New member: my dad's story

My aunt turned me on to this forum. I've checked it out recently and now I read it every day. Here's our story...

My parents met when my mom was 15 and my dad was 16. They got into iv drug use. My dad also had a series of bad car accidents and subsequent painful surgeries. They had me when my mom was 22. After they stopped drugs, they were put on methadone. My dad was put on for chronic pain due to his serious surgeries (his abdomen is a mess).

When I was 16 (I'm now 31), we found out they had Hep C. My dad stopped drinking. He was given 2 years to live but told he'd not be a good transplant candidate due to the methadone. He tried the pegasus, but had a horrible reaction so we didn't continue it.

In 2005, my dad went into massive cardiac arrest and an implantable defibrillator was put in to control his heart rhythm.

2 years ago, my dear mother passed away unexpectedly from cancer. We were all devastated. I was pregnant at the time. My hubby and I moved my dad into our home where we've all lived together happily. I've made sure dad gets to all his docs, despite his grief/depression. I arrange all of them and make sure he takes his meds.

Last year, his meld was 17. In Jan. of this year, his defibrillator fired and he was in the icu for 5 days. The incident was brought on b/c his ascites got so bad that they upped his diuretics and he lost 50lbs in 4 days, depleting his body of potassium. He's now down 100lbs total since Jan.

His health has rapidly declined since then. In Jan., I asked his cardiologist if they'd ok him for transplant and he said yes since the heart muscle is in good shape. All this time, the gastro has said he's not ready to talk about transplant. Also, my dad's gallbladder is a wreck and a gastro surgeon said it would be a major operation to get his gallbladder out due to all the scarring from previous surgeries.

In Mar, meld went up to 18. His family doc adjusted his meds as best he could. In Jun, meld up to 19. At few weeks ago, dad was bed bound by this point. He was so weak he could barely get up to go to the bathroom. he got up and passed out in the bathroom, hitting his head. I called the ambulance. He went into the hospital for 5 days. They said he was severely dehydrated. He barely eats or drinks anymore. They adjusted his meds again b/c he developed hypotension. When he stood up, his bp dropped to 60. He had been constipated for a week by that point. His meld then was at 25. I asked the in hospital gastro if he'd be a transplant candidate and he said no, but that the decision would go throughh the transplant center at the U of MN. he also said they detected kidney damage now but hoped that would rebound once dad was hydrated. The pt peeps said he should go to pt rehab in a facility. this was such a hard decision. Dad didn't want to go. Refused to go. Cried. I didn't want him to go. I feel awful that I put him there for the short term. We were told he'd be there 10 days while he rehabbed. its been almost 2 wks now and he's a little stronger, but not much.

When he went into the hospital, I decided to say **** it and just contact the transplant center myself. After weeks of forms and intake on the phone, I finally got his eval scheduled. 3 full days. Ending on his 55th birthday--july 26th.

He's been constipated in the facility so his doc upped the lactulose to 3x/day, which has helped but makes him horribly gassy. painfully so. He doesn't want to put anything in his belly now. You can see how swollen/bloated he is. But I think part of that is fluid since they reduced his lasix/spironolactone. I think he needs a nother parencentesis. It is a constant battle for me to tell him to eat and drink and yesterday we got in another fight. I feel like his grief makes him not want to live. And he's so weak, in addition to his defibrillator and the methadone (which he stopped 6 wks ago), I feel like they'll never approve him for the transplant list.

I'm sort of at my wits end here. And now I'm taking it out on my husband, who has been wonderful. And I feel like I'm missing the fun days of summer with my precious toddler, as I drag her to the facility or make her watch cartoons while I research hep c and liver transplants. Hubby and I are being tested to do the live donor thing, but I don't know how that would work with his job and my being a full time caregiver to my daughter. We have no other family in the area to help. Sorry. I'm rambling now.

thank you so much mamalama! dad has a gastro appt on friday (just his regular gastro) and i will ask about the xifaxan. the He is subtle but def. noticeable at this point. i also want to ask about another parencentesis. thanks also for the nutrition advice. dad does really like jello. yesterday he requested chicken mcnuggets. which i'm sure aren't low sodium. but yesterday the only thing he ate was a yogurt so...

the rehab facility called me earlier. they are calling in a little while for a phone conferene but basically they said they can't help him and they want to talk about options. they said hospice etc. i'd like to bring him home if i can, with whatever services medicaid will provide. at the same time, i want to do what's best for him. he just wants to come home so badly that i'm afraid his depression will worsen if he doesn't. i feel like i'm trying to juggle what's best for 4 people and never coming out right. i appreciate your story and advice!

yeah his gastro always told us that we had to go thru him for transplant and i just found out that i could call up the transplant ctr myself so i did that. the ctr is the U of MN.

i just got off the phone with his rehab facility. his meld is now at 26 and they say he needs long term/hospice care. what are the survivable statistics at a meld of 26? i can't find that info anywhere. i mean, how long does he have, realistically? is he took sick for the surgery? if his meld keeps dropping and his last eval day isn't until jul. 26th, who knows what the meld will be then. also, if he gets listed, about how long would we wait with that score (or likely a higher score)?
thanks so much!

I agree with David. Mayo saved my life...not once, but twice. They also have the shortest wait time for transplant in the nation. If you can't get him in there before the UM transplant eval., go ahead with it and then the results could be sent to Mayo Rochester.

He could be transplanted in the 20s range. I got my transplant at Mayo with a MELD of 25. As to how long he would last without a transplant, nobody can say for sure. It's a very individual thing, but I would guess 6 mos. or less without treatment.

Hugs,
Connie

It's good that they started the eval. process last night. While he is being treated in ICU, his MELD could decrease. That often happens. Did Mayo give a reason why "he would never get a transplant?" If you are comfortable with Fairview, by all means keep him there.

Please do keep us updated. This is just the beginning of a very long haul, so take a deep breath, relax, and go with the flow. Otherwise, you will burn out before the real work has even started.

Hugs,
Connie

I would recommend Mayo clinic over U of MN... Mike went to Mayo clinic in 2010... of course his cancer was to advanced but with the initial transplant teams etc.. Mayo was by far the better... better to drive an hour and be alive than 15 minutes and well you get the pic... Mayo would be my choice...

Oh, Jajalyn, I'm so sorry to hear your dad has taken a turn for the worse. I do hope that he can get a transplant in short order. I know how difficult this must be for both of you, and my prayers are definitely with you both.

Hugs,

Connie

Oh, DAJ, he has taken a terrible turn.

Thank goodness he is at a transplant hospital and not a community hospital...these guys will pull him through if anyone can.

I know at this moment you think you will die if he does...but however this is meant to play out, it will. And you will be okay, either way.

You are a good daughter. You are walking every step of this journey with him. You have done all you can do...though not every story has a happy ending.

When Mike got his transplant he told his nurse before they put him to sleep that he was prepared...that it was okay if he died, becasue he needed to get a transplant and get well, or he needed to die...he could not continue the way it was going. I think he was very sick, and very wise....we all knew he could not continue the way it was going.

Maybe it is your Dad's time...maybe not. It is unclear just now which path he must take.

My thoughts and prayers are with you that however it turns out..

Carol

Thanks for your support everyone!

Dad's still in icu. Meld up to 39 yesterday. Still on breathing tube. He has a bad infection and started in on septic shock. They did a bronchoscopy and sunctioned out the crap he aspirated and they think that's where the infection is. He's on 2 diff. antibiotics, but now is on hold on the list due to the infection. They tell us to not give up, that they still have hope for him. They are putting a pic line in today as well as a dialysis line. He's kidneys took a big blow and aren't bouncing back. They are concerned about his mental status. They stopped pain meds and pressers yesterday, but he's only intermittantly following basic commands, still unable to rouse him.

Meld over 40 now. But no positive cultures for a week so they re-activated him on the list! Head of GI said the call could come tonight or next week. No way of knowing.

Let's hope it's soon. Good luck!

We got the call yesterday afternoon.  Came to hospital and signed consents.  It was an extended criteria donor but surgeon called me at 1:30am today to confirm proceeding.  Dad started surgery at 7am.  By 12:30p we got 2 positive updates from the OR.  However, at 1:30p the surgeon came out and said they couldn't stop the bleeding.  His portal hypertension was very bad, they gave him "buckets" of blood, his heart went into vtach, his temp dropped, they were going to shock him.  They got the new liver in and hooked up, but the bleeding continued.  They packed his abdomen and closed the incision.  He's in the ICU right now. 

The surgeon will update us around 6p.  If the bleeding looks better, they'll let him rest and then go in tomorrow to take out the packing and properly close him. 

If the bleeding is worse, that's it.  The surgeon said he's very critical and an adverse outcome is realistic.  His words.

He was doing so well yesterday.  He was more awake than he's been in 10 days, he recognized me, he laughed (well through the vent) at the kidney doc's jokes.  And then we got those 2 positive updates.  I can't believe this.  I'm waiting for my husband now.  I feel like I should go in and see him in the ICU since this could be it but I don't know if I can. 

No words can describe how devastated I feel.  I feel empty.

Been praying for you since I read this, for a good report on the bleeding, Dajalun, stay strong.

Marie