Lost Son's Updates on Dad with Hep C, Part IV

Alex, A strong suggestion.

Contact University of Iowa pre-transplant yourself. Your Dad is at Loyola I think...so this would be a low MELD, out of your region.

I am with you on how MELD 35 plus natural MELD even survive to get to the top. I will go look at that site a bit more. Big Hugs

Alex, It was SyxX that actually mentioned this to you in your first posts. But I did not know who, nor which center. I remembered a good dual listing place for your Dad was there and dug through tons of posts today to find the info for you.

And SyxX knows your area. I think University of Iowa MELD is about where your Dad sits medically, right now! Let me tell you, Alex, a MELD 35 is not pretty. Chance of survival and the abuse the body takes between now and that number will be great. So... you are HIS caregiver....this is a very good thing to find out for him. From what you say, on your Dad's support team the most informed person is you. He is a good man, has a good family and life, and deserves to live and continue feeding his family, and seeing his kids marry (if they choose this route). Just open up his odds for him to consider ;) Of course this is more complicated and difficult , but we are talking saving a life, here.

I think Susie Sassafrass also is from your area? She was in the process of dual listing when her call came, as I recall. I will go find that info for you. It may be another option.

Mae and Worried Daughter both took family to another region, so they will have some helpful advice. Also, SyxX is not around as much, due to his crazy work... but he looked into this TC for himself at one time and mentioned it to you in an old post. Hugs to Dad. He will be feeling down and this is normal. Carry on! Big Hugs

Ok, Alex, Indiana University Health in Indianapolis is another one. Susie Sassafras was dual listing with them when she finally got "the call". (She had a couple of dry runs)

You want to call the pre-transplant department and find out if they accept your Dad's insurance. Listing themister was met with 2 denials. Mayo AZ did not take his out of state insurance. We moved and now live in AZ...couldn't be happier.

The first biopsy is the biopsy of the wallet. More in a bit. How is Dad? Big Hugs

Hi Lostson.
I am sorry that your dad is in the hospital. Hopefully, he will get the infection treated and be home before you know it!
I definitely recommend having your dad dual listed. Especially if your local transplant center is not transplanting at meld scores lower than 35.
You will need to find out what the other transplant centers require in regards to how far you can actually be living from the transplant hospital. Each center may have different distance requirements. Then, if you are too far away, you will need to consider relocating to that area. That's what we did with my mom. My dad and my mom temporarily relocated while she was waiting for "the call" because where we live was too far a distance. We would take turns to go and visit on weekends or anytime the kids had a few days off from school, etc. Then, when my mom got "the call", my siblings and our families all drove out there and all stayed a few days. Eventually my siblings needed to get back home to work. I stayed there with my dad for 6 weeks until my mom was cleared to come back to our home state.
If you need to relocate, there are usually hotels or places to stay on the various hospital campuses or they may offer special rates locally.
First, make sure that they take your dad's insurance. Then, they will most likely ask your dad and his caregiver(s) to come to their center where your dad may need to have some testing done. They might accept the testing he already had done but may want to do their own. Sometimes the testing process and meeting with the transplant team (hepatologist, surgeon, anesthesiologist, social worker, coordinator, etc) may take about a week or longer.
You definitely should speak with your current transplant coordinator or social worker as they can help you with any questions or concerns and may explain the process of dual listing much, much better and precise.
Hoping your dad is beginning to feel better and you had a good visit with him.
((( hugs)))
WD

Alex,

Some suggestions:

Get the family together if you get the okay to dual list with Iowa or Indiana. See if anyone has relatives or friends that you could stay with for a while, preferably halfway between the two TP centers. Or maybe they know of a cheap studio apt. for rent. Someone will need to take family leave from their jobs, but this is too important not to. An emergency second mortgage on the house?

I hope they will accept a lot of the evaluation tests/procedures that he has already undergone. Don't agonize over him being too sick....most folks ARE if they are on the list. But let's hope he gets rid of the infection, that would temporarily preclude him.

Try Gofundme and have everybody you know on FB, Twitter etc. and ask that they all "share" or re-post if you set up this fundraiser (get greater exposure).

Don't let this interfere with the time that you need prepare for dual listing. I don't think 4 hours is too far, but they will let you know the time constraints. And of course, you will be ready to go on a moment's notice.

Hope I'm not being repetitive, I didn't take much time to read the others' posts, just wanted to respond quickly.

Hope dad gets over this awful infection, I'll be watching for your updates.

By the way, use the Transplant Coordinator at Iowa or wherever you list, they will be your best friend.

Hugs,
Mae

Lost Son, Where is your dad listed? Why won't they look for a liver until he is at 35?

Susan

Susan, there are a shortage of livers, so they are transplanting at an average MELD of 35, give or take, in his current TP Center.

That is why we went to Jax, FL for my brother's TP.

Not everyone can afford to relocate, unfortunately.

He is in excruciating pain at the site of the wound from Monday. It's to the point he says it's a 10 out of 10.

Even the doctor said its possible it could have been done wrong....I guess there is nothing that can be done now but it's concerning they could do it wrong. He even got another one done so they can get a fluid sample and it feels perfectly fine.

This is something I've mentioned a few times but it bares repeating. You would be suprised at the amount of doctors that will do a paracentesis "Blind". Blind meaning they don't use imaging like sonogram to find a spot where they are less likely to hit a organ. There's a lot of guts floating around in that pool of ascites. A hair to far in with that needle and you have a whole nother mess going on. Even if they are using imaging it's still a risk each time it's done. I was fortunate in the fact the top guy over the Lab at the hospital was one of the guys who helped pioneer the use of Doppler imaging. He is a "car guy" like myself. I see him at the drags every now and then still today.

You really have to build a relationship with his doctors. Nurses are even better to my experience, Without the wonderful nurses who made me feel human through all that ordeal it would have been unbearable. They always gave me advice and on a few occasions corrected some overlooked issues by the doctors. After my TIPS I went and bought them a nice bouquet of roses and delivered it with big hugs at the front desk.


Ziff

Most transplants aren't performed until the last second. My surgeon told me that I was a week (at most) from dying, when I got the call.

Alex

Ziff nailed it. You have to build a relationship with them. The more they get to know you, the more they want to help...human nature. Kinda goes along with why we used Mayo's ER instead of the closer hospitals. They become protective of their TP patients when they can put a face to the name, I believe.

Mae,

I will email you shortly so you can have my information. Thanks.

Dad was not doing too good last night when I went to see him. Which is why I was not surprised to hear that his MELD shot up to 26 in 2 days. Yesterday he was in a lot of pain. I will go see him this evening and see what is said.