nervous if they say yes because the surgery is so big...but knowing others are going through this helps so, so much. I wish nobody had to go through this, but there's no point in asking why; just trying to move forward.

And I didn't even think about the guns. Nobody hunts here, but there is a gun in one of the walk in closets I didn't ever think about from their old home. My dad is also an animal lover and very gentle with them, but I see how his personality changed with HE so I will be moving that gun tonight. And Connie, I am so sorry about your dad :(. I don't know if this makes sense, but even though I'm 35 years old, I still don't think of myself as the grownup yet and I have problems remembering sometimes my mom is gone. I can't imagine the grief you must have dealt with losing your dad that way.

Thankfully he was never a drinker or smoker. I know that really affects chances at a transplant.

Thank you so much for the information! I am going to check out those folders and pop in the Caregivers and Grief threads. Have a good night :)

Thanks David. We are the same distance from Vandy, and I was really hoping I could be a Live Donor but I'm just trying to get through one day at a time; I will research more into that once we hear from UA-B. And I have done a lot of research on liver transplants in general-I am so thankful we live in the South because I read in California, some people don't get transplants until their MELD is around 34?! I have used UNOs website to look at some of the data and it's been very helpful.

This is just such a nasty disease and it breaks my heart to see my dad, who worked so hard his whole life and now is retired, living in his dream house with orchards and gardens and a pond stocked with fish, suffer. But he was suffering MUCH worse before we went to the Transplant Eval. I am so thankful to the doctors that were able to prescribe him medication so he isn't always coughing and in pain. What's kind of ironic is my mother was an alcoholic my whole life-hard alcohol for a while-and lived several years with Cirrhosis; it was the cancer that metastasized and killed her. And my dad gets Cirrhosis (we really think he must have gotten it in the military) and is told he only has months from that hospitalist that told me to throw him in a nursing home.

But we're staying positive, and he is very committed to getting a new liver so he is very compliant with his diet and exercise and taking gross medication he can't stand. So even if he doesn't get a liver, he's going to go down fighting until things get too bad. I am very eager to see his latest results-with everything back except the blood gas and pulmonary tests, that is when his liver doctor said he's still at a 20.

Having a positive attitude helps immensely. I always believed things would be okay. So far they have been, along with a couple of setbacks. I never thought this was going to be fun. Waking up every morning is my reward for sticking it out, along with a little luck and great medical help.

Congratulations! GREAT news! How did your dad react? I missed a beat somewhere...has he been through the evaluation process? I'm guessing yes, since they agreed to list him. He will have a number of more tests prior to actual transplant...frequent blood work, regular CT scans and MRIs, etc. They can't assume that his condition will remain the same from the time of evaluation until the time of transplant.

So yes, rejoice! Celebrate every bit of good news!

Hugs,
Connie

wonderful news... go Jasper... and dad!!! WTG!!! Great news!!!

Sandia

JM,
I think the Xifaxan will help with the confusion. $60 to pay is a miracle They are like $1300 a month without insurance!!!!! Make sure he takes the lactulose regularly...even if he hates it.

And lots of water.

I think this will work out.

Best,

Mama Lama

Post Edited By Moderator (hep93) : 5/21/2013 11:09:25 PM (GMT-6)

His ammonia level is not that high. His new med should boost the effectiveness of the Lactulose. I think he will be okay. Remember the MELD criteria: INR + bili +creatinine.

The colonoscopy is standard. I also had an upper endoscopy. No varices, thank goodness.

Jacksonville, FL is very much the South. Mayo opens at 7 AM and most clinics/staff leave at 4:30, but I've also been seen after 5 and testing/scans done after hours. The clinics are closed on weekends, but all are open on Fridays.

Hugs,
Connie

Thanks all for the support and advice about the ammonia level/HE meds...today was another little kick.

When my dad was getting his Eval, his MELD was a 20. Not quite sure what happened, but they didn't get everything in on time so he had to redo labs here. They just got them and I got a call he is officially listed....at a 15 :(. He's been at a 20 the last 3 times, and I knew from here his MELD will jump around. It's been a rough few days bc he just got the other med yesterday for HE, so he's been real snappy and not fun to be around. He goes for his next GI appointment in a month to get bloodwork redone, and if it will boost him up I'm to call right away, but not to if it's lower. He's really disappointed because he's felt a bit worse.

But nothing to do but diet, meds, exercise and prayer...I expected this, but not so soon! I wish his score during Evaluation could have stuck. He's officially listed, so I'm happy about that. I really wish my insurance covered Live Donors so we could at least explore that option.

Anyway, thanks for all the continued knowledge and kind words :). Hope you all are having a beautiful day!

Hi Jaspersmom, hang in there.
The Xifaxan made a big diff' in themister's personality. His co-pay was $1200.00 for a 90 supply. Worth every penny. I adjust the Lactalose as needed. It is never a constant, sadly. He became a person I did not know after TIPS. It was the HE, not him. Now he is mostly tired, fatigued, and ...flat in the personality dept. Forgets much. But this is way better than it was. Grateful for the little thing, ya know? Today he has been very tired, but has an appetite, pleasant, and seems like "himself". That is a good day;)

about your Dad's MELD. My husband's inched up....6 last July, 12 in Dec, 14 in Feb. We have not had labs since Feb, but he seems up and down, worse some days, better others.

Themister treated for Hep C in 2005, failed. Then again 2011. Obtained SVR. He remains SVR. That is as good as one can hope for with Hep C. I do hope that hurdle is behind us. Nothing about liver disease is in the fun column....keep hanging on. You are doing great!

The post transplant folks on this board have been great. I plan to start Connies transplant eval thread tonight. Take care, themiz

I'm surprised they didn't give your father lactulose as an enema. When patients can't or won't take it that's what they normally do.

Thanks!

@ David- They never ever brought that up as an option. I may ask because he drinks the Lactulose on schedule every day, but it just was making him so sick to his stomach and eventually just vomiting it. He's been compliant, but something in that medicine just doesn't agree with his stomach. Hopefully the Kristalose or that enema will help out.

@ Connie- great advice as usual, thanks :). I knew if he was just seen in the doctor's office with nausea, nothing would have got done except maybe a script for Zofran. I am so thankful for the transplant line his doctors here can call to get a treatment plan going. I really trust them, and I really trust my family doctor who happened to be rounding. I just thought it was an odd thing for the GI doc on call to say, to hold all his medicine-including his ammonia medicine-when his ammonia level was elevated last week at that office! My dad is completely dedicated to this process, and I know vomiting up the Lactulose scared him (and me!). I really think either the enema or Kristalose will make a difference. And I already completely cleaned out and disinfected his room-everything's laundered, disinfected and vacuumed. Hospice left three boxes of latex gloves from when they took care of my mom so they are being put to good use :). I am also disinfecting his bathroom so when he comes home, everything will be clean and comfortable. I know that will scare me if they have to remove him from the list for a bit; but after reading about everyone's experiences on here I know it could happen and it doesn't mean he'll be completely off the list for good. I hope you're feeling better as well Connie.

Thanks for the support guys :). My family doesn't really understand and my friends try to, but it's always nice to have somewhere to post where people know what you're talking about!