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

TM,

Yes he is still well able to make his decision on the dual listing and he is on board. Of course when he feels terrible he gets frustrated and sees Iowa as being as far as China. 3.5 hours seems like the other side of the world.

His blood type is O and I did ask what they transplant in Iowa at, I was told that they average 22-25.

He is currently listed at 22 here.

S&S,

His breathing I think is most likely from all the fluid retention and gas build up. He is currently on pain killers and meds for his gas. Hopefully with the LVP today it gives him some much needed relief as he hasn't had any relief since last Monday when they did the initial tap.

Bad thing is I was told not to expect him out until at least Friday. So that's a bummer. But I suppose getting that infection treated is priority #1.

I keep feeling bad for the family a few rooms down that suffered the fate we all hope to avoid. It's a cruel reminder of how important every day is. Getting out of here I need to have my dad scheduled to see the other facility.

I know I need to be very involved but I need to play it smart also on when to kick in a possible FMLA need. Right now I am just using vacation time. Work is starting to back up a bit on me but I will have to get through it.

Post Edited (lostson) : 8/4/2014 9:50:58 AM (GMT-6)

Oh that's good, does your dad have a catheter in or is he able to go to the bathroom by himself? The reason I ask, watch for blood in the urine, I'm hoping so much that he feels better soon.

That is good no catheter, good to hear. Give him a big hug, thinking of you.

I responded to your email Alex, sorry I didn't see it til now, was so busy these last couple of days.
Hang in there :)

Mae

Thanks Mae and David I finally agree that he is in the right place. If only they do the right things...

It is rough because this is his first admission since last year. And as the coordinator told us point blank...he needs to get used to this (I haven't told my dad that) one visit at a time. I'm sure the taps will get more and more frequent. I just hope we can keep infections out.

I am silently optimistic that things at the Iowa facility will turn out well. I hope I am not disappointed. I might also look at some other facilities just to see if perhaps I am missing something.

Ziff, I agree I was a little upset that an intern attempted the tap last night. My dads roomate said "well that was a slap in the face and a needless poke" (He is a funny guy btw with a great sense of humor despite his ordeal) But the tap that was botched was not an intern I don't believe. All the more reason why I am now happy the intern was unsuccessful. I can't imagine another bruise like the other.

I am also hoping the kidneys start getting back. His urine flow was much much better today. He was given his diuretics yesterday to resume so we will see how it goes. Today was a good amount in that jug.

I know this is the first setback of what I hear are many to come...but God I hope they aren't so frequent.

I would definitely direct any questions that you have directly to the coordinator at either the current center or the new center. You want to make sure that whatever your dad signs you are both comfortable with.
Being dual listed would never compromise your dad's care. Actually it is an advantage because your dad will be having 2 transplant teams assisting in his care.
If possible, send them any records, copies of current scans (MRI, CT, ultrasound) that you may have to help speed up the process.

How is your dad doing today?

Just a question due to ignorance on my part: is there a billing issue wrt dual listings and our "ever so cost minded" insurance companies? I'm not familiar with any of this and I would be wondering if there's additional costs in having a dual listing that the insurance folks might be not willing to fund.

I have been swamped at work. A so are you going to dual list at Iowa? If you do and I ever have to list I will ask you questions. Iowa has a 22 average MELD for transplant. I read recently it is lower. I am keeping it in my back wallet as its only 3 hours away.

syxx, yes I have decided to give it a go. I have officially completed all the paperwork and spoken with the people I need to. I really wish I had done this sooner since as you mentioned their average is around 22 (I was told between 22-25) My dad as of today was at 25. Obviously we still have to go through an initial visit and get approved. But once it is done (Which hope it is) I will feel a bit more at ease in the aspect that I did more than just put all my eggs in one basket when there was another option.

Once I get established there by all means ask away and I will be glad to help out. I hope I can have a success story for you.

Sandia, thanks. Today I for sure was a lot calmer and took some very deep breaths.

TM,

Dad is doing better today. In fact they are doing another LVP today and they said if he feels fine this afternoon he might even be discharged. They already scheduled him for another tap next week as they feel he will need it (Not sure if they are assuming it will be the norm now or what) but he is already set for the procedure and a follow up at the end of the week.

As for the dual listing, it has so far been pretty straightforward. I contacted the University of Iowa Hospital and Clinics via email off of their transplant departments webpage for more information. I was very pleased when I heard back from one of the Administrative officers within an hour! She was very informative on what would be needed.

By the next day I had submitted the requested basic information which is (Name, age, address, etc.) and basic questions on his condition such as cause of his liver disease, is he currently hospitalized and where is he being treated, and a few others. Finally I needed to get the Insurance information over.

By day 3 I was contacted via phone by a coordinator with the next steps which are to have a consent form to release medical records. I took care of that yesterday.

The next steps are to review the medical records, confirm the insurance is good and will allow it and then based on those things, they will schedule a visit to visit the facility and go over the same steps as we did at our current facility, which are:

Meet the transplant team and speak with (Surgeons, TP coordinator, social worker, financial coordinator, psychologist, nutritionist, etc.) As well as run some labs as they see needed.

After that it will get reviewed and determined if he is to be listed.

Those are the details I have as of now, but I am sure as things progress there will be more specifics that I will keep everyone informed about.

When I am there I will ask regardless to get that info for you. If it is not listed perhaps it is not a requirement. Hope not!

Thanks for putting this gem out there as it has given me another burst of hope. Better late then never is so true, but I just think to myself how it would have been should I have done this a lot sooner. He might have already been blessed with a transplant. But I just hope he can hold up long enough and stay healthy enough to get to that point.